What is the cause of this muscle condition?

October 2, 2007 8:59 AM

Diagnose this muscle condition; my physician cannot. For the last four months my fiancée has suffered from a so-far-unexplained muscle soreness. We are about to see our third specialist, as every doctor so far has drawn a blank. Before our upcoming appointment with the next rheumatologist, I thought it couldn’t hurt to post the question here. First I’ll describe the symptoms, then I’ll cross off the list all those conditions that various tests have shown not to be the cause. (more)

She experiences an overall muscle soreness and fatigue, much like after a full-body workout. The condition came on rather suddenly (over a weekend) and has persisted at the same level for four months, getting no better and no worse. It hurts to raise her arms above her head, to sit up, to bend over, to climb stairs. I have to help her get dressed and perform other normally routine tasks. She has no other symptoms: no facial pain, no twitching, no respiratory issues, no urinary tract problems—nothing, just a deep and abiding soreness in all major muscles, including legs, arms, stomach, and back.

Various tests have ruled out the following: pregnancy, dehydration, Lyme disease, liver disease, hepatitis, HIV, and myositus. The doctors ruled out nerve damage by performing electrical shocks through needles inserted into her leg muscles. The only oddity they’ve found is a heightened enzyme count. At first, the enzymes were incredibly high. Over the last few months, they’ve come down considerably, but are still above normal. Other than that, the doctors can find no hint of anything wrong.

My frustration stems from the doctors themselves. It seems like they’re dragging their feet. The latest rheumatologist said that, in his final analysis, he believes that a virus of some sort is to blame, and eventually, the enzyme level will return to normal, and she’ll feel fine again. He scheduled her next appointment FOR JANUARY. Now, something tells me that if this were his daughter we were talking about, he wouldn’t expect her to live in pain for the next four months. We have since had her files faxed to a highly recommended rheumatologist in another city. Our appointment is not until the 30th, unfortunately.

I’ve scoured online resources but can’t seem to nail down a good suspect for the cause of her condition. I greatly welcome and deeply appreciate any advice. Feel free to post here or contact me at [e-mail]. Thank you!

posted by jackypaper to health & fitness (23 answers total)

I've heard anecdotal reports of several distant family members and family friends who have had Lyme disease, but it went undiagnosed for years, because apparently (I am told) it is very common to have false negatives in the Lyme test. One family member went for seven years trying to find a doctor who would investigate his Lyme symptoms furthers, but none would, once he tested negative. Then he finally found a nurse practitioner who "knew" of another way to test for Lyme. I realize this is very vague, but maybe don't rule out Lyme disease yet?
posted by chr1sb0y at 9:05 AM on October 2, 2007

sounds a lot like my sister's FMS. Be forewarned, however: a lot of doctors don't even 'believe' that this exists. Syndromes are notoriously hard to define and definitively finger, and on the other hand, a lot of times it's a diagnosis made because nothing else fits, as you no doubt know.
posted by buka at 9:14 AM on October 2, 2007

I have fibromyalgia, and those sound like the symptoms. It took me almost a year to get a diagnosis. (It was a neurologist/rhumatolgist who finally diagnosed.)

We're current trying a drug regime that includes Wellbutrin XL 300 mg (NOT GENERIC! The Generic is evil.) and hydrocodone for breakthrough pain.

There are other drugs out there, but I selected Wellbutrin because it doesn't have weight gain side effects, and getting off of it is pretty easy compared to some of the other antidepressants. The neurologist said that they're not sure why antidepressants seem to help with neuropathic pain, but it seems to help a significant number of patients.

From my perspective, it seems to have helped with some of the symptoms, especially the "brain fog" that is a common symptom of fibro.

On the plus side, fibro is not generally a degenerative disease, so once it's diagnosed and a workable regime has been prescribed, it doesn't require a lot of medical intervention.
posted by Peecabu at 9:14 AM on October 2, 2007

Thirding the fibro suggestion. My wife has it and went through the same round of BS, ineptitude and general indifference from the medical community for months.

Obviously, see a doctor. I'm surprised the rheumatologist didn't think about fibromyalgia. Keep going to new ones until you find one that will listen and takes you seriously. One asshole told my wife she was simply depressed because she hadn't had children.

