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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. Shoshana

    Shoshana Northern USA

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    I am so sorry that you have this terrible degree of pain and suffering, @Starsister
    That would make anyone do things they don't ordinarily do.

    But we DO care, and we do want to know, and we do want you to hang on and keep trying.
    And to not take any more, when the meds are not helping.

    Living alone makes this sort of thing worse too, for you, though normal other people do not comprehend, even if they lived with you, but WE DO understand. And of course, you need someone to tell.
    We know that you helped others and still do, whenever you can.

    I just this minute saw this thread for the first time,
    and I was able to read some of it, so far.
    I hope some of the ideas others gave, will help you. Any of them are worth trying,
    because YOU are worth it!
    We do know that much.

    I do get burning and needle-pick pain, which is dreadful when I have it.
    I use cold and ice packs, and it is very hard to bear.!
    While I don't think I have it as widespread over entire body at same time, as you describe. And not as often, But I do get those painful symptoms.

    We all know how real and how terrible it is, whether we get it or not, and whether we get it as badly. I am sure there are others who do.

    We definitely care , about YOU.
     
    erin, Sushi, jesse's mom and 3 others like this.
  2. Shoshana

    Shoshana Northern USA

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    I am reading a bit more of the posts on this thread and thinking of you @Starsister

    I thnk that Lysine is a good idea to try, and cheap and probably safe, I would think.
    I have used it generously without any side effects, for various things, that might relate. The caps are easy to get. Readily available.

    I also have trigeminal nerve pan, which is a very bad pain. I didn't think it was the one you were talking about,
    but I thought of it when I read more of this thread and your posts. You might look it up, it might be the pain in your face.

    Let us know how you are, today.
    :hug:
     
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  3. Starsister

    Starsister Senior Member

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    @Shoshana , thanks for asking me to check in today...it's so weird and I'm so embarrassed that I have no one in my life here who would ever ask me how I am doing. I feel others will think I must really be an unlikeable person to have no one in my life, but truly I used to have a large circle of friends and family! They have just all died, moved to other countries, or don't want to know or are afraid I'd tell them a problem. I guess it is just human nature, as I noticed when I was dating someone seriously that suddenly people were more friendly and would invite me or us to to things..I wonder if because they knew I had someone to else to ask for help and they felt safer that they wouldn't have to be involved in someone else's problems.

    I want to thank everyone for responding to my post and offering suggestions, many of which I will follow up on. Even though the pain was still there, it felt so incredible to know I was not completely alone and that somebody cared! Just a bit of your emotional connection allowed the damn to burst and do some crying that was well overdue. I am feeling back to my normal skin pain level today, but the meds I took yesterday, which I thought has worn off by bedtime, must have helped my routine sleep meds knock me out for 10 1/2 hours...without even waking up. Usually, even with taking an antihistamine and Valium, I only get 4 hrs sleep at a time. My brain is not working right and my usual hand tremor has turned into a trembling all over my body, but that I can live with, but not having my skin on fire.

    If anyone else reads this, if you are aware of any Allodynia pain groups online, I would like to know about them. I tried to look up things yesterday but too out of it. Thanks so much for the support. Love and hugs to everyone :heart:
     
    Last edited: Feb 15, 2018
  4. Shoshana

    Shoshana Northern USA

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    I am very glad to see your update, and I am sure tht others will be as well.

    I do not find it unusual or surprising, that many of us have become far more isolated than we had ever imagined being, despite how kind we were to many others in our lifetimes.

    There are all of the usual reasons, I think that isolation is more common than we realize, (I am using the word for the "not having anyone who calls to say how are you doing" or that wants us to call, or notices that we don't... )
    amongst many people for many reasons.

    Add those to our illnesses.... with our limitations, we not only can not show up to social or other type gatherings, we cannot sign up for anything, volunteer to be dependable for anything, attend a class, we cant do things of 'common interest' with anyone.... we cannot even continue with the friendships we had, because they are too taxing, in so many ways, and we lost our commonalities with so many people we knew.....and we cannot be pleasant and interested in everything/anything, someone else is.

    so yes, this is a very isolating illness. Pain itself, isolates us. We cant do things when in pain, and others steer away.... One by one, many of us, lost them all, in addition, as you said, to all of the normal losses, from people moving or dieing or changing....

    Sounds very depressing,what I wrote, but I meant it, to say,that we do understand, that there's nothing strange or embarrassing , when some of us find ourselves in this situation.

