Invest in ME Conference 12: First Class in Every Way
OverTheHills wraps up our series of articles on this year's 12th Invest in ME International Conference (IIMEC12) in London with some reflections on her experience as a patient attending the conference for the first time.
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Skin pain all over body...and what kind of doc to see

Discussion in 'Peripheral Neuropathy' started by Starsister, Jun 25, 2017.

  1. Starsister

    Starsister Senior Member

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    I'm confused what kind of specialist I should see for my skin and nerve pain that is all over my body. I have seen a neurologist twice now and every time I try to explain even just a few of my symptoms, he tells me that it his not his area. Even though I can't stand without getting dizzy and have extreme back pain, my most miserable symptom is the constant skin pain all over my body.

    In the 80s I began having pain in my feet, and my feet would burn if I put them in mild temp bath water so learned to prop them up out of water so I could soak my aching body in nice hot water, about 2000 I realized the water didn't hurt my feet any more than realized it was because my feet had become somewhat numb.

    As years have gone by, my fingers and hands now have the needle like pain, and all limbs the pain and numbness has do read to arms and legs. I have had confirmed by a number of GPs that if is neuropathy. But they look at me blank when I tell them I have had the same condition throughout my whole body girl years...the burning, needle like pains covering every millimeter of my body. The worst is my hips, torso, rear, and hamstrings because if is literally impossible to not have that part touching anything and making the pain worse.

    I have been in tears from this kind of pain more than anything else because there is literally no break from it. The most relief is laying on my left side in bed with no clothes or sheets touching my skin (I've been limited fir years from laying on right side or putting pressure on right buttocks due to sciatic nerve).

    I've tried lidocaine cremes, with no effect, temporary help with BioFreeze as long as I can fall asleep before it wears off. I'm used to feeling that my entire body from head to toe is on fire constantly, but the needles where I can't keep pressure off my body is the worst. Twice I've tried explaining this to the neurologist and he just interrupts me and says if it not related to my hands and my feet, it can't be a neurological issue.

    Can someone explain to me why it could not be? He sent me to the spine doc who ex rayed and said nothing showed a reason for it, although I have two MRI reports giving details of bulging and compressed discs throughout my spine, osteoarthritis, stenosis everywhere, and lots of other terms. Spine dr just sent me to pain clinic and all they offered were different kinds of shots in my back but when I tried to tell them my symptoms, hoping someone would help me connect the dots, they cur me off and said their job was not about figuring cause of the pain, just getting rid of it.

    This did not instill much confidence as I'd like to hear some rational as to why someone is going to stick a big needle in me and pump me full of steroids BEFORE I let them fo it. I have weird allergic reactions to steroids in the part, and other meds, so that makes me nervous, plus I can tell by the look on their faces and questions they ask that they have no clue that I am actually talking about pain actually on my skin. Yes, I have the usual cervical and lumbar back pain like many folks, but I could manage that as long as I can get off my back by laying down or sitting!

    My neurologist is in his 60s...I do t know whether he is just old school and I should try a different neurologist (although here the doctors are all owned by the hospitals and even though there may be many neurologists in each practice, they won't allow you to change docs within the practice so you have to go to a completely different hospital owned group, and there is only one other hospital area that I am able to drive to).

    Can anyone tell me if I am even going to the right kind of specialist? He sent me to a rheumatologist but the Rheumy just bent my feet and toes a bit and actually told me I didn't have neuropathy anywhere, going against 5 other docs. Now I don't know what to think, most of this is at my own expense as I have a super high deductible, and I'm not getting any answers, only referrals and they will be running out of places to pass the buck pretty soon.

    Ido have lab orders to do some testing tomorrow to rule out or ID lupus or autoimmune disorders. I'm not even sure if I should be posting this question here, or on the forum that includes "skin" issues. All I know is the feeling everywhere feels like the same pain that started out in feet ad Pandora kegs that they now say is peripheral neuropathy. I discovered the term "small fiber neuropathy" recently on the internet but can't tell if this is if it not..and if it is, why can't the neurologist deal with it? I'm scheduled for an upper and lower EMG, but I doubt he's going to test the middle of my body since "that's not his area". Any thoughts would be much appreciated. I'm running out of specialists to try. Thanks.
     
    Last edited by a moderator: Jun 26, 2017
  2. Starsister

    Starsister Senior Member

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    Needless to say, I am one of those who for the last 20 yrs has had to remove all tags from clothes, sometimes I have to turn my clothes o side out as the seems hurt, so I usually can only stand to be out of the house in anything but soft pajamas for a few hours a few days a week. I've given up on undies, and I recently bought some soft pajamas that could pass as out door wear, just so I can "pass" as a normal person for a short period of time. Any jewelry is getting more and more impossible, and I have to but the $700 plus extra light weight rimless and hinge free glass frames as even the rimless frames with hinges weigh too heavily on my face, temple and ears to not give me a face pain and headache.
     
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  3. alex3619

    alex3619 Senior Member

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    Hi, you might find you get more replies if you break your posts up into smaller chunks. I could not read it earlier, I had to have a nap first.

