RSD and Methadone
 

Hello all!

I'm sure many of you have talked about this issue before, but being new here I am looking for input.

My doctor has decided to stop the spinal injections since they didn't enough to warrant a continuation of them. We talked about the tens unit thing they implant into your spine, and I am considering this, though hesitant.

In the meantime, my doctor has started me on 2.5 mg of methadone daily. While I have done a lot of reading on this, and understand that in low doses it can work wonders for chronic pain - I also have some concerns:

1: The stigma of Methadone - having many friends and family who constantly ask what the next step is in my condition, what is the Pain Doc doing - what meds, etc and so on - I am hesitant to say anything about Methadone. Too many people have a bad connotation with it (I was one of them, and I have worked in the Drug and Alcohol Addiction field for over 20 years!). I even told my husband if he EVER says the word "methadone" to ANYONE I would personally kill him and bury him in our pond. How have you folks handled this?

2: The stuff makes my brain feel like oatmeal. I wouldn't trust myself to order take out food from the Chinese restaurant at this point. Does this go away?

3: I have read, and been told by my GP doctor, that Methadone is one nasty drug to be on. It has many physical side effects, and detoxing off this stuff is worse than heroin. I am wondering if this is true at such small doses, rather than the 30-60mg they give Heroin addicts. Any thoughts?

I am counting my blessings to have this forum, and all you wonderful people, to discuss this with. :grouphug:

Thanks all!

Pix

Hi Pix,
I understand your concerns and keeping Methadone to yourself. I would too. But as far as
the spinal thing, I can only say how I think of it. Personally I wouldn't let anyone mess
with my spine.
Call me a chicken but if I can find relief with meds, I'm okay with that.
Try a small dose to keep that brain from the "oatmeal fog".
Good luck with whatever you choose and leave the pond to the fishys...lol

Thank Russell,

I guess working in the field of Alcohol and Drug Addiction makes me sensitive to it. It's amazing what the stigma is in the field, by counselors and other professionals, about Methadone. It's also amazing how little is known about it's use for medical purposes! Perhaps I should take this opportunity to educate people. I'm not sure, I'm a little scared to - but maybe it's part of the road I am being taken down!

I'm on the lowest dose right now - 2.5, but maybe it's the Gabapentin they just bumped up to 2 at night and 1 in the morning. I wake up this way. Will try taking the 3rd pill at lunch and see if that changes anything.

I promise to only keep the fish in the pond! :) My hubby knows how much I love him. LOL

Hope you have better days too, Russ. And thanks for responding!

Christine

Hey Pix!

I had typed up a reply twice and my darn iPad keeps freezing up. That iOS update killed my iPad and wiped it clean, now it is running slow and crappy...UGH! Makes me so mad :mad: So, let me try again!

I tried Methadone but could not tolerate it, which is no surprise since I cannot tolerate anything. If it helps you, then who cares what anyone thinks?? It is hard enough to try to manage this pain we endure, no one can imagine it. I really think it is no one's business what you are taking, but if they continue to ask what the dr is doing and you don't want to share, then don't be specific. Just say dr is trying out different meds at the moment...leave it vague if that makes you feel better. I get it, I really do. I got those reactions from family..."I can't believe you are taking that, I hope you don't get addicted"...and so on. I would just say "if it helps my pain, even a little bit and I am not allergic to it, I am taking it!!" They have no clue how we suffer.

You are on such a low dose, I would lean more towards the increased dose of Gabapentin causing the "oatmeal" brain...but I am no dr, that is just a guess.

As far as the spinal cord stimulator goes, do your research on the unit they recommend and on the dr who would be performing the surgery. The great thing is that they always do a trial so you can test it out first. I had two of them implanted in June 2011, cervical to cover shoulders down to fingers and thoracic to cover from hips down. They were a life saver. I was to the point that I was losing the use of my hands and the SCS gave me that use back. Also helped get my range of motion back in my RSD arm (had bone spur removed from shoulder and it froze when RSD set in). They both helped cut down on the burning pain and the sensitivity. I had to have a revision on the thoracic one 5 months after implant because the leads migrated and the battery site was very irritated (so they relocated that too). They allowed me to work an additional 1 1/2 years...never would have been able to make it without them. Had some issues develop and had to have them both removed this past January. I hate that they stopped helping me because I could really use them right now!! There is a great forum on here for SCS & Pain Pumps, it was soooo helpful to me!!

Good luck to you, hope you can find some relief VERY soon!!
Nanc
:hug:

Thank you Nanc! I really appreciate it! I will continue to do research on it, and also to research the surgeon once I find out who the PM doctor recommends. Great advice! :)

I hate it when computers do that - wipe out things on you. Frustrates me to no end - I can only imagine with your in depth response how mad you must have been! I really, really appreciate you taking the time to make sure your response got to me!

Thanks again!

Hi pix,
I have been on Methadone for almost a year now. I found I could actually think more clearly on its the than other pain meds. Which surprised my doctor as well. Maybe ask your doctor if you should start with a lower dose and slowly increase it. Or combine it with another pain medication to keep it at a lower dose?

I was on methadone for about 2 months at one point, it caused me to be really depressed, i could hardly do anything because i couldnt think strait, the taper off of them was the worse part. i was SO sick. my dose was 5 mg and then 10 mg daily.

I was really resistant to starting methadone too due to the negative stigma of it. I had literally tried every other opiod first.

Methadone has controlled my pain much better than anything else. It's the only drug that helped with the burning pain.

I'm currently on 5mg twice a day and 2.5mg in the middle of the day.

I think the Gabapentin increase is more likely the cause of your brain fog rather than the Methadone. Brain fog is a very common symptom of Gabapentin especially with higher doses.

It's important to only introduce one drug or increase of dosage at a time because otherwise there is no way to tell what is working and what is causing side effects. ;)

I appreciate all the recent feedback! I am seeing my doc tomorrow and have some great advice to bring with me! I am making a list of all my concerns, questions, and side effects -

Thanks again everyone!

Good luck tomorrow Pix...