     
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  5. Starsister

    Starsister Senior Member

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    I keep trying to to think what I could have done yesterday or today that would have caused some such a sudden flare up. I have flare ups but not any that severe for a long time. My day yesterday started out with checking my bP and pulse in morning after getting out of tub. BP wasn't too too low, but pulse was 150 so don't know if that was associated with the skin pain, although these days I've been having very high resting heart rate on a daily basis for no obvious reason. All such a mystery.:confused::thumbdown:
     
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  6. Starsister

    Starsister Senior Member

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    @alex3619 , thank you for responding. I recall now that you mentioned you have the small fiber polyneuropathy. No doubt same as small fiber neuropathy which I read about in the past. I think allodynia is considered a form of that but not sure I recall right. Did you have to have the chunk of flesh taken out of your skin to get diagnosed? That's what freaked me out. But surely it can't hurt more than what I go through on an all too regular basis. Was your dr willing to diagnose without an EMG! My skin just hurts all over all the time so I can't imagine the torture of the test that everyone says is so painful. I went to a neurologist twice and he just said any pain that wasn't my hands and feet is not his concern. I've had peripheral neuropathy for 30 years, non diabetic no cause, but that isn't what stops me from living. He wanted to do a full body EMG but I already have the neuropathy diagnosis and they said there is no treatment anyway so a functional medicine neurology dr told me he could do an EMG years ago but there was no point.

    Does yours feel like what I've described? Also, I have noticed it seems worse after I eat a lot of sugar as well as salt...like too much salt that makes me feel swollen, puffy, like water retention. Interesting that blood thinners make it worse...do you mean like aspirin, and the other nsaids? Those are part of concoction I use to try to help. Interesting about spicy foods...one of the suggestions on one blog suggested capsaicin creme which has chile peppers in it...I bought some but I didn't consider the increases burning from the creme to be a good distraction from the burning everywhere.

    I remember from another thread you mentioned the ice vest. Id like to have the ice where is is most painful, which isn't me chest but my seat, thighs and hips. Although when I'm standing and not pressing from sitting or laying down, the pain is equal everywhere, except where fabric touches. I shall research the vest. The only thing that helps the pain each day is laying in bed on my side...so if I can sleep, I can have relief from pain while asleep and for an hour or so after I wake, before I start to get burning again from sitting. I'd try doing more things standing, but my spine pain and pots prevents me standing much. My only solution and fave fantacy is being able to just float in the air...or in warm water but I'm allergic to pool chlorine.
     
    Last edited: Feb 15, 2018
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  7. alex3619

    alex3619 Senior Member

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    No, my diagnosis is not confirmed by biopsy. I have burning feet syndrome, and that is the leading cause. I also get the burning all over, even internally, on rare occasions.

    Cooling my skin anywhere helps the pain everywhere. Its more about fooling the brain which is receiving all those signals of heat.

    My problem is amplified by ambient heat. On a very hot day, after eating wheat, it feels like I am in a furnace.

    The blood thinner was when I was in hospital, that is part of standard post surgical procedure.
     
  8. Gingergrrl

    Gingergrrl Senior Member

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    Please do not think that @Starsister and you are a victim of life circumstances and truly any one of us could be in your shoes. You were the caregiver for 4-5 other family members and you are a kind and loving person. We may not be able to solve the reason for your burning skin pain but I hope we can alleviate your fears that you an unlikeable person b/c it is untrue. I am blessed to have family and friends in my life BUT if they all died or moved away, would that make me unlikeable?
     
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  9. Shoshana

    Shoshana Northern USA

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    I wondered if you are on a public water supply . If so , there may be certain times, or certain days of the week, that the chlorine and other chemicals are stronger in the water. (for your bath, etc.)
    And other times it would be weaker.

    I remembered you said you had been in the tub, earlier during the day, @Starsister
    before you had the extreme worsening at evening, or night, (later same day?)
    that caused you to write this original post.


    If you have a well and your own water supply, I still wonder what might be in it , that could possibly exacerbate the condition you have anyway, but just searching my mind for reasons it flares, and slight possibilities, to help unravel what you could possibly do to lower the sufferings.

    Also water could effect laundry, which influences your clothing, sheets, towels, etc. Things you have against your skin.

    Just ideas to think about if you think you should. Hmmm.... having water tested is less painful than having tests, ourselves!

    I know you have the illness itself causing a problem with nerves, and/or nerve conduction.

    The nerve conduction test was very painful and I did not get any helpful treatment from having it.
    I don't know if that was one of the tests you were referring to, or not.
     
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  10. Starsister

    Starsister Senior Member

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    @Shoshana

    The nerve conduction test was very painful and I did not get any helpful treatment from having it.
    I don't know if that was one of the tests you were referring to
    Thanks for your thoughts on things. Sorry I still can't grasp how to quote a sentence....It still copied the entire post so then I erased most of it! But Yes, I would think the EMG the dr wanted is essentially nerve conduction. I'm sorry you went through it and it didn't even help with things..that has been my concern and have heard before so I will probably avoid it. I don't trust that dr I had anyway.