Things that work for her are heated blankets at night, sleeping with one of those body pillows between her legs (eases the hip pain), pilates/yoga and eating right. I know all that sound hippie-ish, but when she veers too far from that regime it gets worse. Cold weather doesn't help either.
posted by Atom12 at 9:22 AM on October 2, 2007

Seconding the Lyme disease. The blood tests are great, the easiest way to know for sure is to start the treatment and see if you get better.
posted by fshgrl at 9:28 AM on October 2, 2007

That should read " the blood tests aren't great".
posted by fshgrl at 9:29 AM on October 2, 2007

Wellbutrin XL 300 mg (NOT GENERIC! The Generic is evil.)

Yeah... They're exactly the same. Just sayin'.

Anyway, yeah, I know some people with fibromalgia, and I know a guy with lyme disease. Either or, really. (I'll save my opinions about FMS; let's just assume the people I know who "have it" are probably just poor representatives.)

As for the doctors, well, not everyone is Dr. House. It's a rare breed of physician who'll actually put in all the time necessary for a mystery diagnosis, since all that time could be better spent with patients they actually know how to help.
posted by Reggie Digest at 10:26 AM on October 2, 2007

Fourthing the fibro suggestion...not for sure, of course, but it sounds possible. No responsible doctor still denies that it exists, though they may be hesitant to make a diagnosis. Some other hints (IAAF)
- is it worse when she gets up, and relatively better later? Strain is strain, of course, but I'm told this is a relatively standard symptom
- Omega 3-6-9 taken daily is very helpful to myself and other fibromyalgics I know
- seconding yoga...it won't make the pain go away, but it's very helpful
- "eating right" may also include avoiding inflammatory foods

Good luck!
posted by sarahkeebs at 10:27 AM on October 2, 2007

Seconding the Lyme disease. The blood tests are great, the easiest way to know for sure is to start the treatment and see if you get better.

Considering the standard treatment would be a prolonged course of heavy antibiotics, this is at best irresponsible and at worst dangerous.

OP: Please don't do this.

Check into Fibro, though. Be careful and don't make up your mind on your own. It's one of those things that truly exists and truly causes problems but that a lot of people diagnose themselves with.
posted by Justinian at 10:37 AM on October 2, 2007

In case you haven't read the wikipedia entry yet on Fibromyalgia, it lists other diseases with similar symptoms. I don't have any medical training, but if all these people think it might be Fibro, then maybe it's one of these other diseases with similar symptoms:

* Chronic fatigue syndrome
* Depression
* Ehlers-Danlos Syndrome
* Gulf War syndrome
* Influenza
* Lead poisoning
* Lupus erythematosus (SLE)
* Lyme disease
* Mercury toxicity
* Myofascial pain syndrome
* Tendinitis
* Thyroid disease
* Vitamin B12 deficiency
* Vitamin D deficiency
* Whiplash-associated disorder
posted by davidstandaford at 10:43 AM on October 2, 2007

Is she on statins for controlling high cholesterol? There is a rare side-effect of statins which destroys the muscle tissue. Don't know the medical name but you can google it.
posted by Parsnip at 10:46 AM on October 2, 2007

Good point by Parsnip; it does sound very much like a (serious) side effect caused by some medications.
posted by Justinian at 10:54 AM on October 2, 2007

I was actually also going to ask about the cholesterol drugs, although it seems like it should have been easy for a doctor to spot that. Also nthing Lyme, and suggesting Lupus.

Also, has anyone checked her thyroid levels? That's usually pretty routine in blood tests, I thought, but maybe not?
posted by dpx.mfx at 12:22 PM on October 2, 2007

I agree with your physician, although I share your frustration. I think she had a virus and her body had an overwhelming response to it. I think that because it sounds identical to something that happened to me, although there was far more joint than muscle pain. Enzymes behaved similarly and it did resolve over 6 months although incredibly slowly.

