Do I have Fibromyalgia?
April 11, 2008 5:02 PM Subscribe
Can Fibromyalgia mimic the symptoms of a serious neurological illness? Do any Fibromyalgia sufferers out there have symptoms like mine, or have I been misdiagnosed?
I'm a 28 year old male, and I've been ill for about eight months now. I'll briefly recap my symptoms and the medical advice I've been given so far.
Symptoms:
From my research, vCJD (the variant form of Creutzfeld-Jackobs Disease) has an average age of onset of 28. That's my age. It has an initial phase characterized by 8-14 months of painful dysesthesias (or burning sensations), and eventually causes involuntary myoclonic twitches in the muscles. I have those. For the first 14 months or so, before they ever suffer dementia, cognitive problems, and death, sufferers experience anxiety and depression, and are usually referred to a psychologist. My doctors referred me to one. Most people who've contracted it ate British beef in the 80s and early 90s... Okay, got me there. I didn't exactly do that, but I did visit Nova Scotia and eat someawful traditional dishes involving cow stomach and intestine. From what I've read, those cuts of meat are on the riskier side, and this was during the peak of the scare.
Naturally, I'm all worked up over this, but don't know if I should start barking up this tree with my doctors. The disease is extremely rare, especially in the US, and even in England the methods of diagnosis are few and unreliable. There aren't a lot of doctors who even know what it is, or can distinguish it from standard CJD, which has very different initial symptoms. Case in point - when I mentioned my fears to one neurologist, he confused it with standard CJD and said I had nothing to worry about.
So, does anyone out there with a positive Fibromyalgia diagnosis experience similar symptoms - pain under fingernails, burning skin, lack of Trigger points, diffuse twitching, and so on? Can I feel confident in accepting this diagnosis? Should I be concerned about vCJD?
If anyone out there has been dealt a similar hand with Fibromyalgia, it would really set my mind at ease. Thanks all.
I'm a 28 year old male, and I've been ill for about eight months now. I'll briefly recap my symptoms and the medical advice I've been given so far.
Symptoms:
- Pain: My primary symptom has been a burning pain that seems to migrate through the skin and the muscles of my arms and legs, and clusters most intensely in my hands and feet. It sometimes peaks around my fingernails and toenails, where it feels like I've hit them with a hammer, or around joints in my fingers, arms, or legs. This pain has made my body extremely sensitive to touch, and a simple press of the hand or brush of the arm can sometimes excite it.
- Fatigue: My second symptom is fatigue and insomnia. I just can't seem to get a full night's sleep anymore, and usually wake after 4 or 5 hours (and in some state of discomfort). Even when I do get more sleep than this, I still feel mentally and physically washed out.
- Twitches: This is probably the oddest one of all. Throughout the day, but most intensely at night, I'm treated to a sort of internal fireworks of involuntary muscle twitches. These bouts of twitches are completely painless, rapid, and only last a few seconds on average before moving elsewhere or dissipating.
- Anxiety: Naturally, all of this, combined with the lack of sleep, has made me very anxious about my health. I've been referred to therapy but have thusfar resisted antidepressants pending a solid diagnosis.
- My first specialist visit was to a rheumatologist. I tested negative for thyroid problems, had a normal CBC, and had normal B12 levels.
- The rheumatologist gave me the standard Fibromyalgia exam, which involves checking for pain across 18 precise "Trigger Point" locations on the body. Though my pain sometimes surfaces in these spots, it's more likely to appear in the extremities. Though I lacked the Trigger Points for an official diagnosis, he argued that the official test for Fibro admitted false negatives, and I was handed the diagnosis of "probable Fibromyalgia" assuming that no other disease is found.
- My next trip was to a sleep clinic, which ruled out sleep apnea, and (after wiring me up like Alex DeLarge in Clockwork Orange) concluded that I had insomnia. Brilliant.
- After this, I was sent to the Neurologist, who prescribed EMG, Evoked Potentials, and walking tests to check for the diffuse nerve damage characteristic of Multiple Sclerosis. Negative.
