I seriously need some answers or help

Discussion in 'Fibromyalgia Main Forum' started by msbsgblue, Jun 22, 2008.

  1. msbsgblue

    msbsgblue Member

    This is not new to me but becoming much much more frequent, almost every night now.

    For some time but only now and then I get horrendous leg cramps. Not like a regular charlie horse, but down the front of my shins, my back side of my ankles and sometimes it grabs by toes and turns them under so tight that I cannot move them with my fingers. Once in a rare while I do get regular cramps in my back of my thigh, inside my thigh or my calf but mostly it is these weird ones.

    Last year my doctor send me to the neuro for testing where they do the needles and the electric shock thing.

    Nothing happened and my tests came back normal.

    These are excrutiating, the ankle, toes and shin ones are so bad that I wake up screaming, but I cannot do anything but wait them out. It does no good to rub them, sometimes that makes them worse. The muscle or ligimate in there gets so tight it stands out.

    I put my feet on the floor but no you cannot stand up. I think sometimes if I forces myself onto my feet they might actually snap or tear.

    Taking Potassium does not help, legs cramp pills w/quinine don't help or eating bananas.

    They are getting worse and worse and more frequent.

    When my illness began 20 plus years ago my neuro and neuro surgeon who saw me in Kansas City was sure I had MS due to other symptoms like numb on one side and more.

    MRI's show no sign on it even last year.

    I cannot have the fluid test as I have a Arnold's Chiari type A or herniation of the cerebelum and they are afraid to pull fluid for fear of more herniation.

    Does anyone have a clue.

    I am miserable, not sleeping much with this.

    Thank you,
  2. Catseye

    Catseye Member

    Are you taking any magnesium and if you are, what type of it exactly and how much? Magnesium is responsible for muscle relaxation while calcium is responsible for muscle contraction. Are you taking too much calcium and not enough magnesium?

    You want to avoid magnesium oxide as your magnesium supplement since it passes through the body quit easily rather than being absorbed. That's why it's used in laxatives.

  3. msbsgblue

    msbsgblue Member

    I cannot tolerate taking either one, my digestive system can't handle them. No mag or calcium for me.

    I am wondering if this could be something besides my FM, I am getting seriously worse.

    SOPHIELYN New Member

    I am new to this board; and couldnt believe when I read this message. My husband looks at me like I am from outta space when he sees my TOES curl under and my veins in the TOP OF MY FOOT protude from the cramps in my shins and top of foot. I have never read any other person who experiences this and would love any info,so if you find out anything please let me know.

    am sooo sorry I couldnt offer any advice, or help you though.

  5. Honora88

    Honora88 Member

    Tong ren has free conference calls for energy healing. When I have mysterious pain I always call in and it really helps.

    They can see the energy blockages and try to unblock them which releases pain and illness.
  6. msbsgblue

    msbsgblue Member

    Check back with me periodically and I will let you know.
  7. kat0465

    kat0465 New Member

    whats this & how do i sign up!
  8. Catseye

    Catseye Member

    What happens when you try to take them? If you haven't been taking them at all, you are probably seriously deficient in them.
  9. Shashi

    Shashi New Member

    Hi, I'm new here, but I had to respond to your post because I've been having the type of leg cramps you are talking about for the last two years now. They are constant and extremely horrible. Mine started in the calves of my legs, but have since spread to my thighs, back, arms, shoulders, neck, and possibly my rib cage on the left side.

    I have also been seeing an MS specialist because all of my symptoms are those of MS, but my MRIs have been normal.

    She prescribed baclofen for my muscle spasms. I started out on 20 mg. a day, but am now, after nearly two years, up to 60 mg. a day. It does help quite a bit, but if I miss a dose by more than 20 minutes, the spasms start again. I'm to the point that I may have to up my dosage soon, as I'm not getting the relief that I once did.

    You might want to check with your doctor about baclofen. I do hope you get some relief soon. I know how very painful those spasms can be.


