Fibromyalgia

[Supertrooper]

After being told there was a shadow in my spinal cord which thankfully after a repeat MRI wasn’t actually there, I’m still in the dark as to what is actually causing the burning pain in my neck, arms and hands.

Things are getting steadily worse and I’m now also getting the same sensations in my lower back and shins. I’m also very hypersensitive to touch in these areas.

Things I could do without even thinking twice about I’m now finding hard as I’m in pain after, for example today I went for a 20 minute walk, not at all strenuous but after I was in such pain. Been dosed up on pain meds ever since.

It’s ridiculous, I’m only in my 40’s!!! But my skin is so painful to live in ATM and I just want some answers

My job is physical but I’m struggling, partly because of the pain but also I’m very tired, more so than normal.

I’m wondering if it could poss be fibromyalgia and will mention it to GP. Does anyone hear have it?

Thanks

 

[Supertrooper]

Sorry, thought I’d put this in clubhouse. Will have to leave here now xx

 

[Leo Walker]

Have you had vitamin D/B12/iron and folate etc tested. In a huge amount of cases fibromyalgia/chronic fatigue etc can be attributed to one or all of those being deficient. Its no good just having them tested though you need to get the results and check them. The NHS considers 35 an adequate level of vitamin D in this area, but actually 100 is much closer to optimal. Same with B12, its 180 here but actually it needs to be 1000 or thereabouts.

 

[JillA]

Have you had vitamin D/B12/iron and folate etc tested. In a huge amount of cases fibromyalgia/chronic fatigue etc can be attributed to one or all of those being deficient. Its no good just having them tested though you need to get the results and check them. The NHS considers 35 an adequate level of vitamin D in this area, but actually 100 is much closer to optimal. Same with B12, its 180 here but actually it needs to be 1000 or thereabouts.

^^^^^ This. There is an American organisation called The Vitamin D Council which has a lot of good information, and a Facebook group Vitamin Deficiency UK https://www.facebook.com/groups/458769434286147/ worth joining, and which has a protocol of co-factors to take with the vitamin D capsules, and a calculation for optimal levels. Unfortunately non of the moderators are clinicians but they are a good starting point

 

[Dancing_Diva]

I have fibromyalgia, feel free to message me if wanted to ask any questions x

 

[Fun Times]

I am supposed to have fibro but not convinced. In any case, your symptoms don't seem entirely typical of fibro. However I wouldn't mention it to your Doctor as Fibro tends to be thought of as the "bucket diagnosis" meaning that it's often what they determine you have when they can't figure it out. I found the diagnosis massively frustrating in that the doctors then seemed to say that as I have fibro there was nothing they could do to help. Even though there are no definitive tests which conclusively show that you have it.
I may have misremembered this so apologies to all concerned if I have, but didn't KatPT recently post about having some strange nervous system problem that didn't sound entirely dissimilar to your symptoms? Sorry if I have muddled this up!

 

[SEL]

Also worth seeing if they'll run the blood tests for rheumatoid arthritis. There were about 5 I think and I showed up with inflammatory markers in 1 of them - which was negative for RA, but inconclusive as to what it actually was. About 6 months later I was diagnosed with late onset type 1 diabetes which explained my aching and tiredness.

I did find I was having to suggest other tests to the GP when the RA tests came back negative.

 

[scats]

I have it along with Lupus. Feel free to message me.

 

[wren123]

Supertrooper, I'm so pleased your mri was normal, I've been thinking about you.

I had a pain in my neck for months, ibuprofen worked and took the pain away mostly.
But after a cardiac event where I was in hospital for a week, and had an angiogram and loads of other tests it was concluded that I'd had a small clot which had dispersed before my angiogram due to the multitude of drugs I was given.
So I stopped taking the ibuprofen as they are linked to blood clots. In desperation I tried a registered cranial osteopath recommended by my dentist and it worked, my neck pain is gone.

