I have the sodium-channel form of myotonia congenita. More here.
This is my last blog post here; I haven't quite decided whether I'll be adding to the cramp fasciculation blog or not.
At any rate, I'll keep the old material available. Feel free to link to or quote from either; I do ask, however, that you acknowledge the source and the author, Another Invisible.
Tuesday, February 8, 2011
Saturday, January 29, 2011
Down to Sleep
I'm pretty sure that I'm going to be shutting down the blog soon. The whole idea of this blog was to document my journey to diagnosis, and I'm almost there.
However, I want to address the issue of sleep and cognitive function before I put the blog itself to sleep. I read a question on a forum the other day, and had the urge to respond to the poster with, "A lack of sleep can do that!" But I didn't. Not because I didn't want to help, but because I knew - I know - just how patronizing a statement like that can sound when a person is facing a serious issue. Too many people throw out statements about sleep and stress and overwork as though they are parachutes that can billow out and cover all of a person's symptoms. The last thing I wanted to do was make the poster, likely a person with a very real physical disorder, feel dismissed. And I wasn't sure how to say what I wanted to without sounding dismissive.
So I'll write it up here, and the next time I need to pass this information along, I can offer words of support and encouragement and belief and embed a link.
This is purely an anecdotal entry; in an earlier entry, I said I'd found research that indicated severe sleep deprivation could cause cognitive issues, and that's true - but this entry is just about my personal experience.
The muscle tightness I experience leaves me with constant, excruciating pain, even on the best of good days. As a consequence, I don't sleep well. I usually drift off out of sheer physical exhaustion about three or four hours before I have to wake up and get the kids off to school. I don't sleep soundly during these three or four hours. I don't know if that is because of the pain, or if I don't let myself sleep deeply because I know the alarm clock won't rouse me if I do.
Before this past summer began, it had become impossible to deny that my thinking had become muddled. I was using the wrong words for objects several times daily, or having trouble finding the words for objects. It was difficult to read anything longer than a magazine article; I simply couldn't concentrate. I would rack my brain to remember how to complete tasks I'd done for years; I would misspell simple words in the most embarrassing ways. (Here, think they're, there, and their, which I've known how to distinguish since at least the second grade. As an aside, rack also looks wrong, doesn't it? Looks like it should be wrack, but it shouldn't.)
But that all changed over the summer, when my husband began working second shift and the kids did not have to wake up for school. Clearly, a second-shift schedule brings its own set of problems, but it was wonderful for both my husband and myself in terms of sleep. The kids would be in bed when he got home, and he and I could stay up as late as we liked. Neither of us went to bed until we were tired enough to sleep, and both of us slept until our bodies told us to wake up. Adolescents being adolescents, we were still both up before the children.
I began thinking more clearly. I stopped switching out my words. I tackled a few books I'd been wanting to read. I even worked up the nerve to tackle some online IQ tests; nothing official (those things are expensive), but legitimate, psychologist-created tests and not the game-like tests advertised on social networking sites and the like. My results reassured me that the scores I'd gotten on an earlier set of tests (taken with a migraine and on four hours' sleep) probably weren't truly reflective of my scores under normal circumstances. (I'd known they weren't in line with scores I'd received on IQ tests I'd taken years ago, but that didn't mean I couldn't have had a real drop.)
The extra sleep didn't, however, affect my muscle tightness or pain. It also didn't give me a great deal of extra energy. Some, yes; a great deal, no. Fatigue is just part of this; it's the result of energy expenditure in the muscles that isn't visible to the eye.
At one time, I would have thought that a person with sleep deprivation severe enough to cause such muddled thinking as I experienced would have been unable to walk or converse or drive. That's just not true.
Now, with my husband back on a regular work schedule and one semester of the new school year down, I've noticed a bit of word switching creeping back into my conversation. Fortunately, in a week or so I'll likely be on new medications that my doctor assures me will work rapidly and well, so I'll get good sleep once again.
I'd better start storing all the sleep I can possibly get - in a couple of years, the kids will be dating and driving.
However, I want to address the issue of sleep and cognitive function before I put the blog itself to sleep. I read a question on a forum the other day, and had the urge to respond to the poster with, "A lack of sleep can do that!" But I didn't. Not because I didn't want to help, but because I knew - I know - just how patronizing a statement like that can sound when a person is facing a serious issue. Too many people throw out statements about sleep and stress and overwork as though they are parachutes that can billow out and cover all of a person's symptoms. The last thing I wanted to do was make the poster, likely a person with a very real physical disorder, feel dismissed. And I wasn't sure how to say what I wanted to without sounding dismissive.
So I'll write it up here, and the next time I need to pass this information along, I can offer words of support and encouragement and belief and embed a link.
This is purely an anecdotal entry; in an earlier entry, I said I'd found research that indicated severe sleep deprivation could cause cognitive issues, and that's true - but this entry is just about my personal experience.
The muscle tightness I experience leaves me with constant, excruciating pain, even on the best of good days. As a consequence, I don't sleep well. I usually drift off out of sheer physical exhaustion about three or four hours before I have to wake up and get the kids off to school. I don't sleep soundly during these three or four hours. I don't know if that is because of the pain, or if I don't let myself sleep deeply because I know the alarm clock won't rouse me if I do.
Before this past summer began, it had become impossible to deny that my thinking had become muddled. I was using the wrong words for objects several times daily, or having trouble finding the words for objects. It was difficult to read anything longer than a magazine article; I simply couldn't concentrate. I would rack my brain to remember how to complete tasks I'd done for years; I would misspell simple words in the most embarrassing ways. (Here, think they're, there, and their, which I've known how to distinguish since at least the second grade. As an aside, rack also looks wrong, doesn't it? Looks like it should be wrack, but it shouldn't.)
But that all changed over the summer, when my husband began working second shift and the kids did not have to wake up for school. Clearly, a second-shift schedule brings its own set of problems, but it was wonderful for both my husband and myself in terms of sleep. The kids would be in bed when he got home, and he and I could stay up as late as we liked. Neither of us went to bed until we were tired enough to sleep, and both of us slept until our bodies told us to wake up. Adolescents being adolescents, we were still both up before the children.
I began thinking more clearly. I stopped switching out my words. I tackled a few books I'd been wanting to read. I even worked up the nerve to tackle some online IQ tests; nothing official (those things are expensive), but legitimate, psychologist-created tests and not the game-like tests advertised on social networking sites and the like. My results reassured me that the scores I'd gotten on an earlier set of tests (taken with a migraine and on four hours' sleep) probably weren't truly reflective of my scores under normal circumstances. (I'd known they weren't in line with scores I'd received on IQ tests I'd taken years ago, but that didn't mean I couldn't have had a real drop.)
The extra sleep didn't, however, affect my muscle tightness or pain. It also didn't give me a great deal of extra energy. Some, yes; a great deal, no. Fatigue is just part of this; it's the result of energy expenditure in the muscles that isn't visible to the eye.
At one time, I would have thought that a person with sleep deprivation severe enough to cause such muddled thinking as I experienced would have been unable to walk or converse or drive. That's just not true.
Now, with my husband back on a regular work schedule and one semester of the new school year down, I've noticed a bit of word switching creeping back into my conversation. Fortunately, in a week or so I'll likely be on new medications that my doctor assures me will work rapidly and well, so I'll get good sleep once again.
I'd better start storing all the sleep I can possibly get - in a couple of years, the kids will be dating and driving.
Monday, January 24, 2011
Friday, November 5, 2010
SCN4A Mutation
Well, I've had other test results come back. The only thing abnormal is a mutation in my SCN4A gene. The Athena test results say that the clinical significance of this result is unknown, because the variation is of a type similar to both disease-causing variations and benign changes seen in the general population.
However, many other mutations in the SCN4A gene have been linked to muscle disease.
I've added a more thorough write-up about the test result and SCN4A here, on the Cramp Fasciculation blog.
However, many other mutations in the SCN4A gene have been linked to muscle disease.
I've added a more thorough write-up about the test result and SCN4A here, on the Cramp Fasciculation blog.
Friday, October 8, 2010
Wednesday, August 25, 2010
Of Syndromes and Spectrums (crossposted to the sister blog, Cramp Fasciculation Syndrome)
I've said it before, but it bears repeating: CFS and neuromyotonia are not BFS. Part of the problem lies in the medical literature; even Adams and Victor's Principles of Neurology describes CFS as both "probably a variant" of BFS and as "a mild form of neuromyotonia."
To understand how these syndromes can be the same and yet so different, it's important to know what a syndrome is. A syndrome is simply a collection of medical commonalities.
As a collection of commonalities, BFS, CFS, and neuromyotonia are essentially the same syndrome with drastically differing levels of severity.
But this does not mean that they have the same cause.
Indeed, a singular cause for all three has not been established. What is known is that both CFS and neuromyotonia can be acquired, hereditary, or paraneoplastic. A few patients with CFS, and more, but not all, with neuromyotonia, demonstrate elevated voltage-gated potassium channel (VGKC) antibody levels through blood serum tests.
Though researchers think there may be many catalysts for the development of these disorders, they are in complete agreement that they symptoms of CFS and neuromyotonia are caused by physical processes.
In contrast, patients with BFS never show elevated VGKC antibody levels. Some researchers theorize that BFS is indeed caused by the same physical processes that occur in those with CFS or neuromyotonia. This is quite possible in many cases, since the sensitivity of the antibodies tests are questioned. Other researchers theorize that the symptoms of BFS are a physical manifestation of stress. It could be that there are several causes for the twitching known as BFS.
My point is not that those with BFS are stressed or unbalanced. Some may be, and some clearly are not. My point is that there is unanimous agreement among researchers that CFS and neuromyotonia are not caused by stress; they are physical disorders with physical causes.
To understand how these syndromes can be the same and yet so different, it's important to know what a syndrome is. A syndrome is simply a collection of medical commonalities.
