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anyone have burning, aching legs?

Discussion in 'Pain and Inflammation' started by LJBluesky, Feb 6, 2013.

  1. LJBluesky

    LJBluesky

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    I have had CFS for over 6 years. My legs, especially lower legs ache and burn like I have run a marathon after only being on my feet for 10 minutes. Its getting worse. Does anyone have this symptom? Any suggestions on what to do about it ? Right now, I just have to pace myself carefully. Thanks.
     
  2. snowathlete

    snowathlete

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    Hi LJBluesky, I get aching in my legs all the time, but worse when i have used them and it aches so bad that i would describe them as painful at times.
    I havent found anything that makes them better other than not using them, and i find elevating them makes them worse, so i try not to do that. pain killers dont work on me, unfortunately, but you could try that?
     
    SOC and Valentijn like this.
  3. Andrew

    Andrew Senior Member

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    My legs ache but it is not as bad as yours. It is only to the level of being annoying. When it gets bad I take a warm bath. During part of my bath I slide down and put my feet up on the opposite wall. This elevates my feet. I keep them up there for about 5 to 10 minutes. I actually don't know if the elevation helps. But the bath does, for awhile. Maybe a few hours.
     
    SOC likes this.
  4. Sparrow

    Sparrow Senior Member

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    Mine ache a ton after activity, and if I keep going with the activity, will get to a point of extreme pain (which I learned before I knew what was wrong with me, or that I should be pacing :)). Unfortunately, I don't know of anything besides less activity to keep them from getting that painful, though. I have found that keeping them straight out when lying down rather than knees bent up or legs raised on anything is less pain-inducing. But I have no idea why.

    I also get some aching overnight, which seems to maybe have something to do with blood pooling, since in that case if I elevate my legs straight up and massage the blood down a little, it helps to give me some temporary relief. It's a slightly different sensation than the other, though. More of an ache and less of a burn.

    I do recall Dr. Bell mentioning that burning in the legs being connected to orthostatic intolerance, and that for one of his patients, super high compression pants stopped it. Maybe very high compression stockings might help?
     
    Valentijn and SOC like this.
  5. Seewell

    Seewell Senior Member

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    I dont get the burning,but i have had the aching legs,really painful,it felt like it was inside my shin bone.
    I dont get outside much so i thought it might be a vitamin D deficiency,tryed cod liver oil with Vit D and that helped alot.
     
  6. taniaaust1

    taniaaust1 Senior Member

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    I used to get burning and aching a lot in my legs. The burning part of it, my own theory based on what scientific studies have shown with lactic acid and us (some of us have up to 300x normal amount being produced)... I think is being caused by far too much lactic acid in the legs. I dont know of anything which helps the burning but maybe something which helped get rid of lactic acid faster would???? (if there is anything which does that?). Take care, lactic acid may be damaging?

    The aching thou.. I find can sometimes be helped by putting legs up and having a hot bath.
     
  7. collegeusername

    collegeusername

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    idk about this lactic acid theory tbh...
     
  8. collegeusername

    collegeusername

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    my symptoms came suddenly and concurrently with a viral attack, and the burning aching legs and pelvis has been one of the symptoms that came at day 1 and is here to stay- hasn't left me for more than 5 minutes. mine ache considerably more after activity, but they never reach pain for the most part- however, my feet do get painful after only one long walk.
     
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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  10. LJBluesky

    LJBluesky

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    Its good to know that people care enough to respond. Thanks everyone for your support-made me feel better. My CFS doc says to exercise my legs and build up endurance. That hasn't worked out for me. Pacing and rest are what helps. Tryed to push through it yesterday and my legs hurt so bad I couldn't get to sleep for a long time. I have read about the lactic acid build up theory but don't know what to do about that.
     
  11. alex3619

    alex3619 Senior Member

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    There is a thread on small fiber neuropathy here, and many related threads. Here is one: http://forums.phoenixrising.me/index.php?threads/small-fiber-neuropathy-in-cfs.6743/

    Lactic acid for a short while is actually good for muscles. Its only a problem if it stays elevated for days, in that case it can cause lactic acidosis and is potentially fatal. Lactic acid is often associated with muscle burning, I don't think its causal. Instead its a result of our body trying to fix things, and it increases oxygen dump to the muscle which can also help. If you want better muscle function you should be aiming to raise lactic acid I suspect, not lower it. Athletes make less lactic acid, but thats because their muscles work better and so need to make less. However elevated lactic acid can be a sign something is wrong.
     
  12. SOC

    SOC Senior Member

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    Muscle aches have been a problem for me since day 1. Cymbalta has helped enough that I don't have muscle aches routinely anymore, but they're still the first symptom I when I get when I crash.

    In the last 10 days or so I'm again having leg muscle aches enough to keep me awake. A new muscle symptom has also cropped up -- if I raise my arms for the least little thing, like combing my hair, it feels like I'm lifting heavy weights right at the limit of my strength. o_O My arms don't ache all the time like the legs do, though.

