Burning Pain - Does Anyone Else Experience That?

[Merida]

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

Kay,
Yes, I have the burning tongue. I have very reduced saliva, but observe improved saliva and less burning tongue with certain neck positions. I have not officially been dx with AS, but have a big sacral issue. Very unstable after an injury. I appreciate that the sacrum affects the neck - check out sacro-occipital literature.

 

[Merida]

I had terrible burning from butt to feet for several years following a pelvis/ sacrum injury. Therapy directed at this area may help. A few physical therapists are knowledgeable, sometimes massage therapists are good. I spent 2 years in a pool/ 3 days a week. No swimming, just walking forward, backward, sideways,etc.

 

[ShyestofFlies]

I have burning pain in my feet which I assumed is undiagnosed PN. None of my doctors seem to care... No tests or anything. The blankets touch my feet sometimes and it's excruciatingly painful. Not always. When it first happened I thought I was just wearing shoes that were too small! Well it's 4-5 pairs later and I still get it, plus I'm barefoot at least 85% of my time.

I also get burning reactions on my skin sometimes. Particularly when I'm having ptsd symptoms or bad anxiety. I literally feel burning. P

 

[Cort]

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.

How interesting Paw. Thanks for sharing that. I wonder about uric acid - Dr. Cheney mentioned that in the past - and my Dad has had gout - and I believe he may have RLS.

I definitely have to get an SFN test done...

 

[Cort]

I have burning pain in my feet which I assumed is undiagnosed PN. None of my doctors seem to care... No tests or anything. The blankets touch my feet sometimes and it's excruciatingly painful. Not always. When it first happened I thought I was just wearing shoes that were too small! Well it's 4-5 pairs later and I still get it, plus I'm barefoot at least 85% of my time.

I also get burning reactions on my skin sometimes. Particularly when I'm having ptsd symptoms or bad anxiety. I literally feel burning. P

I notice that stress brings it on as well as exercise. I also often wake up with it and it can get better during the day...but mine is mostly in my upper body and I really notice it in my arms....Thankfully it's not the allodynia type of burning that you get. Have you been diagnosed with allodynia?

 

[Cort]

@Cort
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.

I guess it could not be due to plantar fascitis - since your podiatrist has checked that out. Since it's in your feet I wonder if its blood circulation related.

 

[ShyestofFlies]

I notice that stress brings it on as well as exercise. I also often wake up with it and it can get better during the day...but mine is mostly in my upper body and I really notice it in my arms....Thankfully it's not the allodynia type of burning that you get. Have you been diagnosed with allodynia?

I have never been diagnosed with allodynia, just regarded it as a symptom of my fibro, the doctors just like to blame everything on "it's your fibro, nothing we can do"... No explanations or extrapolations to break down specific symptoms. I figured out my hyperalgesia and allodynia divide on my own and for some reason the docs don't bat an eye when I describe them as such.

I had some nerve type burning in my hands now that I recall, it was after my bone pain and arthralgia were treated with plaquenil (connective tissue disease). It tends to come and go in months long spurts but goes away on it's own. I don't remember how connected to exercise this symptom was, I know for a fact my reynaud's appears after exercise and takes hours to calm. That comes with a pain, and almost allergic reaction- I turn pinkish red and get itchy in my hands, feet, ears, nose, and very oddly my thighs.

Nasty stuff nerve pain, though if I had to choose I'd go with no pain

 

[ninibmr]

I get deep muscle pain in my back/shoulders especially at work when on the computer too long. Went to see a rhuematologist last week who tested me for all the "normal" things and found nothing. Now she doesn't think I need to come back. Geez, doctors still don't believe in fibromyalgia. Has anyone had the new immune response tests (IL-6, IL-8, MIP-1 ALPHA and MIP-1 BETA), and did these tests help with diagnosis/treatment?

 

[Seven]

@Cort I have really bad burning in brain like I am burning alive going to jump off the window burning it is so bad. I take (ALC 500mg w ALA200mg) all comes in one pill and it takes it away. I tested for neuropathy (Another cause) and I was negative.

