Fluge & Mella's pre-trial study highlights life-changing potential of rituximab
Sasha gives the background and Simon gives the interpretation of the latest study from Haukeland, published today...
Discuss the article on the Forums.

Anyone else with neuro stuff like burning pain and tingling?

Discussion in 'Peripheral Neuropathy' started by tiredlight, Feb 6, 2012.

  1. tiredlight


    When i read about cfs i rarely read about other neurological symptoms than headache, memory problems and brain fog. I do have tons of other neuro symptoms like tingling, twitching, burning pain, heavy arms and legs, ataxia and would like to know if this is common with cfs? These symptoms dont seem to be classical cfs symptoms. Anyone else with this stuff?
  2. lnester7

    lnester7 Seven

    My neuro Symp

    I have so much I don't even question what is going on anymore. I drop things, favor left hand every now an then even though I am right handed, My burning is in the spine. Needle like feeling specially on feet.

    Depth perception issues. Forget words, Memory, Stabs headeaches, I never get headeaches except this wiered stabbing like, last 1 to 3 seconds.

    Ohhh And this is the best one. I feel pressure like in the head, then I feel Heart burn like when u feel in your stomach but in the head, I feel like an acid have spilled and burn me between brain and skin. That one is very unconfortable.

    I get a Head noise or Buzz specially while laying down or when dizzy (not in the ears) is like noise int he brain.

  3. Scarlett


    Ohhhhh yes, lots and lots. As far as I'm concerned, ME is without doubt a neurological condition, at least on some level. Autonomic dysfunction clearly forms the basis of my condition, and it was explored by three different neurologists when I first got ill because it was so obviously central nervous system but with no obvious lesions on the brain.

    Pressure in head, aching jaw, feeling like my right eye is numb and swollen. "water arm" - a cold wet watery sensation running down my right arm into my palm. Weird tiny vibrations in my muscles, tingling, itching (I get a sensation like there's a tiny spider on the end of my nose). My legs often have a pain in them, in the bone, that feels like they're cold to the bone but they're not cold, it's a dull nagging ache. I get a stabbing pain through my spine into my front when I've been upright too long, feels like I'm on a skewer.

    I forget words, and my word association's all over the place - this morning I was trying to ask my husband why the ash tray was in the middle of the floor, and I kept saying "Why's the egg cup in the floor?"

    My breathing patterns change, so sometimes my breaths are very far apart, and sometimes shallow and panting. I can't tell if my bath is hot or cold to the touch. I get twitches and ticks. I lose balance sometimes in the dark. I lose track of where my limbs are if I can't see them. I have problems with slow heart rate and low blood pressure, sleep patterns all over the place, sight issues depending on the day (fuzzy sight, or lazy eyes), temperature control problems (not being able to get warm, or feeling too hot even when it's cold), very dry nose, eyes and mouth or streaming eyes and excessive saliva. Palpatations, bowl and digestion trouble, loss of concentration, extreme muscle weakness, shaking, and post exertional malaise. Fight or flight response sometimes kicks in for hours, or days, meaning every time the phone rings I go into shock! V embarrassing! :)

    It's so changeable, the neurological pathways must be constantly firing into the wrong places. For a month or more I could be housebound, and then one day, I'll just wake up and feel OK and go for a walk, and my muscles work! It's the weirdest thing, and it fascinates me. You can never fully appreciate what the nervous system does until it goes wrong, and then it just seems amazing that in most people it works without them even noticing it! Thankfully I very rarely get headaches, and I'm emotionally a pretty cheerful person, so you couldn't blame it on depression, it's just my wiring's wrong!

    It appears that in the UK there seems to be a theory that ME has neurological symptoms, whereas other conditions that come under the CFS label may not display that way.
  4. anciendaze

    anciendaze Senior Member

    Mild ataxia is often part of this disease. However, if this is more serious the diagnosis is more likely to be MS, atypical if they can't find sclera on a scan. Missing the right word is a form of aphasia, again very common with CFS. Some of the other sensations would be called parethesias. These are common in both ME/CFS and MS.

    The symptom above which I found most deserving of a followup is the sharp stabbing pain in the head lasting seconds. This resembles the pain of optic neuritis. One person I know experienced that most commonly in the shower. If what you have is optic neuritis, the diagnosis is often suspected MS.

