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My insides feel like rotting death...anyone else?

Discussion in 'Pain and Inflammation' started by OneWaySurvival, Sep 30, 2012.

  1. OneWaySurvival

    OneWaySurvival

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    Does anybody else experience a full-body type of pain that begins somewhere under the skin and penetrates to the core? My insides feel like they are rotting. It feels like my entire central nervous system is corrupted. It is constant, although it flares in intensity throughout the day, ranging from uncomfortable to downright unbearable.

    For lack of a better term, my doctor and I refer to it as neuropathic pain. This term does not seem to do it justice.

    It is a primary symptom for me. And along with profound weakness, is the main aspect of my disability.

    I'm in my 5th year of being disabled by Neuroimmune illness.

    I am looking for others in the M.E. community who experience this type of neuropathic pain. Is there a medical test to diagnose it? Does anyone have any personal success stories of treating it?
  2. Tammy

    Tammy Senior Member

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    Yes............I've experienced different types of neuropathic pain..........some of the sensations are very hard to describe. One example is that I went through a period where my wrists, ankles and back of neck felt like someone was taking a vice-grip and torqueing the you know what out of them. The ankles were the worst..........the sensation was so horrible I just knew that anytime I looked down I expected my feet to be pointing in the wrong direction! Then at other times I experienced the full-body type of pain..................................I know that some people have been helped with prescriptions such as Neurontin and others have chosen a more alternative route. I wish I had some better answers.........but there are many on this board with tons of more information. On a more positive note................these sensations eventually faded away...........I still have some pain but nothing like I used to. Hang in there...........I'm sure you'll be getting more posts.
  3. Marlène

    Marlène Senior Member

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    If it is neuropathic pain, have you tried vit B12 and alpha lipoic acid ALA already?

    Better have your levels of B12, B6, MMA and folic acid checked.

    If too low, don't take cyanocobalamin but hydroxyB12, methylB12 (start very low) and add adenosylB12 (crumb too) after a few months if you can tolerate it.

    ALA is given to diabetic patients with neuropathic pain too.

    To me it feels as if every cell is inflamed, as if my muscles melt away at times, my skin hurts, certain body parts are on fire, ...
  4. taniaaust1

    taniaaust1 Senior Member

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    onewaysurvival.. there are soo many different sorts of pain.. Im trying to work out by your post exactly what you mean., It sounds like you are refering to pain starting out just under the skin and radiating to the core from there? (is that correct).

    I havent felt that kind of pain you describe if I understood it correct but have had so many other kinds of pain with this illness. There hasnt been a part of my body which hasnt felt pain with this illness (even ones eyeballs and like inside the bones can hurt).
  5. Tammy

    Tammy Senior Member

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    I have since edited my above post. I meant to say Neurontin...........not Klonopin. (Brain fog)
  6. nanonug

    nanonug Senior Member

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    Does it come with a warming sensation?
  7. liquid sky

    liquid sky Senior Member

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    I feel that type of pain. It feels like it burn under my skin and in the lining of the brain and spinal cord. Headache upon awakening, joint pain, bone pain, abdominal pain too. I am trying to decrease the histamine in my diet to see if it helps. Also I can take Benedryl and it will help the first 2-3 times, then it seems to quit.

    You might look into Mast cell disorders. There's a thread on here about them. Nanonug knows more about them.
  8. Bunchy

    Bunchy

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    onewaysurvival,

    You are the first and only person to describe my pain exactly. I did not get this until twelve years into my illness though....

    I wish I had answers - it can be unbearable I know too well - but I haven't found anything that works yet for me.

    As others have said there are meds for "neuropathic pain" such as Neurontin, Tegretol, Lyrica etc. Neurontin did not touch this "pain" for me and Lyrica made me nauseous and I felt like I was drunk so could not continue with it. I am trying Tegretol currently but only the past couple days so yet to see if it helps.

    If it is any help, I do find this problem can wax and wane (no comfort when it is at its worst though)

    PM me if you need support.

    I'm actually relieved to hear someone describe my type of pain though sorry that you have to experience it also.

    Love and gentle hugs,

    Esperanza x
  9. ukxmrv

    ukxmrv Senior Member

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    I've been wondering about pain recently in light of the UK post-mortem findings

    (quote)
    One case showed a vast excess of corpora amylacea in spinal cord and brain of unknown significance but Polyglucosan Body Disease was not supported by clinicopathologial review. No ganglionitis was identified.

