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anyone have burning, aching legs?

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

  1. Junto

    Junto

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    I tend to have aching and weekness all over 50% of the time no matter what I'm doing. If I'm standing or walking, my calves and thighs burn out very quickly. It's the same feeling as getting lactic acid build up when lifting weights. My shoulder muscles burns out and feels week when I pour coffee or life my lunch bag etc. It's pretty pathetic. I used to maintain the philosophy that this meant that my muscles needed to rest. I gave up on that theory after a while and started lifting weights and targeted the exact muscles that were ailing me. This was painful but highly beneficial in a short period of time. This may not work for all CFS/Fibro sufferers as some are too sick to exercise.
  2. Valentijn

    Valentijn Activity Level: 3

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    If I try to push past the pain or burning I get muscle twitches, muscle cramps, and/or muscles completely stop working. And then very ill from PEM for at least a few days.
    Aileen and beaker like this.
  3. Sparrow

    Sparrow Senior Member

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    I have a similar response. I didn't have a diagnosis for a long time, so kept trying to push through and keep going when I got to that wall. I just got worse and worse and worse and eventually my muscles gave out so badly that I couldn't even roll my own body over. I ended up bed ridden, and have been stuck here for coming up on two years now.

    I think it could be a difference in severity, or there could be distinct illnesses involved. But what works for one person definitely isn't always tolerable for others. I can do tiny bits to ward off deconditioning, but pushing through the pain or numbness is always a disaster. Not because I can't take it or it's not worth it, but because eventually my body literally gives out. I believe the people who say that certain types of exercise benefit them (because if they're response is anything like mine, they'd know for sure if it was a bad thing), but it seems like that's quite rare with this illness group.
    beaker and SOC like this.
  4. Junto

    Junto

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    I largely agree with this statement. Although I do have a lot of body and muscle aching and weakness, the more debilitating part of my condition is mental fatigue or brain fog. I may be in a better position to push myself physically. Those who experience more intense PEM should definetely start low and slow when it comes to exercise. I think it's important to exercise as much as your able to. Many studies have shown the benefits of exercise in CFS/Fibro folks. It's a great way to up-regulate norepinephrine, thereby reducing percieved pain, which is exactly what some cfs/fibro meds are designed to do.
  5. Valentijn

    Valentijn Activity Level: 3

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    Sorry, but those who experience "more intense PEM" get very sick with any increase in activity. It is simply not sustainable, even if we "start low and slow".
  6. taniaaust1

    taniaaust1 Senior Member

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    B5 deficiency can cause burning feet..
    If Im remembering correctly B12 deficiency often starts out with symptoms in the body extremeties moving in with time..(symptoms tingling and I think burning too deficiency symptom too). Symptoms commonly starts in fingers/toes and moves inward..eg to feet, then to calves.... so with way your symtoms moved in.. I think you need to make sure it isnt a B12 deficiency (blood tests arent very accurate and its possible to show up high but actually be deficient in it and be needing it). Maybe try getting yourself some methyl B12 to put under your tongue if you havent tried this already.
  7. valentinelynx

    valentinelynx Senior Member

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    Yes. My lower legs burn and ache if I am upright too long, especially driving or working (on my feet or sitting all day). My hands were the first to have this problem, as an achey stiffness starting 20 years ago when I first got ill. It progressed to a burning, which is also now been in my feet for years. Other aches in muscles can be helped by massage but not the burning in the hands and feet.
  8. rlc

    rlc Senior Member

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  9. RYO

    RYO

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    Leg pain, burning, and sense of weakness are the worst part of my illness. My symptoms started with acute viral illness. I found a long but interesting article that may explain cause of muscle symptoms. As with most ME patients, leg symptoms much worse after exercise. I also found recent viral gastroenteritis caused significant flare. After reading this article, I can see why rituximab has worked for some patients. However, it doesn't answer how a viral infection leads to long term symptoms. Is persistent dsRNA of Coxsackie virus to blame or exaggerated immune response?