I do sympathise massively as chronic pain is depressing, once I'd got over the shock of my very small heart event it was a tremendous relief not to be in pain a lot of the time.

 

[BBP]

I am supposed to have fibro but not convinced. In any case, your symptoms don't seem entirely typical of fibro. However I wouldn't mention it to your Doctor as Fibro tends to be thought of as the "bucket diagnosis" meaning that it's often what they determine you have when they can't figure it out. I found the diagnosis massively frustrating in that the doctors then seemed to say that as I have fibro there was nothing they could do to help. Even though there are no definitive tests which conclusively show that you have it.
I may have misremembered this so apologies to all concerned if I have, but didn't KatPT recently post about having some strange nervous system problem that didn't sound entirely dissimilar to your symptoms? Sorry if I have muddled this up!

You have remembered correctly, I’m impressed! Yes, I have had some bonkers symptoms that no one has got to the bottom of really. Not sure if it was triggered by damage to my neck (as it started a couple of days after doing some back somersaults badly in gymnastics training) or something viral like a mild meningitis as I felt quite flu like at the start. Anyway, my symptoms were like pins and needles in my neck and scalp and face up to an intense burning sensation like someone was pouring boiling water over my head. I couldn’t see straight, felt dizzy all the time, intense crushing pressure in my throat but focussing along my spine. I had severe TMJ pain as the stress of it made me clench my teeth at night. I became incredibly hypersensitised to noise and touch. It was like a searing physical pain under my skin. The closest I can get to explaining was like the pain you get when you hit your funny bone, only I felt it inside my spine and inside my skull. Stupid stuff was the worst, the sound of the cats eating or the feel of them jumping on me was unbearable. I also get white noise inside my head when it’s quiet, which is painful too. The headaches have been brutal and constant.

GP didn’t know what was wrong. Chiro thought maybe I had put a heavy traction force on my brain stem or something impeding flow of cerebrospinal fluid. I couldn’t believe that this was the rest of my life, in my 30s with a debilitating condition that no one could see or understand. I looked and sounded fine. MRI was normal, although cerebellum sitting a little low they said it wasn’t low enough to cause issues. I thought it would never end.

BUT! To give you some hope, I started to have the odd good spell when I felt ok for a bit. They got more frequent but I was still having issues. I also had constant abdominal pain following a fall from a horse a year ago that a CT showed as clear. I went for a chat with a private gp who had the time to go over the whole timeline with me. In essence what she said was she didn’t know what was causing it but that whatever it was initially had caused my central nervous system to become hypersensitised. The normal nerve signals for touch, or sound or normal pain, were being mixed up, amplified and interpreted by my brain as serious pain and injury. Weirdly, just knowing this has helped me to manage it. I am training my brain that I am not injured when it says I am. I carry on doing things because the doctor assured me there is no physical injury that I will make worse, and that by giving in to the signals and resting I was actually reinforcing the pain cycle. I tried 3 acupuncture sessions (I stopped after 3 due to finances and also it was brutally painful) but bizarrely I have felt pretty good ever since, I have now gone 2 months without a major problem. So I can’t tell you what I had or that I’m fully better, but I’m so much improved so don’t lose hope!

I should add it’s 2yrs and 2months since symptoms started and only in last 2 months am I feeling really positive that I will recover fully.

 

[Pearlsasinger]

After being told there was a shadow in my spinal cord which thankfully after a repeat MRI wasn’t actually there, I’m still in the dark as to what is actually causing the burning pain in my neck, arms and hands.

Things are getting steadily worse and I’m now also getting the same sensations in my lower back and shins. I’m also very hypersensitive to touch in these areas.

Things I could do without even thinking twice about I’m now finding hard as I’m in pain after, for example today I went for a 20 minute walk, not at all strenuous but after I was in such pain. Been dosed up on pain meds ever since.

