Severe Joint Pain - Need Advice

[Rosiesallergies]

I'm new to this site and hoping to get some advice on joint pain. I'm a biopsy positive Celiac. Diagnosed about ten years ago. Very strict with foods, dedicated utensils and cookware. I used to eat out more but stopped because restaurants seem to always make me sick. I don't eat any night shards (tomatoes, potatoes, etc). Little alcohol.

My problem right now is severe joint pain. It's neck and shoulders this week. It's bad enough I've spent the week not moving and using ice bags and pain Meds. No relief. Another time it will be lower back, maybe feet or knees. My hands hurt and swell which make it very difficult to open drinks or jars let alone grip anything. The joint pain is not consistent in one area. Sometimes the joints are hot. I mainly take muscle relaxers and prescription naproxen for the pain. The only result is I sleep for hours, and the pain is still there when I wake. That makes it nearly impossible to hold a job. The rheumatoid dr has checked me for everything from several tick diseases to ra and other arthritis to lupus. According to his tests I'm perfectly healthy so maybe it's fibromyalgia and I'm dismissed from his care. I'm off to new primary dr this week to look for help and guidance.

Any suggestions about what might be causing my joint pain? How do I make it stop? I'm greatful for any ideas or suggestions.

[cyclinglady]

I'm so sorry that you're in so much pain!  

 

I'm not a doctor, but it sounds like fibromyalgia.  I don't have it, but my mother does.  She has her good days and bad, but she manages.  She was involved in a local university group who is doing research before moving away.  I've been in one of their research programs.  They have some links to support groups, etc.  

 

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I have Hashi's (for years) and I worked hard at staying healthy only to find that instead of getting fibromyalgia, I got celiac disease instead.  I get a lot of neck and shoulder pain but that has subsided by adhering to the gluten-free diet.  

 

I would suggest gentle exercise, like water aerobics.    My mom has modified her schedule to accommodate her "bad" days.  She does take some pain meds and that helps.  She's also done some acupuncture too.  She does not have celiac disease.  

 

It's a crazy illness, one day she's fine and the next, she can't pull a casserole out of the oven!  So, I can completely sympathize with you.

 

Take care!

[GF Lover]

A possible Fibromyalgia Diagnosis can be very frustrating and can feel like a cop out.  I was taking muscle relaxers, strong Ibuprofen and Tramadol (pain killer), desensitizing meds and getting cortisone shots.  Was also doing water therapy which, as cyclinglady said, does help.  At the time I was undiagnosed as Celiac so the inflammation causing the pain was running rampant through me.  Fortunately for me, when I started the Gluten Free Diet my symptoms calmed down and some went away completely.  I still have traveling joint and muscle pain from time to time and it has nothing to do with Gluten.  It just happens.  Maybe its just getting older, I don't know.  But I am completely free of all meds I was taking for all the pain and sensitivity. 

 

I do hope you start feeling better from this latest flare up.

 

Colleen

[ravenwoodglass]

It may not be the case for you but after I had been gluten free for a while I discovered that my severe joint pain was due to a soy intolerance. Even a little bit will have me aching for days. If you haven't already try eliminating soy for a bit to see if it helps.

[Rosiesallergies]

Not sure about soy. I know I'm very sensitive to nightshades. Just a little tomato and I'm in pain for days.

Has anyone used the hair sample tests to see what you are intolerant to? I've seen one that tests for 600 items including foods, metals, environmental allergens, etc. Id feel more comfortable if one were recommended.

[cyclinglady]

No, really?  It sounds like a scam.  600 items from one hair sample?  I think not!  Your cheapest bet is to keep a food journal and note your symptoms.  Try eliminating the most popular allergies or intolerances  (I think corn, soy, nuts, milk, wheat (ha!) families).  Take them out for a week and then add them back into your diet slowly.   There are plenty of books/websites that can help you.   

 

Going to an allergist of course can help too!  That's who identified many of my allergies (food and environmental), but the journal helped identify with the intolerances.

 

Good Luck!

[nvsmom]

I too had a lot of joint problems. I suspected lupus because while my joints didn't always swell and get hot, they would get very weak, tender and stat to twist up (like atrophy). When I finally saw the rheumy, she thought it was lingering celiac symptoms, and I think (hope) she was right. I had my last major joint flare up after being gluten-free for about 3 months. It ended after 7 months gluten-free. I realize you have been gluten-free much longer so I too wonder if it is a different intolerance causing the problem since gluten is out of your life.

 

If you do try an elimination diet, I would consider trying it for a longer time than a week. I would consider months of elimination before judging how it helped.

 

Nightshades are one that cause pain in some people too.

 

Good luck.