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Severe pain in thighs

Discussion in 'Pain and Inflammation' started by Stone, Jun 26, 2010.

  1. Stone

    Stone Senior Member

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    Does anyone have any ideas on what might be causing a problem I've been having for about a year now, which is worsening to the point that now I'm in a wheelchair much of the time? I've been having pain in my thighs, mostly in the front but also on the sides and in the back when it rains. Sometimes my hips and knees hurt too. My massage therapist who is a trigger point specialist and myotherapist says the fascia feels very unusual, like pleated bubble wrap, and the muscles (quads, IT bands) also feel very lumpy and weak. Massage therapy is not working as expected. The pain is constant and severe, and can escalate to full blown pain crisis. There is progressive weakness too which may be from deconditioning since I can't walk when the pain is out of control but I can walk somewhat better when I have good pain control which is rare. Extreme heat seems to relieve the pain somewhat. A compression garment like long spanx helps too, and may be the most helpful thing I've tried so far. Flexeril seems to help a little. The pain is always a deep sickening ache, sometimes there are sharp stabbing pains, some places burn sometimes, and it often feels like my legs are crushed under a heavy object like a car. I've lost 18 lbs in the last 6 month while mostly in bed, since I don't have much appetite due to the pain. It's very puzzling, distressing and depressing at times. I had a lumbar and pelvic MRI which were normal. Nerve conduction studies were mostly normal. Lots of labs have been done, with nothing remarkable showing up. I was tested for Lyme, and was positive first then negative by Western blot. Anybody got any ideas? I'm stumped, so are the docs I have seen, although none of them will actually palpate my legs and feel these knots and lumps. Ideas anyone?
  2. Woody

    Woody

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    Sorry to hear of your pain in your thighs. This was one of the early symptoms that both my sister and i had/have. Mine are burning right now, but you seem to be in more pain than I am. I've found that regular movement, stretching, and elevation helps some in addition to what you've already mentioned. It sounds like you may be suffering from chronic myofascial pain.

    You may want to check out the following link about treating Chronic Myofascial Pain (CMP) by Dr. Devin Starlanyl http://homepages.sover.net/~devstar/define.htm . It is a quite interesting and technical read. (She has published as well) This is evidently a relatively common condition that does not respond well to traditional massage, but there are techniques that she explains that have helped many people. Hope this helps.:D

    *Changed the link to a more appropriate page of her website
  3. pollycbr125

    pollycbr125 Senior Member

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    I have terrible pains in my legs muscle pain, joint pain and then what I can only describe as bone pain. Im on stupid meds for the pain but to be honest it only takes the edge of .I am alway threatening to get the chainsaw out though its still in the shed just. ( sorry my warped sense of humour) . I have yet to find anything really that helps for me its the worst symptom as it interferes with every aspect of my life . I did not realise there was so many types of pain until I got this illness for me the pain is the worst symptom and I could probably cope with the rest if I wasnt in excruciating pain 24/7 .If you find owt that helps let me know I would be most interested
  4. Woody

    Woody

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    I can relate to the chain saw, but I'm not sure where to start cutting!
  5. pollycbr125

    pollycbr125 Senior Member

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    yeah lol on really bad days there wouldnt be a right lot left of me ;)

    maybe i ought to go for the full body transplant instead :tear:
  6. Rafael

    Rafael XMRV+ Member

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    That was one of my most bothersome symptoms for a long time too.
    I am not sure exactly what "compression garment like long spanx" is but some things that helped me (in an accumulating kind of way) were.
    1. True compression socks (prescription required) - even if you can't get them all the way to your thighs (thats major work when sick with ME)
    2. More frequent lie downs (e.g. 15 minutes 6 times a day) - legs up whenever get a chance.
    3. Epsom salt foot baths
    4. Sorry for my contribution of dark humour: sinking to bottom of ME illness and slowly recovering and doing exercise (swim!!, walk) and stretching (it only took me 5 years). And when these symptoms moved to my chest, heart and throat area then I didn't mind the legs as much.
    5 In retrospect: my theory is that the leg symptoms were also a byproduct of my denial that I really had a lower energy level (functional capacity scale or mitochondrial function) than I was functioning at - which delayed recovery.