A complicating factor is her psychological response to chronic pain and dis-ease, literally the lack of ease. It is in fact possible even if the physical symptoms are improving for her to still feel like shit. It goes like this, ""they can't find anything wrong, (my God is it some weird and fatal illness??) I should be feeling better in theory, why am I not feeling better, this is so frustrating.....etc., etc.," This can magnify the pain ( I am NOT suggesting this is in all in her head, people can actually "learn" their pain which causes huge problems once the underlying physical symptoms ease. One can become focussed on being ill, rather than being well. This is to be avoided in any way possible)

Helping her with this, is likely to be far more productive than the search for something missed or exotic.
Anything that provides reassurance ( I know, I know a diagnosis would be ideal but may not always be possible ina case like this) or distraction, what does she really enjoy, massage, aromatherapy, travel, even CBT to help her deal with the pain and frustration?

(also dpx.mfx I'm sure her rhumatologist did a full blood panel including Thyroid, it's pretty basic)
posted by Wilder at 1:29 PM on October 2, 2007

A friend of mine presented with excrutiating muscle pain and it turned out to be celiac disease.
posted by tristeza at 3:25 PM on October 2, 2007

This is VERY UNLIKELY to be fibromyalgia despite what others have said. Period. Having elevated enzymes (I presume you're talking about creatine kinase and aldolase) is not a feature of this disease.

Moreover, if she hasn't had a a muscle biopsy, myositis can't be ruled out in this scenario even without confirmatory findings on EMG (I assume that's why you were told it isn't myositis). In any event, you're doing the right thing by finding a good rheumatologist.
posted by drpynchon at 8:05 PM on October 2, 2007

I just dropped Lipitor (statin) because of the muscle aches I got from it.

But if I was a betting man, I would still say Lyme even though it has been ruled out.
posted by JohnnyGunn at 8:16 PM on October 2, 2007

Yeah, Fibromyalgia doesn't fit if there were indeed elevated muscle enzymes.

PMR is much more likely, though it would be odd if it wasn't considered immediately.
posted by docpops at 8:53 PM on October 2, 2007

It is true that elevated enzymes are not a typical feature of Fibromyalgia. That doesn't mean you can rule out FMS though. In fact, I'm N-thing the general consensus that FMS is your culprit. However, there is another condition that is different but can feel the same as FMS. It's called Polymyalgia. Apparently Polymyalgia has a component of inflammation, while FMS does not.

Check out the Mayo Clinic website for info.

You and your fiancee should know that most doctors do not know about FMS, don't understand it, have no idea how to handle a patient with it (or with any hard-to-define condition, for that matter.) You can expect to go around in circles for a long time until you find someone who can and will help. It is very difficult to diagnose, but her history is very clear and obvious, and typical.

FMS often develops suddenly, usually after some sort of physical trauma. It seems to appear most often after accidents and viral illnesses. It's not degenerative.

My advice, whether your Dear One has FMS or not, is to find a doctor who will take her pain and discomfort seriously and give her something for it. This may be difficult. Try a Dr. of Osteopathy or a specialist in pain management, if you can't get a rheumatologist to help.

I've had FMS for fifteen years. I will be very happy to go into more detail or answer questions offline, if you like. Please feel free to email me. I wish you and your fiancee the best -- she's lucky to have you!
posted by shifafa at 8:54 PM on October 2, 2007

Let me reiterate. Elevated enzymes are not consistent with fibromyalgia. Fibromyalgia is a clinical diagnosis which is hard to rule out, but if you have high elevations in CK it is due to something else that needs to be investigated.
posted by drpynchon at 7:05 AM on October 3, 2007

Reggie Digest said: (About generic vs brand wellbutrin) Yeah... They're exactly the same. Just sayin'.

No, actually, they're not. The generics has some sort of filler that many, many, many people have reacted to. All had side effects that went away when they were switched to brand name. Not all generics are created equal. Sad, but true.
posted by Peecabu at 12:53 PM on October 3, 2007

We had suspected my Aunty was suffering from Hypochondria for years but after persisting with many different doctors it seems it was Fibromyalgia. (We were like 'well there you go, there actually was something wrong with her after all...')

http://en.wikipedia.org/wiki/Fibromyalgia#Variability_of_symptoms

There was a list you may also be interested in exploring on this page too.
posted by mu~ha~ha~ha~har at 4:01 AM on October 4, 2007

Bing. Fibromyalgia.
posted by gmodelo at 10:13 AM on November 26, 2007