Burning Pain - Does Anyone Else Experience That?

Discussion in 'Symptoms' started by Cort, May 9, 2015.

  1. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Burning pain isn't even listed in the symptoms from a symptom study recently done in ME/CFS but it's always been one of my key symptoms. It's usually associated with nerve issues but could reflect lactic acid buildup. Mine is very localized to my skin - after I exercise too much or whenever it feels like it's present across the top of my body.

    In an FM symptom survey it would be presented prominently I assume. Does anyone else experience burning pain associated with the skin and if so do you have ME/CFS or FM and is there anything you can do about it?
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  2. Issie

    Issie Well-Known Member

    It could be SFN. Very common for us with that. Depends on if it's autoimmune related or not. For sure my immune system is a mess right now.

    Mine is bad at the moment and I think it's because I'm in a flare with the Protozoa because the last year I didn't stick to my diet close enough and the stress I've been under. Trying to induce a herx and die off. Have to get worse before I get better.

  3. Who Me?

    Who Me? Well-Known Member

    About 3 weeks ago my ankles on the peroneal side started to burn, bad. I dont do much so weird.

    I iced and kept them immobulized as much as I could and walked around with ice packs strapped to them. Walking was misery

    I made an appointment to get a referral to an ortho. But all the time I kept thinking nerves.

    Then just like that it got about 70% better. I still have some intermittent burning but nothing like before.

    Oh and what was odd was when it was the worst my knees and ulnar nerve on my left hand burned.

    I started inositol/choline which is supposed to help neuropathy. Not sure if they are linked. (They're huge btw)
  4. TigerLilea

    TigerLilea Well-Known Member

    I occasionally get burning pain on to top of my right foot. It has been pretty good lately so I don't know if this was just a short term thing or possibly it will come back at some point in the future.
  5. Who Me?

    Who Me? Well-Known Member

    I just walked outside for less than 5 minutes and my ankles are burning. In a different spot than it originally started.
  6. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I notice that stress or exercise are the chief contributors. Too much exercise and it's really bad.........that's when I notice it the most.
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  7. Who Me?

    Who Me? Well-Known Member

    Yeah we long as I don't walk I'm good! Lol.
  8. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

  9. Who Me?

    Who Me? Well-Known Member

  10. Paw

    Paw Well-Known Member

    Yes, and I do have small-fiber neuropathy. Burning is one of my worst manifestations. When it's bad is when I'm most curled-up as if I have the flu (combined with extreme fatigue, migraine, and myalgias). Sometimes I've wondered if males are more prone to burning, since males are supposedly less likely to manifest FM trigger points (do some males experience burning instead?).

    I describe it not so much as on the surface of the skin, but as if I have a bad sunburn about a half-inch below the surface -- all over my body. It is not necessarily connected to exercise, but it's guaranteed after especially poor sleep.

    It worsens through the day -- seemingly an extension of ordinary neuropathic symptoms (numbness, tingling, bottom-of-the-feet burning etc). As it progresses, it gains energy, so that instead of a static sunburn feeling, it's more like molten lava flowing under my skin. Then, at it's worst, it becomes "electrical."

    Duloxetine, for me, targets it directly (but helps nothing else). I've been taking Cymbalta for about 3/4 of a year (90mg), and it helps tremendously, but in recent months the burning has been returning (seemingly connected to an experiment with Nuvigil, which my body rejected). So, since then, I've been experimenting with tapering off the duloxetine and replacing it with tianeptine, NALT, octopamine, picamilon -- trying to pinpoint the source of the burning.

    My suspicion is that norepinephrine problems are at the root of the burning (not so much serotonin) -- so if i can move away from such a sweeping SNRI as duloxetine and target the problem more specifically I might, hopefully, also find ways to regain energy. (It's possible the duloxetine makes me sleepier during the day.) But I'm still in the early stages of experimentation.

    Interesting to see a possible connection with lactic acid buildup. I have excess uric acid (and gout), as well as severe restless legs -- which all feels somehow connected.
  11. Issie

    Issie Well-Known Member

    My dad had all that along with apnea. Do you have that too? My dad also had alkolosing spondylitis. Do you have a lot of back pain and rigidity? His neuropathy Numbness went up to his thighs and past his elbows. He would have shooting electrical pains in his feet that he could almost not bear. He took Gabapention and tried almost all the SSRIs and SNRIs. None of those seemed to make much difference. He was also on Tramadol. Since there were autoimmune issues with him and also me, I wonder if that's the connection. His dad also had it. I'm more like my dad.

