Invest in ME Conference 12: First Class in Every Way
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Desperate for HELP or support for extreme burning generalized skin pain

Discussion in 'Pain and Inflammation' started by Starsister, Feb 14, 2018.

  1. Starsister

    Starsister Senior Member

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    I am desparate to speak with anyone who can relate to the kind of pain I am having right now. From what I read, it could be called Allodynia, but I just read some blog elsewhere and what was being described was no where near as excruciating as what I am having and have had for years. I went from being normal pains today, to sitting in soft chair to work for two hours, but when I laid down to rest every nervevending in my body caught fire from head to toe. I've had this for years where I'm in tears and all I can do is lay on one side in bed with as little touching my skin as possible, as little pressure as possible. I can't even lay on my right side due to sciatica for years. So I just lay here and cry from the pain that no dry will acknowledge..and all these years never identified a trigger for from my diet or activity at least. I can't believe anyone us here xpected to go on living like this.

    My symptoms are...my hip, rear and back of thighs are most painful as they get constant pressure from sitting or laying down on back. The feeling in those parts are like it is o e large bruised area hurting from any pressure. But then on top of that...literally on my skin...I feel like I'm on fire all over with burning, millions of needles. It literally is all over my body from my toes to touching my hair. In desperation I took a bit ago two Aleve, 600 mg of gabapentin, 5 mg of Valium, kava kava, and covered myself in biofreeze..leaving all my clothes off and laying on my side with head flat on mattress. Then I took 1/4 pill of hydrocodone...opioids typically just make me itch and have no effect on pain, except if I take it with a Valium I can get a full feeling in my head which helps distract me a bit from the pain. Starting to feel well enough to lay on back a bit, putting pressure on my tender body parts, but at least I can hold my iPad up to type this. All the skin pain also just quickly gives me a throbbing feeling all over and in my head so got ice on my head and moving it around on different parts that are still burning.

    Of all the crazy symptoms I get from this crazy illness, or co morbid with something, this burning pain is what will drive me to purposely take every single pull I have to die. When I'm hurting that much, I just do t care anymore, I become so frantic to end the pain.

    Is anyone struggle with this to this extreme? Does Allodynia make sense? My gp is worthless so went to soecialists last summer and the neurologist just said any pain that is not in my hands, feet arms of legs, is not his business! Well I've had for no apparent cause, neuropathy in my extremities since the late 80s but I've learned to live with that, but this burning where I can't get relief in any position because it is everywhere, is going to kill me.
    I'm desperate for resources, articles, just to manage the symptom..I gave up on recovery from CFS and fibro years ago. It would just be nice to talk to one other person who can relate to what this is so I don't feel so alone. Places just refer me to fibro pain sites but this is so different, and it's not a localized area that can be treated by a physical therapist like some sites suggest. Please help.
     
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  2. Diwi9

    Diwi9 Senior Member

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    @Starsister - I have some mild intermittent burning pain along nerve endings stemming from my ulnar nerve in both arms, but no experience with the sort of pain you are feeling. My Mom suffers from neuropathy post-lymphoma. At one time a doctor prescribed her a compounded ointment that included amitriptilyne and ketamine (DMSO for absorption), I wonder if a compound like this could be helpful for you. Maybe not stop the pain, but make it more manageable.
     
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  3. Starsister

    Starsister Senior Member

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    It brings tears to my eyes that someone cares to even reply so thank you so much. I will try anything so will ask my dr about the compound you suggest. She usually doesn't accept what I've researched to help and just wants to prescribe more of what I'm already taking, or trying to get me on SSRIs which I can't stand. She can't get that what's driving me crazy is the pain, and they say there are no alternatives to opioids. I don't think that is the right kind of med anyway for this...they can't grasp pain that is not in a particular spot. Pain clinic wanted to give me shots of steroids in my spine, but I can tell by the way they responded that they had no clue what kind of pain it is...I have spinal problems and pinched nerves in spots, but this is all over. And I've had awful reactions to steroids so the last thing I want to do is go have them inject me, have a reaction, and have no support system to even help me go home.

    I'm so ill equipped to understand all these medical terms and letters, so sorry, but what is DMSO?
     
    Last edited: Feb 14, 2018
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  4. Diwi9

    Diwi9 Senior Member

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    I don't know where you live, but maybe Google "ketamine infusion" and see if there is a clinic in your area. This therapy seems to work for some people and there are doctors out there who specialize in this treatment. I am so sorry you are going through this. It sounds a lot like what Anne Ortegren wrote about in her farewell poem...and if something can be done it should. Even if you have to travel to a clinic, my understanding is that infusions happen every few weeks. I hope you find some help.
     