    The only thing that's particularly different is that I'm doing some very, very, very light laying down abdominal exercises -- no leg or arm involvement. If this is PENE, it's different from previous manifestations. It's not progressing to flu-like symptoms, which my crashes have done in the past, so I don't know if this is a new variant of PENE for me, or something else entirely.

    At the moment I'm just trying to wait it out because I haven't found anything that helps once the Cymbalta isn't taking care of it. ;)
     
    heapsreal likes this.
  13. rlc

    rlc Senior Member

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    Hi LJbluesky, if you have been well tested to rule out other diseases, you could try D Ribose. I’ve been on it for about two months, and I can only describe it as brilliant!

    According to the theory of Dr Myhill and co, the central cause of ME is Mitochodrial failure. The Mitochondria are the energy producing part of every cell in our bodies, they make ATP that gives as energy, when they are not working properly your body switches to anaerobic Metabolism, which causes a rapid buildup of lactic acid which causes the muscle burn and pain. It is all explained in this article
    http://drmyhill.co.uk/wiki/CFS_-_The_Central_Cause:_Mitochondrial_Failure

    As well as D ribose, you also need to take Magnesium, a deficiency in this alone will cause muscle pain, Coq10 and L carnitine and B3, but it has been the D Ribose that has made the most dramatic difference for me. Although Dr Myhill doesn’t mention it in the article, it is very important to get tested for and treat, any Vitamin D deficiency that is found, this is because although the other supplements will help to heal the mitochondria, vitamin D is needed for the body to absorb phosphorus, and you need phosphorus to make ATP, so if you don’t fix any Vitamin D deficiency, you can end up with Mitochondria that work, but the ATP that is produced is defective due to a lack of Phosphorus and you remain sick.

    I’ve been taking 5g of D ribose three times a day, and the other supplements, and a strong multivitamin, plus lots of sun, and the improvement has been great!! Muscle pain has gone!

    Theres more on D ribose here http://www.endfatigue.com/tools-support/D-ribose.html

    And an interesting article on it role in heart function here http://www.lef.org/magazine/mag2007/may2007_cover_ribose_01.htm

    D ribose is supposed to be completely free of side effects, unless you have diabetes, so have a read of the articles and see if you want to give it a go.

    Hope this helps

    All the best

     
    meandthecat likes this.
  14. Starfive

    Starfive

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    Tingling and burning first started in my feet, as in kick the covers off at night. then, about five years ago, the pain and burning became more intolerable and progressively grew to my ankles then my calves with intermittent knee pain that no test could explain. It has grown to be excruciating. 24/7 pain, no relief, no change.
    Cymbalta was given to me to try and I was grateful that it helped relieve the pain about 60 to 70%. My neurologist has not many choices and laments how long it takes for new possible meds to reach the mainstream.

    If anyone can suggest anything to try, please let me know, would be great!! Between the brain fog, fatigue, pem,plus the pain my life is pretty dysfunctional.
    Anyone tried the IVIG?
     
  15. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    yes i have had those leg pains from day one also, almost like shin splints and alot worse at night when trying to sleep. I would say neurontin has been the most effective for me. I have had a sleep study done and even though i had leg pains it wasnt diagnosed as restless leg syndrome, plus i think it seems different to symptoms of rls. Many viruses can hide out in nerves especially the herpes viruses which might be why in me these leg pains get worse if i crash??

    cheers!!!
     
  16. Sparrow

    Sparrow Senior Member

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    Apparently a lot of people find it helpful, and many are able to use it with no noticeable down side. I just wanted to add in that there sometimes are side effects, though. It can trigger hypoglycemia in a minority of people, which creates a feeling of extra weakness, lethargy, etc. a while after taking it. I unfortunately get this response pretty strongly, and have been told that it's one of the more common side effects. :(

    Really glad that it's helped you, though, rlc! It's a good suggestion.
     
  17. Starfive

    Starfive

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    @heaps
    how does the herpes virus hide out? does it mean that the virus gets into all the nerves all over causing the pain??
    I have high levels of antibody titres and would really like to learn more about the enemy viruses that seems to be attacking.
    thanks~
     
  18. heapsreal

    heapsreal iherb 10% discount code OPA989,

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    Im not sure how it gets in but many neurological /nerve type conditions are due to herpes viruses like shingles , bells palsy, meningittis. some autopsy's done on ME people have shown herpes like lesions on spinal cords.
    http://en.wikipedia.org/wiki/List_of_infections_of_the_central_nervous_system
     
    ukxmrv likes this.
  19. beaker

    beaker CFS/ME 1986

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    All I can do for this pain and burning is curl up in bed. when my kitties are kind enough to lay on top of my legs, the pressure helps. Doesn't go away, but that and pain meds puts a dent in it. I'm guessing it has to do with the orthostatic stuff b/c of that.
     
  20. Sparrow

    Sparrow Senior Member

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    No wonder we have so many doctors confused. My cat lying on my legs is one of the things that causes that kind of burning for me. :rolleyes: Sigh.
     
    ukxmrv likes this.

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