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Old 10-18-2004, 03:55 PM   #1
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toelle HB User
So much pain, So little hope

Hello everyone, It's been a long time since my last post. I'm still in pain every day. I injured my back when I fell during aroebics class last Jan. 6, a day that changed my life forever! Since then I have had a microdisectomy, physical therepy, cortizone shot, 5 acupuncture sessions, and the lidocaine patch. Nothing has helped take away my pain. Even the Lortabs dont do much. I do get some relief from Xnax. I take half,1 mg. in the morning and another half in the afternoon around 4:00 and then a whole one at night to sleep. This is no way to live! I am so worried about what all this medication is doing to my body but I cant stand the pain without it. I force myself to walk 2 miles every morning and do 1/2 hour of back stretches after the walk. The pain specialist that gave me the cortizone shot said that no amount of exercise would help my pain because it's nerve pain but I do the exercise anyway just because I feel I am doing something pro-active for myself. I'm starting to realise that this pain may be with me forever. My husband says I've got to keep beleiving that some day I will get better but it's getting harder and harder to have hope. I try to keep as busy as I can considering the pain I'm in since it sometimes helps me get my mind off the pain but sometimes I'm just in too much pain to do much of anything but lie on my good side with a pillow between my legs and just hang on. Is there anyone out there who has recovered from nerve damage? If I could just know that someday my pain would get better I would'nt get so down. It's hard to keep on hoping. Toelle

Last edited by toelle; 10-18-2004 at 03:57 PM.

 
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Old 10-18-2004, 05:57 PM   #2
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AlSmith HB User
Re: So much pain, So little hope

Toelle, have you tried something like Neurontin for your nerve pain? I had a micro-d about 9 weeks ago and afterward I had really bad pain in my foot. My neurosurgeon put me on it and it has made a huge difference for me. I hardly notice my foot now. It makes me a little dopey from time to time but that is a fair exchange for me.

What ever you do, don't give up hope. If nerves are going to heal, it can take years. I disagree with your pt when they say exercise will not help. For one, it helps you feel you are doing something to heal. I also think that by increasing blood flow to your injured area, it may help in the healing process.

Take care and feel free to vent here anytime you need.

Alan

 
Old 10-18-2004, 07:30 PM   #3
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injured betty HB User
Re: So much pain, So little hope

Ypur PM might be right about the pain and exercise but he is not doing you justice. If I were you, I would switch out my PM.

If you don't exercise, your muscles will atrophy. Then you would have more problems. I would fire him.

I was going to PT until today. I decided to fire mine and find another one. I had been doing stretches on my own, Yoga. He told me to stop all stretches and to only do the Cobra, which is the one where you lay on your stomach, raise yourself up on your hands, (placed directly under your shoulders), and hold it for ten seconds. I do these four times a day. He told me not to do anything else. If I stick to this plan, he thinks that my pain will go away. Yeah, right. Meantime, the rest of my body needs to stretch. I was going nuts not being able to stretch. I felt tight. Too tight.

Nerves repair themselves, usually, this is my understanding from reading a lot of web sites. There can be permanant nerve damage but they are finding new pathways. That is what they were doing for Christopher Reeves when he passed away. He was supposed to be paralyzed for life. But, he was able to get movement back. He said that he did this with determination and visualization and faith.

The Lidocaine patch is a joke. My primary gave me one too, or should I say that I had to buy them, 12 of them, at $36 co-pay. The pharmacist thought that the doctor was a kook and I had to agree. It is for surface pain. I think that some pharmacuetical salesperson somewhere is getting a huge kickback for talking doctors into prescribing these things.

Alsmith is right, Neurontin works for a lot of people. It takes some getting used to, but if it works, it is great. I had to quit using it as I had to drive a long ways to work. Ask your doc for it.

They are always discovering, inventing new meds. Hang in there. Which nerve is it? There has to be someway to help out. I don't know if you live in one of the states where pot is legal, but we do, and some of my friends swear by it. Ask your PM.


 
Old 10-19-2004, 01:31 PM   #4
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toelle HB User
Re: So much pain, So little hope

Thanks for the posts everybody. It really helps to talk to you all. Yes I've been taking Neurontin ever since I had the surgery last March. Cant say it has helped much if at all. It's not as though I cant function. I can do a little in the morning but I always pay for it later in the day. When the weather changes, like when we had the hurricanes, or the due point is high it hurts really bad all day. Today I was able to go out painting with my artist friends and then go out to lunch but by the time I got home my pain was bad; burning in my back and down my leg. Someone mentioned marajuana. Do you mean medical marajuana? I dont like the idea of inhaling something into my lungs. Right now I'm having a big glass of wine and it is helping. I never drank much at all before the accident but now I'm having a glass of wine almost every day. It does deaden the pain for awhile. I just got a message on my phone when I got home today that my nerou wants to do another MRI on Oct. 25. It would be nice to know just what the heck is going on with my back but at the same time I'm scared that more disk material has leaked onto the nerve and that he will suggest another back surgery. I would really have to think long and hard before I would go through anything like that again. The last surgery was hell! I'm signed up to do a couple street art shows the month of Nov. and dont' know how on earth I'm going to get through them. My husband and a friend say they will help me but they really want the artist to be there. However I really need the money and have already paid the entry fees so I guess I'm comitted to them. Wish me luck! Toelle

Last edited by toelle; 10-19-2004 at 01:34 PM.