From my research, vCJD (the variant form of Creutzfeld-Jackobs Disease) has an average age of onset of 28. That's my age. It has an initial phase characterized by 8-14 months of painful dysesthesias (or burning sensations), and eventually causes involuntary myoclonic twitches in the muscles. I have those. For the first 14 months or so, before they ever suffer dementia, cognitive problems, and death, sufferers experience anxiety and depression, and are usually referred to a psychologist. My doctors referred me to one. Most people who've contracted it ate British beef in the 80s and early 90s... Okay, got me there. I didn't exactly do that, but I did visit Nova Scotia and eat some
Naturally, I'm all worked up over this, but don't know if I should start barking up this tree with my doctors. The disease is extremely rare, especially in the US, and even in England the methods of diagnosis are few and unreliable. There aren't a lot of doctors who even know what it is, or can distinguish it from standard CJD, which has very different initial symptoms. Case in point - when I mentioned my fears to one neurologist, he confused it with standard CJD and said I had nothing to worry about.
So, does anyone out there with a positive Fibromyalgia diagnosis experience similar symptoms - pain under fingernails, burning skin, lack of Trigger points, diffuse twitching, and so on? Can I feel confident in accepting this diagnosis? Should I be concerned about vCJD?
If anyone out there has been dealt a similar hand with Fibromyalgia, it would really set my mind at ease. Thanks all.
don't Google your symptoms, whatever you might have. you always end up with the worst case scenario. people with a simple fuck sore will think they caught herpes, people with actual herpes will think they have AIDS, people with a headache will think they have inoperable brain cancer.
you don't have mad cow disease, come on. certainly you don't have it because the Internet told you so.
re: fibromyalgia. it is still a bit controversial. especially if, after a lot of tests that come back negative your doctor can't find anything wrong with you, you might end up getting a diagnosis. this is not to say you don't have it, whatever fibromyalgia actually is. but the simple fact that 4 million Americans (what's that, 2% of the population?) got diagnosed with fibromyalgia while in the rest of the West numbers are monstrously lower means that either there's something really wrong with American's muscles or there's something wrong with their doctors. see also: Ritalin.
sorry I can't help more. but really, mad cow?
posted by matteo at 5:25 PM on April 11, 2008 [2 favorites]
you don't have mad cow disease, come on. certainly you don't have it because the Internet told you so.
re: fibromyalgia. it is still a bit controversial. especially if, after a lot of tests that come back negative your doctor can't find anything wrong with you, you might end up getting a diagnosis. this is not to say you don't have it, whatever fibromyalgia actually is. but the simple fact that 4 million Americans (what's that, 2% of the population?) got diagnosed with fibromyalgia while in the rest of the West numbers are monstrously lower means that either there's something really wrong with American's muscles or there's something wrong with their doctors. see also: Ritalin.
sorry I can't help more. but really, mad cow?
posted by matteo at 5:25 PM on April 11, 2008 [2 favorites]
Ten years ago I was diagnosed with fibromyalgia, with about the same symptoms you're describing.
For my early morning insomnia (I'd wake up about 3am - 4am every morning), my doctor prescribed Elavil (generic is amitriptyline). I took 5mg (half the smallest pill available) before bedtime. With the Elavil I was able to sleep through the night (although a little groggy in the morning).
In a couple of weeks my symptoms lessened. In a couple of months I was pretty much back to normal.
One theory I heard was that you need your deep delta sleep for your body to heal, and I was waking up before I reached that stage of sleep. Once I was able to sleep through the night my body got the healing it needed.
As for vCJD, that's just your anxiety and too much time looking up medical issues on the internet (I've been there!). For that, I recommend two things: quit spending so much time on the internet reading up on medical issues, and have your doctor prescribe an anti-anxiety medication. It's a wonder what an anti-anxiety medication can do; once you stop worrying so much about things you'll may find that a lot of your symptoms lessen or disappear. The more you worry about things, the more you notice every little ache and pain, and the more you worry about things. It's a cycle anti-anxiety meds can stop.
So, for what a doctor can do for you, my suggestions are to consider trying Elavil and and an anti-anxiety medication.
Feel free to Metamail me.
posted by ShooBoo at 5:30 PM on April 11, 2008
For my early morning insomnia (I'd wake up about 3am - 4am every morning), my doctor prescribed Elavil (generic is amitriptyline). I took 5mg (half the smallest pill available) before bedtime. With the Elavil I was able to sleep through the night (although a little groggy in the morning).
In a couple of weeks my symptoms lessened. In a couple of months I was pretty much back to normal.
One theory I heard was that you need your deep delta sleep for your body to heal, and I was waking up before I reached that stage of sleep. Once I was able to sleep through the night my body got the healing it needed.