The burning when going up the stairs or using a muscle while doing something (the muscle one) is latic acid, once is there massage and epson baths, Mine has gone away a lot since using L-Glutamine ( this was by chance, I am using it for tummy but helps body pain like nothing else ).

 

[Tony L]

I have really bad burning in brain like I am burning alive

Yes, only once so far. Last Friday had a heated confrontation with my adult son (who has Aspergers), after a week in which he had either verbally abused me or ignored me. Knew I should have walked away but I'd had enough. After 20 min or so my brain started to burn so I walked away. The burning continued for about an hour, then gradually calmed. A frightening experience and not one I want to repeat!

 

[Seven]

The burning continued for about an hour, then gradually calmed.

Be careful, the issue is mine got so bad that all logic went through the window, you know how burning people jump of windows out of desperation, I had that feeling (I have never being suicidal, is like a I am burning drop in the floor type of reflex, like instinct mode no thought into it whatsoever) only a person that is burning alive can understand the all logic will shout down and all you care is to stop burning feeling mode.

So ice helps and ACL+ALA takes it away for me. Good luck!

 

[Cort]

@Cort I have really bad burning in brain like I am burning alive going to jump off the window burning it is so bad. I take (ALC 500mg w ALA200mg) all comes in one pill and it takes it away. I tested for neuropathy (Another cause) and I was negative.

The burning when going up the stairs or using a muscle while doing something (the muscle one) is latic acid, once is there massage and epson baths, Mine has gone away a lot since using L-Glutamine ( this was by chance, I am using it for tummy but helps body pain like nothing else ).

Thanks, I bookmarked this for future reference...

 

[Rosie26]

Be careful, the issue is mine got so bad that all logic went through the window, you know how burning people jump of windows out of desperation, I had that feeling (I have never being suicidal, is like a I am burning drop in the floor type of reflex, like instinct mode no thought into it whatsoever) only a person that is burning alive can understand the all logic will shout down and all you care is to stop burning feeling mode.

So ice helps and ACL+ALA takes it away for me. Good luck!

I have it in my chest and the skin on my back. Is this burning an 'inappropriate stress response' do you think by the autonomic nervous system? I'm trying to figure it out. Thanks for tip about what helped you.

 

[Seven]

and the skin on my back

Oh MY I forgot the spine one!!! I get it (used to) in the sides of the spine too!! I think it is autonomic symptoms because where I went to the clinic they test to make sure you do not have nerve damage. Weather is the OI per say or a known comorbid I don't know. But for sure a lot of OI plp gets it.

 

[Wayne]

Hi @Cort, Hi Everybody,

I've had burning pain sensations on my skin for many years, mostly on my torso, but in other places as well. They would usually last 3-4 days or so, and then gradually dissipate. I hadn't had any episodes for a while until about a month ago. I then had an episode that gave me some insights as to what has been causing it all these years. In short, these episodes turned out to be shingles outbreaks. Here's my story.
-
About a month ago, one of my typical pain sensations began after not having experienced it for probably over a year. Unfortunately, it hung on much longer than normal, and even began to spread to a wider a area than normal. After about a week, I experienced my first ever shingles outbreak in the area where the pain started.

As I began to learn what I could to treat this very painful (and itchy) condition, I discovered shingles outbreaks don't always break through to the surface of the skin, but can cause pain and inflammation just below the skin surface. It was then I became 90% convinced that the surface skin pain I'd experienced for years was in fact shingles outbreaks.

So what had precipitated this new outbreak? In short, the flushing effect from niacin. I had started supplementing with niacin (about 250-500 mg/day) just before the painful sensations began to emerge. While supplementing with it, I was reading a book entitled, "Niacin, The Real Story" (very enlightening book BTW, especially the documentation on its use for treating shizophrenia (with about an 80% cure rate), and MANY other conditions.