    Thanks Woody for link to the CMP stuff by Dr. Devin Starlanyl
    That might explain why some other things were more helpful than I expected like;
    6. I had a lot of anxiety with my ME. Was lucky to see a psych that didn't pooh pooh ME and sleep disorders. he chose Cymbalta becuase its approved for FM (as well as anxiety, depression, etc.) in the U.S. I don't have FM trigger points but it diminished the annoying pain in legs and everywhere and as a result I immediately slept better, etc. Maybe they will market it for more MF pain too one day.
    7. Tai Chi (I started with just the sitting routine). It must be one continuous myofascial workout... unexpectedly good results for me.
  7. kerrilyn

    kerrilyn Senior Member

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    I'm sorry you are having such pain. This was one of my first symptoms. My legs would ache down to the bone. Awful, awful, awful pain. It went on for a few years and doctors couldn't find a reason for it. I have no idea why it happened in the first place and no idea why it eventually improved. Around that time I did have more low back pain and was diagnosed with degenerative disk disease, not sure if it was actually connected to the leg pain. I still have the pain occasionally but not as intense, does not last as long, and usually not the entire leg. I wonder if a med for nerve involvement, such as neurontin would help? Hope you get some relief soon.
  8. wciarci

    wciarci Wenderella

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    Stone, so sorry to hear of your pain, that was one of my early symptoms. Once I was placed on B12 injections and magnesium, it seemed to help. I seldom have this anymore, so it will subside, but I suggest that the doctor look for deficiencies. I hope this helps.

    Wendy
  9. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    How about some trigger point injections to break up those masses? You will know a good Dr when they are willing to feel for the lumps! I had some trigger point injections done at a hospital and since it was on my back I could only tell them where the pain generally was, they would not palpate, or as where i go to know, walk there fingers on my back and feel for the tender/sore/bundled areas.

    Not sure of a website to find a good pain clinic, but ask your Dr, that's what helped me! Hope this helps!!

    I am also have Myofascial Release work done with some cranio-sacral work.

    My thighs have been hurting more lately also, perhaps this is because they are becoming deconditioned since I quit biking about 1 year ago. I have been pretty good with my magnesium malate. I have been trying to stretch, doesn't seem to help much.
  10. Stone

    Stone Senior Member

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    I think some magnesium would really help me but I can't keep it down. I took one magnesium pill and experienced violent vomiting and stomach pain to the point that I was preparing to go to the hospital when it finally subsided. I'm afraid to try it again. The odd thing was though, that the next morning I had significantly less pain, so even what little magnesium I did absorb may have helped me tremendously. I asked the rheumatologist if there was a way to get magnesium non-orally and he said no. Then I read that there is such a thing as IV or IM magnesium. Has anyone ever heard of this? I would like to know a little more about it before asking a different doctor for it. You know the saying, "be careful what you wish for". I'm wondering if anyone has ever tried IV or IM magnesium and how they fared.
  11. Stone

    Stone Senior Member

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    Oh yes, and thank you all for your sympathies and support and good ideas. I don't know what I'd do without cool people like you. Thanks! :)
  12. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    There is Magnesium that can be applied to your body and it will absorbed this way.

    GG
  13. Stone

    Stone Senior Member

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    GG, do you have any idea where one might procure some of this topical magnesium? I've been experimenting with Epsom Salts (magnesium sulphate) poultices, but I can't say it's doing much. I would like to try the stuff you mentioned though. Is it a prescription or OTC?
  14. ggingues

    ggingues $10 gift code at iHerb GAS343 of $40

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    You could probably find it at a local health food store or easily online. I googled topical magnesium and this was at the top of the list: http://www.ancient-minerals.com/

    Not sure how expensive this is? Perhaps you can try Swanson, IHerb, Vitacost etc.. for pricing.