As for vCJD, that's just your anxiety and too much time looking up medical issues on the internet (I've been there!). For that, I recommend two things: quit spending so much time on the internet reading up on medical issues, and have your doctor prescribe an anti-anxiety medication. It's a wonder what an anti-anxiety medication can do; once you stop worrying so much about things you'll may find that a lot of your symptoms lessen or disappear. The more you worry about things, the more you notice every little ache and pain, and the more you worry about things. It's a cycle anti-anxiety meds can stop.
So, for what a doctor can do for you, my suggestions are to consider trying Elavil and and an anti-anxiety medication.
Feel free to Metamail me.
posted by ShooBoo at 5:30 PM on April 11, 2008
I've recently gone through a panic of similar sorts, especially involving the twitching. The twitches had been going on for about 4 years, and that entire time I was certain that I had MS, ALS, or brain tumor(s).
I recently got up the nerve to talk to my doctor about it. His comforting response was, "There's a million things that could be the cause, only a handful are really serious." I went through the full slate of blood tests, trips to the neurologist, and finally an MRI last week. And after 4 years of expecting the worst, there's absolutely nothing physically wrong with me.
You sound like almost as bad of a hypochondriac as I am. I can't watch ER or House because I'm certain that I've got whatever disease of the week they play off of. My only advice is to relax. There's a 99.999% chance that you're fine. Whenever I got burning sensations and the resulting panicky response, meditation killed both of them. Easier said than done, but relax. You're probably fine.
posted by hwyengr at 5:48 PM on April 11, 2008
I recently got up the nerve to talk to my doctor about it. His comforting response was, "There's a million things that could be the cause, only a handful are really serious." I went through the full slate of blood tests, trips to the neurologist, and finally an MRI last week. And after 4 years of expecting the worst, there's absolutely nothing physically wrong with me.
You sound like almost as bad of a hypochondriac as I am. I can't watch ER or House because I'm certain that I've got whatever disease of the week they play off of. My only advice is to relax. There's a 99.999% chance that you're fine. Whenever I got burning sensations and the resulting panicky response, meditation killed both of them. Easier said than done, but relax. You're probably fine.
posted by hwyengr at 5:48 PM on April 11, 2008
I assume your Vitamin D levels were checked? If not, do that immediately. Your symptoms, especially #1 and #2, are characteristic of a Vitamin D deficiency.
IANAD.
posted by COD at 5:55 PM on April 11, 2008
IANAD.
posted by COD at 5:55 PM on April 11, 2008
The diagnosis is just a means to an end -- the point is to get you better again.
If you get effective treatment for what ails you, then it's all good. If the treatment isn't effective, you go back to the docs and ask 'em to take another run at it.
Give the treatment your physician prescribes a chance. If it works, you've solved your initial problem and your new concerns all at once.
posted by winston at 6:07 PM on April 11, 2008
If you get effective treatment for what ails you, then it's all good. If the treatment isn't effective, you go back to the docs and ask 'em to take another run at it.
Give the treatment your physician prescribes a chance. If it works, you've solved your initial problem and your new concerns all at once.
posted by winston at 6:07 PM on April 11, 2008
Just wanted to mention that I wasn't meaning to be offensive with the hypochondriac comment. I was just trying to let you know that others have similar fears to yours. Such as me.
posted by hwyengr at 6:15 PM on April 11, 2008
posted by hwyengr at 6:15 PM on April 11, 2008
Variant CJD is extraordinarily rare. Symptoms like yours are not extraordinarily rare, but they are often difficult to pin down.
The only thing I'd mention is that EMG is extremely operator dependent. You want someone doing that study who has additional training in clinical neurophysiology, preferably a nerve and muscle fellowship. A lot of your docs out in private practice are kind of 'winging it' with regard to that study, which is the most lucrative hour a private neurologist can bill for. In other words a lot of EMGs get done that aren't really interpreted correctly, or even done right.
You might go for a second neurology opinion at your nearest university medical center - one with a residency training program and some good smart old faculty docs. Your problem is neurologic; that much is clear from your description.
posted by ikkyu2 at 6:21 PM on April 11, 2008
The only thing I'd mention is that EMG is extremely operator dependent. You want someone doing that study who has additional training in clinical neurophysiology, preferably a nerve and muscle fellowship. A lot of your docs out in private practice are kind of 'winging it' with regard to that study, which is the most lucrative hour a private neurologist can bill for. In other words a lot of EMGs get done that aren't really interpreted correctly, or even done right.