  5. Timaca

    Timaca Senior Member

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    Hi Starsister~
    I am so very sorry for what you are going through. :( When my illness first hit me in the fall of 2003, I had burning nerve pain over much of my body. It was excrutiating! My head would burn so much I would tie a bag of frozen peas on to my scalp to help relieve the pain.

    While I still have burning, sparking, crawling nerves all over my body, it is much more bearable now. I never took any medication for it, although a neurologist did prescribe something....which I took for a few days but discontinued. I wonder if whatever a neurologist would prescribe for peripheral neuropathy could help you??

    I want you to know that I understand.... although I certainly haven't had the severe pain as long as you've had it. You are in my thoughts and prayers and I hope you can find some relief soon.

    Best,
     
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  6. Starsister

    Starsister Senior Member

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    Thank you so much. I've been afraid to read the letter Ortegren wrote cuz it would hit too close to home, but maybe I should if I can find it again. Someone on the ME phone support group mentioned to me just last week that what I was describing sounded like what she went through. Gosh..infusions sound scary, I pass out with needles, and I am not able to drive very far. Any possible decent drs keep moving far away to the affluent areas of the city. I've spent my life taking care of others so I don't know anyone healthy to help me now.
     
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  7. Isaiah 58:11

    Isaiah 58:11 Senior Member

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    A Sun-Scorched Land
    I don't have much to offer. :( Unfortunately, I do know what you are talking about though.

    I once had a doctor tell me that was viral reactivation in my nerves, but then when the problem resurfaced she had forgotten that she said that.

    *If* that were true, 4 grams daily of lysine, eventually moving to 1-2 daily could help. I did that for years because it was supposed to help with EBV and related (I don't think there is any real science on this?) and the skin pain was gone during remission after that, but I certainly can't attribute the remission to lysine. Lysine is cheap and safe though...

    The only thing that ever helped in the moment was "frying myself" in a bath just short of scalding. (If you try this, please be careful and don't burn yourself. Also, watch your heart rate and get out with any feeling of dizziness!)

    As mentioned by the poster before me, the scalp has often been the worst and while high doses of ibuprofen could never do anything but slightly turn down the blowtorch (seriously, that bad!) I have found that starting medications & supplements for MCAS has made a huge difference! Because of a few related symptoms, I think that the problem may somehow be caused or worsened by prostaglandins?

    I will be praying you get some relief. <3
     
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  8. Starsister

    Starsister Senior Member

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    Thank you Tamaka. It means a lot to know that you can understand part of it. I also get the burning head frequently, even when the pain isn't so excruciating on my other places. Everything always hurts but it's the excruciating times that knock me down. I too walk around with ice packs on my face. What the heck is going on in our heads? It seems like such a weird way to have inflammation but I guess that is the encepha whatever part of ME? The neurologist I saw twice was worthless..he got annoyed that I was trying to talk to him about anything other than the neuropathy in my feet, which I had learned of from a friend and I had a dr at the time who was willing to prescribe things I requested. I've never once had a dr in their own suggest any medication ...except opioids which I can't take. That neurologist just saw I had a bad tremor and quadrupled the dose that my gp had prescribed of something ...again, by my doing my own research and asking to get the rx. I've never had a dr be proactive or think for themselves. Thanks for your connection. I'm glad you are having better days now. .:)
     
  9. Starsister

    Starsister Senior Member

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    @Isaiah 58:11
    I don't have much to offer. :( Unfortunately, I do know what you are talking about though.
    Thanks for your reply. I guess I'll have to seriously look into the Mass cell thing. I think I'm managing and convince myself I can live with the symptoms and the worst is over, then for no reason, I get hit with being on fire all over again and I'm crushed.
    I can't imagine getting into hot water when I'm burning up...I was having fantasy of filling tub up with ice water and covering myself in that..the only thing that would help, but I was writhing in pain so much I couldn't get it together to figure out how to even walk to kitchen to get ice. OK I will look into mast cell thing...but I know my dr will not take the 5 mi utes I am allotted to understand and she will just shrug and come up with Another SSRI. They think that will fix all the pain. Aaargghh. :bang-head:
     
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  10. Starsister

    Starsister Senior Member

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    Yikes, I looked up ketamine infusion and guess that won't be happening since it is $ 400 to $800 each time. And insurance doesn't cover it even if I gas good insurance. Always sucks to read that you can have a " loved one" come into the room, and to drive you. I have no loved ones...they all died of dropped me because it was too much hassle to be friends with a sick person. Interesting to read about though, thanks for the info. I can't imagine anywhere around here that would even do that...no one came up for my city. we don't have doctors who will work with fibro or CFS let alone a clinic to specialize in something like that. I can't even find a gp who knows anything or wants to learn! .
     
