Not long ago I was referred to a pain management clinic for eval and treatment of my severe chronic PN and overall pain. Normally around 6.5 and peaking at 8+ through out the day.

After several visits to him and referral to a physiatrist for additional eval an more extensive treatment it was decided there was nothing they could do for me since I have a degenerative disease of the cerebellum, atrophy, ataxia, and spinocerebellar ataxia. They tried tramadol, clonazepam, tegretol, hydrocodone, all with severe side effects. Then they wanted to step it up to Lyrica and even try Ketivan (a horse pain killer).

I drew the line in the sand and decided to deal with the chronic pain as I could but live life on my terms vs. being dictated by the meds, their actual and potential side effects. I could die of all kinds of complications from these meds and the dosages I was Rx'd. BUT! I wouldn't feel anything.

It took over 3 1/2 weeks to titrate down and off these meds suffering withdraw. Not a pretty situation. This is definitely the case of the cure is worse than the disease. Ironically, when I explained how I felt about these meds and the terminal situation, every single doctor agreed with and supported my decision.

Sometimes a decision has to be made in your own best interest to live your life on your terms and still be able to experience it without masking it with meds. Is it hard? Yes, but I am "feeling" more of life than I have since I went to the pain clinic.

Just updating you guys on this decision of two months ago.

Dear Craig ~ You are a BRAVE man, my friend! If I thought for a moment that I could tolerate the pain without these pain meds, I'd do the same ~ but I cannot. Even as it is, being undermedicated, I'm about ready to tear my hair out and there are days I'd just rather not "be here." But I would NEVER take any action in that direction.

I guess some peoples' pain tolerances are lower than others. I've had pain since a child, but back then it was sporadic. For the last 25 years it's been constant intractable pain - and my poor doc is trying everything he can to get me to a somewhat "comfortable" place. So far, it's no go - I'm hard to medicate. LOL

But I give you all the credit in the world, not only for having the strength to wean off the meds, but STAYING off. The pain must be aggravating to say the least! Bless your heart ~ YOU GO!!!

I wish you the very best! Prayers are coming ~ take care and keep us updated, ok? Hugs, Lee

Jim plans the same thing Craig. Only he hopes to use medical cannabis in place of the pills. If Illinois doesn't pass it this year, we'll be moving where they do allow it.

Do you mean ketamine?

Yes, you are correct. Spelling and meds are not my strong point. In my case it would be used in a very low dose to support the treatment of pain associated with movement and neuropathic pain, chronic pain. At these doses, the psychotropic side effects are less apparent and well managed with benzodiazepines.

I hope you are able to continue to manage your condition how you want to do it.

There is definitely a feeling of empowerment in taking control of what we can in our out of control predicaments

Hi, and I think you are very brave to try it without pain medication. We all have different tolerances. Good luck to you.

Hi Craig,

Like others, I hope you are able to continue to manage your condition in the manner you wish. However, should you change your mind, for any reason, do not feel bad, or guilty, or that you are weak or have somehow "failed".

I know, and know of, many people who have made the same choice. It works for some, and doesn't for others. There is no success, failure, or judgment attached. Things change, and as you well know, every day is a learning experience.

As a fellow traveler, I am concerned whether you are also apprised of the risks of untreated intractable pain, as the consequences can be as dire as those you're concerned about with the meds.
http://www.foresttennant.com/pdfs/In...inSurvival.pdf
Pages 8-9

I understand well - very well - the "guinea pig complex" you're probably feeling - bounced from doctor to doctor, therapy to therapy, drug to drug - with no answers/solutions in sight. While I don't know the entirety of meds your doctors have had you try, the list you give is a very small part of the pharmocopia available for chronic pain. So should you decide at some point that it is too much, please be aware that there are many more alternatives out there, and that many chronic pain patients do very well on them for years - even decades. While it can take time and trial & error to find the right med or combination of meds for you, they can reduce the sense of suffering and improve the quality of life.

Please understand that I am NOT pro-drug - I am anti-pain. Some pain specialists - and pain clinics - have very different views from each other. We all have to find the right ones for us - just as we do other kinds of doctors.

I support your decision without judgment - including the right to change your mind - but I'm also a realist. Good luck, best wishes, and take care.

Doc

I am seriously considering trying to stop my pain meds because I know somewhere deep inside that I have a problem with them. I take Percocet, Xanax, and use the Fentanyl patch everyday. I also take muscle relaxants three at a time and sleep pretty much 24/7. I think that it's pretty much to escape. Yes, I do need them for the pain control, but I KNOW that they've become a crutch, also. It truly frightens me to ever possibly be without them yet I feel that I am so hooked on them. I've taken all of them for the past 9 years....everyday - and many times everyday. I hope I can make the right decision, yet I can't face having to handle the pain on my own. I'm glad that you were able to work it out.

Hi hippiechick,

When you say "hooked", I hope you're not confusing/equating dependence with addiction.

Have you considered, or would it be feasible for you, to taper your dosages downward just enough to function a little better/more? Might that help you feel better about yourself and the situation?

Doc