 
Old 10-24-2004, 10:03 AM   #5
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SpinalMalady HB UserSpinalMalady HB User
Wink Re: So much pain, So little hope

Hi Toelle:

Friend I know what you are going thru! I m only in my 8th week of constant
pain, but it is so frustrating....there are times I don't know what to do. I was
so active before, I walked 2 miles everyday, now I can barely even walk. I have a ruptured disk at L5 which is sitting on the root of the S1 Nerve. My pain is in my right thigh, and my BUTT! I try to stay positive, I am still working, (I teach an Interpreter Training Program at a Community College), because I figure I'll be in pain at home too.....and my students brighten my day and help keep me up. My problem is when I get down on myself. At this point, I [B]DON'T WANT[/B] to do [B]ANYTHING[/B] that would hinder my treatment progress. I'm on treatment #6 of 20 Vax-d treatments, and seem to be progressing quite well. Pain level is down from a 9-10 to a 5-6.

I get depressed at things [B]I CAN'T [/B] do. Things like clean house, or cook, or walk my 2 miles.....my hubby refuses to let me do anything...and I'm not used to this. I've always been very independent, and sorta "ROCK of Gibralterish" (sp?) if you know what I mean....but by the same token, I don't want to do anything that would set me back.

Last night I sneezed 3 times in succession, and the pain was unreal....I cried for 1/2 hour. Then could not go to sleep, even with the pain meds my doctor has prescribed. I got about 3 hrs sleep last night.

I'm trying to keep a positive outlook, though I agree at times it's very hard. I feel useless, worthless, and very dependent on others. I HATE those feelings. I am keeping a journal to help deal with my feelings....and that has helped...Also, having a wonderful, supportive Husband and Daughter are great outlets as well.

I'm praying for you, that your pain level will decrease to a bearable level or dissappear, and prayers for all on the boards....and for those who are not believers in prayers, sending positive energy your way!

Keep your chin up and know that you are not alone in this misery!

Hugs hun!

Becky

 
Old 10-24-2004, 12:09 PM   #6
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SusanPLIF HB User
Re: So much pain, So little hope

Hang in there Toelle. I agree with InjuredBetty...I think the nerves can heal themselves in time. The patience part is not easy - believe me I know.

The best things you can do for yourself (force yourself, okay?) is to try to keep a positive outlook that it CAN get better, take the meds when you need them - don't wait until the pain is out of control, and just have faith that your body CAN recover.

I can and do identify with your feelings and thoughts. I have been there MANY times, my friend....and I DON't have the loving support system at home that you seem to. Believe in your body (even when its giving you mixed signals! )....hug your husband.. just BELIEVE. My accident was 6 years ago.. my PLIF was 14 mos ago..and my hardware removal was 2 mos ago... my pain went from 8 to about 2-3. I think its getting better all the time. Sometimes the weather flares it...sometimes not. Who knows why. But.. just believe it'll get better. The mindset alone does wonders.

Hugs to you,
Susan

 
Old 10-24-2004, 06:35 PM   #7
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carol632 HB User
Re: So much pain, So little hope

First, toelle, let me say that I am a "veteran" of the back war. I have been dealing with back pain since 1981 and believe me, there is always hope!!

If you suffered nerve damage, it may help to know that the nerves may take as long as 2 years to regenerate. On the other hand the damage may be permanent. I honestly think that if your first surgery was pure hell (what kind was it?) then you should be looking into finding a different surgeon. I have had 4 surgeries on my back and though 2 of them were rough, I recovered and have never thought of them as so hellish I would not do it again if it were genuinelly needed. I just don't think you have received the proper care. How many mg of neurontin are you on? Some people need a really hefty dose. On the other hand, perhaps a different med would work better for you such as topomax. Your pm also sounds like he needs replacement, as he doesn't seem to be trying very hard to control your pain. There ARE things that can help nerve pain such as nerve blocks. Also, you should probably be on some kind of pain medication, especially for the worst of times.

I am glad you are having a new MRI....it might answer some questions about
what is going on and what needs to be done. In either event, I would be looking for a new surgeon and pm to help you.

And remember, don't give up hope. I have been there many times, and somehow, something is found that helps and renews my well of strength.

Carol
__________________
2 lami's, 3 fusions
bone spur removal
cerv. fusion, 1 level
morphine pump

 
Old 10-25-2004, 07:37 PM   #8
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injured betty HB User
Re: So much pain, So little hope

Carol:
I was just reading about morphine. That is the cadillac of pain control. Everything else just interupts the pain or lightly coats the nerve endings, morphine coats the nerve endings and you are basically pain free. So, how do you make sure that you pay attention to things that are happening in your body if your nerve endings can't feel it? You are the first person that I have talked to with a pump and wondered how it works for you. Everything else that they do, PT, cortisone, tens, etc, does not address the nerves like morphine does. Does it really work for you? How do you determine the dose? I read that you can have one implanted that does all of the dosing for you. Does it effect your entire body since it coats the nerve endings?

I am just curious. I had thought about trying heroin just to see how it worked. From everything that I had read, coating the nerves is the way to go. I had thought about the tens unit but it just interupts the pain signals that are going to the brain. It is a pea shooter compared to morphine.

 
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