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  11. Gingergrrl

    Gingergrrl Senior Member

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    I am so sorry you are in so much pain @Starsister and I'm also sorry if my post is a bit jumbled! I just wanted you to know that UCLA does ketamine infusions (I have never had them but I know that they do them). I don't recall which part of the country you live in. Do you think it is nerve pain/neuropathy? Do Gabapentin, Lyrica, or Lidocaine patches help at all? I think heat helps nerve pain and ice makes it worse (but I might be wrong on this).

    I get excruciating pain in my right arm, shoulder, and right side of my neck (from 3-4 different causes) and I think it is now lifelong and pre-dates my illness. The only thing I can do when it is truly severe is take a pain pill. Otherwise I use heat or an ice-pack (both work b/c mine is muscle/tendon pain and not nerve pain). Typing makes it worse but since I (obviously :eek:) type a lot, I just have to live with it. I've never experienced what you are going through and I wish I had a better suggestion for you! You are such a kind and loving person to everyone on the board in spite of being in such severe pain.
     
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  12. Starsister

    Starsister Senior Member

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    @Gingergrrl , this is so kind of you to respond to my silly problems, especially with all that you have been going through with your mom. I am realizing even though I live in a major city, Kansas City, the Midwest, with loads of hospitals, we don't seem to have the sophistication of medical care and resources that the coasts appear to have.
    Yes, gabapentin is the one thing I can take with no problems, I started it for sciatica many years ago. For some reason this kind of skin pain just does not respond to NSAIDs, Gabapentin, etc. I'm allergic to Tramadol and some other things, I wanted to try Lyrica but couldn't afford the $500 per month cost. I do always have ice packs on hand, just hard to reach them or maneuver them without creating more pain but I grabbed one for my burning face once I could get it together today! You mention lidocaine patches and I will look into that again.

    I start to feel better and then I drop the ball on my research. Of course the trick is finding a dr who will prescribe what I'm wanting. I finally broke down today and took a quarter of a hydrocodone..it doesn't really seem to touch the pain, but makes my head feel like itchy cardboard, but it dulled me enough combined with everything else to where I hope I can get some sleep. I have the "red hair gene" so I react to meds differently than some....opioids make me hyper, plus itchy, so I have to not take it near bedtime. Thank you so much for your thoughts, Ginger! It has been a great comfort to have the folks on this board to talk to, especially today when I was at my ropes end. If I had tried calling anyone I actually know in person, that would have been the last time they would have wanted anything to do with me! Been there, done that.
     
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  13. PinkPanda

    PinkPanda Senior Member

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    Hi @Starsister
    I am so very sorry about what you are going through.
    I am a bit low on energy so I couldn't read the whole thread.

    About the burning skin pain:
    A thread on this is here- Burning sensation on skin
    Histamine and mast cell activation syndrome might be an issue. One person writes that antihistamines helped them.

    This is a blog from a woman who got severe skin burning from light exposure and she writes that certain supplements and a histamine low diet helped her:
    http://annalyndsey.com/2016/08/05/getting-better-the-science-part-1/

    I also get burning skin from light-exposure and vitamin B2/riboflavin and vitamin B12/hydroxocobalamin help me. They can assist histamine breakdown.
     
  14. alex3619

    alex3619 Senior Member

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    Hi, totally. I have had that. First, I found relief with an ice vest. Does cooling down help? The colder you can get, without getting chilled, the better, if your problem is like mine. In my case I think its a form of small fiber polyneuropathy, but not the kind that is mostly in hands and feet. However the burning feet sensation from neuropathy is the same, but can be everywhere, even in the lungs.

    These nerves go everywhere, and regulate all blood flow. I found blood thinners trigger it very badly. The other thing is wheat ... I found I had become sensitive. If I avoid wheat its less of a problem. You might also like to avoid spicy foods, especially chilli.
     
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  15. Wayne

    Wayne Senior Member

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    Hi @Starsister,

    I'm so sorry to hear what an extremely difficult time you're going through. I'm much more naturally oriented, and the things I'm going to mention may sound a bit odd, but I'll briefly share my top 3 pain relieving strategies:

    1) DMSO (DiMethyl Sulfoxide) - A natural substance derived from trees, it's been studied extensively over many decades, and it's safety profile is remarkable. My understanding is i'ts widely used all around the world except for in the US. I've long believed that if it could be patented, it would be the number one selling drug. I also believe that if people knew about it's remarkable ability to relieve pain, there would be no current opioid crisis.

    2) Castor Oil & Castor Oil Packs - Can bring remarkable relief for various kinds of topical pain.

    3) Coffee Enemas - German medics in WWI discovered that when they gave their patients coffee enemas before surgery instead of water enemas, that post surgical pain was dramatically reduced for several hours. (They discovered this accidentally one day when they ran out of water, but they still had some coffee available).