    http://www.ncbi.nlm.nih.gov/books/NBK57253/
  10. RYO

    RYO

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    11.7. MOLECULAR RECEPTORS INVOLVED IN CHRONIC FATIGUE SYNDROME
    The preceding observations encouraged us to determine if the mRNA of sensory muscle fatigue and pain receptors was increased in CFS patients following exercise that exacerbates their symptoms. A major hallmark of CFS is that even mild exercise greatly increases sensory muscle fatigue as well as muscle pain (Holmes et al. 1988). With guidance from Andrea White, our exercise scientist, we developed a 25-minute, moderate, whole-body exercise protocol in which each subject performed continuously at 70% of his/her age-predicted maximal heart rate. We confirmed that in normal, healthy women and men, this moderate exercise produced minimal muscle pain or sensory muscle fatigue during or immediately after completion, and DOMS did not develop. We compared healthy controls versus patients with CFS and FMS, collecting leukocytes and extracting their mRNA at five intervals: at pre-exercise baseline, and at 30 minutes, 8, 24, and 48 hours after the end of exercise to examine ASIC3, P2X4, P2X5, TRPV1, adrenergic α2A, adrenergic β1β1 and ββ2, COMT, IL6, IL10, TNF-ctα, TLR4, and CD14.

    The results (Figure 11.10; Light et al., 2009a) show that following moderate exercise, control subjects revealed no significant increase in mRNA for any of the genes tested. CFS patients (70% with chronic widespread pain meeting diagnostic criteria for FMS) exhibited significant increases in mRNA expression of nearly all of the genes studied, except for IL6 and IL10. The surprise was that in CFS patients, increases in metabolite-detecting receptor and adrenergic receptor gene expression were obvious at 30 minutes after onset of exercise. A second surprise was the magnitude of the effects that greatly exceeded any increases we had seen even with maximum exercise in control subjects. In addition to the mean differences, we found strong correlations between increases in mRNA of ASIC3, P2X4, P2X5, TRPV1, adrenergic α2Aα2A, adrenergic β1, β2, COMT, IL10, TLR4, and CD14 in the CFS patients and their reports of increased mental fatigue during the 2-day time period following exercise. We found similarly strong correlations between ASIC3, TRPV1, adrenergic α2Aα2A and ($β2, and IL10 and the patients’ reports of pain during the 2 days following the exercise challenge.
  11. Starfive

    Starfive

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    Not versed in gene language, so can you explain what these results mean? Thanks!
  12. taniaaust1

    taniaaust1 Senior Member

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    Ive had a not nice reminder past few days of how aweful this symptom is (after I did more then I usually do, it hit at its worst 3-4 days later getting worst each day from the day I over done)... I had a shocking nights sleep last night due to it.

    Sometimes I find the aching legs can ease up a bit if I sleep with them raised up on a pillow but last night that didnt help at all.. and I had leg pain on and off all night (It was weird how it was coming and going). I couldnt even distinguish where it was coming from, it was like all throu my legs.

    This was a good reminder of how my old symptoms which I havent had for ages can easily flare and come back if Im not careful
  13. rd123

    rd123

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    Hi, new to posting here, but not new to this illness. I have the pain in my lower legs as well, and it is pain. It feels like it is the bone that hurts, it is worse if I am standing or walking on them for even short periods of time this symp. started in 2008. But, I had been dealing w/ other issues well before this. I was very active biking 12-20 miles a day or every other, worked full time, and had an active social and hobby life. I had also went back to Uni. and got my BS degree, that is when I noticed things were not right, that was spring 2004, kept going back to the Uni. Dr. but nothing was found, except sinus infections, put me on antibiotics, and I felt much better, then once they were out of my system, I was back to not feeling good, sleep issues, no dreaming/REM sleep, just felt tired and had no go/pep whatsoever. I knew something was wrong, but didn't know what.

