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Could this be FMS?
10 Replies
9na - May 23


I'm struggling quite a lot of symptoms, some constantly, others vary from day to day (or even hour to hour...). I forst saw the doctor about a year ago, not much have happened. Dozens of blood-tests have been taken, the only thing found was Vitamin d deficiency (I've supplemented and am now in good levels). Next is biopsy to check for celiac (blood test was fine, but I hear they can be).

Well, I'm getting scared with new symptoms (and the 'old' ones...), and now I just want to list my symptoms (and describe them very shortly), and ask you guys - could this all be Fibromyalgia? (It has been mentioned, but i haven't been tested.)
I'll list the symptoms in the order they appeared:

1) Giving birth (haha!- but it all started some months after my youngest was born, so I guess that could have started it all?)

2) Chest pain/pressure. Shortness of breath when exhausted.

3) Fatigue

4) Scalp pain/burning, mainly right side. My skin in the scalp is fine (or not - very dry, because of my thick and long hair... but the skin is not the problem..). It started as little 'dots' that was painful to the touch, now it is a bigger area. Changes a bit. I also have a heavy head/headaches from time to time, but nothing too horrible.

5) Tingling in fingers and toes. Also numbness, mainly left hand and fingers.

6) Bowel trouble. Most of the time I have bowel movements minimum twice daily, sometimes as much as 3-4-5. Not much pain, but a little from time to time.

7) Joint pain

8) Dry eyes - severely. My eye doctor also found that I have too little tear-production. Worst in right eye.

9) Dizzy spells

10) Nausea

11) Ears ache, and in periods they are 'clogged' very easily. This started a short time after I started wearing glasses (because I could no longer wear contacts), so I wonder if that is causing it? I hurt both in and behind the ears.

12) Neck and shoulder pain, neck feels stiff, a bit more tender to turn the head to the right than to the left. Muscles are sore.

13) Back pain, but that might be from all my sitting around...since I often can't manage to do much...

14) Burping. I burp a lot sometimes. Often after I eat, but sometimes even as I get up in the morning etc.

15) 'Cramps' on my left side, just below the ribs. This went on for a while, then disappeared.

16) Cold sensation - or what should I call it? Like shooting cold across my scalp, or through my thighs or from the neck down. Very unpleasant. But I've started taking B12, and there have been less of this lately - hoping it means the vitamins are helping.

I probably forgot something, but these are at least many of my symptoms.

Some days I'm pretty good. Others are horrible. I also get really really scared often when I'm bad. I fear I have a brain tumor and can't seem to cope... I've been to a neurologist (on a good day...), she found nothing to worry about from her side.
My GP also says this does not seem dangerous. But I'm eager to know WHAT IT IS! I'm sick and tired and depressed from the fair and the not knowing anything..

Oh, and I think that I often get worse around my period (before or during), but not always. I also have believed that weather changes are bad for me (when it gets gray/rainy, for example). But it could be coinsidential...

Well, I could write for days, but I'm actually impressed if any of you have read all that I've written so far, so I'll end it here...

Thank you! :)



Pikespeak - May 23

Hi 9na! I read the whole thing! Wow! Most who post on here will relate to some of your symptoms. I am curious if you are taking any medications right now that could be CAUSING some of your symptoms?

My first idea is for you to journal daily about your symptoms/diet/activities/meds. This gives you something concrete to show your GP (not to mention your seriousness in finding answers).

I specifically will address burping, as I have GERD. There are lists of foods to avoid, not eating after dinner, not lying down after a meal, etc. that might help you to lessen your burping. For instance, I cannot eat raw carrots or drink carbonated sodas. I can't say that this is related to FMS, but I do live with it daily just like FMS. I find that taking one Nexium at night (with my sleeping pill) works for me.

Doing your own homework and research will help you to take control of your situation. Reading the posts of others on here will be invaluable as you gather information. I hope you feel better soon!


9na - May 23

Pikespeak - Thank you for you insights! :)

I'm not currently on any medication, no - just the vitamins mentioned.

I have actually kept a kind of a journal for some months - I note down what I eat and how the days goes by, symtomwise. I can't say that I have seen much when it comes to what I eat, but then again I'm not sure what to look for...

I will remember to avoid lying down after a meal! But no eating after dinner? We have dinner at about 4 - I can't go hungry to bed, can I?

I also feel like adding that my joint- and muscle-pain aren't as bad as they were - I think I can thank the D I've been taking, really. The chest pain is also much better, it was actually gone for quite some time, but returned quite recently..

