Just curious.......I see where people are taking a variety of meds and say they are helped with their pain. They even have breakthrough meds. Wow/1
Ufortunately I have been on over 30 pain meds at highest doses with no relief. Just curious - do they completely eliminate your pain so you can function normally or do they just make it more tolerable and ramp the level down?
Also, I have no side effects from any meds. I recently took up to 400 mg of topamax with no relief as usual. My dr. would not go any higher. Then I heard another person say they take 1200 a day.
There is a test I learned about on this forum -p450 that tells if your system needs more meds than the normal person. I am hoping to get that test. Then maybe the doctors will allow me to take higher dosages.
Thanks,
Syndey

The lowest I have been on a pain scale in two years would have to be a 4 and I am very happy with that number......after being 8-10 for close to a year anything under a 7 is a Godsend for me! It is whatever you get used to.
I feel better right now then I have felt in over a year and I am guessing it is between 6-7. I don't do well on the anti seizure type meds...like Neurotin/Lyrica, ect. I take a combo of morphine, percocet and valium with a bit of advil thrown in from time to time...and I take omega 3's, multi vit and other suppliments recommended for low carb diets!
HTH!

Hi Syndey,
There is no such thing as complete pain free with CP. The meds reduce the pain and allow some function.
In my case--they keep me out of bed or in my recliner allowing me to do some of the things I like but I wont ever go back to work as a nurse again.

I have limits but I am very grateful to the meds in getting some of my lfe back.
What pain meds do you take?
Bubbi

Junie,
Thanks for your quick response. I am given the impression that everyone is pain free from their meds. I guess that is not the situation in your case. My pain level varies from day to day- hour to hour. It is widespread FM and also RSD. It is totally unpredicatable and ranges from 2-3 to 10. Most of the time it is about a 6- 10.
I also take omega 3. Not sure I am taking enough. I'd be curious to know your supplements and wondering if you think they help you.
Also, I saw you take valium - is that for pain or sleep. My friend takes valium and it is the only thing that helps her headaches and then puts her to sleep.
Thanks for answering my questions.
Can't type much more . FM is in hands/arms also.
Sydney

Bubbi,
My pain man. dr. is at a loss for any more meds. I have taken everyone on the market. I may start hydrocortisone - from my local dr. Pain dr. said "no'- too many side effects. I am so desperate I'm going to take it anyway.
If you have any ideas let me know. Nothing has worked so far.
Sydney

Sydney,
I take Valium for constant muscle spasms due to my arachnoiditis and yes..it helps me sleep. The 15mg daily helps but when I took 10mg 3 x day it helped much better. Plus it is greatly helping my anxiety!
I take super omega -3 formula from good health..it is a mixture of fish oil/flax/borage and I take 2 capsles daily and have for 3 years...and anytime I stop taking them I end up sick (flu/colds/ect) and pain seems worse. I buy mine from Dollar General fairly cheap and they seem to work well!

I have been on pain med for 6 years. They make it more manageble, but definitely not gone. I have no quality of life, but without them, I couldn't get out of bed and get to the bathroom 95% of the time. With my pain meds, I do have some decent moments and occassional drop below a 5 on my pain scale. Pain is definitely a constant part of my thought process in all that I do so that I don't push too hard and make it much worse - which I've managed to do too many times.

I'm curious, what are you considering the "highest dose" for the narcotics you have been on? I'm assuming you tried oxycontin and ms contin as long acting???

I have a three page double column list of meds I tried over the years for my migraines and 3 years ago, my doc hit on a combo with relative success which is much better than the NO success I had to 22 years! Don't give up.

Good Luck,
Suzanne

Pain meds only help with the pain not make the pain go away. When I was first on pain meds, I thought something was wrong with me because the pain was still there. Now 6 years later and 6 years smarter, I realize that it is only a major falacy that pain meds make it all go away. Now I live with CP instead of fighting it all the time. I just wish I didn't have to live with it so much.
I wish we all didn't have to live with it at all!

You asked my dosage for some of my meds.I checked my records and I was on oramorph ( I thnk that is oxycontin) 45 mg 2x aday, MSIT 15 mg 2x a day MS Contin 45 mg 2x a day, Methadone 20 mg every 6 hours. The list goes on forever. None gave me even the slightest relief. I am very frustrated. Signed up for the Ketamine trial but was refused as I have had the conditon too long and I have aching not burnng pain.
Maybe I need higher doses of meds - like lyrica or whatever. I am going to ask for that P450 test. I think I mentioned it in my other post.
Any ideas would be welcome.
I am so happy you found relief from your migranes. That is good news. Maybe a como of drugs instead of one at a time would help me too.
Sydney

I can tell you I haven't been pain free for the last eight years, except for a few years ago, for three and a half weeks I was in a coma and on life support.

I take pain meds 4 times a day now and they are~Oxycontin, Methadone, Hydrocodone and Neurontin. And, I still have pain. So, I don't know what it would take for me to have a pain free day. But, at least, now, I am able to do things without the pain consuming me.

So, no matter what pain med you are on or want the doc to put you on, don't expect to be pain free. It can help you get through your day easier though.
Good Luck,
Linda