Intermittent Leg Weakness with the Fatigue/Anyone else have this?

Discussion in 'Fibromyalgia and ME & Chronic Fatigue Syndrome' started by McTanker, Nov 26, 2007.

  1. McTanker

    McTanker New Member

    Male - 43 yrs old. I have had issues with intermittent fatigue and weakness for 8 months. In addition to fatigue, I have intermittent weakness to the point of walking slowly and trouble going up stairs. I walk with a cane on the bad days. Strangely enough, I often improve at night about 8:00 or 8:30 p.m. only to have it come back the next morning. I may have severe trouble going up steps in the afternoon only to feel just fine that evening. This cycle repeats itself often. Sleep is non-restorative. Isocort (cortisol supplement) sometimes will help in reducing the weakness, but not the fatigue. Does it help as an anti-inflammatory and not necessarily because I am low on cortisol? All blood tests are normal. My doctor and an Infectious Specialist have not figured it out. I get to feeling better at times, but it usually doesn't last more than a couple of days. Has anybody else experienced the extreme leg weakness? I am currently working a referral to a neurologist. Thanks for your time.

  2. findmind

    findmind New Member

    What is your blood pressure?

    Sometimes if we get up and begin to walk, we with CFS/ME will lose our blood pressure and legs can just buckle right out from under us.

    If yours is low (like 90-100 over 60 or less), you could try to get a Impedance Cardiograph, which measure the bloodflow into the heart.

    If it is low or slow, that's Diastolic Heart Failure, which is treated differently than regular (systolic) heard failure.

    If this sounds like you, you could do a search on this site (by name Impedance Cardiograph and Title), you'll get lots of information.

    There's always hope!
    findmind
  3. McTanker

    McTanker New Member

    FindMind, it is usually 120/84 or higher. Since you brought it up, I have always wondered about a heart problem of some sort. My legs sometimes act as if they don't have enough blood and oxygen. There is a history of heart problems in my family. I brought this up with my doctor. After a normal EKG and his usual checks he basically dismissed this possibility.

    Thanks and Take Care,
  4. xchocoholic

    xchocoholic New Member

    Could be ataxia. Has your doctor sent you to a nuerologist for this ?

    There are several types of ataxia. There is one type of sporadic ataxia that is now known as gluten ataxia and can be resolved by eliminating gluten from your diet. Since this is a relatively new symptom for you, I'd eliminate gluten for a few days just to see if it helps.

    If it turns out that you have gluten ataxia you will have to avoid gluten for the rest of your life, but you might find relief quicker since this is new and not happening all the time.

    A quickie test would be to eat all fresh meats, fruits and veggies for a few days / weeks and see if you feel better.

    Keep in mind that it may not be that easy, it took me one year after removing gluten from my diet to start walking normally again. And one year is what Dr.Hadjivassilou tells people to expect.It's just that I've seen others who started walking normally faster than this.

    Hope this helps ... marcia
  5. McTanker

    McTanker New Member

    Thanks, that is some interesting stuff that I have not heard of. I am researching that now. I have an appt with a Neurologist in about 10 days. Additionally, I was already working to get some testing gluten and allergy testing done with Great Plains Lab.
    Did you have the walking problems that I am describing? Did you have fatigue with it as well? Is Gluten Ataxia recognized by most neurologists?
    Thanks again for your time.
  6. xchocoholic

    xchocoholic New Member

    Hi Again,

    I was using a motorized cart to do my shopping with because my legs would start to give out on me after the first aisle. And when I tried to do the whole store while leaning on a cart for support, I'd be a complete train wreck by the time I got to the register. My whole body would feel so heavy and my vision was so bad I couldn't focus.

    Do you have visual problems are weak arms too ? This can go along with gluten ataxia. I have a link somewhere where Dr. H tells you the stats on this if you haven't already found it.

    The weak feelings in my legs and arms went away almost 1 year exactly after eliminating gluten. There wasn't any transitioning either. One day I needed the cart and the next day I didn't.

    I do however get weakness in my arms from time to time, but that's deconditioning or lack of sleep at this point. I never ever feel wobbly anymore.

    It took a while longer for my visual complaints to completely go away. I can always focus now though. I'm hypoglycemic too and my vision gets distorted if my blood sugar drops too fast too.

    It's a good idea to get your gluten antibodies tested and to even get checked for celiac disease. I recently read that ataxia is common in celiacs. Keep in mind that while ataxia is common in celiacs you don't have to be a celiac to have gluten ataxia.

    Good luck with this ...


    I still have fatigue issues, but I was diagnosed celiac and have intestinal damage that needs to heal. It takes at least 2 years for an adult to heal and I'm at 2 years and 2 months.

    I'm not sure how many nuerologists are up on this. You can always call the one you have an appt with and verify this before going in. It never hurts to be pro-active.

    Just out of curiosity, are you eating gluten for breakfast but not later in the day ?

