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anyone have burning, aching legs?

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

  1. jann1033

    jann1033 Senior Member

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    They do an xray to see if u have cartilage left. I think they can give you stuff like glucosamine if you do.
    If not you can get cortisone shots into the joint. They helped keep the pain manageable for about a year but that varies. I have to get both knees replaced as the shots aren't helping and it is constantly hurting( like scale of 8 pain and I have a high pain threshold). They can do other stuff, depending on if its bone spurs etc. But step one is go to a good orthopedist
    Its always good to try the tradtional more common remedies before just chalking it up to CFS. Always a chance its something fixable
     
  2. RYO

    RYO Senior Member

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    I am on my 3rd year of CFS/ME. The severe burning pain in my legs at night are horrible. I am glad to hear pains may eventually get better. The only way I can still work part time is to take tramadol. I couldn't tolerate gabapentin or cymbalta. Any muscle I use can twitch all night. Deep abdominal and back muscle fasciculations feel weird. I don't have B12 deficiency or magnesium deficiency and supplements like vitamin D & D Ribose never worked for me. Also tried acupuncture and deep tissue massage. I am hoping one of my specialists will let me try SCIG.

    Anyone with any other suggestions?
     
  3. GypsyGirl

    GypsyGirl

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    @rd123 & @RYO

    I'd been looking for any info specifically about "burning, aching" legs, and this post is the only thing that even remotely resembled what I've been experiencing, and it sounds like yours.

    I finally realized that the pain is what I felt when I overdid it running cross country in high school - a mixture of shin/bone pain & muscle pain (that aches & burns). Like @rd123 - my legs are swollen, the veins more visible, and the muscles by the shin extremely taut. Sometimes the muscles are so tight they "jump". As for the weight change, it might be useful to check your cortisol levels, and have a thyroid panel done. About a month into getting sick, I started losing weight (atypical for me), even as I ate more junk for energy. My cortisol was flagged high (but not dangerously high, so the docs paid no attention). A year and a half later, my cortisol levels are very low, and I have bouts of thyroiditis. (typical pattern, to run high trying to compensate before dropping, adrenals affected first, then the thyroid)

    Like most people here, I've been tested for "everything" and have tried "everything". Here's what seems to make differences for me:

    I have my vitamin B12 & D levels checked about quarterly, when I'm very low, the aching is worse. Normal levels - aching is slightly less worse. (Ha!) @rd123 - if you haven't had the genetic test done for methylation, a decent way to find out if you have methylation issues is by getting a B12 shot. Most people feel good after a B12 shot. When healthy, I always felt woozy/tired after it. After getting ME/CFS, I got a routine B12 shot twice more, and each time, they caused nausea, dizziness, mild blackouts, and generally feeling I'd triple dosed Benadryl. (Routine B12 shots use unmethylated B12.) I had the same experience after my first 5 hour energy drink (while healthy). Everyone was energetic; I needed to nap. ;)

    @rd123 Have you been diagnosed with orthostatic intolerance or hypermobility syndrome? I ask because I have both POTS (postural orthostatic tachycardia syndrome) and Ehler Danlos/Hypermobility, so when I stand, the blood drops to my legs. If I'm going to be standing more than ten minutes, I wear compression socks, 8-15mmhg strength. You can even get toeless ones (for flip flops). I tried thigh highs (took too much energy to put on) and higher compression (aggravated the soreness) socks, and these do the trick. I especially like this brand: http://www.amazon.com/Celeste-Stein...ef=sr_1_5?s=hpc&ie=UTF8&qid=1414770597&sr=1-5
    They have great silly patterns that don't look like "grandma stockings". Anyway. The compression socks cut the pain by 1/4-1/2, which is amazing.

    If my legs are extra jumpy, I'll take magnesium (in the form of "Natural Calm"). The raspberry lemonade is tasty. Magnesium can cause loose stools (great if you're constipated), but if you are already dealing with that, I concur with others on the board - epsom salt baths do help the pain/jumpiness, and you can absorb the magnesium through your skin.

    I do take a low dose of Norco for the worst pain - generally half of a 10/325mg pill.

    At night, I take a cocktail of baclofen, tizanadine, and clonazepam. The first two are muscle relaxants (often used in M.E.), and the latter is a long acting benzo. I've been able to stay on the same low dose for 2 years - they work better together. They help with the pain (and sleep). @RYO ...I've tried Lyrica (similar to gabapentin), and multiple antidepressants-for-pain, and neither worked. (I HATED Lyrica.) I had been dx-ed with ADD years ago, and took generic adderall. Now, I realize my pain levels are better on the days I take adderall. Paradoxically, it also raises my low blood pressure and lowers my heart rate - so it's helping control POTS symptoms as well, which may be helping with pain.

    I once had the bright idea (duh) to take my temperature when the pain was especially bad, and about half the time, I'm running a fever of about 99F. Those times are when towel wrapped ice packs help. There's also a topical gel called "Voltaren", which is an NSAID - useful in small doses for when it's clearly inflammation.

    This is now a giant post, so I will stop. It's just, I feel your pain, guys, and I'm throwing out anything that's helped me, in hopes that it will lead somewhere for you.

    If I was unclear/you need more info, let me know, & feel free to PM.
     
    RYO likes this.
  4. RYO

    RYO Senior Member

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    My cosyntropin stim test was normal. My thyroid, B12, and vitamin D levels always well within normal range.

    Fortunately, my autonomic dysfunction got better my initial severe viral illness.

    Thank you for your post.
     
