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Active member
Mar 8, 2017
Hi all,
Glad to have found this forum, and hope I'll find some advice/support.

I'm currently seeking a diagnosis for my "mystery pain", which I suspect could be Fibro.

Back story (apologies for length): I'm in my early 30s. I have Celiac Disease and have been gluten-free for 8 years. My Celiac symptoms have been under control (aside from occasional accidents) for quite a while, but even then over the past few years I would have random "achy old lady" days: wake up exhausted, nauseous, everything hurting. If I managed to get to work it was at half-speed, legs aching, everything aching, brain super foggy. I figured it was just another symptom of Celiac (being the unpredictable auto-immune disease that it is). I've become much more strict with my diet, and more and more I had trouble linking these painful days to a glutening. Maybe something else was going on?

At the same time, I was getting pain in my colon that also wasn't the usual glutening symptoms. We're talking severe, stabbing, felt like I was going to pass out kind of pain. I thought maybe I had IBS as well (either as a symptom of Celiac, or separately). I had a colonoscopy last year, and general consensus is, yeah, I might have IBS. From reading, I know that fibro and IBS often go together.

The gut pain hasn't been too bad in the past several months, but my "mystery" all-over body pain has become more frequent. It's a tingling, burning pain, mild to severe, usually starting in my hands or legs and spreading from there. On bad days I wake up with it, will have nausea, weird pressure headaches, muscle spasms, panic/anxiety/crying, have to stay home or go home from work, have trouble walking more than half my usual speed. Until recently, I might have a bad day or two, and then be fine for weeks. I've probably had a bad pain day at least once a month on average.

However, the past month things have stepped up. I've had a bad day about once a week, and moderate but more-or-less constant pain every day for the past week (which has not happened previously). Trouble walking, weird headaches, burning pain in my hands, muscle spasms. Monday I didn't make it out of the house and slept all day. Yesterday I was achy until it suddenly vanished for a few hours and then came back. Today, more of the same.

I saw my doctor today, and while we haven't ruled out other possibilities (arthritis, neuropathy, etc), she also suspects it could be Fibro. She's referred me to a rheumatologist, (who unfortunately is on vacation so I won't see for over a month). Hopefully he'll be able to help.

In the meantime, I'm looking for advice on pain management (anti-inflammatories don't help, opioids knock me out) and whether this sounds like Fibro to you? I don't have the fatigue as much (I've been taking my vitamins diligently this winter, so that might be helping), I don't get a lot of exercise but do walk a fair bit. My diet is already quite restrictive (no gluten/soy/dairy/eggs, easy on nightshades and whole grains, my gut is very fussy), but anything I should/shouldn't be eating to help?

Anyway, apologies for the rant, but this pain is interfering with my life. I don't know if it'll get worse or suddenly vanish. Will be good to talk to people in the same boat.

Thank you,
Re: "Mystery pain"

I'm so sorry for all the pain that you're going through. so far i think that you are doing everything that you can do to feel better. I myself have been diagnosed for 18 years ( i was diagnosed at 14). and i can give you some of my tricks that have helped me. the 2 main things I've learned that help besides medication is getting in a good sleep routine, getting in a good 7-9 hours of restful sleep is important. i had to start taking Trazadone at bedtime to help my body get into REM sleep. if you don't want to take medicine for sleep that's fine but you need to read up on good sleep hygiene, no tv in the bedroom, only sleep and sex in the bedroom. setting standard bedtime and wake up time. i like to use a meditation app by Andrew Johnson that helps guide me into a good sleep.
the other big thing is to make sure that you don't stay too stationary. I know you said that you walk a lot so that's great. sometimes i think i should take disability because of my pain some days but i know if i did that i wouldn't make myself get up and move so i force myself to get up and go to work so that i keep moving.

sorry this is so rambly but this is how my brain is working these days

Also, I go to the chiropractor on a regular basis during a major flare up i go up to 3 times a week when i'm at my very best i go every other week. currently i'm having issues with my siadiac nerve so i'm going once a week. physical therapy also works. these are all things that you can do for the next month until you get in to see the rheumatologist although I've ready that it's not necessary for fibro patients to have to go to a rheumatologist anymore. My GP diagnosed me at 14 after the orthopedist cleared me of anything going on in my shoulder.
good luck to you and hopefully this has helped
(hm, does the forum regularly change post titles and automatically add tags? good to know)

Thanks for the reply, Catamountgurl. My GP was willing to put me on meds, but would rather the RA give a diagnosis. I'm sure she will be very supportive and helpful in the long run (often has more info on things than the specialists do).

I am trying to remain as active as I can, though I am pretty out of shape (have never been one to "work out" and while I can walk for hours at a steady pace, I don't jog or anything. Last year I took tai-chi, but couldn't keep up with the lessons because I had too many days where my body wouldn't cooperate and couldn't get to class (just down the street from me), but have been trying to do the excercises. Even that has been painful lately. I keep wondering if I'm just out of shape and need to build up a tolerance? Or has fibro pain always held me back? I feel like I've climbed a mountain, only without any tenderness in my muscles (the deep tender pain you get when you actually DO work out a muscle).
I have a desk job, but am up and down to the printer and down the hall and such pretty frequently. I have a 15-20min walk from home-subway-work every day. On weekends I try to force myself to get out of the house even if not feeling great, if just to walk to the grocery store or something. On days that I'm feeling good, I'll walk for an hour or more.

Anyway, I had a thought: We just got a new mattress a month ago. It's memory foam and quite firm. I'm sleeping a lot better than on my old one, but still getting some upper back pain (need new pillow) and arms falling asleep easily depending on my position. I can feel that the back pain is more of a muscle thing (an actual physical pain that I can locate) than the general fibro pain in my legs and arms.
Still, is there a possibility that I'm still adjusting to a new bed and it's making my muscles go all wonky? Or, that it's causing a fibro flare up (if I do have fibro?).
As I said, I'm sleeping well, and not much pain when I wake up (the pain tends to hit after I've walked to work).
I'm just exploring possibilities.

I'm on day 11 of more or less constant, if tolerable pain, mostly in my legs and arms. I have good hours and worse hours, but it hasn't really gone away.
(on top of it all, I legit pulled a muscle in the side of my tongue or something, so I that's making the side of my face hurt. When it rains it pours)

Have been doing lots of reading on the forum, which is helpful. I'm still in the "do I really have this or am I just a wimpy hypochondriac" stage.
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