As a collection of commonalities, BFS, CFS, and neuromyotonia are essentially the same syndrome with drastically differing levels of severity.
But this does not mean that they have the same cause.
Indeed, a singular cause for all three has not been established. What is known is that both CFS and neuromyotonia can be acquired, hereditary, or paraneoplastic. A few patients with CFS, and more, but not all, with neuromyotonia, demonstrate elevated voltage-gated potassium channel (VGKC) antibody levels through blood serum tests.
Though researchers think there may be many catalysts for the development of these disorders, they are in complete agreement that they symptoms of CFS and neuromyotonia are caused by physical processes.
In contrast, patients with BFS never show elevated VGKC antibody levels. Some researchers theorize that BFS is indeed caused by the same physical processes that occur in those with CFS or neuromyotonia. This is quite possible in many cases, since the sensitivity of the antibodies tests are questioned. Other researchers theorize that the symptoms of BFS are a physical manifestation of stress. It could be that there are several causes for the twitching known as BFS.
My point is not that those with BFS are stressed or unbalanced. Some may be, and some clearly are not. My point is that there is unanimous agreement among researchers that CFS and neuromyotonia are not caused by stress; they are physical disorders with physical causes.
Monday, August 9, 2010
Medication Setback (crossposted to the sister blog, Cramp Fasciculation Syndrome)
I was prescribed carbamazepine, sometimes marketed as Tegretol. The neurologist who prescribed it had me start with less than a half dose and build up slowly to a full dose.
I didn't think too much of the wooziness; after all, one of the reasons for starting small was that the medicine can give users a drunken feeling and it's best to adjust to its effects gradually.
I also wasn't too concerned about the flu-like symptoms; I just thought they were part of the drunken feeling I was supposed to be experiencing. About the time I started taking the full dose, I noticed swollen lymph nodes. That was a little more concerning, but I hoped they'd go away.
Last night I noticed a rash, first on my legs and arms, and then on my back. By today, it was all over my body, including my face.
The itch from it is agonizing.
The neurologist who prescribed the medicine said to stop taking it immediately and to see my general practitioner. I'm still waiting for my general practitioner's office to get back to me. I've already explained my symptoms to the receptionist; now I'm just waiting to see if the doctor wants to see me, or if he's just going to call in a prescription for steroids.
I have no idea what I'll need to try next for the muscle tightness and pain; the neurologist won't prescribe anything until this reaction clears up.
I'm posting a couple of photos of my legs/feet. They don't really do this rash justice, though, because the flash largely washed out the redness:
I didn't think too much of the wooziness; after all, one of the reasons for starting small was that the medicine can give users a drunken feeling and it's best to adjust to its effects gradually.
I also wasn't too concerned about the flu-like symptoms; I just thought they were part of the drunken feeling I was supposed to be experiencing. About the time I started taking the full dose, I noticed swollen lymph nodes. That was a little more concerning, but I hoped they'd go away.
Last night I noticed a rash, first on my legs and arms, and then on my back. By today, it was all over my body, including my face.
The itch from it is agonizing.
The neurologist who prescribed the medicine said to stop taking it immediately and to see my general practitioner. I'm still waiting for my general practitioner's office to get back to me. I've already explained my symptoms to the receptionist; now I'm just waiting to see if the doctor wants to see me, or if he's just going to call in a prescription for steroids.
I have no idea what I'll need to try next for the muscle tightness and pain; the neurologist won't prescribe anything until this reaction clears up.
I'm posting a couple of photos of my legs/feet. They don't really do this rash justice, though, because the flash largely washed out the redness:
Friday, July 23, 2010
Terrific Article to Pass on to Friends, Family, and Coworkers
I have to share this fabulous article by Robyn Heller Gerbush that I found on the website DiversityInc.:
'But You Look So Good!' and 7 Other Things NOT to Say to a Person with a Non-Visible Disability
'But You Look So Good!' and 7 Other Things NOT to Say to a Person with a Non-Visible Disability
Tuesday, July 13, 2010
Muscle Biopsy Results
Quote:
Microscopic Diagnosis:
Skeletal muscle, right deltoid, parts A, B, and C, muscle biopsies
- Skeletal muscle with randomly scattered (mildly) atrophic fibers by light microscopy and occasional fibers with internalized nuclei and z-line streaming by electron microscopy, nonspecific.
I don't know what this means; Googling doesn't turn up much. From the information I have been able to glean, however, it seems as though atrophic fibers, internal nuclei, and z-line streaming are all characteristics that, when seen in large numbers, indicate problems, but when seen in small numbers (as in my biopsy) may or may not indicate problems. Vague, indeed. The surgeon did say that the atrophy referred to was not "real atrophy, just slight weakness."
My neurologist is on maternity leave, so I have an appointment with another neurologist in the practice. I hope he's good. I'm a little skittish when it comes to neurologists in general now, and especially skittish when it comes to neurologists in this particular practice.
Microscopic Diagnosis:
Skeletal muscle, right deltoid, parts A, B, and C, muscle biopsies
- Skeletal muscle with randomly scattered (mildly) atrophic fibers by light microscopy and occasional fibers with internalized nuclei and z-line streaming by electron microscopy, nonspecific.
I don't know what this means; Googling doesn't turn up much. From the information I have been able to glean, however, it seems as though atrophic fibers, internal nuclei, and z-line streaming are all characteristics that, when seen in large numbers, indicate problems, but when seen in small numbers (as in my biopsy) may or may not indicate problems. Vague, indeed. The surgeon did say that the atrophy referred to was not "real atrophy, just slight weakness."
My neurologist is on maternity leave, so I have an appointment with another neurologist in the practice. I hope he's good. I'm a little skittish when it comes to neurologists in general now, and especially skittish when it comes to neurologists in this particular practice.
Wednesday, May 12, 2010
The Biopsy and Other Stuff
I had the muscle biopsy; it was an open biopsy with full anesthesia and was of my right deltoid muscle (bicep).
I'm a little dismayed that the desk attendant misinformed me. She said the biopsy would be on my thigh; therefore, when the nurse who came to insert the needle for my IV asked me where I was going to be cut, that's what I told her. She, thinking the hand we used didn't matter, tried to insert the needle into my right hand. I suppose it's a good thing she wasn't able to find a usable vein.
The nurses before the procedure were great, but those I dealt with afterward were rude, rude, rude. I came to awareness with one yelling at me because she was trying to change my gown and I hadn't been moving the way she wanted me to. After I asked for pain medication and had to wait half an hour for it, a second nurse lectured me about waiting "until a 5 became a 9 [on a 1 - 10 pain rating scale]" to ask for pain medicine. Um, I became conscious at an 8 and asked for pain medication then. Stuff it.
Instead of using the words or the tone I wanted to, however, I simply said, "I woke up in an 8." She then snarkily "reminded" me that I'd had a choice of whether to receive intravenous pain medication and stay in the recovery room an extra half hour, or to accept Tylenol 3 so that I could be moved into a room to see my husband. She was wrong, but this time I didn't even try to set her straight. The choice the original nurse (the one who yelled at me to move) had given me was between IV medication and Percoset. I've had Percoset. It works much better than Tylenol 3, and I'm not sure that I would have chosen Tylenol 3 had that been the alternative to the IV with which I was presented. Regardless, either medication should have been administered a good half hour before, at the time it was offered; instead, both nurses promised medication and left me sitting for several minutes while attending to other business.
I know medical professionals are busy, but that kind of behavior is inexcusable. Instead of saying, "I'm really busy right now; I'll get to it as soon as I can, but it might take a few minutes," the preferred alternative is to make a patient coming out of surgery wait and, unprovoked, accuse that patient of making bad choices? I hadn't nagged and hadn't criticized. I think the second nurse just felt the need to blame someone else for the time it took her to get the medicine to me, and when her first way of placing blame didn't work out, she moved on to a second to save face. Ridiculous.
It took several days for me to get a full range of arm motion back. I have a follow-up appointment tomorrow (the two week mark), but that's just to see how the incision is healing and to remove the stitches. I won't have the test results for another couple of weeks.
A few days before the biopsy, I got a terrible, noncontagious rash on my legs. Itchy red bumps. Oral steroids seem to have cleared it up.
I recently stumbled across information about a disorder called neuromyotonia, or Isaac's Syndrome. It consists of muscle fasciculations, muscle cramping, and extreme muscle tightness, and it's in the same family of disorders (peripheral nerve hyperexcitability disorders) as benign fasciculation syndrome and cramp fasciculation syndrome. It seems a tell-tale diagnostic sign is an abnormal EMG. I wanted to discuss this with my neurologist before the surgery (since muscle biopsies are sometimes useless for diagnosing Isaacs), but her receptionist told me she wanted me to make an appointment after I got the results of the muscle biopsy. I was kind of hoping to avoid being cut into if it wasn't necessary, but maybe she just wanted to explore all possibilities. Odd, though, since she previously seemed to want to order the biopsy only after exhausting all other possibilities.
Oh, the TENS machine really isn't all that. It feels good in the spots to which the electrodes attach, but any chain-reaction muscle tightening that happened before still happens now. For example, when I use my arm, my jaw still becomes painfully tight. Also, even though I may not feel pain in the muscles to which the electrodes are attached while the electrodes are attached, the muscles themselves still become sore from overuse. When the machine comes off, I'm in a lot of pain.
I'm a little dismayed that the desk attendant misinformed me. She said the biopsy would be on my thigh; therefore, when the nurse who came to insert the needle for my IV asked me where I was going to be cut, that's what I told her. She, thinking the hand we used didn't matter, tried to insert the needle into my right hand. I suppose it's a good thing she wasn't able to find a usable vein.