    Regarding water etc...I have a RO filtering system that also removes chlorine and water...supposedly. I got the county water report on additives a few weeks ago and it seemed like it is low in additives they typically warn about. I also use a chlorine filter for my bath, as I know I'm sensitive. The major pain hit after sitting for two hours with a client, but sitting is all I do and as long as I move around every hour or so, I'm ok. One thing the flare up may have been from was the day before I had done more excersizing than usual...stretching for 5 minutes and then the elliptical machine for 4 minutes..sounds like nothing but A lot for me.

    I noticed I had a flare up when I tried a physical therapist a few sessions last fall so didn't go back...maybe it was the therapy maybe not but I just get to where I'm afraid to do anything for fear of provoking another one if those extreme attacks. Only thing different I did the other day was had a protein and fruit smoothie ..that was all I'd had to eat that day..and i realized when I tasted it that I'd put more fruit in it than usual...frozen cranberries, tiny tangerine, half banana and the I added tart cherry juice so I know I overloaded on sugars ..even though I had soy milk and soy protein powder, and a good handful of walnuts blended in.

    I've noticed for years that sugar and too much salt makes that kind of pain worse. I want to believe there is something causing it that I can eventually correct, but after all these years, I'm resigned to never being able to control my body. My blood tests showed extremely high level of vitamin b 12 and b6, so the neurologist told me b6 increases nerve pain and to stop that supplement so I found a b complex without 6 which I've been on for 6 months now...but I'm not seeing an improvement. My labs in some ways very diff than what I read of others on here. And I don't have post excersional malaise like others describe but major pain. Just, hmmmmmmm:thumbdown:
     
  11. Shoshana

    Shoshana Northern USA

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    Glad you are here anyway, @Starsister however your symptoms do and do not, overlap with others.
    They definitely overlap enough. Plus the ways you live overlap, too.

    What jumped out at me here, in your post, was tangerine.
    Might not be significant, but its what jumped out at me. :woot: :D

    Imagine, a tangerine jumping at me, from out of the laptop screen! :rofl:

    Seriously, I do have serious problems with citrus.

    But might not be significant in your flares, of course.

    Maybe the exercises push your heart rate even farther up and exacerbate?

    Though, I am with you, that sitting is the worst exacerbater, though how do we avoid that?
    And I also agree with you, that we might never figure out all the mysteries we would like, in order to control more
    of our symptoms, but its still good to try!
     
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  12. Shoshana

    Shoshana Northern USA

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    I also agree that having to lay down against one side or the other or on any body parts, is very difficult.
    And worsens pain of various types.
    FLOATING IS a MUCH better idea!
     
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  13. kangaSue

    kangaSue Senior Member

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    Just reading somewhere the other day that an ice water plunge can "shock" the brainback into a normal pain sensing rhythm when the brain has been turned on to pain sensing for a long time. Said to be much the same as what a defribillator does for your heart rhythm.
     
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  14. Starsister

    Starsister Senior Member

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    Yup, I'm about to throw ice all over my face and hips to break the pain and burning cycle!
     
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  15. Sundancer

    Sundancer Senior Member

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    Hope it helps you, I find I think of you
    ( and like your white bird avatar )
     
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  16. Starsister

    Starsister Senior Member

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    Thanks. This is my cockatiel Pi. She passed away suddenly two years ago but she was my loving, cuddly, kissy, devoted companion for 13 years.
     
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  17. maybe some day

    maybe some day Senior Member

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    Pets are likely the only known therapy that works pretty much for everyone
     
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  18. Sundancer

    Sundancer Senior Member

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    she's cute, just like you
     
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  19. Sundancer

    Sundancer Senior Member

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    I'm still wondering whether I should get a cat or kitten somewhere... On the one hand, it would be nice.
    On the other hand, a new cat/kitten need to learn things/ makes messes etc. And cat-stink from the poo is not something to look forward to either.

    But still... I may
     
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  20. Starsister

    Starsister Senior Member

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    Unfortunately I'm a bird lover AND a cat lover and they dont mix too well. I'd love to have one or other but I had a cat for 21 yrs and heartbreaking when she died, as well as my Pi. Don't think I could handle the fur or cat box smell anymore, and even with the cockatiel I got sensitive to the smell of the droppings and hard time keeping the food and feathers cleaned up. I don't think I can handle any more losses in my life anyway. She was the first bird I had who became completely hand tamed, so much so she didn't believe she should have to live in a cage but insisted on sitting on me every minute. So sweet, she would nibble at me till Id let her kiss my lips. She'd preen my hair, taste my food, talk to me constantly...her language not mine....:love:
     
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