    I was off & on antibiotics dozen times for 2+ yrs, had an allergic reaction to Penicillin, then, so those were out. I moved home to lower my stress level, as I had moved to a metro area after graduating, but the next yr the pain in lower legs started. Dr. tried sev diff. things, Tramadol was first, and that made it much worse, tried something else, then hydrocodone and doxycycline(was on this for 2+ yrs at the time, as Dr. thought Lyme might have been an issue, and I did better on it). I have been to 2 CFIDS specialists, I have high titers for HV-6 & 7, CMV, and one other I can't remember. I posted to my group list at the time and was told to add Xanax w/ the hydro. as the 2 together worked better for the pain. Tried it, and it did make a difference, he also had the lower leg pain. I still take both for it now, but it is just a crutch, it does not help if I overdo it, or if the weather is really changing. My cats also sleep on my legs, and it does help immensely, I too think it is the pressure more than anything. I cannot have legs down, as they hurt more and swell. My arms have also started swelling up w/ hotter temps in 2010, they look as if I had lifted weights for hours, the veins all bulge, and swell to about 2x normal winter size, leg veins do the same thing. They also hurt really bad w/ minimal usage. So I do what I can when I can, avoidance has become req'd. for many things. I alos am losing weight since last summer, down from 172, today I am 147. Dr. is not sure what is going on. But we are watching it closely. I also get very hot very easily, cold is also worse.

    So here is my question/s what should I be doing that I am not? I have tried many things, including D-ribose & l-carnitine, D3, but I did not have a sig. benefit in pain levels. This is what I currently take:

    Hydrocodone 325(was 500 before) 3x day, Xanax .5 mg 3x day, Ambien 10mg before bed.
    Multi-Vitamin, Bee Pollen, B complex, L-lysine 1000mg, and just added Biotin 10,000 mg all 1x day.

    I read on another thread about the Metafolin? but have not read about what I need to do before I take that, any help is greatly appreciated. I know we are all different, and I have never done any of the methylation stuff, I do watch what I eat, and try to only eat fresh w/ chicken breast, no beef, limit carbs and overly processed foods and low amts of dairy/gluten. This is hard to do, and reading about all the things, it gets very confusing very quickly, so I get overwhelmed. Thanks in advance, R
    Last edited: May 17, 2014
  14. Aileen

    Aileen Senior Member

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    Since you have taken so many antibiotics, maybe you are low in the good bacteria. Probiotics might be a good idea. There are many threads on this topic. Also check out the Resistant Starch thread.
  15. Valentijn

    Valentijn Activity Level: 3

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    @rd3 - I get swelling from eating certain foods. Maybe you're having an immune reaction to something you're ingesting? Digestive enzymes help me sometimes, but mostly I just avoid my problem foods: soy, egg, gluten, cranberries.
  16. rd123

    rd123

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    yes, I have taken probiotics, done Bragg's Apple Cider vinegar drink, yogurt, etc...A friend is getting me something she takes, it's from an organic food store, I can't think of the name now. But, yes I too was worried about gut flora being wiped out. As for the swelling it only happens in my arms when the temp gets above 90 or so, I think it had more to do w/ Oth. Intolerance/Cardio issues somehow than anything, but not sure. I already limit my diet pretty severely, but do have some soy via coffee creamer 1x day, eggs I am OK with but do not eat often either...., and gluten very low intake as well.

    I have had 2 sinus surgeries, last time the ENT did skin prick testing, only tested pos for Cottonwood & cedar, but he also said that he thought it could be dust allergy. It is hard to figure it all out for sure. I think the new findings on Vagus nerve over-stimulation/infection, and the inflammation they are finding is a lot to do w/ it. I also get the pressure in my head/behind eyes, and have a headache most times, and can get so bad it is splitting down the L side. I also have MCS now, so really have to watch what I use, no chemicals, etc....Thanks for the replies so far.
  17. Violeta

    Violeta Senior Member

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    I have read that pain in the feet and legs, especially when it feels like it is in the bones is a symptom of Bartonella.
  18. Chickadee9

    Chickadee9

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    I've had ME for decades but gradually this symptom has improved. But I still get nights when I get this terrible burning sensation in my lower legs and I can't sleep. Thankfully the symptom tends to go away after a few days. I remember how awful it was at the beginning of my illness. Interesting to see that others have the same experience.
  19. jann1033

    jann1033 Senior Member

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    I have varying degree of deep"Bone pain" thst is "just" CFS but also make sure you don't have arthritis. Other drs ignored it for years til my cartilidge is totally gone and I need both knees replaced. Its burning stabbing pain from thigh to mid calf. It was worse after walking when it started but hurts 24/7 now.
  20. Starfive

    Starfive

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    how would docs treat arthritis? do you think there are arthritis treatments to help with this burning excruciating leg pain?

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