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All Kinds of Muscle Pain and Leg Pain-No Answers

Posted , 5 users are following.

Oboegirl
Oboegirl

I have burning and pins and needles every night from about 2:00 on.  I slso have persistently contracted leg muscles (especially in my calves), stiffness in my knees and, a lot of pain.  This pain stays at a moderately severe level until I walk 50 yards, and then I becomes intolerable.  I have had to severely restrict my activities to stay as comfortable as possible.  Ruled out so many neurological, rheumatological, autoimmune, infectious possibilities.  Does anyone have this or have any ideas.  I am at my wits end and am getting really depressed about it.  Thanks for your help.

1 like, 10 replies

10 Replies

  • EileenH
    EileenH Oboegirl

    Posted

    What you describe sounds like peripheral vascular disease - the blood supply to the legs is reduced for various reasons which have to be identified. Has that been considered?

    It is often called the "window shoppers' disease" because the person can walk a short distance and then has to stop to rest - the activity causes something called claudication, the blood flow isn't enough for the muscles to get all the oxygen they need and it causes pain. After a rest the pain goes and they can walk a bit further - rinse and repeat. So going "window shopping" is a very convenient way of getting somewhere without looking silly as you study the contents of a shop window.

    The distance you say you can walk and the fact you have what is called "resting pain" suggests it is quite advanced. Does it help if you hang your legs out over the edge of the bed at night so they are hanging down?

    You would need a referral to a vascular surgeon for tests to rule it out (or in). If your GP doesn't listen to you even when you are very firm about the symptoms take someone with you.

    • patricia13638
      patricia13638 EileenH

      Posted

      Hi

      ​Thank you so much for your reply to Oboegirl, I have had all of these things and more and to read that there is actually a reason is music to my ears as I thought I was "just" a hypocondriac looking for sympathy all the time.What with my vague aches and pains all over , I am in the hands of a good rheumy now and go for a result to the tests for PMR  in Nov I feel now I can mention the rest of the symptons nothing was found in my blood test from my GP but the consultant said all the pressure points for PMR were postive not sure what this means but hope it helps with the solution.

      Thabks

    • EileenH
      EileenH patricia13638

      Posted

      There are no "tests for PMR" - it must be a clinical diagnosis, made on the basis of other things being ruled out, including the cancers that can also give rise to very similar symptoms. PMR isn't the disease - it is the symptoms of an underlying cause. In the case of the PMR we talk about here it is an autoimmune disorder - something causes your immune system not to recognise your body as "self" so it attacks various tissues - and in our case it is blood vessels, in PMR the very tiny ones which are also called the microcirculation.

      Nor do I have any idea what he's on about saying "pressure points are positive for PMR" because it is something I have never read about anyone using. Some of the places that hurt particularly can be the same as what they call pressure points in fibromyalgia - but they are two completely different illnesses. PMR responds well to pred, fibro doesn't.

      The symptoms Oboegirl describes are typical for peripheral vascular disease - but there are probably other things that could cause it as well, it was just what came to mind reading her symptoms. People who have PMR and/or GCA are at a higher risk of developing it but it is usually sometime before it gets bad enough to cause significant signs and symptoms. However - it is quite easily ruled in or out by using the proper tests which are also not particularly unpleasant at least! I'm not sure whether a rheumatologist would recognise it, it isn't really their special field but your GP should be able to refer you to the local vascular laboratory for tests.

    • Oboegirl
      Oboegirl EileenH

      Posted

      Hi Eileen-  I got right on it today and saw a Vascular Disease specialist as you suggested.  Fortunately or unfortunately, this was also ruled out after all of the necessary testing.   I am back to my neurologist next week for a follow-up, and I don't expect much.  Originally, I thought that I might have MS because I have other symptoms that align with it.  All of my MRIs are clear.  I am negative for peripheral neuropathy and for myaesthesia gravis.  I would be very upset to be put in a wastebasket diagnosis of fibromyalgia.  Also, the use of Lyrica is not recommended for me.  Any further ideas?  Thanks,  Kathy
    • EileenH
      EileenH Oboegirl

      Posted

      Right - so much for that idea. That's a bit of a b*%%%%%%%%%

      This really is a symptom of the separation of specialities these days - "doesn't fit my criteria, go away"! Are NONE of them concerned about the constellation of symptoms?

      That wastebasket does seem very much on a horizon but it doesn't sound like fibro does it? But you would think there has to be some form of neuropathy or poor blood supply there for some reason. Of course - autoimmune disease must be high up there.

    • Oboegirl
      Oboegirl EileenH

      Posted

      The system really sucks.  My internists didn't give me any referrals to solve this.  I had to do it all on my own.  Last time I went to my regular guy, I gave him a complete symptom checklist and then checked his diagnosis in the system and it was "depression".  You've got to be kidding me.  I told him I couldn't walk, was in pain, and was not sleeping. I talked to my neurologist and asked her if there was any other specialty I should be talking to, should I change my pillow, anything.  She gave me nothing but a couple of prescriptions that did nothing for me.  I went to an autoimmune specialist, and she didn't think I had that.  My joints are not swollen at all, although, I have secondary knee pain because of the compensations I am making for my persistent leg cramps.  My friend, who has had a lot of unfortunate experiences with neurologists, said that she didn't think that there would be a diagnosis at all.  She also said that even if there were a diagnosis, they probably would not be able to treat it.  Ugggh.  So, right now, I am trying to sleep past 3 am, and have very limited mobility that alternates with bed rest.  I am trying not to go down that slippery slope of depression, but my best efforts to find a solution for my situation have, thusfar, been in vain.  Thanks for your help.  Kathy
    • EileenH
      EileenH Oboegirl

      Posted

      I know this sounds crazy - but what alternative therapies have you tried? Since you have muscle problems why not try a few sessions of Bowen therapy? If it can help at all you will see an improvement after a maximum of 3 sessions - you might need more but if 3 sessions haven't made any difference at all it probably won't however much you do so you can stop spending money on it.

      It never ceases to amaze me how often "depression" is written in the system with no real evidence - and no offer or suggestion of useful therapy made. And they resort to writing a prescription for some pills ...

    • Oboegirl
      Oboegirl EileenH

      Posted

      I started acupuncture last week.  Nothing so far.  I changed my diet completely and have cut out anything, including coffee and diet sodas, that might be harmful, andI am going to physical therapy.  I will look into Bowen Therapy.  I don't know anything about it.  Thanks.
  • Oboegirl
    Oboegirl

    Posted

    Eileen-Thank you so much.  This is an avenue I have not tried.  It makes sense.  I do not know why none of my doctors have suggested this.  I will look into it.  Kathy
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