autoimmune disease or fibromyalgia?

[Only me]

For past 2 1/2 years I have had severe back pain and several other symtpoms. I was diagnosed with fibromyalgia but my pain specialist thinks that my back pain is a separate issue. My main symptoms used to be the back pain, general achiness (worse sometimes than others) and fatigue. At that time my primary care doctor did bloodwork and found that I had an elevated ANA so she sent me to a rheumatologist. Further testing apparently ruled out Lupus and rheumtoid arthritis. I left with a diagnosis of fibromyalgia. I've been on every type of medication imaginable and nothing helps. My back pain is somewhat controlled with pain pills but since I can only take them at night I'm miserable for most of the day. Nothing so far has helped my fatigue.

 

Over the past several months I've also started to experience severe joint pain (knees, hips and sometimes elbows, thumbs and toes. It tends to be worse certain times of the month but last month the severe joint pain lasted 10 days. My fatigue has also increased and I've started to develop a faint rash on my face. During the 10 days of more intense pain I had several episodes of getting a rash after taking a shower (no new soaps, etc.). I also noticed last summer that anytime I went out in the sun that it made me feel sick, although I didn't necessarily get a rash. My face rash is never very bright but does get brighter at certain times.

 

I went to my primary care doctor again last week. She did repeat blood tests. I am low on vitamin D so I've started taking extra supplements. My ANA was elevated again but this time a little higher than last time 1:320. Everything else came back normal and she took quite a few tests. The primary care doctor was still concerned about possible Lupus (especially since I have a family history of Lupus as well as other auto immune diseases). I went to the rheumatologist today. He asked me a few questions but pretty much ignored anything I said about fatigue or my family history. Since my other blood tests were negative he doesn't feel that I have lupus and gave me the diagnosis of fibromyalgia and possible rheumatoid arthritis. He gave me no explanation for my increased fatigue, the fact that the joint pain seems to have flares and at the same time I tend to get a rash. He wants me to exercise more. I always do daily stretches and when it was warmer I would try to go for short walks but that is about all I can handle. I just couldn't get the doctor to understand just how tired I am. After I go grocery shopping I'm so tired and in so much pain that I have to come home and lay down. (I'm in my mid 40's). I keep pretty busy running around with the kids so it's not like I'm just sitting around all day but I am constantly tired.

 

I realize that a positive ANA doesn't necessarily mean anything but since I have had a positive ANA test two years apart and it went up I'm a bit concerned. I know other people with fibromyalgia and they don't seem to have the severe pain and fatigue that I have. I am normal weight and I am in otherwise good health. I'm just wondering if I should get a 2nd opinion or accept the fact that this is just fibromyalgia and there is nothing that can help it.

[Jean in Newcastle]

I've had fibro for over 20 years. I have pain - joint and muscle to some degree almost every day. In a flare, it will be worse. I often get flares around that time-of-month (or right before). I get a faint red rash on my face which feels sunburn. I don't do well in the sun. I have fatigue. I treat my fibro with natural treatments - curcumin for inflammation, vitamin D for my deficiency (which is chronic), potassium, magnesium and calcium for muscle problems, adrenal supplements for the fatigue. I did get some relief from an anti-parasite treatment that took me from being a semi-invalid to being functional.

[kalanamak]

SEcond opinion.

 

There are some GREAT rheumatologists out there. Get one.

[shanvan]

Thanks, Jean, for posting about the redness that feels like a sunburn. I get that at times too, and was trying to explain it to my doctor. I was worried about having yet another symptom. Strangely I feel better knowing someone else gets it too.

 

OP, My experience is very much like Jean's and I also treat with supplements, using pain med only when absolutely necessary and in evening unless things are so bad that there is no way I can leave the house (which has thankfully only happened a handful of times in the past couple of years). Fibro can exhibit a wide range of pain and other various symptoms. Just b/c the people you know with it aren't having symptoms that are as severe doesn't mean you don't have it. When I had the crisis that finally took me back to my doctor for evaluation I ended up with a host of horrible symptoms and was only able to make it from the bed to the couch on a good day. Now a lot of my symptoms are more controlled --except for flares, as Jean mentioned. I had some pretty bad fatigue too. There were days when I just fell asleep constantly before I had a diagnoses.

 

Still it wouldn't be a bad idea to have a second opinion just for your own piece of mind and in case you really do have lupus.

[Sun]

I'm sorry you're having such a hard time. (I'd put a hug symbol in, but I don't know how now.)

 

Definitely get a second opinion. It doesn't sound like you like your rheumatologist very much or are very comfortable with his manner with patients. From what you've said, I wouldn't be either. Going through any sort of autoimmune issue is not fun; you really need a rheumatologist whom you trust.

