The Fibromyalgia and Chronic Fatigue Syndrome Neurogenic Inflammation Poll

Let us know if you experience these symptoms that could indicate neurogenic inflammation is present

  • Swelling

    Votes: 16 50.0%
  • Reddened skin (erythema)

    Votes: 16 50.0%
  • Dermatographia - skin becomes raised when stroked, scratched or rubbed

    Votes: 8 25.0%
  • Livedo reticularis - mottled purplish discoloration of the skin usually in the legs

    Votes: 9 28.1%
  • Cutaneous dysaesthesia - burning, wetness, itching, electric shock, and pins and needles feelings

    Votes: 25 78.1%
  • Raynaud's phenomenom - whitening of the finger tips

    Votes: 12 37.5%
  • Allodynia

    Votes: 20 62.5%
  • Cold induced pain sensitivity

    Votes: 15 46.9%
  • I don't experience any of the above

    Votes: 2 6.3%

  • Total voters
    32

Cort

Founder of Health Rising and Phoenix Rising
Staff member

Seeksassy

Active Member
Look at all that allodynia - I feel for you guys...
I don't know about others, but the severe allodynia for the few years after the accident that started my crps is mostly gone. The fms version comes and goes and isn't nearly as severe, tho' still plenty painful!
Thanks Cort, for this attention to CRPS!
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I don't know about others, but the severe allodynia for the few years after the accident that started my crps is mostly gone. The fms version comes and goes and isn't nearly as severe, tho' still plenty painful!
Thanks Cort, for this attention to CRPS!
So your system has calmed down a bit it seems...Has your CRPS remained stable?
Did you get FM before or after CRPS?
 

Seeksassy

Active Member
So your system has calmed down a bit it seems...Has your CRPS remained stable?
Did you get FM before or after CRPS?
CRPS was first, is mainly controlled with pain meds, FM came a year (or 2?) later, quickly followef by IBS, migraines, Raynaud's & Sjogrens. Stabilized after 2-3 yrs, for about 10 yrs. Then came CFS diagnosis and I've never really recovered since then.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
CRPS was first, is mainly controlled with pain meds, FM came a year (or 2?) later, quickly followef by IBS, migraines, Raynaud's & Sjogrens. Stabilized after 2-3 yrs, for about 10 yrs. Then came CFS diagnosis and I've never really recovered since then.
Wow...This is so interesting...:woot: Look at these - CRPS, IBS, FM, migraines and I suppose Raynaud's - all could be caused by neurogenic inflammation. It's as if something in your body (an infection, an autoimmune response?) went around tweaking the sensory nerves in different parts of your body... Were they able to do anything with the Sjogrens?

With regards to CFS - what has made it so challenging - the extreme fatigue and exhaustion - a degree of which you had never experienced before?

I wish they could put you in a lab :jawdrop: and do every test in the book....you could tell us a lot ;)
 

Seeksassy

Active Member
Ha! I did stir some interest once fm was diagnosed after the crps. But I feel sure the crps triggered everything else. Tho since then, I never get a cold or flu....well, maybe just the start of a little cold then it's gone.
Our public health system here in Canada is great in lots of ways, but there's very little experimenting (except in research) because the gov't has to approve tests, prescriptions, etc. Since I've learned what docs can do in the US (from you!) I'm not as arrogant about our public system. I had no idea how limiting it can be.
 

Seeksassy

Active Member
For Sjogrens I use artificial tears, drink water constantly, suck on candy (all for dryness). I wash my fruits and vegetables in warm water then chill them in the fridge. When my hands get cold it's really painful. Sometimes they prescribe prednisone, but I tried that for the CRPS (to no effect) and will never take that drug again.
 