The nurses before the procedure were great, but those I dealt with afterward were rude, rude, rude. I came to awareness with one yelling at me because she was trying to change my gown and I hadn't been moving the way she wanted me to. After I asked for pain medication and had to wait half an hour for it, a second nurse lectured me about waiting "until a 5 became a 9 [on a 1 - 10 pain rating scale]" to ask for pain medicine. Um, I became conscious at an 8 and asked for pain medication then. Stuff it.
Instead of using the words or the tone I wanted to, however, I simply said, "I woke up in an 8." She then snarkily "reminded" me that I'd had a choice of whether to receive intravenous pain medication and stay in the recovery room an extra half hour, or to accept Tylenol 3 so that I could be moved into a room to see my husband. She was wrong, but this time I didn't even try to set her straight. The choice the original nurse (the one who yelled at me to move) had given me was between IV medication and Percoset. I've had Percoset. It works much better than Tylenol 3, and I'm not sure that I would have chosen Tylenol 3 had that been the alternative to the IV with which I was presented. Regardless, either medication should have been administered a good half hour before, at the time it was offered; instead, both nurses promised medication and left me sitting for several minutes while attending to other business.
I know medical professionals are busy, but that kind of behavior is inexcusable. Instead of saying, "I'm really busy right now; I'll get to it as soon as I can, but it might take a few minutes," the preferred alternative is to make a patient coming out of surgery wait and, unprovoked, accuse that patient of making bad choices? I hadn't nagged and hadn't criticized. I think the second nurse just felt the need to blame someone else for the time it took her to get the medicine to me, and when her first way of placing blame didn't work out, she moved on to a second to save face. Ridiculous.
It took several days for me to get a full range of arm motion back. I have a follow-up appointment tomorrow (the two week mark), but that's just to see how the incision is healing and to remove the stitches. I won't have the test results for another couple of weeks.
A few days before the biopsy, I got a terrible, noncontagious rash on my legs. Itchy red bumps. Oral steroids seem to have cleared it up.
I recently stumbled across information about a disorder called neuromyotonia, or Isaac's Syndrome. It consists of muscle fasciculations, muscle cramping, and extreme muscle tightness, and it's in the same family of disorders (peripheral nerve hyperexcitability disorders) as benign fasciculation syndrome and cramp fasciculation syndrome. It seems a tell-tale diagnostic sign is an abnormal EMG. I wanted to discuss this with my neurologist before the surgery (since muscle biopsies are sometimes useless for diagnosing Isaacs), but her receptionist told me she wanted me to make an appointment after I got the results of the muscle biopsy. I was kind of hoping to avoid being cut into if it wasn't necessary, but maybe she just wanted to explore all possibilities. Odd, though, since she previously seemed to want to order the biopsy only after exhausting all other possibilities.
Oh, the TENS machine really isn't all that. It feels good in the spots to which the electrodes attach, but any chain-reaction muscle tightening that happened before still happens now. For example, when I use my arm, my jaw still becomes painfully tight. Also, even though I may not feel pain in the muscles to which the electrodes are attached while the electrodes are attached, the muscles themselves still become sore from overuse. When the machine comes off, I'm in a lot of pain.
Wednesday, March 24, 2010
Test Results and General Update
Neuropsychiatric Evaluation: I didn't particularly present with anxiety, and my scores, according to the doctor, were very good. My overall IQ was in the high average range, and my verbal IQ was in the gifted range. My weaknesses were mathematics and spatial relationships. I had excellent recall. The recall result (99th percentile) just floored me; I was sure I had tanked that part of the test.
Unlike the doctor, I do not think my scores were very good. I think they were disastrous and completely prove my point that something cognitive is happening. Years ago, my IQ tested in the gifted range overall, and the number was much higher than the verbal score I just received. People shouldn't lose IQ points; it's possible to get a score that's a few points off (15 at most, from what I've read) under normal circumstances, but a score shouldn't be this drastically different. A score that is high average looks great to a tester who doesn't know what my cognitive abilities used to be. But it depresses the hell out of me. I didn't even bother arguing with the doctor when he gave me my results. I don't have proof of my former score, and I don't want to be seen as an obstinate patient. But when I get this all figured out and my thinking has become more clear, I will be taking another test, even if I have to do it at my own expense.
Latest Blood Tests: They came back negative.
Muscle Biopsy: The surgeon insists on a consultation before he'll schedule the surgery. I have that initial appointment scheduled for early next month.
Physical Therapist: Not a total waste of time. I think the exercises will be, because my issue is not one of strength but of endurance, but I'll be cooperative and do them.
The real boon, though, is that I'm being prescribed a Transcutaneous Electrical Nerve Stimulator (TENS) machine. It's an electrical muscle stimulation machine. The therapist said point blank that it doesn't change whatever process in the body is causing pain, but it "covers up" the pain with other sensations. An acupuncturist I once saw used this on me. It has no lasting effect, but it feels wonderful when it's being used. I'll be able to wear my portable machine (which I'm picking up tomorrow) during most routine activities, so I'll be able to get more done. Thankfully.
Epidurals: Still not working. The doctor said if this last shot didn't work, we'd have to look at other options. At this point, I'm not willing to bother. I just don't have the time or energy to chase more than one treatment at a time, and I know that I'll at least get some relief with the device I'm getting from the physical therapist.
My sleep is awful. My primary care physician has wanted to put me on sleeping pills, and I've resisted. I think I'm going to call and ask for that prescription after all [author's note: I changed my mind about this and never asked for sleeping pills]. My sleeping patterns are almost completely backward. Completely backward, I could adjust to and work with. Almost completely backward is something else entirely and leave me unable to even guess at what my energy levels will be.
That's it. I guess this all sounds pretty dismal, but I'm actually feeling optimistic. With the TENS machine, I'll be able to get more work done. And I still suspect that severe sleep deprivation/the wrong kind of sleep is causing a lot of my cognitive problems. With the sleeping pills, I'll be able to get on a schedule and, hopefully, get some of my energy and brain function back.
Unlike the doctor, I do not think my scores were very good. I think they were disastrous and completely prove my point that something cognitive is happening. Years ago, my IQ tested in the gifted range overall, and the number was much higher than the verbal score I just received. People shouldn't lose IQ points; it's possible to get a score that's a few points off (15 at most, from what I've read) under normal circumstances, but a score shouldn't be this drastically different. A score that is high average looks great to a tester who doesn't know what my cognitive abilities used to be. But it depresses the hell out of me. I didn't even bother arguing with the doctor when he gave me my results. I don't have proof of my former score, and I don't want to be seen as an obstinate patient. But when I get this all figured out and my thinking has become more clear, I will be taking another test, even if I have to do it at my own expense.
Latest Blood Tests: They came back negative.
Muscle Biopsy: The surgeon insists on a consultation before he'll schedule the surgery. I have that initial appointment scheduled for early next month.
Physical Therapist: Not a total waste of time. I think the exercises will be, because my issue is not one of strength but of endurance, but I'll be cooperative and do them.
The real boon, though, is that I'm being prescribed a Transcutaneous Electrical Nerve Stimulator (TENS) machine. It's an electrical muscle stimulation machine. The therapist said point blank that it doesn't change whatever process in the body is causing pain, but it "covers up" the pain with other sensations. An acupuncturist I once saw used this on me. It has no lasting effect, but it feels wonderful when it's being used. I'll be able to wear my portable machine (which I'm picking up tomorrow) during most routine activities, so I'll be able to get more done. Thankfully.
Epidurals: Still not working. The doctor said if this last shot didn't work, we'd have to look at other options. At this point, I'm not willing to bother. I just don't have the time or energy to chase more than one treatment at a time, and I know that I'll at least get some relief with the device I'm getting from the physical therapist.
My sleep is awful. My primary care physician has wanted to put me on sleeping pills, and I've resisted. I think I'm going to call and ask for that prescription after all [author's note: I changed my mind about this and never asked for sleeping pills]. My sleeping patterns are almost completely backward. Completely backward, I could adjust to and work with. Almost completely backward is something else entirely and leave me unable to even guess at what my energy levels will be.
That's it. I guess this all sounds pretty dismal, but I'm actually feeling optimistic. With the TENS machine, I'll be able to get more work done. And I still suspect that severe sleep deprivation/the wrong kind of sleep is causing a lot of my cognitive problems. With the sleeping pills, I'll be able to get on a schedule and, hopefully, get some of my energy and brain function back.
Sunday, March 14, 2010
Epidurals and Psych Testing, Oh Boy!
My primary care physician still thinks it's possible that pinched nerves in my cervical spine are causing some (but definitely not all) of the symptoms in my arms. To that end, he sent me to a pain specialist for an epidural of cortisone. The idea is that the cortisone, one injected into the spine, will disperse through the canals coming off of the spine and shrink any tissue that happens to be inflamed and is pinching the nerves. Sometimes the effect lasts for months, and sometimes it is a permanent fix.
There is a little guesswork involved in finding the very spot to inject the medicine, however, and sometimes it's necessary to get more than one shot. The first shot, which I had more than a week ago, has not helped. I will get another in a few days.
I also had some psychological testing the other day. There were two reasons for this. The first reason is that I want to swiftly and surely shut down any "it's all in her head" arguments by having evidence that I'm completely mentally healthy. I was pretty laid back and kept my sense of humor about me when taking the tests, so I really don't think they're going to show any abnormal stress or anxiety.
The second reason is that I want to have a baseline, a record documenting my mental acuity right now so that it will be easy to see if that acuity changes in the future.
My gut feeling about the testing is that I scored well verbally, was weak with spatial relationships (never a strong suit), showed mathematical proficiency but not much else (what would I expect after being out of school for so long?), and demonstrated some severe weaknesses where memory is concerned. But those are just my guesses; I won't know the results for possibly as long as two months.
