Shortness of Breath, Neuropathies, Leg Pain, Trouble Raising my Arms

Discussion in 'Fibromyalgia Main Forum' started by Osman, May 27, 2011.

  1. Osman

    Osman New Member

    Hi Everyone...This will be my first post here & wish it could be a good one but such is not the case.
    About 10 weeks ago I started getting numb & tingling in my feet & calves & right arm & left hand. Just before this I started getting terrible muscle pain (burning, aching) in my upper thighs & muscles around the inner knee.
    Neuropathies first lasted for about 4 weeks, then stopped for 5 weeks, but came back last week. My legs are now stiff, week, aching, and burning (thighs are real bad) and it is difficult to walk more than 20 yards. The leg/muscle pain has never gone away, only worsened.
    I've had CFS for about four years now, but was always able to walk fine with no muscle pain & now feels like I'm losing the ability to walk.
    I'm now short of breath often, and can't catch my breath just sitting watching TV even.
    This happened for three hours a few nights ago, & on off since then.
    Also strangely it's very difficult to raise my arms making it hard to wash & dry hair, put shirts on even, & ,putting dishes away in higher cabinets causes problems.
    Feels like my arms weigh 200 pounds, & quickly become short of breath within seconds of raising my arms.
    I went to a Neurologist & had an MRI last month to see if it was MS, and it it's not MS as my scan came clean. I was given Neurontin for the neuropathies.
    Saw a Rheumatologist once & was sent off to a neurologist having been examined for all of 30 seconds.
    My CFS Doctor tells me "neuropathies" are common, but the shortness of breath is not often heard.
    My PCP is of no help.
    Also, my neck muscles seem week now too, it's getting harder to support the weight of my head.
    I've read the posts on neuropathies, but anyone else having shortness of breath often and difficulty raising their arms?
    I'm not sure where to go from here, quickly losing hope as everything has been going downhill & fast the past couple months.
    Any input would be appreciated.
  2. mbofov

    mbofov Active Member

    Neuropathy and shortness of breath can both be symptoms of B12 deficiency, and B12 deficiency is extremely common with CFS. Have your levels been checked? Also you need your folate levels checked.

    I recently started taking methylfolate (a very specific form of folate, not folic acid) and in addition to sublingual methylcobalamin (a specific form of B12), also do methylcobalamin injections and my energy is picking up. I've taken B complex vitamins for years but my B12 levels were always still low, even with the shots, but I think the methylfolate (also called Metafolin - Solfar makes one) is enabling the B12 to work better. I think I've had both a folate and B12 deficiency.

    Anyways, I would look into both B12 and folate. If you want to read more about this, go to the Phoenix Rising Board (\B12\Glutathione\Chelation\...) and check out "B12 - The Hidden Story" and also several posts by Freddd about B12 and methylfolate.

    Last year my sister, who was a vegetarian, told me she had intermittent burning and numbness on different parts of her body. She started taking large doses of B12 and the symptoms. B12 deficiency is really common with vegetarians too.

    Good luck -

  3. elliespad

    elliespad Member

    I've been sick 32 years, dx. with CFS in 1988? and Fibro about a year later. I could have written that post. I always have to have back, and arm support when sitting. Lean my head on my hand at dinner tables. Always have trouble peeling vegetables, washing hair, using blow dryer, can't hold arms up for more than 10-15 seconds. I always have trouble holding down the gas pedal when driving. I sort of jam my foot sideways between the pedal and the floorboard to maintain pressure. Can just barely get to the car or mailbox. Anywhere I go, I have to sit immediately. I have constant profound weakness. I never describe it as fatigue as that doesn't describe it. Muscles and tendons kill constantly. I used to describe my muscles as feeling like I had cinder blocks attached to them. Now, they are just plain weak.

    When I am at my worst, I loose most fine motor skills. Trouble typing, can't use the mouse, can't write. I seem to go throudh spells where I get worse shortness of breath. It seems to be relieved SOME by taking Tenormin (beta blocker), taking Potassium or sea salt in water. Not a cure for sure, but sometimes helps. Sometimes not.

    Years ago, Maybe 20 years, I had horrible shortness of breath. When my thyroid meds were switched to Desiccated thyroid, it vanished instantly.