  5. Rlman

    Rlman Senior Member

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    or over 4 years I often feel aching in thighs, not lower legs. Whether standing or even sitting they feel sore, aching. It does not seem to be the muscles. A couple of times I took a hot bath and the thighs hurt even more, was painful. Don't know the cause.
     
  6. RYO

    RYO Senior Member

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    How did your CFS/ME start? Abrupt viral illness? How long have you been ill? Does your leg weakness limit your physical abilities?
     
  7. Rlman

    Rlman Senior Member

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    I've been ill since Dec 2010. Yes it all started with what looks like abrupt viral illness though virus never identified. I am very weak, basically bedroom bound, can only walk a few steps, can only stand for a few seconds. Also had brain injury probably from the infection and have a lot of other symptoms. Hemoglobin is at high end of range or slightly over.
     
  8. RYO

    RYO Senior Member

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    I am sorry to hear about severity of your illness. My suspicion is that patients with prominent muscle symptoms are affected by an Enterovirus. Have you tried using Dr. Chia's Equilabrant?
     
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  9. RYO

    RYO Senior Member

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    I have often wondered whether muscle symptoms represent a subclinical myopathy or they have underlying neurologic basis. So far, I have have had 2 normal EMGs and quadricep muscle biopsy.

    There is an interesting phenomenon that occurs in patient with multiple sclerosis. It is called Uhthoff phenomenon. It is a temporary worsening of any MS symptom in the presence of elevations in body temperature. It reflects reduced neuronal conductance at higher temperatures.
     
  10. GypsyGirl

    GypsyGirl

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    I've noticed burning is often worse in high heat and/or high humidity. (in addition to exercise-induced) For me, I think the intensification might be related to POTS - just a guess, since this is also when POTS is worse.
     
  11. Rlman

    Rlman Senior Member

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    no i have not tried equilibriant, thanks for the suggestion!
     
  12. fran12

    fran12

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    I'm lying here on the sofa because after doing some physical work my legs are aching so badly. In despair I came here to see what people are saying. I'm new,so I'm still finding my way around the website and came across this thread. For me,every morning when I wake up,I can have a couple minutes,then like a switch going on,my legs start to ache badly. I immediately have to get up,to try and alleviate the pain.

    Now today,it's happening just as badly in the middle of the day. I do get achy legs a lot,but this kind of ache is different. It's like rivulets of aching moving in my legs,or like my blood is bubbling or fizzing. Over time it has also moved to my lower stomach,which then feels tightened and twisted. I'm so tired of this, as I'm sure everyone else is. I'm so grateful that people share their experiences, and sad for the fact that we have these experiences to share. I read the replies here and am concerned about the vit D element. I have been tested and am below half of the normal reading,but can't take vit D supplements as they cause such a bad G. I. reaction and make me ill for days. sigh. Does anyone else have a vit D supplementation problem?
     
    Last edited by a moderator: Oct 20, 2015
  13. RYO

    RYO Senior Member

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    I also feel ill after taking vitamin D3 but usually only after taking large doses. Acupuncture helped with legs always feeling cold but aching pain and weakness never go away. Unexplained muscle fasciculations as well. My vitamin D levels initially low but now well within normal range. Vitamin D replacement never made a big difference for me. I try to eat beets or drink beet juice daily. Blueberry and strawberry smoothie helps with brain fog.
    @fran12
     
  14. Valentijn

    Valentijn Activity Level: 3

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    Do your legs hurt less if you've been using them less over the prior 48 hours?
     
  15. fran12

    fran12

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    My legs ache to some degree most of the time. This particular pain is different. It is as if every nerve end is lit up,or as if my blood is fizzing or bubbling,with I guess,a deep throb. The strange thing is that it's usually on waking,after a moment or two of feeling ok,it's as if a switch goes on and my legs are flooded with this pain. Lying down doesn't help. I usually have to get out of bed quite quickly to help alleviate it. Then it's the normal,generalized ache. I can't stand around for long,I have to move,but that is exhausting! When I posted my original comment,the particular pain had kicked in during the afternoon, and that was after I had done some physical work. I wonder if it could be lack of Mitochondrial energy, blocked atp cells, because,my goodness, I did have a cup of coffee with some sugar in it!!
    But that wouldn't account for morning pain. A mystery as usual.
     
  16. Stretched

    Stretched Senior Member

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    Oops, 'sorry if I misinterpreted to whom the question was addressed. I didn't mean to get in the middle of
    your dialogue.:bang-head:

    Maybe no foul, no harm. I know 'Val' is well versed and perhaps has thoughts on both... .
     
  17. fran12

    fran12

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    No problem. It was probably me posting wrong. I'm still working out the website! Thanks.
     
  18. Research 1st

    Research 1st Severe ME, Severe POTS

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    In myself some positive blood tests, as a severe chronic immune suppressed subset, come out consistently like this:

    Activated NK Cells and NK Function (Opposite of Lyme).
    Very high levels of Cytokines and Chemokines inc INF-gamma. (Opposite of the Lipkin/Hornig CFS patients with proposed 'psychomotor' depression).
    Elevated LDH (Cell Damage) - Opposite of ME/CFS diagnostic criteria.
    Very high Oxidative stress at rest - Exercise is metabolically impossible, so GET is harmful biologically.

    The problem with this, is other subsets won't have what I have. So what causes burning aching legs in some sufferers won't be the cause in others.

    Also factor in chronic infections (Lyme has around 16 co-infections!), Dysautonomia (also associated to pain),
    and Neuropathies, including sensory neuropathies (can cause burning) and the diagnostic protocol to track
    something down in ME CFS, seemingly as simple as burning aching legs the OP reports, is fraught with complex,
    expensive time consuming riddles.
     
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