It’s ridiculous, I’m only in my 40’s!!! But my skin is so painful to live in ATM and I just want some answers

My job is physical but I’m struggling, partly because of the pain but also I’m very tired, more so than normal.

I’m wondering if it could poss be fibromyalgia and will mention it to GP. Does anyone hear have it?

Thanks

Now that all the very serious things that I am sure passed through your mind have been ruled out, I am going to suggest that you keep a food diary.
If I eat the wrong foods, I get horrendous symptoms of nerve pain, skin burning feelings, muscle weakness, exhaustion, 'brain fog' and more. I first pinpointed dairy products, then wheat and eventually an allergy consultant gave me a long list of foods to avoid. The most recent culprit is corn which seems to be in everything these days, including fruit juice.
I often wonder if many cases of fibromyalgia would be helped by careful attention to diet.

ETA, I have to be particularly careful with OTC and prescribed meds as they usually contain corn in one form or another.

 

[cobgoblin]

You have remembered correctly, I’m impressed! Yes, I have had some bonkers symptoms that no one has got to the bottom of really. Not sure if it was triggered by damage to my neck (as it started a couple of days after doing some back somersaults badly in gymnastics training) or something viral like a mild meningitis as I felt quite flu like at the start. Anyway, my symptoms were like pins and needles in my neck and scalp and face up to an intense burning sensation like someone was pouring boiling water over my head. I couldn’t see straight, felt dizzy all the time, intense crushing pressure in my throat but focussing along my spine. I had severe TMJ pain as the stress of it made me clench my teeth at night. I became incredibly hypersensitised to noise and touch. It was like a searing physical pain under my skin. The closest I can get to explaining was like the pain you get when you hit your funny bone, only I felt it inside my spine and inside my skull. Stupid stuff was the worst, the sound of the cats eating or the feel of them jumping on me was unbearable. I also get white noise inside my head when it’s quiet, which is painful too. The headaches have been brutal and constant.

GP didn’t know what was wrong. Chiro thought maybe I had put a heavy traction force on my brain stem or something impeding flow of cerebrospinal fluid. I couldn’t believe that this was the rest of my life, in my 30s with a debilitating condition that no one could see or understand. I looked and sounded fine. MRI was normal, although cerebellum sitting a little low they said it wasn’t low enough to cause issues. I thought it would never end.

BUT! To give you some hope, I started to have the odd good spell when I felt ok for a bit. They got more frequent but I was still having issues. I also had constant abdominal pain following a fall from a horse a year ago that a CT showed as clear. I went for a chat with a private gp who had the time to go over the whole timeline with me. In essence what she said was she didn’t know what was causing it but that whatever it was initially had caused my central nervous system to become hypersensitised. The normal nerve signals for touch, or sound or normal pain, were being mixed up, amplified and interpreted by my brain as serious pain and injury. Weirdly, just knowing this has helped me to manage it. I am training my brain that I am not injured when it says I am. I carry on doing things because the doctor assured me there is no physical injury that I will make worse, and that by giving in to the signals and resting I was actually reinforcing the pain cycle. I tried 3 acupuncture sessions (I stopped after 3 due to finances and also it was brutally painful) but bizarrely I have felt pretty good ever since, I have now gone 2 months without a major problem. So I can’t tell you what I had or that I’m fully better, but I’m so much improved so don’t lose hope!

I should add it’s 2yrs and 2months since symptoms started and only in last 2 months am I feeling really positive that I will recover fully.

Did the private gp call it Complex Regional PainSyndrome? Also known as Reflex Sympathetic Dystrophy

Could possibly be your problem OP.

 

[spike123]

I have fibromyalgia along with Hypermobility syndrome and tarlov cyst disease. Also in my 40's and more or less medically retired now sadly. Regarding work are you currently at work or off sick? Fibromyalgia can be considered a long term condition and as such is covered by the equality act meaning that you can ask for a change to your hours/workload if it's making you unwell.