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Lifetime of... maybe?
4 Replies
Kayteb - November 10

I wanted to post this up... because I have a very simple question about FMS that no doctor seems to be able to answer.
I have to start with a quick what- about.
From young child hood I have been seeking help with problems I now know are consistent with FMS, mainly IBS, fatigue, seasonal depression, skin rash, migraine headaches, weight gain, trouble sleeping, and chest and cervical pain. These things have slowly appeared over time, starting with what was diagnosed as "severe lactose intolerance" and IBS.

I became curious about FMS when I became pregnant with my son and my skin became extremely sensitive. I brought it up with my doctor and he blamed it on hormones. After I had my son I noticed the pain was beginning to spread from around my rib cage, down to my arms and legs.

It occurs only when pressure is applied to my skin, and the smaller the pressure point is, the worse it hurts. It's a delayed pain that spreads out from the touched area. Which sounds EXACTLY like FMS. Except one thing, the reason doctors have spent 12 years unable to give me a single word about what may be wrong with me, is that the pain is solely in my skin, not my muscles. I have some pain in my lower back, but I can't tell if that's a symptom or just a result of normal stresses.
I wanted to find out if there was anyone that has been diagnosed with FMS that suffers from pain not in their muscles, but in their skin?


Kayteb - November 10

I also have to add that another reason my doctors have shaken their heads at the idea is because my pain is not debilitating. It affects me briefly, (though consistently) though my other symptoms, such as IBS and headaches have affected my life in a medium degree. But there is such a thing as milder cases, so why does that get ignored?


Fantod - November 11

The problem you are describing is called allydonia. It is common in people with Fibromyalgia (FMS). I have it myself and it causes me no end of trouble. Some days I have difficulty with clothing - any pressure against my skin becomes unbearable. I do have the pressure ponts associated with FMS as well.

My suggestion would be to see a fibro-friendly rheumotologist to see what they think. Not all rheumotologists are created equal. Some do not believe FMS exists and/or are indifferent to treating it. Fibromyalgia is recognised by the Center for Disease Control and the National Arthitis Foundation. Unfortunately, there are still a lot of medical professionals who chose to disregard Fibromyalgia and think the patient is a neurotic malingerer.

Another possiblity that should be explored is gluten sensitivity. You may be sensitive to gluten but not enough to have full blown celiac disease. A huge portion of the population is gluten sensitive and don't know it. This may be a contributing factor to your pain and IBS. The best and most accurate test is done with a stool smaple. Bloodwork is not always accurate.

Go to the National Fibromyalgia Association website and register. Then you can see a list of fibro-friendly providers in your area. You could also call your local hospital physician referral service and ask them for a rheumotologist and/or a pain specialist (I have both) with an interest in FMS.If you have any recent bloodwork or other tests available get copies to save time and expense when you see the rheumotologist. I believe it is possible to have a diagnosis of FMS without all of the pressure points etc. Mine vary on a daily basis.

Take care and let us know how things turn out.


Fantod - November 11

I had another thought on your situation. You should also be tested for a vitamin D deficency. A low level will also cause pain. I hope that my comments are helpful to your in some way. Take care.


axxie - November 11

Hello Kayteb, have you gotten checked and have you gotten testing done! It could be a few things wrong, that also mimic fibro.

I tend to rule with Fantod on this one, you need a fibro-friendly rheumy, or I have found many gp either don't understand fibro, or have ill conceive notion of what fibro is about.

Good luck to you



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