    Don't know if any of these ideas will help you, but wanted to let you know my symptoms are similar.
  4. Osman

    Osman New Member

    Thanks for your replies Mary and Ellie. I really do appreciate it.
    I've never had my B12 levels checked before, just Vit. D (which was very low), I'll mention the B12 to my CFS Doctor during my next visit. Always wanted to do so B12 injections but it never happened. I'll to do some research on folate as I know nothing about this.

    I can't imagine 32 years of this, it's been "only" 4 for me now & with these recent developments not sure how much more I can take.
    Less than a decade ago I was a competitive athlete, now I feel like I'm trapped inside a 90 year old body & can't even walk around the block if I wanted to.

    My muscle pain is so bad at times it's agonizing, about the only relief I get is holding ice bags to them. It's deteriorated so rapidly in the past couple months it's frightening to think of where it might be a few months from now.

    **Shortness of breath- I had a relative who had an oxygen tank come over tonight & I used it for 20 minutes or so. This helped out SIGNIFCANTLY & my neuropathies were even relieved quite a bit. I'm still feeling the positive residual effects a couple hours later.
    I know this is a band-aid approach but atleast it provided me relief tonight & I could do some laundry as I live alone.
    Thanks again for the suggestions.
  5. Osman

    Osman New Member

    Forgot to ask you what did Doctors/Specialists tell you when you went to them with your profound muscle weakness symptoms?
    Did you ever have an electromyogram & nerve conduction studies to test muscle & nerve functioning?
    Did you ever have a CT scan (if they were around then) for your horrible shortness of breath you experiened back then?
    I'm not sure where to go next, maybe a Pulminologist or back to the Rheumatologist.
  6. mbofov

    mbofov Active Member

    Something quick you can check out yourself is to look at your latest CBC blood work (the complete workup docs usually do once a year). There is a section labeled "MCV" which stands for mean corpuscular volume. If this number is high, it can indicate a folate and/or B12 deficiency. My MCV was near the top of the normal range for many years (my last one was 98 and I think the top of the normal range was 99) and no doctor ever pointed this out to me until a couple of years ago, when my CFS doc explained that it meant that my red blood cells were larger than normal - they do this to compensate for a folate or B12 deficiency. A high enough number is called macrocytic anemia. I was doing B12 shots then and also taking a good B complex vitamin with plenty of folic acid so he didn't change anything

    Now, even though my number was in the "normal" range, my energy levels were crap and my B12 levels were always low (that requires a different test) even though I was doing B12 shots. As I posted earlier, I recently started taking methylfolate (or Metafolin - but NOT folic acid, which is synthetic and can itself paradoxically cause a folate deficiency according to Freddd) and the methylcobalamin B12 shots and sublingual B12 and my energy is picking up. I also started taking something called dibencozide by Source Naturals, another form of B12 recommended by Freddd.

    So this test can give you a quick indication if you have a B12 and/or folate deficiency even if your results are in the "normal" range. I think 99% of doctors when they look at test results only look at results outside of the normal range, and we patients have to educate ourselves as to what high or low normal values mean.

    I strongly encourage you to read Freddd's post I gave a link to, as to why folic acid may not be a good thing to take and may even contribute to further folate deficiency, if that is a problem for you.

  7. elliespad

    elliespad Member

    I've seen 5 Neurologists over the years. Each wants their own EMG and Nerve Conduction Studies. Never shows anything unusual. I've also had muscle biopsy, using biceps. That time they were looking for Mitochondrial problem that would run in families. I have SIGNIFICANT family history with muscle weakness. At the time of my muscle biopsy none of my family members were diagnosed, but 13 family members have since tested positive for ocular pharyngeal muscular dystrophy. I am WAY more disabled than any of them, other than those who have died, the year or two preceding their death. And I've been this way for over 30 years. I've had two (different) types of Genetic Tests for OPMD, both negative. Unbelievable.

    I (and my family members) have SIGNIFICANT history with Pesticide Exposure. Lived (literally) 4 feet from a pesticide company from birth until age 18. You can read my profile for more on that.

    I've had several CTs and MRIs over the years. Hmmm, CT or MRI of brain (have one), neck, spine, lower lumbar, CT Angiogram of heart. Bone scans. Probably more.

    I wish you way more success than I have had in treating this beast.

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