    Note: I am not a medical doctor.
  5. hurtingallthetimet

    hurtingallthetimet Senior Member

    lots of illness lots of thnigs since becoming ill its like a million other things come along with it...i hate the burning and tingling numbness alot of that in shoulders and down legs...but so many issues now...siatica nerver problems...migranes...the list goes on and on and on..hate it
  6. tiredlight


    So multiple neuro symptoms dont seem to be so uncommon.
    These days my worst is that i have trouble moving my arms (too heavy) and face muscles: Even simply talking is hard work sometimes. Strangely at night my arms and face muscles even seem impossible to move. Dont know why it gets worse when i lie down.
  7. justy

    justy Senior Member

    yes lots of strange symptoms here too - including the short stabbing pains in the head, also severe eye pain and jaw /face pain. Muscle jerks and spasms (if very tired my whole body jerks ie an arm or leg flings out etc) Cognitive problems also, although a bit better now i get dyslexic quickly when typing and have word retrieval problems- my newest one being that whatever my last converstaion or thought was about becomes part of my next sentence e.g my son said could he make some toast i said yes, then my husband called down to me what are you doing? and i said putting some bread on the fire (i meant logs!) this is happening all the time these days - but i mainly laugh it off! Ive also had some severe eye blurring late at night to the point where i almost cant see out of my eye for a while.
    All the best, Justy.
  8. Mark

    Mark Acting CEO

    Sofa, UK
    It sounds like you have been reading about "CFS" rather than "ME" - historically, "ME" has a better claim to be a "classical" definition. I suppose it comes down to which definition is informing what you are reading. Under the Canadian Consensus Definition, for example, at least two neurological symptoms are required for a diagnosis, and ataxia and muscle weakness are common:

    Whereas, at the other end of the spectrum of definitions (of "CFS" or "CFS/ME" or "ME/CFS" or "ME"), UK psychiatric researchers of the 'Wessely School' use the "Oxford Criteria", which they made up themselves, for their research, and that definition doesn't include neurological symptoms, and indeed these researchers appear to routinely exclude patients with neurological symptoms from their studies while still claiming to be studying "CFS/ME".

    So in short, neurological symptoms such as you describe are common in "ME/CFS", and indeed they are an essential part of all good definitions of the disease (which is why it's called a "neuroendocrineimmune disease" or "NEID"). For my part, I've got the itching, tingling, burning, and (now intermittently) muscle weakness and ataxia, and I think that most of us here have some neurological symptoms (though I don't think we've ever done a poll to confirm that...it would be interesting to check...).
    Enid and ahimsa like this.
  9. Ocean

    Ocean Senior Member

    I have off and on tingling and numbness.
  10. Patrick*

    Patrick* Formerly PWCalvin

    As of two weeks ago, I've come down with new symptom: muscle twitches all over my body, and unexplained pain in my thighs. At first I was sure it was a potassium deficiency, but after maxing out on potassium the last several weeks, I'm not sure any more.
  11. Valentijn

    Valentijn Activity Level: 3

    Amersfoort, Netherlands
    Have you tried magnesium?
  12. Timaca

    Timaca Senior Member

    I have burning, sparking, crawling, zinging nerves all over my body. I have pressures inside my head that come and go (feels like someone is blowing up a balloon in my head and deflating it). I have stabbing sensations in my head (others have mentioned this). I feel disconnected from my body. I feel like I have ataxia at times (I sure as heck would not want to do the backpacking I used to do alongside the edge of cliffs!) I have brain fog (but it has improved with antivirals and antibiotics). I have muscle twitches.

    In short, I have a LOT of neurological issues. In fact I went to 4 neurologists to see if they could figure it out. They could not.

    Best, Timaca
  13. Timaca

    Timaca Senior Member

    tiredlight~ Make sure MS has been ruled out.....
  14. alex3619

    alex3619 Senior Member

    Logan, Queensland, Australia
  15. Sallysblooms

    Sallysblooms P.O.T.S. now SO MUCH BETTER!

    Southern USA
    I was going to mention autonomic neuropathy. There are excellent supplements for it. Healing the nerves is important. Alpha Lipoic Acid and Benfotiamine are great. Antioxidents, no gluten, LOW sugar, gentle exercise to bring oxygen to the nerves.