I have a followup appointment with my new neurologist the day before the second epidural. She told me at my last visit that if the bloodwork she ordered all came back negative, she'd be ordering a muscle biopsy. I know from my primary care physician that all of my bloodwork was negative, so I'm guessing a muscle biopsy is in my future. I'd love the idea if muscle biopsies generally solved such medical mysteries as mine. From what I've read, though, it seems they're like all the blood tests I've had - they may or may not show something that a person may or may not have.
I'll update the blog when I know more. Or when I know only exactly what I know now but have another test result.
There is a little guesswork involved in finding the very spot to inject the medicine, however, and sometimes it's necessary to get more than one shot. The first shot, which I had more than a week ago, has not helped. I will get another in a few days.
I also had some psychological testing the other day. There were two reasons for this. The first reason is that I want to swiftly and surely shut down any "it's all in her head" arguments by having evidence that I'm completely mentally healthy. I was pretty laid back and kept my sense of humor about me when taking the tests, so I really don't think they're going to show any abnormal stress or anxiety.
The second reason is that I want to have a baseline, a record documenting my mental acuity right now so that it will be easy to see if that acuity changes in the future.
My gut feeling about the testing is that I scored well verbally, was weak with spatial relationships (never a strong suit), showed mathematical proficiency but not much else (what would I expect after being out of school for so long?), and demonstrated some severe weaknesses where memory is concerned. But those are just my guesses; I won't know the results for possibly as long as two months.
I have a followup appointment with my new neurologist the day before the second epidural. She told me at my last visit that if the bloodwork she ordered all came back negative, she'd be ordering a muscle biopsy. I know from my primary care physician that all of my bloodwork was negative, so I'm guessing a muscle biopsy is in my future. I'd love the idea if muscle biopsies generally solved such medical mysteries as mine. From what I've read, though, it seems they're like all the blood tests I've had - they may or may not show something that a person may or may not have.
I'll update the blog when I know more. Or when I know only exactly what I know now but have another test result.
Wednesday, January 27, 2010
Nice Having an Answer while It Lasted
According to two different neurologists, the problem is not cervical spondylosis; my spondylosis is just too mild. The first neurologist was completely dismissive in general, but agreed to order a nerve conduction velocity/electromyography (NCV/EMG) study anyway. He was certain the tests would come back negative.
The NCV was negative, but the EMG was not. And the neurologist administering the test was not dismissive at all, so I'll be seeing her from now on.
I saw her yesterday, in fact. She said the tests show no sign of motor neuron disease (a very good thing), but that they show more fibrillations than fasciculations. Had they shown nothing, or fasciculations only, it might have indicated something called cramp fasciculation syndrome (CFS). In fact, the doctor still brought it up as a possibility, but I've read up on the syndrome and know that it doesn't account for some of my symptoms; when I told her this, she agreed and took that diagnosis off the table.
She's ordered a spate of blood tests that don't often get ordered, more specialized tests to look for Sjogren's, lead poisoning, sarcoidosis, and all kinds of other stuff, and she's also ordered an MRI of my lumbar spine. If everything comes back negative, she'll be ordering a muscle biopsy.
The NCV was negative, but the EMG was not. And the neurologist administering the test was not dismissive at all, so I'll be seeing her from now on.
I saw her yesterday, in fact. She said the tests show no sign of motor neuron disease (a very good thing), but that they show more fibrillations than fasciculations. Had they shown nothing, or fasciculations only, it might have indicated something called cramp fasciculation syndrome (CFS). In fact, the doctor still brought it up as a possibility, but I've read up on the syndrome and know that it doesn't account for some of my symptoms; when I told her this, she agreed and took that diagnosis off the table.
She's ordered a spate of blood tests that don't often get ordered, more specialized tests to look for Sjogren's, lead poisoning, sarcoidosis, and all kinds of other stuff, and she's also ordered an MRI of my lumbar spine. If everything comes back negative, she'll be ordering a muscle biopsy.
Thursday, December 17, 2009
Bam! Found Something; Can't Believe I Didn't Think of It Before
Must be the sleep deprivation.
Yes, that's it - sleep deprivation!
I've obviously slept in the past dozen years, but I haven't slept well. I average about five hours of restless sleep a night, and sometimes I take long (one- or two-hour) naps. Even if I napped daily (I don't), I wouldn't be getting my eight hours in. Now, it's true that many people don't need eight hours. But even people who don't need much sleep need good sleep in order to function properly.
My sleep isn't good sleep. I probably don't sleep deeply more than once or twice a week. Most of the time, even as I'm sleeping I feel like I'm semiconscious; I often recall looking at the clock every hour, though I don't recall the time in between these looks.
Sleep deprivation can cause serious cognitive impairment and, yes, even aphasias. It can even cause clumsiness, vertigo, and dizziness - so I guess it's kind of a tossup whether those symptoms are being caused by my spondylosis or just my lack of sleep.
Yay! I might get my life back!!!
Yes, that's it - sleep deprivation!
I've obviously slept in the past dozen years, but I haven't slept well. I average about five hours of restless sleep a night, and sometimes I take long (one- or two-hour) naps. Even if I napped daily (I don't), I wouldn't be getting my eight hours in. Now, it's true that many people don't need eight hours. But even people who don't need much sleep need good sleep in order to function properly.
My sleep isn't good sleep. I probably don't sleep deeply more than once or twice a week. Most of the time, even as I'm sleeping I feel like I'm semiconscious; I often recall looking at the clock every hour, though I don't recall the time in between these looks.
Sleep deprivation can cause serious cognitive impairment and, yes, even aphasias. It can even cause clumsiness, vertigo, and dizziness - so I guess it's kind of a tossup whether those symptoms are being caused by my spondylosis or just my lack of sleep.
Yay! I might get my life back!!!
Wednesday, December 16, 2009
I Might Have an Answer
The cervical spine MRI showed cervical spondylosis, or degeneration of my spinal joints. These joints have formed bone spurs, which are taking up room and making less room for my nerve passageways.
I have "minimal" canal stenosis, or narrowing of the spinal canal, and "mild to moderate" neural foraminal narrowing, which is narrowing of the passageways that lead off the spinal canal.
Limb (arm and leg) pain, numbness, and parasthesias are symptoms, as are balance and gait problems and bladder and bowel incontinence. Fatigue and dizziness can be caused by spondylosis as well, but I've had a much harder time finding scientific evidence that hormonal dysregulation, muscle fasciculations, and semantic paraphasia can result. I have seen a few papers and articles that deal with all of these issues except aphasia in the general context of spinal cord damage, though, so I'm hoping everything is related. It's hard not to think that even the aphasia is related, since it's been a problem only since all my other symptoms have become unbearable this year.
I have an appointment with a neurologist in early January, so I'll ask him my questions and discuss treatment options (which can evidently range from cervical collars to surgery) then.
I have "minimal" canal stenosis, or narrowing of the spinal canal, and "mild to moderate" neural foraminal narrowing, which is narrowing of the passageways that lead off the spinal canal.
Limb (arm and leg) pain, numbness, and parasthesias are symptoms, as are balance and gait problems and bladder and bowel incontinence. Fatigue and dizziness can be caused by spondylosis as well, but I've had a much harder time finding scientific evidence that hormonal dysregulation, muscle fasciculations, and semantic paraphasia can result. I have seen a few papers and articles that deal with all of these issues except aphasia in the general context of spinal cord damage, though, so I'm hoping everything is related. It's hard not to think that even the aphasia is related, since it's been a problem only since all my other symptoms have become unbearable this year.
I have an appointment with a neurologist in early January, so I'll ask him my questions and discuss treatment options (which can evidently range from cervical collars to surgery) then.
Saturday, December 5, 2009
Latest Doctor Visit
I said in an earlier comment that my arms showed no reflexes when tested at a previous doctor visit. Well, thankfully, this time both arms tested fine. My doctor explained that if a patient is nervous or tense, his or her reflexes will often be subdued.
My legs showed hyperreflexia, though, which the doctor said may or may not mean something. He said hyperreflexia is seen across all disorders that affect the upper motor neurons, but is also commonly seen in the population at large.
My labwork all came back normal. My vitamin D was 39.9, which is good; it's at the lower end of normal. However, I take high doses of a vitamin D3 supplement (5,000 IU [international units] three or four days a week), so it seems a little odd to me that I'm not on the higher end of the scale. My doctor didn't seem too concerned, though; he just told me to continue with the high doses.
The doctor said that for now we'll look at my symptoms separately, since an overarching cause isn't clear. I don't really like that, since I'm certain there is one problem at the root of all my symptoms, but since he's the first doctor to take me really seriously and continue looking for an answer when one isn't immediately apparent, we'll do things his way. Who knows, maybe by looking at things in more detail, we'll start seeing clues that have been overlooked.
The doctor is ordering a cervical MRI to make sure I don't have pinched nerves in my neck (I've actually wondered about this myself, but there is just so much other stuff going on that it seems like it has to be connected). He's also sending me to another neurologist; he says this guy is really good and takes his time listening to his patients.
That's it, really. No news, but I wasn't really expecting any so soon.
My legs showed hyperreflexia, though, which the doctor said may or may not mean something. He said hyperreflexia is seen across all disorders that affect the upper motor neurons, but is also commonly seen in the population at large.
My labwork all came back normal. My vitamin D was 39.9, which is good; it's at the lower end of normal. However, I take high doses of a vitamin D3 supplement (5,000 IU [international units] three or four days a week), so it seems a little odd to me that I'm not on the higher end of the scale. My doctor didn't seem too concerned, though; he just told me to continue with the high doses.
The doctor said that for now we'll look at my symptoms separately, since an overarching cause isn't clear. I don't really like that, since I'm certain there is one problem at the root of all my symptoms, but since he's the first doctor to take me really seriously and continue looking for an answer when one isn't immediately apparent, we'll do things his way. Who knows, maybe by looking at things in more detail, we'll start seeing clues that have been overlooked.
