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Thread: Severe muscle atrophy. Feeling scared & alone

  1. #1
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    Severe muscle atrophy. Feeling scared & alone

    Hi,

    I'm not sure if I posted this in the right section. Let me know if I should move it.

    I'm a C6/7 quad and my injury was back in 2001. I suffer from both muscular skeletal & central nerve pain, which have ranged from manageable to severe over the entire post injury period.

    Due to the pain I've not always been as active as I would've like to be. About 4 years ago I realised that I was putting on weight in the stomach region and I decided to do something about it. Unfortunately I went about it completely the wrong way and decided to skip meals and eat very little.
    As a result all I did was loose a large amount of muscle mass (but typically not the belly). Since then I was unfortunate enough to get sick with gastroenteritis resulting in me shedding even more muscle mass.

    What I am left with seems like just skin and bone on my legs. My right bum cheek is almost non existent, while my left is not too far behind. There has even been significant more muscle wastage in the areas that aren't fully paralysed such as my hands.

    I am really scared at how bad it is and I feel like I am the only one in this situation. I am now forcing myself to eat as much protein as I can each day, and I'm supplementing this with protein shakes. I'm terrified of missing just one meal as I don't have any muscle to spare.
    I googled severe muscle atrophy and looked at the images but can't find anyone as bad as me. Is there anyone else out there in the same situation as me? I'm feeling very depressed, alone & frightened.

    Thanks,
    Luke
    Anything else is a bonus

  2. #2
    You did not say if you have a complete injury or if it is incomplete. Do you have use or control of any of those atrophied muscles? Building muscle mass requires more than just eating a lot of protein. The muscles must be exercised. If you have control you can start an exercise routine. If not FES (functional electrical stimulation) might help a bit. However, other than those things there is not much else you can do. Your attempt to lose your quad belly was a waste. Quads and high paras develop a big belly because they do not have use of their abdominal muscles. As a result the abs atrophy and leave nothing but elastic skin holding your organs in. When you sit gravity pushes your organs downward and pushes your belly skin outward.
    You will find a guide to preserving shoulder function @
    http://www.rstce.pitt.edu/RSTCE_Reso...imb_Injury.pdf

    See my personal webpage @
    http://cccforum55.freehostia.com/

  3. #3
    Super Moderator Sue Pendleton's Avatar
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    I would see your regular doctor or a physiatrist type and get some blood work done and discuss your fears. Too much protein all at once can make your kidneys give you grief. Like 55 said, you need some exercise to help create actual muscle mass. You might discuss seeing a nutritionist once your blood tests are back to get an idea of how many calories you need and how to get the correct amount of protein and vitamins and minerals. You might ask if a rehab refresher might be in order. That's like 10 to 15 days inpatient to learn a new exercise program and go over ADLs you may have not achieved recently due to weakness. This can also be done as a day program depending on where you can go and cost/insurance resources. For now, try to spread your protein and any vitamin supplements over 3 to 4 smaller meals as the body absorbs things better in smaller doses.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  4. #4
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    Thanks for your replies. I'm incomplete but have no movement below C6/7 level. I do have sensation but my nerves are hypersensitive, meaning that light touch in some areas can be extremely painful. I have a regular burning sensation similar to pins and needles but very painful, running down my entire left side. Using FES only aggravates this as well as the hypersensitivity so I have to rule it out as an option. It's really frustrating as I bought my own moto med and FES system, which I used for a couple of years after my accident, before my sensation returned.

    I'm aware that eating protein alone won't make my muscles return. As I have no movement in my legs and bottom it isn't possible for me to retrieve my muscle mass.
    My increase in protein is to prevent the loss any more muscle mass.
    Thanks for the warning as I wasn't aware that a high protein diet can cause kidney damage. I will definitely speak to my GP when I see him next week.
    Anything else is a bonus

  5. #5
    Hold on. Isn't your muscle atrophy from your condition - paralysis? Muscles without innervation disappear. You say you have no movement in your legs. That is why you have no muscle mass. The only people with any muscle mass in your case are those with spasticity , and those involuntary contractions prevent total muscle atrophy. I don't see you getting any of your muscle back.

  6. #6
    Super Moderator Sue Pendleton's Avatar
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    FES can help rebuild some muscle from studies I read way back. If the electrode area hurts afterward have you tried topical treatments? Moisturizer helps the burning in my feet as did Lidoderm parches. Lidocaine salve in limited areas might allow you to try FES again. Even electrodes and the amount of juice has changed over the years. But yes, muscle spasms are not always a bad thing.
    Courage doesn't always roar. Sometimes courage is the quiet voice at the end of the day saying, "I will try again tomorrow."

    Disclaimer: Answers, suggestions, and/or comments do not constitute medical advice expressed or implied and are based solely on my experiences as a SCI patient. Please consult your attending physician for medical advise and treatment. In the event of a medical emergency please call 911.

  7. #7
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    Hi,
    I don't have any voluntary movement in my legs but I do get spasms, well I did until a few years ago. Now the spasms have stopped. I had already lost most of my muscle mass before they stopped though, due to the change in diet.

    Thanks for the tip about the burning/pins & needles after using FES. Unfortunately I still can't use FES as it seems to wake Up my spasms and all the muscles in my legs started contracting involuntarily for a few seconds at a time, randomly changing muscles, one after the other, in both legs at the same time. They continued doing this day & night for about 2 months after I used FES even though I was only using a very low setting, I didn't had the pads turned up too high. As I have sensation and can feel my muscles contract/cramp it was extremely painful and not something I'm ready to experience again.

    I know I can't regain the muscle so I'll have to learn to live with that. I was just hoping to hear from other forum members that have bad atrophy. Right now I feel like I'm the only one.

    Anyone else it there with significant/severe muscle atrophy?
    Anything else is a bonus

  8. #8
    When the muscle is not used normally it will atrophy. I don't know of anyone with weakness or those who just don't use that this doesn't happen to . Some more noticeably than others but it is common.
    CWO

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