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Thread: Pain has taken my life over..

  1. #21
    Senior Member Stiggy's Avatar
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    Its been a long night..A long night.Going to make some coffee now..its almost 6 am.maybe a cup of coffee will help..God Bless Stiggy

  2. #22

    Stiggy

    Try to find your way into the chat room if you can at night..recently I had a night like you described, and I found a friend in there who distracted me enough to get through. I would love to have you "drop-in" sometime, as would some of our other 'regulars'. Sometimes a distraction can help to take the edge off don't you think? So CHAT ME!

    Mary

    I am so far behind I think I am first....

  3. #23
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    Stiggy, you've got to get some help for this, and SOON. Your doctor is full of BS. Of course the pain is in your head, all pain is. Too many doctors think if there isn't a bone sticking out through the skin or something, then their job is done. I had a bout of horribly painful spasms last year for almost 6 months. The pain would build to a screaming white-knuckled 10 in less than a second and would hold there for about 15 seconds. This happened every 20 minutes over this period, day and night. Luckily my doctor was very understanding. I was taking neurontin, baclofen, and hydrocodone and it helped to the point that I could sleep a bit at times. My doctor was considering morphine or methadone as the next step. Luckily they found that I had a deep pressure sore on my ischium that didn't show up on any tests, and did flap surgery to repair it. After healing from the surgery, the pain has decreased to a bearable level, although I still take the neurontin and baclofen.

    Marquette has a wonderful SCI clinic with excellent doctors. I go to Dr. Frederick Maynard. He's a real gem, and very knowledgable and understanding. Unfortunately, we're about a 6-7 hour drive from Saginaw. I have no personal experience with the U of M hospital in Ann Arbor, but I've heard that they are very good. There must also be someone in your area that could be better than the doctor you have now.

    Do you have a problem with transportation or finances? I would suggest that you contact your local Independent Living center and talk to someone there. They may be able to find a volunteer to drive you and they can also help you find sources for financial aid. I'm a board member of our local center, and we do this for people all the time.

    Do you have someone to advocate for you? The combination of SCI and grinding pain can easily bring on severe depression and apathy. Confide in a relative or friend and ask them to take charge of making the phone calls and setting up appointments. In your condition, you may find it very difficult to chase down all the leads and be assertive.

    Please take action soon. No one should have to suffer to the degree that you are without help.

  4. #24

    Stiggy...

    I can't do a thing about your pain except pray for you...and I will do that...

    Meanwhile...I know you had a rough night if you saw the sun come up before you shut your eyes for sleep...

    Take care, friend! Be kind to yourself...

    And NEVER give up hope!

    Teena

  5. #25
    Senior Member Stiggy's Avatar
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    You all are so very kind..last night was much better,I finally got to sleep about 730pm.I called my Doctor an shes out till tuesday so I guess I`ll wing it till then.I go to the UofM on dec 20.Hope he will help me out.Thank you all for your advice an preyers.I know you all must have you own problems an im sorry im not much help right now!Ive decide if it gets that bad again im going to ER.Thats about all for now..Take Care an God Bless Stiggy

  6. #26
    Senior Member Stiggy's Avatar
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    I want to wish you all a Happy Turkey Day..I need some info on a drug called Pentazocine.I understand this drug attacks pain in the spinal cord.Well thats about it..long night last night!By the way,Anyone have problems with ms when you lie down.I seem to do better in my wc but when i try to sleep them muscles kick right in..Gets bad! My whole family is coming down for the first time since my post..Going to be a hard thing to face!!! Well thats about all.
    God Bless Stiggy

  7. #27
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    pain and spasm

    I almost feel bad responding since I've told my story so often. I'll keep it short. I had horribly painful spasms in stomach & legs for 14 months-nearly constant for the last 4. Had no sleep day after day. BP would hit 240/150 & temp would hit 103+ from exertion, not infection. They were better sometimes in chair or in fetal position with fan blowing in face to cool off but I had to hold my legs to my chest and fight them. After many trips to ER, some by ambulance as I couldn't drive.Finally an ER Dr.discovered that 50 -75 mgs of IV Demerol gave near immediate relief for 3-4 hrs.Finally got permanant relief with baclofen pump. Like you most doctors said I had no pain because I was paralyzed and therefore, no feeling.I now have tolerable pain,still very little good sleep, but Dr. recently increased fentanyl patch dosage to 125mcg's. Hope you find help soon.WR

  8. #28
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    What about Massage Therapy,

    My son has a C5 injury with alot of pain. He does take Pain killers usually 1 a day. But when we had him getting massage and another pain therapy called I( myal facial)I think. Or something like that. Anyway he would go a few days with almost no pain and then it would slowly come back.We had the therapist come to our home. It was 60 dollars an hour and he loved it. Then we ran out of funds.Now we have funds again so we're looking at getting her back. He did it twice a month.I'll pray for your body to rest and be at peace.I know when my son is sad then I'm sad too.When he hurts I hurt. It hurts to know you guys have to suffer this stuff. May God grant you some relief in body and Spirit. God Bless.

  9. #29
    Senior Member alan's Avatar
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    Pain completely owns my life now. I'm not happy about it.

    Massage and myofascial release are on my list of "been there, done that," but others mileage varies, as your post shows. Where is your son's pain? It sounds like it may be muscular, as opposed to neuropathic, and such pain would respond to massage that loosens up the muscles, as well as painkillers.

  10. #30
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    The muscle areas would be his elbows from using his byceps so much without the tryceps, then his shoulders and neck.He doesnt get any Message therapy to far below the level of injury because the Doctors say it could instigate blood clots.His other pain which he gets mainly in his feet,fingers, legs and back are the ones he calls strange pain. I'm sure thats the neuropathic pain.He loves getting his head scratched or massaged.The therapy certainly relieves alot of the pain and I guess it makes the other pain more tolerable.If you've tried it and it doesnt help then its time to find something else but if you haavn't it's a good first option.

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