I was just wondering how you are able to cope with the pain.

I have been trying for 2 months to go off of my Methadone. I am going to start a series of TPI's this month to try and get my pain calmed down to where I can go off of it. I know it adds to my CFS. When my CFS came back on in Nov. after losing Bill, I also had to go up on my Methadone a couple of months later due to my pain getting worse. I noticed it made the CFS even worse.

It doesn't take large doses of meds to mess with me. I am only taking 5 mgs. of Methadone 3 to 4 times a day and I know other people take larger doeses of meds and can function, I can't do it on this small amount.

I am desperate to get off of the Methadone but every time it starts going out of my sytem my pain level is to the point that I get suicidal. I was wondering how the ones on here that says they went off of their meds managed to do it.

Thanks for the help.

Ada

I have quit in the past, too... was afraid of getting hooked. But my suggestion would be... DON'T!

I never had the pain issues I have now, before I went off my meds. Something went even screwier with my nerves, and my pain level shot through the roof. It has never tuned back down, either. I spend most days at level 9, when 7 was my usual before I went off the meds.

Yes, I feel stoopid most of the time, lol. However, I would trade it all back for the lower pain level, any day! I can function much better while high on morphine than I can while hurting so bad I can barely speak, let alone think.

Ada I agree with rogue, if you dont really have to, dont go off the meds.

As you know I went cold turkey Jan 2nd 2007, a date that is burned into my memory. It was a life changing event. There are only a few dates that you never forget, getting married, quiting drinking, and going cold turkey. I wish I could say I remember my kids birthdays, but 6 of them and RSD has made that rather difficult lol.

Anyways.....there is not a day that goes by that I know I would be better off on the meds then the way I live now. At least with pain meds I would feel like getting out, taking showers, visiting family and friends, and have some rather good days every so often.

I thought that once my body got used to not havng them I would kinda get back to a kinda normal existance. NOT!
There are more days of higher pain, and depression is far worse too. One thing you should know when stopping the pain meds like methadone. The pain will be worse for a month or so, but it will gradually lessen until it finally gets to its lowest it will get.

You see your body is so used to relying on the methadone, and not having to do any pain fighting on its own, that you will feel the whole amount of pain. It takes a month or so for your body to regain the ability to fight pain again. Think of it like muscle use, when muscles are not used for an extended time they get weak and dont work to good at all. The muscles have atrophyed.

This what happened in your brain, the pain fighting mechanism has atrophyed so to speak. Once off the pain meds it will come back, but will be a slow process like muscles coming back.

I know 5mg of methadone doesnt sound like a lot, and it isnt. But taking the dose a few times a day makes it say 15mg, or however many times you dose. My best friend just lost her insurance a month ago, and is going to the methadone clinic now for her doses. She was taking 20mg a day.

They only lower her dose about 2 to 3mg every 3 to 4 days because her body needs to adjust to the lower dose. Once she gets down to 3 to 5mg a day they say she is ready to stop, but will still go through a time of feeling like she has the flu. It is inevitable, and cannot be avoided in most cases.

All that aside, believe me, I would go back to the meds if I could. Since being off them made me realize why I even started taking them in the first place. There is a good reason for them..........it is called quality of life, and mine isnt to great since coming off the pain meds.

I hope this helps, and I will be prayin for ya

Love ya much!

Hey guys,

Ada is there a reason you want off your pain meds??? Just curious, but if none of my business that is ok too.........I totally understand. No hard feelings 'K?? It's just my curiousity gets the better of me sometimes

My doctor wants me to not go off, just lower my doses over the summer. I am so much worse during the fall, winter, & early spring months. I have Fibromyalgia severely also, along with Sjogren's & between those two they raise the RSD pain levels immensely. (BTW,the pain meds I take do absolutely NOTHING for the Fibro or Sjogren's pain, nor do help when I get a nasty atlas headache either. But they do work on the RSD pain in my feet & hands. He told me why once, but I can't remember what he said *lol*) He wants to be able to give more pain relief during those months by raising my morphine & oxycodone doses then. To do so I need to lower my doses during the summer months. Well so far this summer it has been hard to do. I do pretty well during the day, but sometimes by late afternoon or evening I am in immense pain, so I take my BTP meds (oxycodone) & the extra morphine he allows me. I am up more than I was even a year ago during the day, & have had to take over some of the chores my hubby did last summer. He is 10 yrs oilder than I am & he is slowing down & due to his back some things are just harder for him to do. Well everything is just plain HARD for me to do & NO ONE here seems to get that.

I do understand what the doctor is trying to do. And to be honest I agree with him. I am just going to have to let some things go longer before I do them, but then it takes me longer to do them too. Caught between a rock & a hard place here is all it amounts too.

Funny thing about the husband tho , if we go camping for a few days, then there doesn't seem to be anything he can't do. Sorry guys but, well MEN!!!

I know to lower them the pain is going to be rougher. Try getting that thru my husbands head when he wants to go camping & I don't feel like it. He says he will go alone, but he will be out in wildernss territory almost so that scares me. He is less healthy than I am, but can't seem to get thru to him just cause he takes for it all, doesn't mean something can't happen to him. No cell phone signal there at all. For like 3 hours or more there is none when on the road getting or coming from there either.

Anyway, good luck Ada, I dread just lowering my pain meds I would not want to think about getting off of them all together. BTW I am lucky in that they don't cause me to be "high" or "giddy" or "goofy". They just help with the pain
no matter what dose of meds I take. They do make me more sleepy sometimes.

Love ya's,
DebbyV

The only reason I want to go off of the Methadone is because it makes my CFS worse. It doesn't make me goofy or anything like that. No one can tell that there's anything wrong with me or that I am on anything.

My Dr. would like to see me off of it so I would feel better with the CFS but he lets me have what I want. He wrote me out a script last night on it. He never mentions me going off of it, I just wanted to do it.

I see an Immuneologist next Wed. so I am hoping they can find out what is wrong with my immune system. If they can do something for the CFS then I won't mind being on the Methadone so much. I love it for the pain. It's better then any pain med I have been on. Like you, my winters are worse. In the winter time, my pain is 10 times worse. I am dreading another winter like the one I had this last year.

Allen, I do know what you are saying about not having the meds. When I go off of mine, I can't walk, think, nor function. I remember when that happened to you and I was hoping you would be able to get them back. I honestly don't know how anyone goes without them. I think I would be out on the street buying some if I couldn't get mine. I even told my Dr. that and I've never done anything like that in my life.

I always worry about not being able to get my Methadone but he says as long as he's around I will have what I need. When he semi-retired, I paniced but he reasured me that if he only worked one day a week I would be one of his patients along with Bill at the time.

I absolutely know what all of you are going through that can't get your meds, and it bothers me when people in our shape can't get the help they needs.

Thanks for explaining to me about the Methadone and going off of it, I didn't know that. I just don't know if I could last a month until my body could fight the pain. I have tried 3 times to go off and the pain is overwhelming. As I said I honestly get more suicidal from the pain.

Rogue, you might be right about the pain getting worse, that could be from the stress of going from having the meds to help it and then having nothing to help it.

We turned my VNS up yesterday evening. I'm hoping my depression and stress will get better and then in turn help my pain some. So far it hasn't helped at all but I'm not giving up on it.

Thanks for the help guys. I love all of you.

Ada