The doctor is ordering a cervical MRI to make sure I don't have pinched nerves in my neck (I've actually wondered about this myself, but there is just so much other stuff going on that it seems like it has to be connected). He's also sending me to another neurologist; he says this guy is really good and takes his time listening to his patients.
That's it, really. No news, but I wasn't really expecting any so soon.
Sunday, November 22, 2009
The Lyme Controversy
The Infectious Disease Society of America (IDSA), the American Lyme Disease Foundation (ALDF), the National Institute of Allergy and Infectious Diseases (NIAID), and the Centers for Disease Control and Prevention (CDC) are largely in agreement concerning Lyme disease. The collective opinion: In its later stages, Lyme disease is easy to detect with laboratory tests and simple to treat with a 28-day course of antibiotics. [Update 05/25/2011: The CDC once went a bit further and said that some patients may benefit from a second course of antibiotics; that was the information originally given here when this blog entry was first posted. However, the web address and wording of the CDC's Lyme treatment information has changed since the time of my original writing.]
The IDSA says that Lyme disease that manifests without erythema migrans [the characteristic bull's-eye rash associated with Lyme] "is diagnosed based on the patient’s history and the doctor’s examination of the patient in conjunction with a positive laboratory test result." The CDC endorses the IDSA Lyme disease treatment guidelines, but breaks with the IDSA enough to say [Update 05/25/2011: Again, the following wording is no longer on the CDC site.] that "Lyme disease is diagnosed based on symptoms, objective physical findings (such as [my emphasis] erythema migrans, facial palsy, or arthritis [again, my emphasis]), and a history of possible exposure to infected ticks," and that its [Update 05/25/2011: And yet again, the following wording is no longer on the CDC site. In fact, all of the CDC's information about Lyme disease seems to have been rewritten since this blog was first posted. The new home page of its Lyme information is here. On that page, you'll see links to the new topic pages.] "surveillance case definition" of Lyme disease "was developed for national reporting of Lyme disease" and "is not intended to be used in clinical diagnosis."
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center goes much further than either group and says that "the CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease."
Many insurance companies follow the IDSA treatment guidelines and will not pay for further testing if an initial Lyme laboratory test is negative. More important, they will not pay for long-term antibiotic treatment.
Some physicians' groups, most notably the International Lyme and Associated Diseases Society (ILADS), the Lyme Disease Association (LDA), and the Lyme Disease Foundation (LDF; created before the similar-sounding ALDF), adamantly disagree with the idea that laboratory testing is reliable and with the IDSA treatment guidelines. They maintain that current testing is extremely unreliable and far too restrictive, that longer courses of antibiotic treatment are often needed to combat Lyme, and that the research backing up both of these claims is routinely ignored by the IDSA.
Many patients continue to have symptoms, or have their symptoms return, after suspending even long-term antibiotic treatment. Those doctors and organizations who say a course or two of antibiotic treatment is sufficient say this could be the result of an autoimmune disorder caused by Lyme, an unrelated disorder entirely, or a reinfection of Lyme from another tick bite.
The attorney general of Connecticut, Richard Blumenthal, even opened an antitrust investigation into the IDSA, alleging that the board members who created the Lyme treatment guidelines had various conflicts of interest. In 2008, the IDSA agreed to purge the board of those members with possible conflicts of interests and to review its guidelines. It did hold a hearing on the matter earlier this year, and it says it "hopes to issue its final report by the end of the year." Links to testimony both supporting the IDSA guidelines and urging revision can be found on the IDSA website.
Barbara Johnson of the CDC, in her "Statement in Support of the Laboratory Testing Recommendations in the 2006 IDSA Clinical Practice Guidelines for Lyme Disease," said, "Serologic testing recommended by CDC since 1995 [2, 4] and endorsed by IDSA utilizes a two-tiered procedure that includes an initial ELISA and conditional immunoblotting to be performed if the ELISA result is positive or indeterminate." However, Barbara Johnson also holds patents for more than one Lyme-testing aid.
Should our government researchers be allowed to collaborate with big pharmaceutical companies for profit? It doesn't guarantee unethical behavior, of course, but it certainly could make engaging in it more tempting.
I am not a scientist and cannot possibly know what the absolutes of Lyme disease testing and treatment are, but I don't think we can discard the stories of thousands of Lyme patients who say they were helped by antibiotics only to relapse after their treatments ended. The IDSA would write many of these experiences off as the placebo effect:
Long-term therapy for so-called chronic Lyme disease can involve weeks, months and even years of intravenous antibiotics. Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection. Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon. Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.
It isn't uncommon for Lyme patients to go years before being diagnosed. During those years, they are often treated as though they are hypochondriacs. Is it really acceptable for the medical profession to again slap some of them with labels of "unbalanced" if they assert that their symptoms return when their antibiotic treatments end?
Spend any time trolling Lyme disease forums, however, and you'll soon see that patients themselves are sometimes hurting their own case. Many follow and actively promote unscientific and even unhealthy alternative therapies.
It's also clear that there are doctors out there who are quite willing to take advantage of desperate patients. Many doctors who advocate long-term antibiotic treatment for Lyme no longer deal with insurance, and most doctors who advocate long-term antibiotic treatment prefer to keep a low profile lest they be harassed by others in the medical community and overwhelmed by new patients. These are known as "Lyme-literate medical doctors," and most seem to truly care about patient health. However, there are those who seem only too happy to make huge profits from people who never show even initial signs of improvement from antibiotic therapy. LymeNet is full of posters with such stories to tell, posters who, disturbingly, are so relieved to have someone validate their experiences that they don't question their treatment protocols.*
My plan? I'm going to ask to be tested for Lyme again using a more sensitive test; I'll also ask my doctor to consider a strictly clinical diagnosis if my tests are again negative. (The symptoms of chronic fatigue syndrome and Lyme disease are identical. One has a treatement regimen and the other doesn't; the choice is really a no-brainer.) I'll also ask to be tested for tick-borne co-infections.
If my doctor is open minded and willing to allow me to try a treatment regimen, I'll try the 28 days of antibiotics. If I feel well after the course of treatment and continue to feel well, great. If my symptoms come back, I will ask my doctor to prescribe further antibiotics off label. If he refuses, I'll find a new doctor. It's really that simple. If something helps, I should have access to it. [Update: My doctor was perfectly willing to order more-specific Lyme tests and did so. Unfortunately, even though I am willing to pay out of pocket for the testing, the laboratory his office uses flatly refuses to run them unless the less-accurate enzyme-linked immunosorbent assay (ELISA) screening test is positive.]
*Although I have tried to offer reliable examples throughout this posting, it is impossible to do so when discussing Lyme-literate physicians and their methods and motives, because the Lyme community is fiercely protective of its doctors. There are only two ways to get the names of Lyme-literate doctors: 1) through a body such as the LDA or the LDF, and 2) through a patient group. In both situations, physician names are communicated directly to seekers and are not made available publicly. The only real way to get a sense of what is happening is to spend a great deal of time reading forum postings.
The IDSA says that Lyme disease that manifests without erythema migrans [the characteristic bull's-eye rash associated with Lyme] "is diagnosed based on the patient’s history and the doctor’s examination of the patient in conjunction with a positive laboratory test result." The CDC endorses the IDSA Lyme disease treatment guidelines, but breaks with the IDSA enough to say [Update 05/25/2011: Again, the following wording is no longer on the CDC site.] that "Lyme disease is diagnosed based on symptoms, objective physical findings (such as [my emphasis] erythema migrans, facial palsy, or arthritis [again, my emphasis]), and a history of possible exposure to infected ticks," and that its [Update 05/25/2011: And yet again, the following wording is no longer on the CDC site. In fact, all of the CDC's information about Lyme disease seems to have been rewritten since this blog was first posted. The new home page of its Lyme information is here. On that page, you'll see links to the new topic pages.] "surveillance case definition" of Lyme disease "was developed for national reporting of Lyme disease" and "is not intended to be used in clinical diagnosis."
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center goes much further than either group and says that "the CDC criteria are not very helpful for helping the clinician to detect late stage neurologic Lyme Disease."
Many insurance companies follow the IDSA treatment guidelines and will not pay for further testing if an initial Lyme laboratory test is negative. More important, they will not pay for long-term antibiotic treatment.
Some physicians' groups, most notably the International Lyme and Associated Diseases Society (ILADS), the Lyme Disease Association (LDA), and the Lyme Disease Foundation (LDF; created before the similar-sounding ALDF), adamantly disagree with the idea that laboratory testing is reliable and with the IDSA treatment guidelines. They maintain that current testing is extremely unreliable and far too restrictive, that longer courses of antibiotic treatment are often needed to combat Lyme, and that the research backing up both of these claims is routinely ignored by the IDSA.
Many patients continue to have symptoms, or have their symptoms return, after suspending even long-term antibiotic treatment. Those doctors and organizations who say a course or two of antibiotic treatment is sufficient say this could be the result of an autoimmune disorder caused by Lyme, an unrelated disorder entirely, or a reinfection of Lyme from another tick bite.
The attorney general of Connecticut, Richard Blumenthal, even opened an antitrust investigation into the IDSA, alleging that the board members who created the Lyme treatment guidelines had various conflicts of interest. In 2008, the IDSA agreed to purge the board of those members with possible conflicts of interests and to review its guidelines. It did hold a hearing on the matter earlier this year, and it says it "hopes to issue its final report by the end of the year." Links to testimony both supporting the IDSA guidelines and urging revision can be found on the IDSA website.
Barbara Johnson of the CDC, in her "Statement in Support of the Laboratory Testing Recommendations in the 2006 IDSA Clinical Practice Guidelines for Lyme Disease," said, "Serologic testing recommended by CDC since 1995 [2, 4] and endorsed by IDSA utilizes a two-tiered procedure that includes an initial ELISA and conditional immunoblotting to be performed if the ELISA result is positive or indeterminate." However, Barbara Johnson also holds patents for more than one Lyme-testing aid.
