1. Patients launch $1.27 million crowdfunding campaign for ME/CFS gut microbiome study.
    Check out the website, Facebook and Twitter. Join in donate and spread the word!
Hyperparathyroidism: An Often Overlooked Differential Diagnosis to ME/CFS
Andrew Gladman puts hyperparathyroidism under the microscope, exploring what the disease is, how it can mimic ME/CFS in presentation and how it is treated.
Discuss the article on the Forums.

How many of us have neuropathic pain/damage; both peripheral and autonomic?

Discussion in 'Peripheral Neuropathy' started by TCP36, Mar 11, 2013.

?

How Many of Us Have Neuropathy? (autonomic and peripheral)

  1. Yes, I have neuropathic pain

    89.7%
  2. No I have no neuropathic pain

    2.6%
  3. I have pain but not nerve pain

    6.4%
  4. I have no pain in my body at all

    2.6%
Multiple votes are allowed.
  1. vli

    vli

    Messages:
    1,732
    Likes:
    1,788
    CA
    I think I'm in a similar position now to what you were in.
  2. marple

    marple

    Messages:
    26
    Likes:
    5
    UK
    I've sent you a PM
  3. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Messages:
    67
    Likes:
    17
    UK
    I've had ME since 1984 and most of my pain was sore muscles and fatigue in them. Now I get full-blown neuropathic pain all over in the nerves, skin, muscles, joints...in fact everywhere. It certainly changed.
  4. Jacque

    Jacque Senior Member

    Messages:
    391
    Likes:
    290
    USA - California
    Well it is 4 am and I am up with my HEAD to TOE nerve pain... fun fun... Like little Gremlins running around in my body with heated razor blades causing the "zingers"...and then always burn burn burn....I would go to the ends of the earth to find a way to put this fire out.... The worst areas are neck, low lumbar, and and waist down leg and feet pain. I also just have to lay down. Sometimes pain killers don't even touch the pain... like tonite.... grrrrrrr

    I agree with Heaps theory.....esp with the spine problems...that seem to migrate in me anyhow... But I also think the brain is damaged and has a lot to do with it...
  5. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Messages:
    67
    Likes:
    17
    UK
    Weirdly enough when my neuro pain started it was bad at night but now, with meds, have mainly experience pain in daytime.

    Dr H says some people with neuropathy may have spinal cord lesions that they aren't aware of. I have degeneration in lower and upper spine and scoliosis.
  6. Jacque

    Jacque Senior Member

    Messages:
    391
    Likes:
    290
    USA - California
    My pain is worse at night as well... just bonkers! But is that bc I am laying down and still and more focused on it? I too have severe degeneration and stenosis... ha a 5 level decompression of my neck and that was the straw that broke the camels back... I have been practically couch ridden since. I truly believe all of this insanity is a damaged brain/ANS from infection - Lyme or whatever... Can that damage be repaired is the big question.... hmmm
  7. Jacque

    Jacque Senior Member

    Messages:
    391
    Likes:
    290
    USA - California
    Also curious what meds help you at night??
  8. TCP36

    TCP36 I'm not giving up, despite the setbacks and BS!

    Messages:
    67
    Likes:
    17
    UK
    I have 300mgs Gabapentin and 25-50mgs of Nortriptyline at 10 o'clock at night. Both help ensure a good sleep. I also take magnesium to help with muscle cramps.

    I'm going to try chiropractic treatment and low-level light therapy.
  9. PGHCFS

    PGHCFS

    Messages:
    56
    Likes:
    21
    Pittsburgh, PA
    I started having peripheral neuropathy after this all started too. My Dad has it, but not cfs, so I wasn't sure if they were related, but I guess they are. I recently went on vacation for three weeks and the pain felt a bit better, quite a bit better actually. When I returned home it started felling very tingly and painful again. I think that it may be because I stopped then restarted my B-Complex. I think it was too much B6. I have stopped it again and the pain is subsiding. Any thoughts?
  10. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,230
    Likes:
    3,628
    Cornwall, UK
    Interesting. I don't have neuropathic pain but do get numb extremities at times. I took a supplement called Tyroplex for a short time. This contains tyrosine and B vitamins. I had to stop because the numbness was getting persistent and worrying, and returned to 'normal' again. I did some reading-up on the ingredients and concluded that the numbness was due to one or more of the B vitamins.
  11. physicsstudent13

    physicsstudent13 Senior Member

    Messages:
    225
    Likes:
    5
    Is there a drug to reverse numbness, nerve damage?