    I've suffered from fairly excruciating daily headaches most of my adult life, and coffee enemas have been a godsend. I would wake up every morning with anywhere from a mild to severe headache, and a CE would always at least improve it, and usually made it go away for at least several hours.

    I realize these are all very unusual therapies, but they've worked very well for me. I don't know that they would work for your situation or not, but it may be something to consider. I'll leave you with a short story about DMSO:

    Two of the doctors who were researching DMSO for many years were well aware of its pain relieving qualities. One day, one of them injured his leg, and promptly put some DMSO on it. He walked around on it comfortably for a while, when he got to thinking. Is the pain relief actually masking a more serious problem? He decided to have an x-ray taken, and discovered he had actually broken his leg. But didn't realize how serious it was because he had applied DMSO so quickly. -- DMSO improves circulation and decreases inflammation. And has many other unique and amazing characterisics besides.

    Again, I'm so sorry to hear how much pain you're dealing with. I sincerely hope you can find something that will give you some relief.

    All the Best, Wayne
     
  16. Sundancer

    Sundancer Senior Member

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    dear @Starsister, I hurt to read about your excruciating pain.
    You're not silly as you write somewhere, you're very ill and neglected by doctors.

    I too had the association with Anne Ortegrens last letter, but me thinks you are wise to not read that yet. Wait with reading until this bout of pain has diminished enough so that you might be able to handle reading that, because it does come so close to your experience.

    Furthermore I thought of this piece of research, about small fiber neuropathy (SFN) . It may be too much to read for you right now. But the gist of it is that SFN is objectively to be diagnosed by a biopsy, and that IVIG in 75% of the patients is being found of enormous help in the sufferers.

    https://www.healthrising.org/blog/2...bromyalgia-chronic-fatigue-ivig-autoimmunity/

    I'll paste a small part

    ----------------------------------------------------
    Because SFPN is very underdiagnosed it’s hardly ever treated properly. That’s a big mistake, Dr. Oaklander thinks: her latest study suggests that a treatment is available that may help many. Dr. Oaklander put her intuition to the test in a retrospective study that examined the medical records of 55 patients treated at Massachusetts General Hospital (MGH) for autoimmune small-fiber polyneuropathy (SFPN).

    The study – which news reports back in November referred to but which has not apparently been published yet – found that treatment with intravenous immunoglobulin (IVIG; 2 grams/kilogram every four weeks) provided symptom relief and improved nerve function for 75% of patients.

    One person on high doses of oxycodone reported that her pain disappeared within five days. “I didn’t know how I was going to live with that level of pain,” she said, adding that it returns every time she stops treatment.

    Dr. Oaklander called the results “wildly surprising” and “paradigm-changing” in that the study presented the first strong evidence that SFPN is an autoimmune condition.

    -------------------------------------------------------

    But reading your story , finding a physician that will help you will be a big problem.

    big ( but careful) hug for you :hug:
     
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  17. PatJ

    PatJ Forum Support Assistant

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    My mom had allodynia due to a spinal cord injury. Roughly 80% of her body was so sensitive that if anyone touched her it would feel as if she had been branded with a red-hot iron. The pain at those times would be so intense she would feel like vomiting and it would take hours for the intense pain to fade back to a lower level. Her feet were the worst and she could only stand to have her toes rest on the edge of the footplates of her wheelchair.

    She spend years on different pain meds, including Gabapentin, but nothing helped much.

    Here are some clippings from a file of health tips that I've gathered. Hopefully something in here will help you:
     
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  18. jesse's mom

    jesse's mom Senior Member

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    I am so sorry you are in so much pain. Ice helps me with nerve pain, I even cool my room down to almost a chill.
    Most of the people on this site know so much more than I do... about all the supplements.
    I saw where someone suggested Ketamine infusions. I have been looking into this for a while and there are more and more clinics popping up every week. I hate needles too. Ketamine infusion use a small IV needle, it is not a deep in muscle injection. You must have someone to drive you home from the establishments.
    I am going to try to get my orthopedist or my neurologist to refer me, Medicare is starting to pay for this treatment.
     
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  19. maybe some day

    maybe some day Senior Member

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    Im not sure I can offer much, but I hope you find some relief. I have read that folks with fibro and arthritis can benefit from satin sheets. When you move, it doesnt cause as much friction on the limbs- easier and less painful to move. As I re-read your post, not sure if those sheets would help, but it might be worth a try.
    Does a cool bath help? espson salts?
    Sorry, I really wish I had some better ideas.
     
  20. erin

    erin Senior Member

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    So sorry @Starsister that you are in such pain. I don't experience this symptom, just wanted to say I hope the pain eases soon. We all fed up with this illness one way another but what you have now is just so draining. Sorry for not being helpful. Hugs...
     
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