Should our government researchers be allowed to collaborate with big pharmaceutical companies for profit? It doesn't guarantee unethical behavior, of course, but it certainly could make engaging in it more tempting.
I am not a scientist and cannot possibly know what the absolutes of Lyme disease testing and treatment are, but I don't think we can discard the stories of thousands of Lyme patients who say they were helped by antibiotics only to relapse after their treatments ended. The IDSA would write many of these experiences off as the placebo effect:
Long-term therapy for so-called chronic Lyme disease can involve weeks, months and even years of intravenous antibiotics. Although some people may feel better, it doesn’t prove that the antibiotic cured or suppressed infection. Sometimes, the belief that a treatment is helping can be enough to make people feel better. This is called the placebo effect and it is a well-documented medical phenomenon. Antibiotics also have anti-inflammatory effects that may help alleviate certain symptoms. Or, in some cases, patients may have another infectious disease that is responsive to antibiotics.
It isn't uncommon for Lyme patients to go years before being diagnosed. During those years, they are often treated as though they are hypochondriacs. Is it really acceptable for the medical profession to again slap some of them with labels of "unbalanced" if they assert that their symptoms return when their antibiotic treatments end?
Spend any time trolling Lyme disease forums, however, and you'll soon see that patients themselves are sometimes hurting their own case. Many follow and actively promote unscientific and even unhealthy alternative therapies.
It's also clear that there are doctors out there who are quite willing to take advantage of desperate patients. Many doctors who advocate long-term antibiotic treatment for Lyme no longer deal with insurance, and most doctors who advocate long-term antibiotic treatment prefer to keep a low profile lest they be harassed by others in the medical community and overwhelmed by new patients. These are known as "Lyme-literate medical doctors," and most seem to truly care about patient health. However, there are those who seem only too happy to make huge profits from people who never show even initial signs of improvement from antibiotic therapy. LymeNet is full of posters with such stories to tell, posters who, disturbingly, are so relieved to have someone validate their experiences that they don't question their treatment protocols.*
My plan? I'm going to ask to be tested for Lyme again using a more sensitive test; I'll also ask my doctor to consider a strictly clinical diagnosis if my tests are again negative. (The symptoms of chronic fatigue syndrome and Lyme disease are identical. One has a treatement regimen and the other doesn't; the choice is really a no-brainer.) I'll also ask to be tested for tick-borne co-infections.
If my doctor is open minded and willing to allow me to try a treatment regimen, I'll try the 28 days of antibiotics. If I feel well after the course of treatment and continue to feel well, great. If my symptoms come back, I will ask my doctor to prescribe further antibiotics off label. If he refuses, I'll find a new doctor. It's really that simple. If something helps, I should have access to it. [Update: My doctor was perfectly willing to order more-specific Lyme tests and did so. Unfortunately, even though I am willing to pay out of pocket for the testing, the laboratory his office uses flatly refuses to run them unless the less-accurate enzyme-linked immunosorbent assay (ELISA) screening test is positive.]
*Although I have tried to offer reliable examples throughout this posting, it is impossible to do so when discussing Lyme-literate physicians and their methods and motives, because the Lyme community is fiercely protective of its doctors. There are only two ways to get the names of Lyme-literate doctors: 1) through a body such as the LDA or the LDF, and 2) through a patient group. In both situations, physician names are communicated directly to seekers and are not made available publicly. The only real way to get a sense of what is happening is to spend a great deal of time reading forum postings.
Some Interesting Links
Lyme:
An article in the Journal of Clinical Microbiology detailing how inadequate Lyme disease testing is.
A webpage from the Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center site summarizing research that demonstrated the persistence of infectious Borrelia burgdorferi [the spirochete that causes Lyme disease] in mice after they had been treated with antibiotics for one month. The studies summarized also indicated it was possible for dormant infection to become reactivated.
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center website as a whole is really informative. The center is a joint project of Columbia University; Time for Lyme, Inc.; and the LDA. The center clearly recognizes that chronic Lyme exists and that Lyme testing is far from perfect. Its FAQ is really educational, acknowledging and explaining the realities of Lyme in a completely nonsensationalistic manner.
The trailer for the documentary Under Our Skin, a look at the politicization of chronic Lyme disease. I have not yet seen this, but from reviews I've read and online discussion I've seen, it is evident that there is a clear bias toward ILADS. Most people with Lyme talking about the movie online seem to see this as justified, though others point out that a more even-handed approach would do more to open minds and educate in the long run, and that there is room for compromise between IDSA and ILADS. I have read complaints that one particular Lyme expert in the movie is known in the Lyme community as something of a charlatan and was not the best choice of doctor representative.
Author Amy Tan discussing her chronic Lyme. This is the video of a Tribeca Talks Panel held after the screening of Under Our Skin at the Tribeca Film Festival. It's 40 minutes and 20 seconds long, but has a lot of interesting information. Tan really gets into how the disease affected her and how it still affects her at around 17:08.
An article by actor* Joanna Kerns discussing her daughter's chronic Lyme disease and promoting Under Our Skin.
Multiple Sclerosis:
MyMSMyWAY, a site that offers free games to improve cognitive function.
Fit Brains, another site that does the same.
*My use of the word actor instead of actress is not a reflection of my cognitive difficulties. Journalistically, the old masculine term is the new gender-neutral term.
An article in the Journal of Clinical Microbiology detailing how inadequate Lyme disease testing is.
A webpage from the Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center site summarizing research that demonstrated the persistence of infectious Borrelia burgdorferi [the spirochete that causes Lyme disease] in mice after they had been treated with antibiotics for one month. The studies summarized also indicated it was possible for dormant infection to become reactivated.
The Columbia University Medical Center Lyme and Tick-Borne Diseases Research Center website as a whole is really informative. The center is a joint project of Columbia University; Time for Lyme, Inc.; and the LDA. The center clearly recognizes that chronic Lyme exists and that Lyme testing is far from perfect. Its FAQ is really educational, acknowledging and explaining the realities of Lyme in a completely nonsensationalistic manner.
The trailer for the documentary Under Our Skin, a look at the politicization of chronic Lyme disease. I have not yet seen this, but from reviews I've read and online discussion I've seen, it is evident that there is a clear bias toward ILADS. Most people with Lyme talking about the movie online seem to see this as justified, though others point out that a more even-handed approach would do more to open minds and educate in the long run, and that there is room for compromise between IDSA and ILADS. I have read complaints that one particular Lyme expert in the movie is known in the Lyme community as something of a charlatan and was not the best choice of doctor representative.
Author Amy Tan discussing her chronic Lyme. This is the video of a Tribeca Talks Panel held after the screening of Under Our Skin at the Tribeca Film Festival. It's 40 minutes and 20 seconds long, but has a lot of interesting information. Tan really gets into how the disease affected her and how it still affects her at around 17:08.
An article by actor* Joanna Kerns discussing her daughter's chronic Lyme disease and promoting Under Our Skin.
Multiple Sclerosis:
MyMSMyWAY, a site that offers free games to improve cognitive function.
Fit Brains, another site that does the same.
*My use of the word actor instead of actress is not a reflection of my cognitive difficulties. Journalistically, the old masculine term is the new gender-neutral term.
Timeline of Symptoms, Possibly Relevant Information, and New Doctor Update
The following is a timeline of the symptoms I've been dealing with for the past 11 years, as well as information I think may be relevant to diagnosing this illness. I'm giving this to my doctor; it is complete, but since this blog is a record open to my family and friends, I have deleted some of the more personal symptoms. If you think my story might be helpful to someone going through a similar ordeal, however, I will happily be forthcoming through email.
1. I have had all of these symptoms for years:
fatigue (about 11 years; constant, but worse some times than others; after any expenditure of energy, it is much more severe for an inordinately long time.)
muscle pain and stiffness and knots that never go away (about 11 years; extreme and getting worse; constant, but worse some times than others)
joint pain (worsening over the past 5 years or so; neck [always], fingers [often], hips [always], toes [often])
TMJ (6 or 7 years)
excruciating shooting pain from lower tooth; nothing shows on dental x-ray (3 or 4 years)
night sweats (about 3 years)
deleted
odd feeling shooting down arms (intermittent over the past 11 years or so, initially off and on for a few weeks or months, now happens frequently; numb but painful and weakens my grip)
forgetfulness (6 years or so; I will forget everyday words and tasks, like what the remote control is called or what to do after I've put the car in park [turn off the key].)
trouble concentrating and comprehending (3 years or so; I have to read and reread articles and work of the type I used to understand immediately.)
muscle cramps (3 years; legs, toes, and ribcage; at one time, I had low potassium, but it’s fine now and I still get the cramps.)
clumsiness (3 years; I have always been clumsy, but for the past few years I have definitely walked into objects and door frames more. It's as though I misjudge the clearance I need. I also drop more and have trouble typing that I did not have before.)
more frequent urge to urinate (2 or 3 years; deleted)
trouble sleeping (as long as I can remember; insomnia and less restful sleep at night than I can get if I sleep in the daytime)
dizziness and racing heart when taking hot baths (3 or 4 years; largely alleviated since my vitamin D level has come up)
random shooting pain in odd spots in my body (2 or 3 years; intense and short lived)
bone pain (2 or 3 years; began as sharp temporary pain but now includes aching)
2. The following are more recent:
vertigo (one severe bout a year ago; it lasted for three days and sometimes made it impossible to stand or walk. It caused nausea and vomiting.)
hot flashes (frequent only in the past year)
deleted
deleted
peripheral vision problems (past year or so; I will think I see a flying insect, mouse, or shadow at the edge of my field of vision, only to turn and realize nothing is there.)
shortness of breath (past year or so; sometimes after exertion, but sometimes not; I sometimes feel as though I'm breathing in enough air but am not getting enough oxygen)
burning in thighs with any kind of exertion such as climbing stairs (past year or so)
alcohol intolerance (past year)
muscle twitching (past few months; mostly at night and in the muscle groups that cause me pain)
using the wrong words (past few months; I will say “expensive” when I mean “rich,” or “cut” when I mean “tear.”)
more sensitive to sunlight and loud noises (past year)
3. deleted, involving acne and other hormonal issues
4. Within several months of the onset of my symptoms, I had an extremely itchy, non-contagious body rash.
5. I’ve had several blood tests and a brain MRI and all tests have been normal. I have no tender points.
6. Earlier this year (2009), a blood test showed that I had low vitamin D. I have since gotten my vitamin D level up, but my symptoms remain.