    have severe nerve numbness and pain in the genital area, does methyl b12 help according to some studies?
    I think it's diabetes sugar damage, the sleep apnea causes diabetes, low oxygen damages all my organs and I have chronic exhaustion. people downplay diabetes but it has destroyed my nerves and it causes heart disease damage, exhaustion. I was getting abscesses and had to have them cut and drained at the ER, I still have these abscesses on my thighs that won't go away?
    I took a jar of berberine over a couple of months but I think I still have diabetes problems and take metformin.
  12. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    Here is an article written by Dr. John Hahn who writes for the Townsend Letter magazine quite often. It gives some 3 or 4 supplements that help with neuropathy. It is a pretty good article and I'm in the position now that I'm going to have to use them myself. I have let Metabolic Syndrome sneak up on me and the doctors had no clue. I had elevated triglycerides and low hdl for years and all they did was told me to watch my diet, which I did and it help a little bit, but the pattern still existed. My doctor has still not run a lipid panel on me in two years. So, I'm looking for a new doctor.


    http://www.thefreelibrary.com/The n...of diabetic peripheral neuropathy-a0220641766
  13. wanttorecover

    wanttorecover

    Messages:
    17
    Likes:
    14
    New Zealand
    I selected yes to nerve pain I get episodes of it and really hate it as well as all sorts of neuro symptoms they drive me nuts. Peripheral neuropathy can definitely be ME mine is in my right and classed as ulnar the testing showed slowed nerve impulses along that nerve so it must be impaired in some way, not sure if it is actually damaged some neurologist say it is due to the neurotransmitters not functioning or being too low in concentration.

    I also have the classic MS hug and I hate it, MS has been ruled out as far as they can I had a scan.
  14. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,779
    Logan, Queensland, Australia
    Elevated LDL and lowered HDL is so common in ME its almost a marker. Elevated triglycerides is not uncommon.
    NK17 likes this.
  15. August59

    August59 Daughters High School Graduation

    Messages:
    1,480
    Likes:
    404
    Upstate SC, USA
    There wasn't a choice for having both, but I do
  16. MeSci

    MeSci ME/CFS since 1995; activity level 6

    Messages:
    3,230
    Likes:
    3,628
    Cornwall, UK
    I don't have those. Damn - I'm even weird for someone with a weird illness. And I thought I had found somewhere where I was 'normal'...:cry:
  17. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,779
    Logan, Queensland, Australia
    Weird IS the normal for ME! ;)
    rosie26 and Little Bluestem like this.
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

    Messages:
    7,136
    Likes:
    4,391
    australia (brisbane)
    I have heard that the high cholesterol that we have can be because our body is trying to increase certain hormones as well as repair cell membranes etc which cholestero, is used for. So maybe taking meds to lower cholesterol is going to reduce our hormone output and cellular repair mechanisms, just a theory/thought as its the liver that makes the cholesterol not neccessarily coming from the diet??
  19. wanttorecover

    wanttorecover

    Messages:
    17
    Likes:
    14
    New Zealand
    I have the low HDL - very low in fact but have low LDL also.
    Read your linked article my GP is adamant it is not a diabetic neuropathy have been tested a multitude of time we are still not sure the exact cause of the neuropathy as the neurologist hasn't replied after they tested the nerve signals with the NCS.

    The part about the nerve damage is interesting though I had assumed it to be more of a signalling or interpretation problem but I guess it's possible there is some damage.
  20. alex3619

    alex3619 Senior Member

    Messages:
    7,017
    Likes:
    10,779
    Logan, Queensland, Australia
    The damage is to sensory nerves, at least in small fiber polyneuropathy. So the brain gets the wrong signals. It tries to fix things, but what we get is sensations of heat and pain, and abnormal regulation of blood flow and probably other things. So the brain is involved, no matter how you look at the problem.
    NK17, rosie26, MeSci and 1 other person like this.

See more popular forum discussions.

Share This Page