    One case showed a marked dorsal root ganglionitis and two other cases showed mild excess of lymphocytes with nodules of nageotte in the dorsal root ganglia.
  10. nanonug

    nanonug Senior Member

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    Have you tried an antihistamine?
  11. OneWaySurvival

    OneWaySurvival

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    Wow, thank you to each of you for responding.

    I hope many more will post (not because I want others to feel this way, but because now that I know other people do feel this kind of pain, I believe we are more likely to find relief better by working together than we will alone).

    Let's see...

    Nanonug and Liquid Sky, I will have to read up on Mast Cell disorders.
    Nanonug, I don't feel a warming sensation, but very often my pain episodes at their worst are accompanied by skin that is warm to the touch even though my temp is 97ish. My back and neck are especially warm.

    Marlene, thanks for the suggestion of ALA and checking the B levels. My B levels checked out fine 5 years ago at illness onset, but I don't know about lately. I have a specific question about ALA and/or B12 therapy (which I see has been covered at length on this forum in the context of treating M.E. symptoms in general)...but in the context of acute neuropathic pain...do these therapies produce immediate (and temporary) symptom relief after each dose (similar to a pain-killer for example), or are they more intended to fix the problem by balancing out the dysfunctional systems that cause the pain? Another way to say it is...for those that have found ALA and/or B12 to help with extreme neuropathic pain...does it kick in immediately (within minutes) or is it gradual (days or weeks to notice a difference)?

    More random background:

    I had a milder form of this neuropathic pain at illness onset that I referred to as "flu-like fatigue." It got worse in year 2 of my illness and has been steady in this extreme form for 3 additional years now.

    The agonizing pain greets me each morning and then comes in waves throughout the day regardless of activity. However, physical and mental exertion bring it on faster and with more severity, and the repeated push/crash cycle has a cumulative effect that sends me from homebound (at baseline) to bedbound (during crashes).

    The only short-term or immediate relief solutions I've ever noticed making any difference (for this particular symptom of neuropathic pain) are: Neurontin (like throwing pebbles at a flood), Opioids, and most surprisingly: Ambien (zolpidem). Because zolpidem is a sleep med with loopy side effects, it presents obvious problems as a daytime solution to pain management, but nonetheless it is part of my arsenal of less than ideal solutions to a major pain problem when used at controlled doses at strategic times of the day (to avoid awkward interactions with people for example). None of these seem ideal for long-term use (in my conservative opinion and in my limited knowledge), hence my seeking input from the illness community and doctors alike.

    As a side note on zolpidem, my doc contacted the manufacturer before prescribing experimental day-time doses to see if there were any studies on it's use for anything other than sleep, and we were both intrigued to learn that patients with severe brain injuries that were nearly comatose experienced increased functionality for several hours while on each zolpidem dose. (sorry I don't have a link...it is in my notes with my doctor). My doc (who is a GP) is trying to ask around to other doctors who specialize in M.E. to find out if they have any experience with M.E. patients experiencing immediate neuropathic pain relief with zolpidem. So far, the only responses are that they either have no reports of this or that it could be explained as an indirect benefit from better sleep (which is certainly not the way I experience it...it is immediate and wears off before I go to sleep). The only connection I know between zolpidem and neurontin that could be a clue to their effectiveness with neuropathic pain is that they both work on the Gaba receptors (one is an agonist and the other an antagonist). Hopefully that means more to you than it does to me...

    Please pause for a moment and enjoy the irony of someone with "Chronic Fatigue Syndrome" (I hate that name with a passion!) experiencing increased functionality and pain relief from a sleep med without said person going to sleep.

    In my initial post, I asked about medical tests for this symptom of extreme neuropathic pain. I'm wondering if it is a separate and treatable problem from M.E.? For my part, I consulted a neurologist who was busy studying for boards who (after 15 minutes) said I was beyond the scope of private practice and instead wanted to send me to a university to be studied. He said he would fast track me and would be willing to lower the threshold for referral and all I had to do was endure a handful of tests as a prerequisite. I'm afraid I chickened out (couldn't deal with the prospects of the logistical effort or expense of going through the tests) and ultimately just didn't believe that going to a university with all-too-familiar views on M.E. would get me anywhere. Still, I'm wondering if any of these tests would have done any good?
    1) An EMG (nerve damage test). This one I really wonder about...has anybody out there done this?
    2) Daytime sleep study (to rule out narcolepsy..yeah right)
    3) Blood test for a rare disorder called "Fabry's disease." When I looked at the website, I think it mentioned experimental treatments that cost several hundred thousand dollars and I quit reading.
    4) MRI of cervical spine

    After several years of being sick, going to specialists, researching articles online, stalking forums, pinning hopes on retroviral discoveries and following too many CFSACs, I'm really no further ahead with solving my worst symptom...neuropathic pain...let alone solving my whole illness...than when I first became ill.