    I get a similar problem, though only in summer. Its happened before, when on a glutathione therapy, and when on a blood thinner. I think its somehow neurovascular. For me I find the only relief when it is happening is when I am cold. A fan blowing cool air over my skin will decrease the intensity. The other thing is a coolvest. It cools the skin to fifteen degrees C. Both of these will only apply if your issue is worse in heat. There is no guarantee your issue is the same as mine. I am fairly sure most doctors will be baffled, and when they are baffled they like to claim its a psych issue, though this is a cop out.

    PS I have a suspicion this might be a wheat reaction, though I am far from certain.
     
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  4. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    I can't offer any advice re. doctors. I used to have skin pain all over, clothes painful, underwear excruciating and bra's were like a torture device. I didn't push to get a doctor to diagnose it as I knew I'd be wasting valuable energy as with most ME symptoms. I mentioned it once, got the usual reaction which looks something like this o_O and never mentioned it again.

    For the last few years my skin hardly ever hurts now, but I have no idea why it stopped. I also used to have a thing where if someone touched my skin with a finger it would hurt like a severe bruise for about 5 mins then wear off. I don't have this either now.
     
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  5. slysaint

    slysaint Senior Member

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  6. Hell...Hath...No...Fury..

    Hell...Hath...No...Fury.. Senior Member

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    Thats really interesting @slysaint I had the tactile and thermal types (still have the thermal one) it also mentions migraine and raynauds which i also have and also mentions lyrica helping... Which it did! It helped the migraines, raynauds and i'm guessing the alodynia too because it was a few years ago when I tried that and thats when the skin pain stopped.

    I'm sure this will be a big help for @MeganM dealing with doctors.
     
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  7. Starsister

    Starsister Senior Member

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    Skysaint, I am forever in your debt! I think this is indeed what it is..I have all 3. Fans and air blowing on me, especially on my face has also has bothered me for years..and I do have the hot and cold sensitivity. One article says neurologists are most likely to work with it...since mine seems clueless about this, I'm shopping for a different rheum. I think you nailed it. I'm going to print those articles off and carry it everywhere I go to show docs and others I'm not crazy! I am in awe at the knowledge and resources folks have on this site! I'd send you a heart but I don't know how!
     
  8. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    I don't know if a dermatologist would help, but you might consider it.

    If your pain gets worse in warm weather, it could be erythromelalgia. See http://www.erythromelalgia.org/whatisem.aspx.

    Even if you don't have redness, and you are affected by higher temperatures, it could still be erythromelalgia. I've had it over ten years. The best prescription I've found for it is venlafaxine XR (Effexor XR), followed by pregabalin (Lyrica), high doses of magnesium, and when all of that fails, opioids (Vidodin and morphine).

    Even though you don't know what is causing your pain, I hope you will consider venlafaxine XR (extended release) at least 75mg/day (taken with food!) or pregabalin (Lyrica). I wasn't gung-ho about trying venlafaxine, but it made a huge difference.
     
    Last edited: Jun 26, 2017
  9. lilpink

    lilpink Senior Member

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    I have severe neuropathic pain of the skin (allodynia) . I had many tests done, none conclusive. I don't have a peripheral neuropathy however. I take pregabalin which helps a tad. I wear mainly silk. My pain is mediated by allergic responses to foods and airborne allergens.
     
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  10. Starsister

    Starsister Senior Member

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    Thanks for your reply. Mine is not actually a skin issue but nerves endings. The description if allodynia fits me perfectly thank goodness. Unfortunately I am allergic to Vicodin and hydrocodone class of drugs which really sucks!
     
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  11. CFS_for_19_years

    CFS_for_19_years Hoarder of biscuits

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    Allodynia looks like it falls under the care of neurology. It sounds like you need to find a doctor who will listen to you and provide pain relief with appropriate medication. Maybe pregabalin, venlafaxine or duloxetine (Cymbalta) will help you.
     
  12. Starsister

    Starsister Senior Member

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    I'm so sorry for the length, so an extra special thank you for your preseverence! On my iPad I can't see much of the screen at once and so I lose track of how long something is getting..untill I post it and realize and think OMG! Interesting about the vest... I have put ice packs on before. Cold weather or the dry air makes it however...all my nerve pain worse...eso in my fingertips.
     
  13. Bunchy

    Bunchy Senior Member

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    I suffer from severe Allodynia also. It is such a relief to see I am not the only one. I only very recently was able to put a name to this phenomenon after many years but I found out about it by doing my own research online. Doctors have never mentioned the condition to me.

    Heat makes the symptoms a lot worse for me.

    Does anyone have any thoughts on why this might happen with M.E. patients? I wonder if it has something to do with a type of autoimmune effect on the central nervous system/vascular system. (Not too knowledgeable medically speaking!)...

    @alex3619 - do you avoid wheat and does it help at all?
     
  14. alex3619

    alex3619 Senior Member

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    Yes, it helps to avoid wheat, but its probably not the entire answer either. For me wheat exacerbates the situation. You might be different. However I find pulse dosing resveratrol helps with wheat for those rare times when I am out and looking to eat out. The problem is that the issue with wheat is hard to quantify - the reaction is too subjective. Another and different problem I have with wheat, some kind of lung hypersensitivity, is very strongly decreased by avoiding wheat or taking resveratrol at moderately high pulse doses.