 

I'm curious what testing "ruled out lupus" because there's not a definitive test for it. It's diagnosed based on a number of symptoms and abnormal bloodwork. Generally, you have to have had a certain number of symptoms cumulatively, not necessarily all at once.

 

You really need a doctor who listens to you. Please look for someone else. If you let people know where you live, someone here might have a good rheumatologist to recommend.

[sleepymommy]

I also have fibro and am treating it similarly to Jean. I take a slew of vitamins each day-CoQ10, B complex, Vit D, magnesium, womens daily, and recently added in Zyflamend. For awhile I took adrenal cortex for the debilitating fatigue. I feel much better than I did (fatigue wise) several years ago. At that time, I even the THOUGHT of exercise would overwhelm me. I've cut out coffee and decreased my intake of carbs. This helped with the fatigue.

 

That said, I would still try to get a second opinion if you can. Fibro is an autoimmune disorder and having one autoimmune problem can often lead to more, plus they run in families. I'm sorry your having such a rough time. (hug)

[kalanamak]

Fibro is an autoimmune disorder and having one autoimmune problem can often lead to more, plus they run in families.

 

FYI, it is not generally accepted that fibromyalgia is an autoimmune disease, and indeed, one of the hallmarks of it is that the SED rate, C-reactive protein, and other markers of inflammation are normal, and the ANA being positive (a relative thing) is no greater incidence than the general population.

 

There are lots of unclassified and nameless autoimmune disorders that may be called fibromyalgia by those who are either bent on having a specific name for everything, or not experienced enough to know there is a lot of gray area in rheumatology.

Look at the diagnostic criteria for RA. If you have X symptoms and finding, you "have" it . If you have X-1, you don't.

[Jean in Newcastle]

Fibromyalgia Syndrome is a syndrome - ie. a collection of symptoms. It is not technically a disease because so far anyway, they have not specifically pinpointed one causal agent for those symptoms. The most recent theory I've heard is that it is a central nervous system problem having to do with the processing of pain. But my personal experience is that there is a whole bunch of layered reasons which may all work together to give a general collection of symptoms.

[helena]

I'll 2nd (3rd?) trying a new rheumy. I have Lupus (SLE). I stuck with the same dr for way too long. I felt funny about switching... why? I don't know.

 

Gentle hugs :grouphug:

 

I get shower rashes too. It feels sooo good to take a warm bath or shower (achy bones), it's so unfair that it then turns on you!

[Myeightkiddies]

SEcond opinion.

 

There are some GREAT rheumatologists out there. Get one.

 

I agree. There are definitely some great Rheumatologists out there; however, there are some that are horrible. It's time to find a new one. If you have Lupus or RA, you need to be correctly diagnosed and treated. These diseases affect many organs, not just joints or fatigue. You doctor should be listening and talking to you. RA, for example, can exist in patients who don't test for it via blood work. There are other tests that can and should be done. I hope you find someone soon.

[nrg]

Perhaps the more severe back pain is a separate issue. Have you had an MRI of the region of your spine which is affected? About 10 years ago my situation was much as you describe yours to be. The back pain turned out to result from disc problems, and was not part of the autoimmune picture.

[BlueTaelon]

This is just mnsho, a fibro dx is code for we don't know and I can't be bothered to find out. I was in terrible pain for a long time and Dr did the usual tests like you had which was neg and said "well, sorry, its fibro" and basically said suck it up and deal with it. The source of my pain was caused by a blood disorder called "Pyroluria" which is detected with a simple urine test (do it on your own, your Dr is pretty much guaranteed to mess it up!) which causes a severe functional deficiency of zinc and B6 so while blood levels look normal it can't get into the cells due to the pyrolles binding to it. This in turn causes a chain reaction of other vitamin and mineral deficiencies, I know for me it causes it a severe manganese deficiency which was the source of the constant burning pain I was having. Since treating this deficiencies my pain is gone, if I miss a couple days for what ever reason (usually ran out and didn't realize I was out out) the pain comes back with a vengeance. Makes me angry that Dr's let people suffer because they don't know a bleepin thing about nutrition and the misery a simple deficiency can cause.

[Guest Kit Minden]

Have you been checked for the Epstein Barr Virus? (EBV or mono) You might also see a neurologist to check for MS. Many of us MSers have also got fibromyalgia.

 

Do some research on vitamin D, and consider increasing the amount you are taking. If the blood test shows you are low, you can get a script for it for 50,000 IU twice a week. Use Now softgels the other days - get 5,000 IU and then try 5,10, 15, etc until you find the level that helps. (Staying under the 50,0000 IU). It has only been found to be toxic at high levels with the script many more days a week, and rarely, at that. It increases the calcium in your blood, and that's what the blood test checks. Get retested every 3 months.

 

Did the blood test check your B12 level? If low, you can do injections at home for about $1 per syringe.