Regina,
That's a good question. The pain is definately the most prominate symptom I live with and on a day to day basis. And on a scale of 1 to 10 it's mostly about a 6/7 but there are days that it is so bad it takes my breath. All I can do is pray to go home and get my legs up, and curl up on the bed. Those days are a 10. But then just like this weekend, I really had a great weekend. I really only hurt late in the day after being very active. I had a student doing a internship under me last year that was a low para. He and I were talking about the pain factor and decided that if paralysis just ment not walking, then it would be a piece of cake. It's all the other stuff like the bladder and bowel problems, the constant pain & burning in our legs, loss of mobility or ability to do things around the house that we know we could do if we could just stand up. But I could and have delt with all of it for a long time and as I said, I have realized hey, I have survived!
Larry in Oklahoma who has only four puppies left, do you need one?
Larry Throne, MSW
From: Regina Rummel <[EMAIL PROTECTED]>
To: Larry Throne <[EMAIL PROTECTED]>
Subject: RE: [TMIC] Venting!
Date: Mon, 26 Feb 2007 17:34:51 -0800 (PST)
Larry and Kevin,I just read your messages and am curious about one thing. If I were to ask you on a scale of 1 to 10 which are the symptoms that are of most concern to you. The reason why I ask is because it sounds to me that pain would be on top of your list. If you had no pain, how would that change your attitude towards this disease?Regina
Larry Throne <[EMAIL PROTECTED]> wrote:Regina & Kevin,I am so sorry you guys are having to deal with so much pain. I wish I had an answer for you. I take cymbalta 120mg daily to "cope" with my pain and discomfort. As I recently shared with my doctor I don't feel like the cymbalta really does anything for the pain it just gives me enough "something" to live with it all. It seems like the older I get, the more I hurt. There is no magic cure, especially for us folks with neuropathic pain. I took neurontin and even topamax off and on over the years. They helped for a while but after several years they seem to just not cut it anymore.
I gave up on doctors helping with the pain. I have worked with doctors for many years and one of them who is a close friend told me the problem is that other than Rx a bunch of narcotics most doctors hate to hear about pain. If they can't fix it they don't want to hear about it. I can't take the narcotics any more due to dependency problems and besides, they really didn't stop the pain. They just made me loaded to the point I didn't really care about anything. I do have to say that bio-feed back helped some. It really only helped me learn to relax and I'm not sure it does anything about the pain. When I am hurting I get so tense and that leads to irritability, sleepless nights and depression. I know this sounds pretty negative but what I have found is that as the days go by, and I look back. I realize I survived, I made it, I'm okay. I still hurt but I'm okay. And as the old saying goes, "God won't give you more than you can handle, I just wish he didn't think I can handle so much!" Hang in there, this to shall pass! Keep being vigilant with the doctors to ensure there is not something they can do but hold on, life is really worth it.Larry in Oklahoma where I feel your pain my friends and I wish I could help.
From: Regina Rummel <[EMAIL PROTECTED]>
To: tmic-list@eskimo.com
Subject: [TMIC] Venting!
Date: Mon, 26 Feb 2007 08:53:42 -0800 (PST)
I am sooooooooooooo scared!I AM VENTING. THERE IS NO ONE ELSE I CAN SHARE THE FOLLOWING WITH:Just a few weeks ago, it became obvious that I am getting gradually worse every day. I felt vulnerable using the cane and started using the walker. Following are the latest symptoms:The throbbing, weird, feelings in my legs gradually moved up to my buttocks.Last night, and since then, they reached my crotch...The fatigue is worse than ever. Just reaching in the frig. for water, yogurt, fixing piece of toast or a little salad, cleaning up a few dishes is a challenge (more so every day). I have to sit down to brush my teeth. I can't get dressed without leaning against the bed or sitting down.Standing even holding on to something is difficult.I feel so lightheaded.I don't sleep well and hate starting on sleeping pills.Feb. 13, I lost my appetite and feel slightly nauseated a lot of the time.My scalp and ears are burning and itching more than ever.Sometimes, I think I'm even too tired to be depressed if that makes sense.The sypmtoms that some of you describe seem to come up overnight. With me, it's always gradually, but consistently.I must be honest and say that I don't trust the doctors. The last time I saw the neurologist, she said that we could try the IVIG treatments which didn't do a thing for me. But I sense when I talk to her (even though I think she cares) that there is nothing that can be done for T.M. Today, I'm afraid to get in the tub to wash up and wash my hair even though I do it sitting on a chair.Something is going on with my biological thermostat. I can be freezing and after a while, I'm so hot, I have to turn the heater off.I do the exercises from therapy on my own. They wear me out but I do them anyway because I don't want to atrophy.I saw the rhum. on the Feb. 12 shortly after all this started. She made me stand on tippy toes, and made me do something else holding on to a table, checked my arm strenght, took notes as she said that I was doing much better . She didn't seem curious about my walking in with a walker for the first time since I've seeing her for the past 10 years. It's as if what I was telling her didn't register. She thinks Neurontin has something to do with this and advised me to stop taking it and see the neurologist. I called her the next day to request that she orders an MRI which I have scheduled for tomorrow. The neur. appointment is on March 14.If it weren't for my daughter who lives next door, I think I'd soon have to hire someone to stay with me, or live in a nursing home.I hate waking up in the morning.I made arrangements for my funeral last week.My will is currentI'm organizing all the papers and notes my daughter will need when I die. Soon I hope.I hate this life!
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