Snookum96

Active Member
Ha! I did stir some interest once fm was diagnosed after the crps. But I feel sure the crps triggered everything else. Tho since then, I never get a cold or flu....well, maybe just the start of a little cold then it's gone.
Our public health system here in Canada is great in lots of ways, but there's very little experimenting (except in research) because the gov't has to approve tests, prescriptions, etc. Since I've learned what docs can do in the US (from you!) I'm not as arrogant about our public system. I had no idea how limiting it can be.
I'm Canadian also and have the same experience. I used to think it was great, but if you get something complicated, or have more than one symptom everyone is baffled. There doesn't seem to be any medical curiosity. Strangely enough, the doctor who has run the most relevant tests for me since I got sick was my psychiatrist. He's not your typical psychiatrist that's for sure but it piqued his interest. He's the only one who thought to test metals (Mercury, zinc etc), and is one of the few docs interested in linking my MRI results to some if my stranger symptoms.
 

Sarah R.

Active Member
I never had CRPS, but I did move from fibromyalgia into CFS over about a 2-year period. The initial aches and pains of fibro were manageable for me in a work environment, but when the CFS hit, I was down for the count. (I lost my job mainly due to exhaustion, immune problems and brain fog.) Now, some 10 years after the fibro diagnosis, my pain moves around -- might be exquisitely tender right elbow for a few days to a few years, strange knee pain that comes and goes, low back pain that feels like spasms and responds fairly well to bed rest and a heating pad, etc. I never know when any particular pain will come or go. I don't know if I've improved over the years or if I've just gotten used to being disabled, but I don't seem to pay as much attention to being out of whack. Resting and Lyrica are the most helpful treatments for my fibro pain.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
I never had CRPS, but I did move from fibromyalgia into CFS over about a 2-year period. The initial aches and pains of fibro were manageable for me in a work environment, but when the CFS hit, I was down for the count. (I lost my job mainly due to exhaustion, immune problems and brain fog.) Now, some 10 years after the fibro diagnosis, my pain moves around -- might be exquisitely tender right elbow for a few days to a few years, strange knee pain that comes and goes, low back pain that feels like spasms and responds fairly well to bed rest and a heating pad, etc. I never know when any particular pain will come or go. I don't know if I've improved over the years or if I've just gotten used to being disabled, but I don't seem to pay as much attention to being out of whack. Resting and Lyrica are the most helpful treatments for my fibro pain.
What you said - that the exhaustion of ME/CFS is peculiarly debilitating - crops up a lot. A lot off of people, it seems can "handle" the pain of FM - they can keep working and functioning - but mental and physical exhaustion is another matter.
 

Cort

Founder of Health Rising and Phoenix Rising
Staff member
For Sjogrens I use artificial tears, drink water constantly, suck on candy (all for dryness). I wash my fruits and vegetables in warm water then chill them in the fridge. When my hands get cold it's really painful. Sometimes they prescribe prednisone, but I tried that for the CRPS (to no effect) and will never take that drug again.
Glad you're not on prednisone...My mother had Sjogren's and was on that for years - she had to be - her kidneys were being attacked. Not a great drug to be on.
 

Sarah R.

Active Member
What you said - that the exhaustion of ME/CFS is peculiarly debilitating - crops up a lot. A lot off of people, it seems can "handle" the pain of FM - they can keep working and functioning - but mental and physical exhaustion is another matter.
Yes, mental and physical exhaustion, plus an immune system that just seemed to quit working. So every bug that came through the office, I would catch, and be more ill than anyone else who had it; then usually the cold or stomach flu, etc., would recur at least 3 times. Apparently my body either doesn't make antibodies or makes really weak ones. I was sick nearly all the time. I've been much better off these last 8 years at home, where I'm not exposed to so many viruses/bacteria.
 

Seeksassy

Active Member
What you said - that the exhaustion of ME/CFS is peculiarly debilitating - crops up a lot. A lot off of people, it seems can "handle" the pain of FM - they can keep working and functioning - but mental and physical exhaustion is another matter.
Yes, I learned to live with the fm with maybe 3 flares a year for 2-7 days that could knock me down, but still able to keep my full-time job. Then the cfs hit and wow! I had had spells of debilitating fatigue with fm, but they would end. With cfs it's the opposite; chronic severe fatigue with occassional good spells!
 

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