    I am not talking about regular neuropathy, which I also have, but about the burning sensation variety. My current understanding is that the cold sensing nerves are damaged and so the body does not get a signal from both cold and hot, which the brain interprets as excessive heat. Increasing the cold sensation can help compensate for that.
     
  15. Starsister

    Starsister Senior Member

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    Im so relieved to find others with thus issue as well. I was becomjng frantic that i was going to die from something that didnt even have a name. The rheumy that i just saw once called it paraestheses or somethjng like that but when i looked it up the symptoms didnt fit but allidynia was exactly what i had described to him. I dont know why he knew one but nkt the other. My gp, nor 4 specialists could ckme up with the term even tho i explained it exactly..youd the neuroligist would have known of it. So im searching for a diff neurologist...he seems tk onlh want yo deal with the periphersl neuropathy which is no where near as misery causing and disabling as the allodynia. I will try being more strict avoiding gluten if thst can help. Ill do anything to get relief. My fatigue has been so mhch better but cant do things because of the allidynia...i just wsnt to ay in bed all day on my side with nothing touching my skin. Ive put ice on places before..but my worst is in cold dry weather when every nerve on my body feels like burning needles...so i spend winter in bed even more. Moisturizer on skin helps as long as my arms and back are working well enough to massage it in. Im going tk be sunk in a few years when i cant mive at all. I have no family so ill be at the mercy of underpaid nursing home staff....they wont care at all about what hrlps this skin pain and i will lose any control over my diet! Hope i can give myself an overdose of something before then.
     
  16. PatJ

    PatJ far and free I gaze

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    My Mom had Allodynia from a spinal cord injury. Roughly 80% of her body was so sensitive that if someone touched her it felt like being struck with a branding iron. The pain would take hours to fade. The soles of her feet were the most sensitive.

    This article describes the use of LDN for allodynia related to "Reflex Sympathetic Dystrophy." Maybe LDN would be useful for you even though you may not have RSD.

    Some fragments from the article:
    And this article provides more details on LDN. It includes an interesting note in the user comments section:
     
  17. abc123

    abc123

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    Regarding allodynia, has anyone had a skin punch biopsy done to investigate damage to peripheral nerves?

    https://www.ncbi.nlm.nih.gov/pubmed/26497568

    https://www.ncbi.nlm.nih.gov/pubmed/24719395

    http://www.prohealth.com/library/showarticle.cfm?libid=19621

    Has anyone here consulted with Dr. Xavier Caro (Los Angeles, CA)?

    http://www.fibromyalgiaxcaromd.com/

    My understanding is Fibromyalgia was previously thought to be caused in the central nervous system, but this research shows that FM can include epidermal nerve fiber damage (identifiable in a simple skin punch biopsy), caused by who knows what--autoimmune attack, pathogens (this symptom is also common in Lyme patients).

    Then, in the FM model, this (real) peripheral pain winds up the central nervous system, changes pain thresholds, etc. But this research seems to confirm what "crazy" patients have been complaining about--pain in the SKIN...

    Then the question is how to treat this, and possibly heal and recover from it (small fiber nerves could presumably re-grow, like other tissue).
     
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  18. Isaiah 58:11

    Isaiah 58:11

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    A Sun-Scorched Land
    Fascinating! I have had that since childhood. As some posters above mentioned, even moving air hurts.

    Like another poster, I have codeine allergies: the only thing I have ever found to help in a flair was to take multiple baths per day, with water just shy of scalding. It seemed to deaden the feeling for a bit. Cold made it markedly worse.

    Please consider pushing for some sort of nerve testing and treatment. I never did and thought that I just had less of a problem as the years wore on- until this summer when I burned the backs of my legs on on hot concrete without feeling it. :eek: Maybe there is something that can be done to prevent you from worsening?
     
  19. abc123

    abc123

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    Here's one lab that does the skin punch biopsy:

    https://www.therapath.com/rheumatology

    More along these lines:

    "Fibromyalgia: It's a Nerve Disorder"
    http://powerhealthtalk.com/fibromyalgia-its-a-nerve-disorder.htm

    "Objective Evidence that small-fiber polyneuropathy underlies some illnesses currently labeled as Fibromyalgia"
    https://www.ncbi.nlm.nih.gov/pubmed/23748113?dopt=Abstract

    "Small fibre pathology in patients with Fibromyalgia syndrome"
    https://www.ncbi.nlm.nih.gov/pubmed/23474848?dopt=Abstract

    "Routine use of punch biopsy to diagnose small fiber neuropathy in fibromyalgia patients"
    https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4348533/
    (Mentions Corinthian Reference Lab, which also does skin punch biopsy testing)

    To the original question regarding what kind of specialist to see--maybe ask a rheumatologist to do a skin punch biopsy (if you're interested in investigating this), or ask them to refer you to a dermatologist who will do it. Neurologists are the must useless specialists, in my experience (just my $.02).
     
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