Pegleg84
Active member
- Joined
- Mar 8, 2017
- Messages
- 82
- Reason
- DX FIBRO
- Diagnosis
- 05/2017
- Country
- CA
- State
- ON
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,
Peggy
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,
Peggy