You might go for a second neurology opinion at your nearest university medical center - one with a residency training program and some good smart old faculty docs. Your problem is neurologic; that much is clear from your description.
posted by ikkyu2 at 6:21 PM on April 11, 2008
I just checked with my with my wife, who had those exact symptoms last year. She went through an Internist, Endocrinologist, Infectious Disease specialist, and rheumatologist. They talked about Lyme Disease, fibromyalgia, Mono, and all sorts of weird things. It turned out to be a Vitamin D deficiency. He original blood work showed a normal Vit D level, but her doctor retested it after two months and it was way low. After her first week on prescription Vitamin D supplements she felt 1000% better. After a few weeks she was back to normal and hasn't had any further problems.
So I like I said above, make sure they checked your Vitamin D. If they did early on, have it checked again.
posted by COD at 6:26 PM on April 11, 2008
So I like I said above, make sure they checked your Vitamin D. If they did early on, have it checked again.
posted by COD at 6:26 PM on April 11, 2008
I've read in the past that to get vCJD you need a very specific genetic polymorphism. While recent research on this disease is still a bit sparse, pub med does throw up a 2006 paper which agrees with this hypothesis.
Also keep in mind that vCJD itself is vanishingly rare, pretty much no one has it on a world scale. Fibromyalgia or something else is much much more likely. It's just that vCJD and other prion diseases are interesting and kind of scary so they are way over represented in the media or searching the internet, they're just more fun to talk about than fibromyalgia or straight insomnia or whatever.
posted by shelleycat at 6:32 PM on April 11, 2008
"The advent of variant Creutzfeldt–Jakob disease has confirmed one of the most powerful human genetic susceptibility factors, as all tested patients have an identical genotype at polymorphic codon 129 of PRNP."You may be able to get tested for this polymorphism. While having it doesn't mean you automatically have the disease in any way, not having it most likely means you don't and would put your mind at ease. Keep in mind that you'd have to not only have the correct genotype but also have been exposed to the correct prions, a combination that is very unlikely.
European Journal of Human Genetics (2006) 14, 273–281. (full text is free)
Also keep in mind that vCJD itself is vanishingly rare, pretty much no one has it on a world scale. Fibromyalgia or something else is much much more likely. It's just that vCJD and other prion diseases are interesting and kind of scary so they are way over represented in the media or searching the internet, they're just more fun to talk about than fibromyalgia or straight insomnia or whatever.
posted by shelleycat at 6:32 PM on April 11, 2008
Get tested for Lyme Disease (assuming you are or have been in the Northeast USA). It can cause many symptoms, and you may never have (or notice) the tell-tale bulls-eye rash.
That's what this guy ended up having after asking for advice.
My father had various symptoms (fatigue, joint pain, was always cold) for more than a decade before being diagnosed last year.
posted by ellenaim at 6:52 PM on April 11, 2008
That's what this guy ended up having after asking for advice.
My father had various symptoms (fatigue, joint pain, was always cold) for more than a decade before being diagnosed last year.
posted by ellenaim at 6:52 PM on April 11, 2008
I understand that you're freaking out; believe me, I've been there!
This is exactly why self-diagnosis, whether it be for Lyme Disease, ADHD, Asperger's, cancer, or
variant creutzfeldt-jakob disease is a VERY BAD IDEA. Because your anxiety level is so high (understandably) that you have a hard time being objective or distinguishing between physical symptoms and symptoms which are a side effect of your anxiety.
In my own case, the doctors and I were only able to figure out what was wrong after my anxiety was under control; I was freaking out because I was sick, but the freaking out was adding symptoms making a differential diagnosis way more difficult.
Seriously, stop googling to figure out what is wrong with you. ( Once you get a diagnosis, googling to make sure you understand treatments, etc, is a different matter). It's not going to help and it may well hurt by keeping your anxiety level so high.
Take variant creutzfeldt-jakob. There has been, so far as I am aware, exactly ONE case of it in the entire United States, ever. And that guy got it from Great Britain, not the United States; he moved here after he got it. So you have two possibilities. Either you are the very first documented case of this disease aquired in the United States in all of history or your anxiety level is so high that you are finding it impossible to distinguish between realistic and unrealistic fears.