  10. marti_zavala

    marti_zavala Member

    "I cannot tolerate taking either one, my digestive system can't handle them. No mag or calcium for me. I am wondering if this could be something besides my FM, I am getting seriously worse. "

    Gee, I'm no doctor, but I am not sure why you are looking for any other cause than a magnesium/calcium deficiency.

    Wouldn't this be the first thing you try to fix. There are many ways to correct a magnesium/calcium deficiency other than using the digestive system.

    I would imagine that a lot more in your body will get seriously worse because magnesium is one of the most important substances in our bodies for all sorts of enzyme reactions - not just muscles.

    I think barrowinovations is right, you should attempt to correct this. Sometimes the substances we need the most are the ones we react to. There are other ways. Look at the cramps as a warning call.

    Consider Magnesium/Calcium lotions, injections, IV's, etc, etc.

  11. Rafiki

    Rafiki New Member

    Who is following your for your Chiari malformation? This, alone, could cause a large number of signs and symptoms which need to be monitored by a neurologist. I'm surprised that they keep looking for MS when MRI does not point to MS but has confirmed Chiari Type A.

    I just hope whomever you are seeing is knowledgeable about your condition.

    Peace to you,
  12. bunnyfluff

    bunnyfluff Member

    I had this problem for quite awhile, just like you are decribing.

    If you want advice, here it is from someone that has been there, done that, bought the T-shirt:

    I was initially Dx'd w/ Celiacs, causing malabsorption. I was deficient in minerals, including iron. I had the scope test, where they look at the villi, and they were flattened. So, correcting my diet should have solved my problems, including the joint pain I started to get, etc., right?????

    WRONG! I did get rid of the leg cramps by eliminating wheat and gluten, that happened almost immediately. But my flattened villi were actually caused from Lyme disease. It would take me another 10 years to get to the bottom of the rest of the problems. I never had Celiac's, Fibromyalgia, or chronic fatigue. Although that's what I was told for years. From rheumy's, neuro's, DO's.....and supposedly 'good ones' at that.

    So, now I not only do not have leg cramps, but I also am getting much better in treatment for the Lyme.

    There is a lot of "smoke", but you have to get to the "fire" to actually fix these problems. if you don't figure out what is making you sick, deficient, in pain, all the drugs and suppliments in the world are not going to help you. You're just spinning your wheels.

  13. msbsgblue

    msbsgblue Member

    I had the best neuro in Kansas City and one of the top Neuro Surgeons in the country see me when they found this.

    He said most Type A's don't cause a problem but could as you get older and you shorten. I was suppose to see him once a year but then my husband (now ex) lose his job there and we moved away.

    The Neuro surgeon said that if it caused any problems it might be with me legs and incontinance in bowels. No bowel incontinance. What made me mad is he said the chance was so slight that he wouldn't even go into leg probelms at the time.

    I had several MRI's and an MRA in Kansas. It clearly showed the herniation. My ex took my films and won't contact me or let me have them now.

    Now I have an MRI here and my doctor says no chiari. I know better I saw it when they showed it to me.

    I keep telling my doctor about my leg cramps and he sort of skips over it.

    Another funny thing here in WA is that I have had bone spurs, degeneration and arthritis in my neck as indicated by Xray for years.

    I move up here, they do one set of Xrays and say I have none of that. Well I have seen those Xrays as well, my ex has them too, and those things don't magically go away.

    I like my doctor o.k.otherwise as he does help me with most things I want to try to help me. I don't want to give him up at this time. Because I have WA state insurance I have to stick to one PCP.

    The mag and calcium cramp me to death not to mention my stomach gets torn up really bad for weeks.
  14. Catseye

    Catseye Member

    It's possible you have tried the wrong kinds of calcium and magnesium. If you want to try again, try calcium citrate and magnesium malate. These are easily absorbable forms and shouldn't cause any discomfort. Magnesium oxide is used in laxatives, so that's a form you want to avoid.