7. I did see a neurologist this year; he looked at my MRI and told me it was not possible for me to have MS. I asked about the MS Society’s assertion that 5% of MS patients have negative brain MRIs and was told, “The MS Society lies.” I asked about the possibility of spinal lesions and was told that spinal lesions would only be a possibility with a symptom like vertigo. I responded, “It’s on the list of symptoms I just handed you,” and the neurologist simply repeated that I could not possibly have MS.
The neurologist also told me that the neurological exam he was giving me was standard and complete, but I am certain that it was neither. It lasted less than 10 minutes and did not include any balance test that required me to close my eyes.
8. I saw a rheumatologist after I saw the neurologist. He told me that I could not have chronic fatigue syndrome unless I had endured a serious trauma (his example: being raped as a child). He asked if I had several symptoms, among them bruising and fluid retention. I answered yes to those two particular symptoms and also told him that all my symptoms are worse when I am ovulating or menstruating. He went on to tell me I had no symptoms related to lupus.
The rheumatologist went on to tell me that he believed my problem was in my central nervous system; however, the letter from his office that ended up in my medical file speculated that perhaps I have chronic fatigue syndrome or fibromyalgia. I believe the letter was probably sent by the nurse practitioner I saw the first time I visited the office; my full consultation with the rheumatologist was a follow-up appointment made after I completed my prescription for vitamin D.
9. No one has suggested further testing, but they have been willing to prescribe muscle relaxers and antidepressants. This is unacceptable to me. Muscle relaxers do not relax the muscles that are tense, but they do increase my fatigue exponentially. The only depression I have is related to having chronic pain, cognitive difficulty, decreased quality of life, and little hope of change. In short, any depression I deal with is the result of this illness, not the cause of it.
A small percentage of patients with rheumatoid arthritis, lupus, multiple sclerosis, and Lyme disease all consistently test serologically negative, but no one has yet seemed willing to consider the possibility that I might be one of these patients. Unlikely or not, I have a real, physical illness. I need to know what it is so that I can begin a course of useful treatment.
I have read that false negatives are more common in Lyme disease tests than they are in autoimmune tests. Before my symptoms made it impossible, I was a very active person who spent a lot of time in the woods. Because of the higher false negative rate of the Lyme tests and because of my history of possible exposure, I very much want to have a C6 Lyme Peptide ELISA (C6LPE), a Western Blot from a laboratory that tests all bands, and a Polymerase Chain Reaction (PCR) test.
Because of my cognitive difficulties, nerve pain, vertigo, and balance issues, and because I have an aunt with multiple sclerosis, I would also like further evaluation for multiple sclerosis, including a spinal MRI, lumbar puncture, and full neurological exam.
UPDATE: My new doctor was better than any I've ever seen (his nurse, however, was ignorant and dismissive - told me I couldn't be in as much pain as I said I was because I didn't look as though I was). The doctor listened, took me seriously, and was happy to order the Lyme tests I wanted (though he is holding off on the others until the bloodwork comes back). However, what my doctor ordered does not matter to the laboratory. The lab does not offer the C6 ELISA, only the standard ELISA. And though my doctor specified he wanted the Western Blot regardless of ELISA results, the lab refuses to do either the Western Blot (its version of which does not include all bands) or the PCR test without a positive ELISA. I offered to pay out of pocket for these tests and was flatly told the laboratory would not run them under any circumstances without a positive ELISA. (The entry entitled "The Lyme Controversy" explains why this refusal to test is so egregious.)
1. I have had all of these symptoms for years:
fatigue (about 11 years; constant, but worse some times than others; after any expenditure of energy, it is much more severe for an inordinately long time.)
muscle pain and stiffness and knots that never go away (about 11 years; extreme and getting worse; constant, but worse some times than others)
joint pain (worsening over the past 5 years or so; neck [always], fingers [often], hips [always], toes [often])
TMJ (6 or 7 years)
excruciating shooting pain from lower tooth; nothing shows on dental x-ray (3 or 4 years)
night sweats (about 3 years)
deleted
odd feeling shooting down arms (intermittent over the past 11 years or so, initially off and on for a few weeks or months, now happens frequently; numb but painful and weakens my grip)
forgetfulness (6 years or so; I will forget everyday words and tasks, like what the remote control is called or what to do after I've put the car in park [turn off the key].)
trouble concentrating and comprehending (3 years or so; I have to read and reread articles and work of the type I used to understand immediately.)
muscle cramps (3 years; legs, toes, and ribcage; at one time, I had low potassium, but it’s fine now and I still get the cramps.)
clumsiness (3 years; I have always been clumsy, but for the past few years I have definitely walked into objects and door frames more. It's as though I misjudge the clearance I need. I also drop more and have trouble typing that I did not have before.)
more frequent urge to urinate (2 or 3 years; deleted)
trouble sleeping (as long as I can remember; insomnia and less restful sleep at night than I can get if I sleep in the daytime)
dizziness and racing heart when taking hot baths (3 or 4 years; largely alleviated since my vitamin D level has come up)
random shooting pain in odd spots in my body (2 or 3 years; intense and short lived)
bone pain (2 or 3 years; began as sharp temporary pain but now includes aching)
2. The following are more recent:
vertigo (one severe bout a year ago; it lasted for three days and sometimes made it impossible to stand or walk. It caused nausea and vomiting.)
hot flashes (frequent only in the past year)
deleted
deleted
peripheral vision problems (past year or so; I will think I see a flying insect, mouse, or shadow at the edge of my field of vision, only to turn and realize nothing is there.)
shortness of breath (past year or so; sometimes after exertion, but sometimes not; I sometimes feel as though I'm breathing in enough air but am not getting enough oxygen)
burning in thighs with any kind of exertion such as climbing stairs (past year or so)
alcohol intolerance (past year)
muscle twitching (past few months; mostly at night and in the muscle groups that cause me pain)
using the wrong words (past few months; I will say “expensive” when I mean “rich,” or “cut” when I mean “tear.”)
more sensitive to sunlight and loud noises (past year)
3. deleted, involving acne and other hormonal issues
4. Within several months of the onset of my symptoms, I had an extremely itchy, non-contagious body rash.
5. I’ve had several blood tests and a brain MRI and all tests have been normal. I have no tender points.
6. Earlier this year (2009), a blood test showed that I had low vitamin D. I have since gotten my vitamin D level up, but my symptoms remain.
7. I did see a neurologist this year; he looked at my MRI and told me it was not possible for me to have MS. I asked about the MS Society’s assertion that 5% of MS patients have negative brain MRIs and was told, “The MS Society lies.” I asked about the possibility of spinal lesions and was told that spinal lesions would only be a possibility with a symptom like vertigo. I responded, “It’s on the list of symptoms I just handed you,” and the neurologist simply repeated that I could not possibly have MS.
The neurologist also told me that the neurological exam he was giving me was standard and complete, but I am certain that it was neither. It lasted less than 10 minutes and did not include any balance test that required me to close my eyes.
8. I saw a rheumatologist after I saw the neurologist. He told me that I could not have chronic fatigue syndrome unless I had endured a serious trauma (his example: being raped as a child). He asked if I had several symptoms, among them bruising and fluid retention. I answered yes to those two particular symptoms and also told him that all my symptoms are worse when I am ovulating or menstruating. He went on to tell me I had no symptoms related to lupus.
The rheumatologist went on to tell me that he believed my problem was in my central nervous system; however, the letter from his office that ended up in my medical file speculated that perhaps I have chronic fatigue syndrome or fibromyalgia. I believe the letter was probably sent by the nurse practitioner I saw the first time I visited the office; my full consultation with the rheumatologist was a follow-up appointment made after I completed my prescription for vitamin D.
9. No one has suggested further testing, but they have been willing to prescribe muscle relaxers and antidepressants. This is unacceptable to me. Muscle relaxers do not relax the muscles that are tense, but they do increase my fatigue exponentially. The only depression I have is related to having chronic pain, cognitive difficulty, decreased quality of life, and little hope of change. In short, any depression I deal with is the result of this illness, not the cause of it.
A small percentage of patients with rheumatoid arthritis, lupus, multiple sclerosis, and Lyme disease all consistently test serologically negative, but no one has yet seemed willing to consider the possibility that I might be one of these patients. Unlikely or not, I have a real, physical illness. I need to know what it is so that I can begin a course of useful treatment.
I have read that false negatives are more common in Lyme disease tests than they are in autoimmune tests. Before my symptoms made it impossible, I was a very active person who spent a lot of time in the woods. Because of the higher false negative rate of the Lyme tests and because of my history of possible exposure, I very much want to have a C6 Lyme Peptide ELISA (C6LPE), a Western Blot from a laboratory that tests all bands, and a Polymerase Chain Reaction (PCR) test.
Because of my cognitive difficulties, nerve pain, vertigo, and balance issues, and because I have an aunt with multiple sclerosis, I would also like further evaluation for multiple sclerosis, including a spinal MRI, lumbar puncture, and full neurological exam.