    When it got so bad for him was when he was intentionally made low in testosterone and made him estrogen dominant because of prostate cancer. Those shots are horrid for that. He wished he had Done surgery to start with. That makes you wonder if it's hormone related.

    Mine isn't as bad as my dads was.

  12. Paw

    Paw Well-Known Member

    Wow, Issie, your dad had a rough road. I'd never heard of reducing testosterone for such purposes. Not that I'm in the same boat, but, in these earlier stages of my own adventure, it often feels like I get bad reactions to everything and anything that boosts energy and vitality. Weird.

    Yes, I have mild/moderate apnea, but three months on CPAP (with good toleration) did nothing for my daytime fatigue, so the sleep doctor said the CPAP was optional (I opted to discontinue it).

    I don't think I have ankylosing spondylitis, but I've been practicing yoga and tai chi for more than 30 years, so I sometimes think my current moderate levels of arthritis, myalgias, etc would be much worse if I weren't in the habit of stretching out all those joints and muscles daily. (Like many others here, I often have challenges getting doctors to take my debilitation seriously, since I present pretty well.)

    My neurologist believes everything is rooted in some unknown autoimmune disorder, but I think he's just speculating. I see a new rheumatologist tomorrow, so maybe she'll investigate other possibilities and consider other treatments.
  13. Issie

    Issie Well-Known Member

    I have mild apnea too. I have started back using my machine and it does make a difference. I didn't think it did until I stopped using it for awhile.

    I'm sure stretching has helped you.

    My personal belief is what we are dealing with is autoimmune and inflammation. My addressing things from that angle is helping me. Hope the new doc will look closer into that for you.

    I hear you on looking well and no one realizing how bad you feel. I used to wish for purple polka dots. Instead I got white ones (I have vitiligo). Now I tell people to be careful what you wish for. LOL

  14. Paw

    Paw Well-Known Member

    Ha. (Still, sorry about your vitiligo.)

    Another irony I'm sure others here are familiar with: after learning to manage symptoms, you can prepare yourself for certain stressors -- like doctor appointments. So, after scheduling an appointment around my sleep schedule, then loading up on caffeine and other supplements, I might arrive good and wired, friendly and chatty. And then I look back and think I must have appeared crazy complaining about near-narcoleptic fatigue at 90 miles per hour. (Of course, afterward, I go home and spend the next several hours on the couch, paying the price!)
  15. Issie

    Issie Well-Known Member

    So can relate!!!!!! :)
  16. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    Interesting. I know Cheney was interested in uric acid - although I can't remember what role he felt it played...That symptom is not to my knowledge, in standard ME/CFS symptom questionnaires...which kind of blows my mind...
  17. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    That's exactly what I experience - anything that boosts my energy sets me up for a fall - I usually get fluey and my sensitivities, bizarrely enough, go up. It's so WEIRD.
    On the positive side it does give me the opportunity to add another smiley to my repertoire - :jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad::jimlad:
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  18. Steve

    Steve Active Member

    Burning is a major problem for me from my calves down to my toes. I soak my feet, paradoxically, in burning hot water to fool the nerves, works a bit. It is pain that goes through the whole limb, not surface pain. Sometimes it feels like burning, others freezing, others like thawing out after near frostbite. One of my longstanding bad FM SX, was 20% better on 20 mg Cymbalta but I had breathing problems that seemed like a textbook panic attack five days into the med so sayonara Cymbalta.
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  19. Kay Webster

    Kay Webster Member

    I'm new to this site. I have ME/CFS and Ankylosing Spondilitis. I have burning tongue. Anyone else?
  20. Upgrayedd

    Upgrayedd Active Member

    This is an older thread, but I just searched for burning feet and it came up.
    My CFS/ME journey began with a tumor (schwannoma) on a nerve in my left thigh. After surgery, I was left with peripheral damage along the nerve path, which goes from my inner thigh, crosses my knee and goes down my shin. I sometimes get burning pain from the damage, but it's usually transient and not too severe.

    However, for the past several months I developed this new burning sensation on the backs of my heels and feet. At first, it thought I pulled muscle/tendon/ligament, but it's in both feet and it gets worse and more irritated throughout the day.

    I went to a podiatrist a few times, who found nothing wrong and just told me to take 2 Aleve twice a day for 2-3 weeks. I don't really like taking that much nsaids, and they didn't do anything to help. I've been wearing some heel cups that help a bit, but the burning and irritation is still there; I'm pretty sure now that it's nerve related.