Fibromyalgia?

blithe

Hi everyone,

Just to begin, I'm well aware that boards.ie is most definitely not the place to be trying to get diagnosed/diagnosing anyone, but just wanted to share my experience and ask for peoples' opinions. Hope that's okay.

A few years ago suddenly one day I developed very bad pain in my limbs - I thought I was getting the flu. I was in quite a lot of pain, and for a few days found it difficult to sleep because of it. The pain lasted for a week or two, and then for a good few months it would come and go like that. I'd also find myself getting extremely tired during those periods, and my limbs felt very heavy.

The pain was like a deep ache - sometimes it was also sharp and tingling (could usually feel it all over, from the bottom of my feet to the very tips of my fingers, and all along the joints, my jaw, elbows, wrists, etc) and occasionally burning.

Since then, I've had it occasionally, with it usually flaring up after a day spent outside in the rain. I had normal blood tests and antibody tests done and they all came back clear.

On the (thankfully rare) days that I do have the pain, I usually tell anyone who asks that it's fibromyalgia, since it's easier to just say that than to explain everything. And I do have some of the symptoms - widespread ache/burn in limbs, fatigue. But I so seldom have have them that I doubt that it could be real fibromyalgia? I also wouldn't want to be claiming that I have it when some people suffer from it so badly.

Again, just to reiterate, I don't expect a magical diagnosis here. If it gets very bad again I will go back to my doctor and try to have more tests done. Just wanted to ask if anyone has had mild fibromyalgia symptoms like the ones I described, or if anyone recognise the symptoms as something else.

Thank you all in advance

Ultrflat

To be honest fibromyalgia sucks. I've been diagnosed with it for nearly 18 months, been battling the symptoms for near 7 years.
If I was to say anything I'd say learn as much about what happens to you and your symptoms because the smallest of triggers such as, emotional stress, arguments and so many other aspects can effect you. If its happening seldom them lucky you. But track them because if they get worse over time. At least you know your position to hand your doctor data that I don't think many would ignore.

That would be your best bet.

tikkahunter

Try taking some high doses of Vitamin D , i find after a few days it helps with the fatigue. I take it every morning .

Ultrflat

tikkahunter wrote: »

Try taking some high doses of Vitamin D , i find after a few days it helps with the fatigue. I take it every morning .

Out of curiosity have you got any tips about managing fybro fog?

WiseOldOwl

In a similar situation myself. Diagnosed 6 years ago with sarcoidosis. Always had aches and pains and put it down to sarcoid. About 2 months ago though I went for a run and got breathless and had to keep stopping. After that I got horrific leg pains for about 4 weeks. They eased off but have not gone away completely. Consultant says this is not typical of sarcoid and may be fibromyalgia so i’m Awaiting more tests and referral to rheumatologist. I wake up some days aching all over and have plantar fasciitis type pains in heels. I spent years like you OP with occasional flares but this time it’s worse and lasting longer.

flos1964

I to was diagnosed with sarcoidosis a couple of years ago...had to have an ICD implanted ...had serious breathing problems when running aswell...i attend the pulmonary clinic in tallaght for lung and breathing and the rheumatology clinic there for chronic leg pain from the hips down..lots of evidence of chronic pain linked to sarcoidosis...maybe you could have that checked out...hope this helps a bit...good luck with things.

WiseOldOwl

Did you ever get back running?

flos1964

WiseOldOwl wrote: »

Did you ever get back running?

If thats for me ...no i did not...in fairness i have not tried to hard and i certainly think i will again...the really chronic pain only came on when they started carrying out tests on me... i like to tell myself that they made it angry...they really dont know what causes the sarc but i have my own thoughts on it...i take steroids and pain killers everyday ...the painkillers are my gamechanger...i also have taken LDN with interesting results...not now but i think i will try it again soon...best of luck.

flos1964

WiseOldOwl wrote: »

In a similar situation myself. Diagnosed 6 years ago with sarcoidosis. Always had aches and pains and put it down to sarcoid. About 2 months ago though I went for a run and got breathless and had to keep stopping. After that I got horrific leg pains for about 4 weeks. They eased off but have not gone away completely. Consultant says this is not typical of sarcoid and may be fibromyalgia so i’m Awaiting more tests and referral to rheumatologist. I wake up some days aching all over and have plantar fasciitis type pains in heels. I spent years like you OP with occasional flares but this time it’s worse and lasting longer.

Wouldnt breathing problems and limb pain be some of the first symptoms you would think of for sarcoid?

WiseOldOwl

I had sarcoid in lung , joints and skin initially. Lung function tests not too bad so don’t know what is causing breathlessness when running. I had acute sarcoid (lofgrens syndrome) which is supposed to burn itself out after couple of years. Dr doesn’t seem to think all over aches and pains and fatigue sound like sarcoid. Having more tests now as was on holidays since I saw him. He is not a sarcoid specialist so maybe I should go to one.