UPDATE: My new doctor was better than any I've ever seen (his nurse, however, was ignorant and dismissive - told me I couldn't be in as much pain as I said I was because I didn't look as though I was). The doctor listened, took me seriously, and was happy to order the Lyme tests I wanted (though he is holding off on the others until the bloodwork comes back). However, what my doctor ordered does not matter to the laboratory. The lab does not offer the C6 ELISA, only the standard ELISA. And though my doctor specified he wanted the Western Blot regardless of ELISA results, the lab refuses to do either the Western Blot (its version of which does not include all bands) or the PCR test without a positive ELISA. I offered to pay out of pocket for these tests and was flatly told the laboratory would not run them under any circumstances without a positive ELISA. (The entry entitled "The Lyme Controversy" explains why this refusal to test is so egregious.)
The Non-Physical Toll of Invisible Illness
One of the issues relating to this illness that has been, and continues to be, among the hardest to deal with is the feeling of isolation that comes with it. I can get angry when doctors don't listen or try to understand, but I'm much more likely to feel both angry and hurt when family and friends are dismissive.
If I try to describe what I'm going through in a matter-of-fact way, people simply don't understand. Pain? Oh, that must mean the aches and pains they've started getting now that they're a little older. Fatigue? Well, everyone gets tired; exhausted, sometimes.
Trying to make someone understand what I'm going through is almost sure to backfire. I'm still, in his or her mind, that person with common uncomfortable ailments, but now I'm also an attention-seeking whiner. This misunderstanding isn't entirely the listener's fault; people generally have to have some kind of frame of reference for something in order to understand it. A person's understanding of muscle pain and exhaustion is limited to the pain and exhaustion he or she has experienced. What most people forget to consider, however, is that people with autoimmune or neurological disorders have likely experienced the pains and the exhaustion that are sometimes part of daily living as well - so they have a very good frame of reference for what is normal and what is not.
The truth is, I'm neither a person with the typical aches and pains of aging nor someone looking for pity. I'm merely attempting to explain what is happening to me and defend myself against the uncharitable judgments others might make when I cannot do the things a person who is as healthy as I look to be can do. I want people to understand that when I cut back on my hours at work, it isn't because I'm not a hard worker. I want them to know that when I can't go shopping with them, it isn't because I don't care about spending time with them. I want them to know that if I overexert myself for a short time, I will be largely incapacitated for a long time.
Most people can work for eight hours and come home tired but functional. I can work for four hours, and I struggle to climb the stairs to my door. There have been a couple of times, when no one was around to see, that I allowed myself to crawl up the steps instead of walk. My staircase only has 13 steps.
My collection of symptoms isn't something I can push through, and that's not because I'm weak or lazy or undisciplined. I have an extremely high tolerance for pain and for most of my life was incredibly strong. I have pushed for years, probably longer and harder than most people could. I am no longer stronger than the force that is pushing against me, and all the effort and patience in the world are not going to change that. And though I can no longer push through this, I still push back with everything I have.
Once, after going through a round of blood tests, I said to a friend that I would rather have one particular condition more than another condition, since the latter condition was known to be disfiguring. My friend then proceeded to berate me for "wanting" to have the former condition. I didn't want to be exhausted and in pain, and I didn't want to be confused. I was those things, however, and figured I'd just as soon not look bent and broken on top of it all. The unspoken implication from my friend, however, was that I was seeking attention.
No one should have to deal with that kind of insulting implication from loved ones; unfortunately, most people with invisible illnesses do. (And for the record, I do sometimes seek attention. When I'm up to it, I do this by socializing and submitting my writing to literary journals. At one time, I engaged in both of these activities regularly and was also heavily involved in community theatre. There is no way I would have ever willingly traded a life that allowed me to participate in activities I loved for one that didn't.)
I've had family members tell me that what I feel "isn't that bad." How am I supposed to respond to that? What I feel in every moment is very much that bad and worse; if that isn't evident, it's because I'm exercising a great deal of the discipline people are far too likely to assume I don't have.
I don't feel bad because I am stressed, though I am sometimes stressed because I feel bad. I can be passionate and quick to react emotionally to things, true enough - but stress usually manifests itself physically when people are unable to express their emotions otherwise, not when they are more than adept at doing so. Beyond this, common sense alone should make short shrift of the stress theory. Every stressful element in my life absolutely pales in comparison to stressful elements in my past. Traffic stinks? Check! It's really bad when you don't have a car and must weave your way through traffic while carrying your laundry baskets. Money is tight? Check! Former single mom - need I say more? So I get a little peeved when I hear people suggest that I sometimes list into walls because I'm stressed.
Similarly, depression is also out as the cause of this disorder. I'm happier than I have been in years. It's true, though, that my quality of life has been drastically slashed, and I do find that depressing. I often feel guilty for not doing more at both the office and at home, and for the unfair burdens my inability to do more has placed on those I love; this guilt does sometimes lead to bouts of depression. I've generally become depressed each time I've seen yet another doctor who has been lazy, disinterested, condescending, or some combination of these. But my depression in all of these instances is situational and reactive, not causative. And so far, I've been able to compartmentalize it fairly well. That is, I still find great joy in my family and home, and I'm still capable of gratitude for the many blessings in my life. My family and I laugh together hundreds of times daily. Whatever is responsible for this illness, it isn't depression.
As I said earlier, explaining this ordeal almost always backfires. So why do I try again now? Because if I don't do what I can to educate, I don't have much room for complaining if misunderstandings persist. Just as I've had to become an advocate for my health, I now have to become an advocate for a greater understanding of the effects of invisible illness.
If I try to describe what I'm going through in a matter-of-fact way, people simply don't understand. Pain? Oh, that must mean the aches and pains they've started getting now that they're a little older. Fatigue? Well, everyone gets tired; exhausted, sometimes.
Trying to make someone understand what I'm going through is almost sure to backfire. I'm still, in his or her mind, that person with common uncomfortable ailments, but now I'm also an attention-seeking whiner. This misunderstanding isn't entirely the listener's fault; people generally have to have some kind of frame of reference for something in order to understand it. A person's understanding of muscle pain and exhaustion is limited to the pain and exhaustion he or she has experienced. What most people forget to consider, however, is that people with autoimmune or neurological disorders have likely experienced the pains and the exhaustion that are sometimes part of daily living as well - so they have a very good frame of reference for what is normal and what is not.
The truth is, I'm neither a person with the typical aches and pains of aging nor someone looking for pity. I'm merely attempting to explain what is happening to me and defend myself against the uncharitable judgments others might make when I cannot do the things a person who is as healthy as I look to be can do. I want people to understand that when I cut back on my hours at work, it isn't because I'm not a hard worker. I want them to know that when I can't go shopping with them, it isn't because I don't care about spending time with them. I want them to know that if I overexert myself for a short time, I will be largely incapacitated for a long time.
Most people can work for eight hours and come home tired but functional. I can work for four hours, and I struggle to climb the stairs to my door. There have been a couple of times, when no one was around to see, that I allowed myself to crawl up the steps instead of walk. My staircase only has 13 steps.
My collection of symptoms isn't something I can push through, and that's not because I'm weak or lazy or undisciplined. I have an extremely high tolerance for pain and for most of my life was incredibly strong. I have pushed for years, probably longer and harder than most people could. I am no longer stronger than the force that is pushing against me, and all the effort and patience in the world are not going to change that. And though I can no longer push through this, I still push back with everything I have.
Once, after going through a round of blood tests, I said to a friend that I would rather have one particular condition more than another condition, since the latter condition was known to be disfiguring. My friend then proceeded to berate me for "wanting" to have the former condition. I didn't want to be exhausted and in pain, and I didn't want to be confused. I was those things, however, and figured I'd just as soon not look bent and broken on top of it all. The unspoken implication from my friend, however, was that I was seeking attention.
No one should have to deal with that kind of insulting implication from loved ones; unfortunately, most people with invisible illnesses do. (And for the record, I do sometimes seek attention. When I'm up to it, I do this by socializing and submitting my writing to literary journals. At one time, I engaged in both of these activities regularly and was also heavily involved in community theatre. There is no way I would have ever willingly traded a life that allowed me to participate in activities I loved for one that didn't.)
I've had family members tell me that what I feel "isn't that bad." How am I supposed to respond to that? What I feel in every moment is very much that bad and worse; if that isn't evident, it's because I'm exercising a great deal of the discipline people are far too likely to assume I don't have.
I don't feel bad because I am stressed, though I am sometimes stressed because I feel bad. I can be passionate and quick to react emotionally to things, true enough - but stress usually manifests itself physically when people are unable to express their emotions otherwise, not when they are more than adept at doing so. Beyond this, common sense alone should make short shrift of the stress theory. Every stressful element in my life absolutely pales in comparison to stressful elements in my past. Traffic stinks? Check! It's really bad when you don't have a car and must weave your way through traffic while carrying your laundry baskets. Money is tight? Check! Former single mom - need I say more? So I get a little peeved when I hear people suggest that I sometimes list into walls because I'm stressed.
Similarly, depression is also out as the cause of this disorder. I'm happier than I have been in years. It's true, though, that my quality of life has been drastically slashed, and I do find that depressing. I often feel guilty for not doing more at both the office and at home, and for the unfair burdens my inability to do more has placed on those I love; this guilt does sometimes lead to bouts of depression. I've generally become depressed each time I've seen yet another doctor who has been lazy, disinterested, condescending, or some combination of these. But my depression in all of these instances is situational and reactive, not causative. And so far, I've been able to compartmentalize it fairly well. That is, I still find great joy in my family and home, and I'm still capable of gratitude for the many blessings in my life. My family and I laugh together hundreds of times daily. Whatever is responsible for this illness, it isn't depression.
As I said earlier, explaining this ordeal almost always backfires. So why do I try again now? Because if I don't do what I can to educate, I don't have much room for complaining if misunderstandings persist. Just as I've had to become an advocate for my health, I now have to become an advocate for a greater understanding of the effects of invisible illness.
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