    I believe that Neuroimmune illness is a good description of M.E. (at least better than CFS), but also a frustrating description. It lures you into thinking a cure is right around the corner, and yet Neurologists and Immunologists are equally puzzled by us! And when it comes to figuring out this particular symptom of extreme pain under the skin, it seems equally plausible to me to blame the brain or the immune system as the culprit. I wish it were as simple as choosing a neurologist or an immunologist to fix this nightmare!! Maybe it only works if both are in the room at the same time? :confused:

    Esperanza, I PM'ed you. Let me know if you didn't get it.

    Thank you again everyone, and I hope this discussion (as it continues) helps many get relief from this aspect of their illness.

    Your brother in suffering,
    OneWaySurvival
  12. nanonug

    nanonug Senior Member

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    Your symptoms appear to be consistent with mast cell activation disorder. Things you may want to try are: an antihistamine such as Allegra and high-dosage Aspirin, assuming you don't suffer from gastritis. If this works, you may want to pursue a mast cell activation disorder diagnosis (which, in my opinion, is what ME/CFS probably is.)
  13. Tammy

    Tammy Senior Member

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    OneWay, I had an EMG test years ago by a neurologist........nothing conclusive.
  14. tjstoner64

    tjstoner64

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    Yes, I have the "rotting" sensation on a moderate basis. Moderate being around 5 out of 10. I haven't been able to associate this feeling to over-doing, medication or anything else. The extreme weakness, though, is practically constant for me (9 to 10 out of 10). I am an eight year veteran of CFS/ME with Fibromyalgia thrown in, just to make it interesting :). I hope I do not offend anyone with my tendency to have a light/joking-like attitude, but the only other option is to cry about it. So, I work on being light hearted every chance I get. If this bothers, annoys, offends or otherwise negatively effects anyone in any way please let me know. I will stop immediately. There are plenty of other things that fall into the list of bothersome stuff for me as well as most everyone else on this forum. I have just reached the point of where I have started working on being more social. It has been a while, so I'm a LOT rusty. Sorry, to go off topic on this, but back to the rotting sensation. I hate that you have to suffer with this, but it really helps me to know that I am not alone on this particular aspect. It is the first time I have seen it mentioned. Best wishes to all of you brave souls fighting this fight, Tammy J. Stoner
  15. OneWaySurvival

    OneWaySurvival

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    Yes. Thanks for trying to put yourself in my shoes with this particular type of pain. In my healthy life, I never experienced anything like it, so it has taken me years to even be able to explain it like I did in my initial post. I also explain it to people this way: Remember those diagrams you saw of the human body in high school science class where you could see the blue network of nerves all over the body? Well, my entire network is smoldering in a dull torturous sensation and then flaring into unbearable flame. The smoldering is constant (and extremely unpleasant), and the flares happen in episodes that gradually build and fade, multiple times a day.

    My meds sometimes take the edge off, to make my days more bearable. Weirdly, zolpidem is the only one that makes the nerves feel free, almost floating, and then it wears off and I brace myself for the returning plague.

    Tammy J, welcome to the conversation and to the forum! I am honored that you used my thread for your first ever post. Thank you for speaking up as it helps me know there are others in the M.E. community with this type of strange and debilitating neuropathic pain that cloaks the whole body in a rotting sensation.

    On your point about being light-hearted. Nothing wrong with that at all. Laughs and humor are wonderful things to break up a miserable physical existence. A side point here. A family member emailed me recently and asked if I had done anything fun lately. Fun? Oh yeah, I remember that word from a long time ago before I was sick! I replied that it is not possible to have fun in this pain state, but that it is possible to experience joy. My faith and my wife and kids bring me joy every day. I am also capable of finding things "funny" while in pain, just not really having fun. So, bring on the joy, and bring on the funny.
  16. liquid sky

    liquid sky Senior Member

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    I have noticed an almost numbing effect on the nerves from Ambien. Kind of like an anesthetic? It is interesting that klonopin and ambien both work on GABA receptors (different ones) and both give some benefit to a lot of people with ME.

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