    It sounds like you have gut dysbiosis and probably a lack of stomach acid, too. You have to have these minerals or you will face some more serious complications eventually, like osteoporosis. If you want help, see my stool analysis thread for who to contact. Or if you want to try to do some simple things yourself, start with supplementing betaine hcl and digestive enzymes with meals.

    I would start with one 700 mg pills per meals that contain fats and proteins like meat, eggs, fish, etc. Increase by one pill every other day until you experience burning or discomfort and then back off. You have to have acid to break down the fats and proteins.

    If mineral supplements are messing you up that bad, your digestion is all screwy. Betaine hcl is a good start. You can't absorb nutrients properly, including minerals, if your gut flora is off. You sound like you're pretty bad off, you should probably enlist an expert to help you get some tests done and figure out what to do. If you guess, you can waste valuable time and money on the wrong supplements.

    The betaine hcl may make you able to tolerate the mineral supplements - you need to do something quick. Your gut is the problem, but you won't get help from a regular medical doctor unless you get really lucky with one. The last thing you want to do is take antibiotics for it, which is about all they can ever suggest. My expert is curing me and you can fill out a short quiz about your symptoms and get a free phone consultation. Don't make the mistake of assuming your digestion and gut are fine, they aren't. That's the big mystery about our stupid diseases.

    good luck

  15. gapsych

    gapsych New Member

    I am so sorry you are not feeling well. Not fun.

    You say that your symptoms are getting more frequent. When was the last time you saw your neurologist?

    If they are more frequent do you think that getting the tests you had before might show something?

    I think broken sleep is a biggie for us and does help our symptoms. Do you take anything for sleep?

    I am thinking of you and sending healing thoughts.
    Please keep us posted.

    Take care,
    [This Message was Edited on 06/23/2008]
  16. Rafiki

    Rafiki New Member

    How strange. That must be so frustrating. Not having the xrays and MRI must be incredibly annoying! Ex's!!!

    Peace to you,

  17. msbsgblue

    msbsgblue Member

    I think it was about 8-9 months ago that I went to neuro.

    I have WA state insurance so don't know how often I can get tested.

    This really stinks! Then my megs stay sore, I have had leg aches too like I had as a child behind the knees, alcohol rubs is all that helps it.
  18. thenewme

    thenewme New Member

    Hi Pat, I do not have any answers for you but I can tell you that I have been going through the same thing. What happens with me is I wake up in excruciating pain with my whole right leg contourted and turned in while I am asleep on my back. I wake up and am screaming and crying, the pain is across my lower back and hip all the way down the whole leg, I feel like I can not move because of the pain, but I know if I do not try to straighten it out it will not get better, so I do all I can to straighted it out and get out of bed, this takes about 5 minutes and once I am up the pain is gone except for my lower back and hip area so I have to put heat on this for about 1 hour and also take pain med right away, then I start to feel alot better.

    This used to happen a couple times a month, but now is getting worse this week it has happened twice and it makes me not look forward to bed even though I am tired I just wonder when I will wake up like this again.

    I also will wake up with just excruciating back and hip pain about 3 or 4 times a week, it is so strange how this has become the norm for me and if I was not wakeing up in pain it would be strange.People that do not have this dd would freak out if they ever woke up with the pains we do they have know idea what we are dealing with pain wise, I think I am just getting so used to this that it is the norm for me.

    I wish I had answers for you sorry, I am hopeing things get better for you and am so sorry you are hurting so much I will send a prayer and plenty of soft hugs your way
  19. Waynesrhythm

    Waynesrhythm Member

    Hi Msbsgblue,

    I've heard the body can readily absorb magnesium just by sitting in an epsom salts bath. Since you can't seem to absorb magnesium (at least certain kinds) through normal digestion, perhaps this could be a way around it. Epsom salts baths are well known to create a body-wide relaxation as well. I hope you can find something that works for you.

    Best, Wayne
  20. frosty77

    frosty77 New Member

    I've had the same thing for over a year now - also same thing with my hands. I take calcium and magnesium before bed, yet this still happens. Wish I had the answer!