Seek help for the anxiety first. Whatever is left after you take care of the anxiety are the actual symptoms.
posted by Justinian at 7:06 PM on April 11, 2008
This is exactly why self-diagnosis, whether it be for Lyme Disease, ADHD, Asperger's, cancer, or
variant creutzfeldt-jakob disease is a VERY BAD IDEA. Because your anxiety level is so high (understandably) that you have a hard time being objective or distinguishing between physical symptoms and symptoms which are a side effect of your anxiety.
In my own case, the doctors and I were only able to figure out what was wrong after my anxiety was under control; I was freaking out because I was sick, but the freaking out was adding symptoms making a differential diagnosis way more difficult.
Seriously, stop googling to figure out what is wrong with you. ( Once you get a diagnosis, googling to make sure you understand treatments, etc, is a different matter). It's not going to help and it may well hurt by keeping your anxiety level so high.
Take variant creutzfeldt-jakob. There has been, so far as I am aware, exactly ONE case of it in the entire United States, ever. And that guy got it from Great Britain, not the United States; he moved here after he got it. So you have two possibilities. Either you are the very first documented case of this disease aquired in the United States in all of history or your anxiety level is so high that you are finding it impossible to distinguish between realistic and unrealistic fears.
Seek help for the anxiety first. Whatever is left after you take care of the anxiety are the actual symptoms.
posted by Justinian at 7:06 PM on April 11, 2008
Can you define 'normal' B12 levels? Also concur on the Vitamin D test. I'd take a B12 supplement (just to be sure).
posted by arimathea at 7:42 PM on April 11, 2008
posted by arimathea at 7:42 PM on April 11, 2008
I did the same thing until I got my anxiety under control. I was sure that I had OCD and several other mental and physical disorders. Then I started taking an anxiolytic (not an antidepressant....I hate those. I take a benzodiazepene). Turns out that *all* of my symptoms were anxiety related. Insomnia, twitches, random throat-closing feelings, etc. All anxiety caused.
As with many others in this thread: Anxiety feeds on google searches. I spent around eight hours looking up my symptoms, and as they went on, I kept on "discovering" new symptoms that I thought I had. Every inane event in my life was now classified as a symptom of some horrible disease.
posted by nursegracer at 12:25 PM on April 12, 2008
As with many others in this thread: Anxiety feeds on google searches. I spent around eight hours looking up my symptoms, and as they went on, I kept on "discovering" new symptoms that I thought I had. Every inane event in my life was now classified as a symptom of some horrible disease.
posted by nursegracer at 12:25 PM on April 12, 2008
Please also make sure an MMA was performed when the B12 was drawn. Different labs use different reference levels for B12, and there is no "normal" per se, just different amounts that may or may not be protein bound. An MMA is a more exact way to determine whether or not there is sufficient B12 available for the body to properly repair neuronal tissue, specifically myelin. Your case is definitely peculiar, and I think that calling it fibromyalgia is so much nonsense until you've discussed it further with a University neurologist for a second opinion.
posted by docpops at 9:54 PM on April 12, 2008
posted by docpops at 9:54 PM on April 12, 2008
I'm also wondering why the doc decided you don't have ms without an MRI. EMGs aren't really diagnostic of ms. I have ms and went through several rounds of EMGs without showing any abnormalities, but MRIs finally resulted in a diagnosis.
posted by words1 at 10:36 PM on April 12, 2008
posted by words1 at 10:36 PM on April 12, 2008
Thanks for your advice, everyone. A couple of updates:
- I've had a Lyme titer already. Negative.
- I've just upgraded my insurance plan to a PPO, so I'm no longer necessarily constrained to a very small set of specialists, and 1-2 month long waits for followups, visits, tests, etc. Hopefully this will let me bypass my present Neurologist if he declines to test further.
- I've purchased D and B12 supplements, so we'll see if that helps.
posted by 34centstampede at 10:01 PM on April 14, 2008
- I've had a Lyme titer already. Negative.
- I've just upgraded my insurance plan to a PPO, so I'm no longer necessarily constrained to a very small set of specialists, and 1-2 month long waits for followups, visits, tests, etc. Hopefully this will let me bypass my present Neurologist if he declines to test further.
- I've purchased D and B12 supplements, so we'll see if that helps.
posted by 34centstampede at 10:01 PM on April 14, 2008
This thread is closed to new comments.
[IANAD]
posted by availablelight at 5:12 PM on April 11, 2008