I will be reading in the forum, and try to be prepared for my next doctors visit ;)


Pikespeak - May 24


It takes about 4 hours for your food to digest, so count back 4 hours from bedtime! Fruits, chocolate, etc. can cause acid reflux, so just choose wisely what you snack on in the evening...


January - May 24

Hi 9na - just a note about the celiac biopsy. The intestinal biopsy is invasive surgery with all the risks attached - so you might want to research a bit. I have read that it's the "gold standard" for diagnosis. I say "Baloney" and here's why. The small intestine is almost 20 feet long. Celiac disease causes PATCHES of the intestinal mucosa to die off. If they snip biopsies from places where the mucosa are NOT dying off, you will get a false negative. I've read about this, it happens. If you get a "negative" test result, but you really DO have celiac and continue to eat cereal grains, you will eventually become very sick.

I've seen a renowned celiac researcher/specialist - after being gluten free for four years, my blood tests were clear. I refused to go back to eating gluten just so they can test my blood again. He was OK with that. He didn't even mention the intestinal biopsy to me. Based on my history and good response to the diet, he diagnosed me with gluten intolerance; it's possible I have full blown celiac, but it's a continuum. Celiac is just the most severe form of gluten intolerance. But the only treatment for any gluten intolerance is to stay away from gluten. Done with vitamins and mineral supplements, it's a very healthy diet and worth a try. Check out the Celiac Sprue Association. They have good info. You will see many of your symptoms listed there. Fatigue and depression are major symptoms, along with abdominal and back pain, neurological symptoms, etc. (The best list of symptoms I've seen is the pages in the back of the book Dangerous Grains - a LOT of symptoms!!)
Also, celiac CAN be triggered at any age by a stressor like pregnancy. I just posted a thread about this. Celiacs can be deficient in many different vitamins - so you might want to get tested for other vitamin and mineral deficiencies.

The best way to find out if you have it, I think (having done it myself) is to go gluten free for a year. A year was when I noticed great improvement in my pain and depression AND in my digestive health, which was not bad to start with. Some people notice a difference even in a month! It takes about 4 months for the intestine to fully heal itself. So if you go 12 months gluten free - then eat bread and cereal for a few weeks - you should notice a big spike in pain and depression or whatever other symptoms you have. Then you will have to start at square one to heal yourself, but you should have an answer. I think this is a better way to diagnose yourself than surgery that might give a false result. (Remember, the doctor is making money off your surgery, and they are in "business" to make money. And remember that the stress of surgery is hard on your body.) You might want to go ahead with it, but I'd suggest some research first. You could go on the forums at celiac central and ask people their experiences. Wishing you luck with getting a proper diagnosis! That's the key to it.


Pikespeak - May 24

Hi 9na and January! Forgot to say that I just had blood drawn to see if I am gluten sensitive. If it comes back that I am, there is no question that I will become gluten-free! It's more than I want to take on right now, but will make the sacrifice if necessary. There are so many products now that make it easier to manage! Will keep you posted!


January - May 24

You know, once you learn the diet and get used to it, it is really easy. The only problem is going out somewhere else to eat, where food might be contaminated. I have never stuck to a diet in my life! This one is not that hard. Just no bread and flour. For cereal grains (wheat, barley, rye, oats, spelt, etc.) products, you substitute potato, rice, corn, tapioca and flour made from them. You can have amaranth cereal which tastes rather nice.


9na - May 24

Pikespeak - Ah, then I get your point! :) 4 hours seems reasonable. But I'm not bothered with reflux I think - I had that in my pregnancies... ;)
Also you say you had blood drawn to check for gluten intolerance. Well, I've had that test too, and it came back fine. But my GP says that this happens to quite a few people actually having celiac, so it's not very reliable really.. Just so you know ;)

January - Thank you for your concern and good advice! :) The biopsy is not surgery though, it's just a couple of minutes with a tube down my throat...? I have told my doctor I will have it done, and after that I'm going gluten free no matter what the results will be. A year seems a long time to wait for an answer, but I guess I will see symptoms improving along the way :)


Fantod - May 24

In place of the highly unreliable blood test and biospy the most accurate test for gluten problems is done using a stool sample. Why doctors do not do the test this way is beyond me. If there is a problem it will definitely show up there.


Fantod - May 24

With regards to the gluten test using a stool sample see Entero Lab which you can find using Google.


Pikespeak - May 24

Very interesting! Thanks for posting this!



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