    My husband has the same symptoms as you. He had been examined by neurologists at Mayo clinic and Cleveland Clinic and they could not offer any diagnosis. Only the immunologist diagnosed CFS. All of his numerous blood tests and MRI have been normal. We are presently seeing a CFS specialist that is running immune system tests and virus tests which have never been done before. Like you, I have not heard many people describing these same symtoms. Were you symptoms gradual? We do not remember any flu like symptoms. He started with a stiff neck and buring pain in his legs and arms that continued to get worse over time.
  17. meadowlark

    meadowlark Senior Member

    Toronto, Canada
    I had a long, slow onset, beginning in 1983. It became full-fledged ME/CFS in 2001. My first symptom was a daily migraine, accompanied by (as you write, tiredlight) "tingling, twitching, burning pain, heavy arms and legs," always (like the migraine) on the left side of my body. I still have this head and limb pain, which some of my doctors think is hemiplegic migraine. And often the burning, heaviness and tingling is the least of it. My legs and hips feel like they are being hacked by axes, drilled by a jackhammer, or roasted on a spit. And on the worst days the pain leaps from the left to the right, starting in the right foot and working its way up through the thigh.

    I don't need an alarm clock ... I wake up early every morning because my left arm and left leg feel as heavy as lead.

    No drug, including demerol and morphine, eliminates this pain for me, though fiorinal dulls it. I have the pain every day ... except when I have a fever or swollen glands. Then it's gone with the wind. Go figure. No one can tell me they aren't connected.

    IIRC, both the Canadian and International Criteria mention "migraine." (I'm certain the Canadian does.) I always assume that "migraine" would include any kind of migraine ... classic, common, cluster, hemiplegic. And just as a person can have only the migraine aura (called the "painless migraine"), you can have the other types of migraine anywhere in your body. They're vascular, after all.
  18. Enid

    Enid Senior Member

    I can't see anything here I've not experienced either (allowing for descriptive terms). Also full Neuro testing ruling out MS and Parkinsons etc. Like meadowlark I'm sure all connected, so was my Neurologist but unable to diagnose except could be ME - they think it's viral. All for the Canadian Consensus and any advice from members here.
  19. PhoenixDown

    PhoenixDown Senior Member

    Okay, so I have:

    1. The general amplification and prolonging of all noxious stimuli to point of being painful compared to levels that were previously not painful (when I was younger), and would not be painful to an ordinary person.
    2. A phenomenon of amplified muscle & joint pain which mimics (or perhaps are) injuries, which when exerted too far induce permanent sensitization which is (or is in effect) a severe physical restriction, and which may be neurological, rheumatic, or a combination of both.

    Number #2 could potentially be part of #1 but we have no way of knowing. It's listed separately primarily because the others don't have anywhere near the same permanence. I guess a good way of explaining how #2 relates to #1 is imagine hearing a bad sound for 30 minutes and having your tinnitus get worse...for a week, a month, or even permanently as a result.

    It can build up rapidly and the rate at which it builds up is sensitised or "worsened and remembered" this is a key point which often goes misunderstood. I'll add that there's a progression of the muscle/joint pain whereby other types of pain are layered on top of normal pain as exertion goes on, eventually adding shooting pain, plus burning pain, plus a damp feeling in the affected area (in that order). Finally the areas which are exerted each have there own sensitisation value, and don't effect the rest of the body.

    I also have numerous neurological & cognitive abnormalities.
  20. Lynne B

    Lynne B Senior Member

    sydney, australia
    Alex, thanks for that reference on small fibre neuropathy. I have the burning feet nearly every night, particularly when I go to bed. If I try to ignore them the heat builds till I get stabbing pains, forcing me out of bed. I've used cold compresses, not wanting to hunt around for a bowl and water in the middle of the night but I think I'll now try your method of soaking my feet. Also I mentioned the small fibre neuropathy to a psychologist who's helping me sort out sleep and anxiety issues and he responded that about 10% of us have this. He's given me the name of a neurologist to see about it. If it wasn't for the fact that I saw another current thread here on sfn yesterday, I'd still be sitting here not knowing the cause. So thanks to all of you for the helpful information on these threads.

    cheers, Lynne

See more popular forum discussions.

Share This Page