Eleysian

I was diagnosed with Fibromyalgia in 2005.
I was diagnosed with breast cancer in 2016. What shocked me was the almost universal dismissal of Fibromyalgia by oncologists, radiologists, etc.. The
Fibro pain from radiotherapy was unreal and I was left with no pain relief or support. Did anyone else experience this?

Graces7

Eleysian wrote: »

I was diagnosed with Fibromyalgia in 2005.
I was diagnosed with breast cancer in 2016. What shocked me was the almost universal dismissal of Fibromyalgia by oncologists, radiologists, etc.. The
Fibro pain from radiotherapy was unreal and I was left with no pain relief or support. Did anyone else experience this?

same with CFS/ME. They ignore it and any mention of it. does not exist. One asked me if I knew what M.E stood for. I only get decent pain relief as I have severe Raynauds as part of the auto immune issues and they can see that!

blithe

Hi everyone,
For some reason I stopped getting boards.ie notifications so only reading all these replies now (had forgotten completely about this thread!!). Thanks for all your responses and for sharing your experiences!

Have had extremely bad acid reflux the past two or three weeks. Having a lot of trouble getting to sleep. Noticed burning sensation in my palms and a real 'fibro fog' thing - almost like a lag, when it was really bad I had trouble responding to people asking me questions or even listening to what they said (although this could be due to the lack of sleep lol).

Read somewhere before about acid reflux/GERD being a problem for people with fibromyalgia, does anyone have any experience of this?

Thanks again everyone. Wishing you all the best in managing these symptoms x

WiseOldOwl

Oops a year later I'm revisiting this thread. Yes I get acid reflux too and was diagnosed with gastritis last year. Still have leg pains , which are pretty bad at the moment and still don't know if its fibro causing them. How are you?

blithe

I'd forgotten about this thread as well haha!

There definitely seems to be some suggestion of links between fibro and GERD/acid reflux..... I've actually had two very bad bouts of pain/acid reflux over the past few months that kept me up all night. Both seem to be getting worse and more frequent, along with a kind of itching/scratched pain that I didn't have before. Funny enough I have an appointment to get more blood tests done tomorrow, so hopefully I'll get closer to the cause of this soon.

Sorry to hear you still have so much pain. Did you make any progress with your doctors/appointments?

WiseOldOwl

Anyone with fibro get leg pain from knee down as main symptom? Recently I've noticied what I think is muscle knots and used a massager device on them which has now left inside leg calf muscle extremely tender and sore. Sound familar to anyone?

WiseOldOwl

Was supposed to have appt last week but it was cancelled. I had my lung function tests though in relation to my sarcoid and they were good!
I'm on a ppi for the acid reflux but some days it's not enough. Diet definitely affects it too although some days I can eat something with no trouble and another day it might give me reflux.

quote="blithe;115543950"]I'd forgotten about this thread as well haha!

There definitely seems to be some suggestion of links between fibro and GERD/acid reflux..... I've actually had two very bad bouts of pain/acid reflux over the past few months that kept me up all night. Both seem to be getting worse and more frequent, along with a kind of itching/scratched pain that I didn't have before. Funny enough I have an appointment to get more blood tests done tomorrow, so hopefully I'll get closer to the cause of this soon.

Sorry to hear you still have so much pain. Did you make any progress with your doctors/appointments?[/quote]

blithe

WiseOldOwl wrote: »

Was supposed to have appt last week but it was cancelled. I had my lung function tests though in relation to my sarcoid and they were good!
I'm on a ppi for the acid reflux but some days it's not enough. Diet definitely affects it too although some days I can eat something with no trouble and another day it might give me reflux.

quote="blithe;115543950"]I'd forgotten about this thread as well haha!

There definitely seems to be some suggestion of links between fibro and GERD/acid reflux..... I've actually had two very bad bouts of pain/acid reflux over the past few months that kept me up all night. Both seem to be getting worse and more frequent, along with a kind of itching/scratched pain that I didn't have before. Funny enough I have an appointment to get more blood tests done tomorrow, so hopefully I'll get closer to the cause of this soon.

Sorry to hear you still have so much pain. Did you make any progress with your doctors/appointments?

[/quote]

Good to hear those tests came back well at least! Pity about the appointment, but hopefully that'll be rescheduled soon enough as well

The reflux is strange for me too - I only seem to get it when my pains are bad. I'm changing up my diet and habits at the moment though just in case.

WiseOldOwl

I actually find the opposite, sometimes when leg pains get better stomach flares up.