Dr. Bateman answers IOM questions from the community: Part 1
Clark Ellis brings us Part 1 of an interview with Dr. Lucinda Bateman, where she answered questions posed by the patient community ...
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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.
     
  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.
     

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