5 replies to this topic

[tamfromtn]

Hello, I have been a self reliant quad since 1993. My children are grown and now I live alone. I got the metronic pump around 95 with baclofen and moraphine. My spasms were extremly bad and the pain in my legs and feet were so bad I thought I would go crazy. For the last year I've had to keep turning up my pump to get more baclofen. Last week I went in for a fill up and was informed that I was at the maxium dose, no more increases. My spasms have been so bad the last couple of months that I have to have help 7 days a week getting dressed and in my chair. Once I'm in my chair I'm alright. I know they are only going to get worse and that scares me. I'm mad because the dr should have told me a year ago that I was getting close to the max, maybe I would'nt have turned it up every time I'm super depressed, is this the end of my self reliance, will I go down hill for now on?

[Snakeye]

I'm truly sorry for your troubles...Sounds like you will have to adjust, try something differnt or learn to live with the crappy hand that's been dealt ya....Lots of ups and downs with this condition and it's the shits when the downs outnumber the ups...Sometimes it seems like all we have is the pain or at least that's all we can think about...It can overwhelm ya...You have my sympathy and good wishes, whatever that's worth..

[davjed]

I can identify with your fears as I fear the loss of my independence also. Can you ask about alternatives to baclofen? Please don't stay depressed, find something to get you through this. All I can advise is to take it one day at a time. Everyday is a new challenge. It gets harder for everyone, but for us it comes faster. Best wishes to find a solution for everyday........

[pinkcloud]

Hi

I am totally with you that doctors really need to assess us who do better to know the worst possible case scenerio so we can preserve what we got.

I reached the stage where like you, there was no pain relief at all - in hospital just before the operation when i was took off morphine pump for a long wait in the ct scanner.Giving me general anaesthetic dosage didnt work - they had to bang more in before I went under.

Again recently again I reached this level.

and also during having botox.

Difference is I knew this would be temporary...thats all that kept me going as i wished to die at the time to escape the pain, yet instead thought of me sons, wanted to live again and passed out in shock. Except for botox, then i just screamed.

I realised that even all i am on now dosnt touch the pain, in time i'm sure it will get worse,aging can do this. I'd rather be mostly bed ridden now than more drugs and no more to possibly have in the future. I know this works for me as i went cold turkey post op - lived in agony, let me natural body pain responses work again...I'm glad i did because compared to cold turkey...this is bearable.

I dont know you, yet me heart goes out to you, i hope some other stranger, in a heathcare setting can show you kindness too and try anything to help you. This did happen to me..and why i help others now. Please do share how you get on.

Edited by pinkcloud, 05 July 2011 - 05:56 AM.

[topperf]

Someone mentioned Zanaflex in conjunction with baclofen - you've tried it?
Hang in there.

[Millard]

tamfromtn, on 05 July 2011 - 01:01 AM, said:

Hello, I have been a self reliant quad since 1993. My children are grown and now I live alone. I got the metronic pump around 95 with baclofen and moraphine. My spasms were extremly bad and the pain in my legs and feet were so bad I thought I would go crazy. For the last year I've had to keep turning up my pump to get more baclofen. Last week I went in for a fill up and was informed that I was at the maxium dose, no more increases. My spasms have been so bad the last couple of months that I have to have help 7 days a week getting dressed and in my chair. Once I'm in my chair I'm alright. I know they are only going to get worse and that scares me. I'm mad because the dr should have told me a year ago that I was getting close to the max, maybe I would'nt have turned it up every time I'm super depressed, is this the end of my self reliance, will I go down hill for now on?

Have you been to a pain clinic? If not, they could help you a lot with the pain. My niece who is suffering from autoimmune disease, (osteoporosis, lupus, fibromyalgia, chemo for liver and kidney) goes to a pain clinic. She still has a lot of pain but she can manage to get up and be active almost all days. I hope you can get relief very soon.


Good luck.