As I was struggling to treat my shingles, I read in this book that niacin (paradoxically) is very helpful for some people with psoriasis (and many other skin conditions), and greatly exacerbated psoriasis in others.

It was my aha moment, when I became convinced my shingles outbreak--followed by my treatments being minimally effective--was the result of niacin exacerbating my pain, and extending the duration of the outbreak. -- I now think it's more accurate to say that it was the "flushing effect" from the niacin that was the problem, not the niacin itself.

As soon as I stopped the niacin, the pain immediately began to decrease significantly. After the skin lesions had healed up about 90%, and were fairly unnoticeable, I decided to do an experiment, and take just a small 100 mg dose of niacin, and see what happened. Within hours, the pain and itch were getting progressively worse. (Me and my experiments! )

The lingering question I have is whether the niacin initiated the burning pain to begin with. Whether or not that's the case, I feel quite certain it transformed the surface skin pain into a full-fledged outbreak of shingles--an experience I hope never to repeat. I should mention while I'm at it, that one of the favorite natural therapies people with shingles use is apple cider vinegar. For me it was disastrous, and only exacerbated the pain.

So, another example for me of how ME/CFS affects my body. I believe my dysfunctional immune system allows for my surface and sub-surface shingles outbreaks, and my neurological sensitivity made my use of niacin and apple cider vinegar untenable. It would make sense to me that other pwME/CFS could be facing a similar situation.

BTW, the niacin I was supplementing was actually very helpful in a number of ways, especially in the way it acted as sort of a natural benzodiazapine. Its associated calming effect helped me relax and sleep better, and seemed to take an "edge" off during my day. I'm currently substituting the niacin with niacinimide, which doesn't have the "flushing effect" of niacin. So far, it doesn't seem to have the same degree of calming, though I haven't yet experimented with higher doses.

So, there's my story, Hope it wasn't tooooooo long.

Best to All, Wayne

 

[Mary Hamilton]

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?

I get this all the time but I haven't found anything to help it. I have ME and Fibromyalgia.

 

[mshvan]

I came across this thread just now.

I haven't seen anything that someone says helped. I have the burning pain, much like others have described.

 

[Merida]

I came across this thread just now.

I haven't seen anything that someone says helped. I have the burning pain, much like others have described.

Yes, this burning pain is awful. Mine went away with a combo of drugs ( Neurontin, Wellbutrin, Oxcodone) and gentle pool work. A person in my support group had terrible burning pain all over and a SSRI helped her. Hope you get some relief. Don't give up !.

 

[Kuapao]

I am new to the forum but had been lurking for a while. Anyway, here's my experience:

Worse burning pain started on month 11 of my current 12 months. I had burning feet since month 9. On month 11, it also appeared on my back, then on bad days, spread to buttocks, shoulders, neck and arms. Feels like my skin was being burned or scalded. I thought it was a reaction to a big batch of new supplements I decided to try when I was desperate for the worseni g muscle aches and malaise to end, or due to the prescription meds I was taking: atenolol, amlodipine, rosuvastatin. I stopped the new supplements right away, and tried gabapentin (didn't work, tried a couple different times then gave up using it) and then, tried cymbalta which seemed to lower the severity but had serious side effects for me: muscle twitching, sleep starts and bizarre dreams bordering on nightmares. I also tapered then stopped the other prescription meds so that I am now only taking vit D3, mutivits and antihistamine (loratadine, then now testing with benadryl to see if it helps with deep sleep duration) daily.

The frequency and severity continued to abate, since weaning off so many drugs/supps, so now I am doubting cymbalta was actually effective. I feel the burning still and even with mental exertion alone or stress, but it is tolerable with a "Mongo" sized ice pack and brain spotting technique to which I recently was introduced. Muscle aches also seem to slowly abating, same as burning but I am afraid to test with more exertion for fear of relapsing and also because I don't yet know my actual anaerobic threshold. Oh, I am on leave from work, so eliminating the stress of my hectic job might have also contributed.

I am hoping that my current 10 day streak of improving symptoms is not a fluke.