    Hope this helps!
  15. maryb

    maryb iherb code TAK122

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    Stone go to Dr Myhills site where you will find info on ways of absorbing magnesium through the skin, she also gives the quantities needed for an Epsom Salt bath, I do mag injections but find them painful even with lignocaine.
  16. Martlet

    Martlet Senior Member

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    I don't quite know how to describe this, but if you run your fingers firmly across the muscles in your thighs, do they feel really taut and sort of "spring" like a solid mass, if you wiggle the muscles from side to side? Darn it, I wish I could explain that better, but if you grasp my meaning, I've found that if my husband (or I, at a pinch) sort of rock that muscle back and forth, it finally gives in and relaxes, and with it goes the pain.
  17. muffin

    muffin Senior Member

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    Primal Reflex Release Technique -- gets rid of body pains, spasms, rock solid muscles

    This "physical Rehab" technique looks odd but works. Gets rid of alll sorts of pain and allowed me to walk, stand up straight, stopped horrible spasms, got rid of years of shoulder/neck/head pain and so on. See if there is a trained therapist near you. This worked like magic for me. http://www.theprrt.com/ -- PRRT operates on the autonomic nervous systems and rebalances the sympathetic (fight/flight) and parasympathetic (rest/digest). Usually with people like us, the Sympathetic (fight/flight) is super upregulated and the muscles stay in the hard, rigid position. They are butterfly gentle and I have never had pain in the more than 30 or so treatments I have had over the years. Look to see if you can find a therapist, get in, give a try for at least 3 sessions. I was shocked at how well it worked when NOTHING else worked and I was at the end of my line.


    Primal Reflex Release Technique : An ultra gentle manual technique that addresses nervous system
    "upregulation" or perpetuated body holding patterns that are beyond your conscious control
    http://www.theprrt.com/
    http://www.youtube.com/watch?v=-gQ9Wv-5-Sw - John Iams Treats Pain Patient Using PRRT
    http://www.youtube.com/watch?v=1_kMUv7EnTk&feature=related The Famous Sub-Occipital Release
    http://www.youtube.com/watch?v=kKYR6HEvgMQ&feature=related John Iams Treats Patient
    Primal Reflex Release Technique
    Alternative Pain Relief Technique for Practitioners. Home Study Course and Seminar Information for Primal Reflex Release Technique by John Iams.
    www.theprrt.com/ - Cached - Similar

    Home Study Course
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    Home Study Course - Primal Reflex Release Technique
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  18. muffin

    muffin Senior Member

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    You Said, "I've found that if my husband (or I, at a pinch) sort of rock that muscle back and forth, it finally gives in and relaxes, and with it goes the pain."

    This statement makes me believe those muscles are super tight, hard as rocks and the PRRT would help make them into butter without all that rocking. Do give this PRRT a try if you can find a therapist. This has become more popular because of word off mouth. It works. I think, given the description above, it will work for you. My muscles were rock, solid hard and they gently put their finger on the muscle for 10 minutes or so and the muscle "lets go" and really does turn to butter. Worth a shot.
  19. Rafael

    Rafael XMRV+ Member

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    Ontario, Canada
    Many pharmacies compounds stuff to order => magnesium chloride topical works great.
    Its surprising how efficiently compounds are absorbed through skin.
    I try to follow MyHill protocol (but Mg injections seem like overkill). They also blend the Myhill Mineral Mix recipe for me.
  20. SOC

    SOC Moderator and Senior Member

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    Our pain was never as bad as yours sounds. You have my deepest sympathy.

    For us, that thigh pain is usually the first sign that we've overdone and are heading into a flare. My daughter soldiers through with standard pain killers, but I'm sicker and that doesn't work for me.

    I found that Cymbalta every night has kept that pain at bay except during flares. In the beginning, when it was fairly constant, the Cymbalta took just enough of the edge off that standard pain killers could keep the pain manageable.

    ME/CFS docs wanted to prescribe Lyrica for that type of pain, but I wasn't ready for that. If my pain was worse, I'd have tried it, though.

    During a flare, I find that an Epsom salt bath helps some. Again, it only takes the edge off, but it can be enough to be able to fall asleep when the pain would otherwise keep me awake.

    Hoping you get some relief!

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