    Marcia






    <br>[<i>This Message was Edited on 11/27/2007</i>]
    <br>[<i>This Message was Edited on 11/27/2007</i>]
    <br>[<i>This Message was Edited on 11/27/2007</i>]
  7. McTanker

    McTanker New Member

    To my knowledge, I wasn't consuming more gluten in the morning than other times during the day. Does it act in combo with caffeine to cause neurological effects? I drink a lot of coffee in the a.m. The caffeine would have worn off in the evening.
    I have taken your suggestion and I haven't eaten any gluten for the last 36 hours or so. I haven't had any more problems walking and I'm hoping it is the lack of gluten and not just conincidence. My walking problems were intermittent and I could be on the upswing.
    I am definitely going to get tested for celiac disease. If my walking problems stay away, I will stay G Free. I'll let the lab know so that it doesn't skew the testing.

    Thank you very much for your help! I'm sorry you had to go through what you described; it must have been awful.
  8. mammabek

    mammabek New Member

    an FM diagnosis? it sounds like my legs used to do. later in the day its like they would "warm up" then i'd be ok. the symptom did pass and only shows up occaisionally now...for me it was just amother FM thing..doc said he felt it had to do with lactic acid buildup and prescribed magnesium. the problem slowly decreased as i stayed on the magnesium.hope maube this might help
    blesings
  9. twitcher

    twitcher New Member

    Yes, I have this. It has been present for over 2 years. It is one of my most disturbing symptoms. I have seen 6 neurologists, had every neuro test known to man, including a spinal tap. Every test was normal. I don't know what it is. I have improved on antibiotics. I am on the Vanderbilt protocol. It treats cpn, lyme and I think mycoplasma.

    Twitcher
  10. Jackie41

    Jackie41 New Member

    The leg weakness was my first symptom. I tried a cane but it didn't help much because both legs are affected. I didn't want to use a walker since I was only 26 at the time, so I got a second cane and found that 2 worked better. Afte a few months using 2 canes, I switched to forearm crutches. These work much better and I've been using them for several years now.
  11. all2sweet

    all2sweet New Member

    I know it has been a while since you posted this question. I was wondering how you were doing? What you did that helped? I am right now dealing with the same issue. I even went to Mayo Clinic and they said there was nothing wrong. However, I was still determined to find out. I decided to work on my diet thinking that might help. After A LOT of trial and error, I determined that flour caused a majority of problems. Now, whenever I eat flour again, I have severe leg weakness issues? I know Celiac's disease came up in the discussion and I was wondering how that test turned out for you. Please let me know. &lt;BR&gt;
    &lt;BR&gt;
    Heidi
  12. Doober

    Doober New Member

    in the legs, but I also get it in the arms as well from a lot of repitituos activity.&lt;BR&gt;
    &lt;BR&gt;
    Like for instance, if I was washing dishes, after awhile, I have to stop to let my muscles relax and regather energy.&lt;BR&gt;
    &lt;BR&gt;
    I notice after walking for a long period, uphill and stairs, they get to the point where the sort of stiffen and feel like they will seize up?&lt;BR&gt;
    &lt;BR&gt;
    I have mentioned this to my DR with nothing said in return. My fear is that they will seize up to the point where I am sort of muscularly paralyzed. &lt;BR&gt;
    &lt;BR&gt;
    FYI - I am a 40 YO male, so you are not alone.
  13. jd9922

    jd9922 New Member

    I do believe that diet and food reactions cause the majority of autoimmune diseases but your symptoms sound a lot like Myasthenia gravis (which is probably caused by something in your diet (like gluten or lectins).
  14. Spacey

    Spacey Member

    I often feel like my legs are really heavy and it takes a lot of effort to walk around. I also have a lot of fatigue. I have got this on and off for years. It's tiring. Spacey
  15. jole

    jole Member

    I have FM/CFS and have horrible fatigue. Overdoing a bit one day will put me in bed the next, and shopping..well, the walking is nearly impossible. Hubby does the back part of the store, I do the front then I'm out the door while he checks out. That totally has me in bed for two days following.&lt;BR&gt;
    &lt;BR&gt;
    As to the leg weakness, it's always there, but as you say, everything seems better in the evening. I also have knotted muscles in thighs, arms, upper back, shoulders and neck, with severe migraines at times. Do you have pain or just the fatigue? &lt;BR&gt;
    &lt;BR&gt;
    If it's just the fatigue, it definitely sounds like CFS, and your doc was right by running all the tests to rule out anything else. If you have pain along with the weakness, It sounds more like FM.&lt;BR&gt;
    &lt;BR&gt;
    I know some people do better with a gluten-free diet, but I went on the Atkins diet years back for 6 months, with nothing but meat and veggies, and gradually started adding back foods. Never did I notice a difference in the amount of weakness/fatigue/pain levels. Each of us are so different! Have you seen a Rheumatologist? Some are good, some are not. I just (after 12 years of this) found one that truly understands FM/CFS, and it nearly made me cry. I hope you find someone who will help....hugs