To all that is on here I hope you can help me. I wouldn't ask if this wasn't really important. I need to know what types of meds everyone is taking that is helping with pain at least by making to pain bearable. I am on Skelaxin, lyrica, cymbalta, nabumatone, ambien, and xanax xr. I am asking for two reasons: one is because my pain doc seems to have given up on me and I need to know if there is anything else out there that will help me and second is I need a list for my attorney so he can write a letter to my pain doc and see if he will prescribe any of these for me. So please all that can help let me know. I would greatly appreciate it. Thank you.

Sincerely,
Tracy(screwballpookie)

Hi Screwballpokie,

I am sorry to hear about everything that you are going through and really hope that you and your doctor can find something to help you real soon.

I'm not on any meds at the moment as I feel that they were making me SO much worse - they made me drowsey etc and the side-effects often outweighted the benefits. Non of the meds that I have tried really helped so my doctor, my mum and myself felt it was better that I came off them.

Here is a list of most of the medications I have been on but please remember everyone is different and what works for once person, might not work for the others.

Tramadol - this was for the pain but didn't help me at all and made me really drowsey.

Lyrica - This helped a little with the electric shock type pains that I was having but not too much and it made me feel really light-headed and I had bad chest pains with it.

Amitriptyline - This was to try and help me sleep but I suffered from blurred vision which resulted in a spread of the RSD so I immediately had to come off it.

Morphine - This didn't help at all and made me feel really sick.

Paracetamol - Didn't help at all.

Ibuprofen - for the swelling - didn't help

Phenagon - this was to try and help me sleep but it didn't help that much

Kenadrin - This was to help with the spasms however it can be used for pain but it didn't help me and made my pupils extremely dilated.

Gabapentin - This was for the pain and is the older version of the Lyrica and it didn't help.

Diazepam - This is for the spasms but it didn't help.

The only pain med that actually works for me is Ketamine. It takes my pain down from an 8 and a half on the pain scale to about a 5 or a 6 however I am only allowed to take it on my really bad days as my PM Doctor feels that it could cause problems with the hormones if I take it for a long period of time.

I hope you find something that helps you soon and please keep us updated - please remember though that everyone is different and often you have to "experiment" with drugs before you find one combination that works for you.

Tracy, My current meds are Lyrica 100 mg three times a day, MSContin (morphine) 30 mg twice a day, MSIR (immediate release morphine) 15 mg for breakthrough pain, and Klonopin 2 mg at bedtime. I failed Neurontin because it made me too tired and never really did anything as I never got to a substantial dose. I failed Cymbalta because it gave me TRUE double vision-running into walls, actually seeing two of everything, not just blurry-I had to see with only one eye. Initially, the doc tried me on Ultram (Tramadol) 50 mg and that was useless and constipating as cement. No real pain relief whatsoever. I can't do tricyclic antidepressants (amitryptyline) because I am already on Wellbutrin and Lexapro for depression and they don't mix. My doc was also concerned about giving tricyclics to me because I have a history of depression and you can fairly effectively kill yourself with them (to be blunt.)
Unsure if this helps or not, but keep an open mind-what works for one may not work for another. The goal is finding what relieves your pain.
One piece of advice-take daily laxatives and stool softeners until you see how any of the meds effect you. I need a ton just to go every couple of days and I waited too long initially and almost had a bowel obstruction. All of these are constipating.
Let me know if I can help
Lori Lee

I only take 2 meds, baclofen for the jerking and muscle spasms,10mg 3 x's a day and vicodin 10mg 4 x's a day. It does well enough most of the time. I took 7.5mg for just over 2 years and will stay on 10mg as long as I can. If I switch to percocet then I'll have to go to the doc every month and I really can't afford that. Right now it's only once every 3 months.

I tried neurontin and it turned me into a monster,quite literally. I tried cymbalta and it gave me sharp,stabbing,shooting pain in my stomach. I just quit taking lyrica because the only reason I took it was to help or stop the numbness in my legs and instead it made it 10 x's worse!! Thankfully the worse part wasn't permanent and I've now gone back to my "normal" numbness. When I was on wc the neuro I saw put me on the duragesic patch for awhile and it made me feel as though I didn't even have rsd at all. It worked great, but I also felt very sick all the time and I couldn't take that,plus I was going to settle out and there's no way on earth I could afford to buy them on my own.

Everyone is different when it comes to how they perceive pain. My 3 or 4 could be your 8 or 9. So, the meds we take that "help" our pain a bit will be all over the map as well. As Lori Lee said, you have to find the combo that works for you. It really is a trial and error thing. I wish you lots of luck in getting some pain relief very soon!! This is a big reason I think that docs don't want to treat us. It takes too much meds and nothing they do will make us "better", they don't want the hassle. I sincerely hope your doc will listen and try to find the ones that will give you peace.

Hugs,

Karen

Hi Tracey,

Your sure right, most Drs. find this disorder a very frustrating illness to try and make the patient more confortable.We are always having flares, spreading, we are a pain for them,plus the legal issues, They don't like to take up their time on WC and accident depositions and court appearances, and of course the worst-they would be on the wrong end of a lawsuit.

I've had RSD 12 years, full body. I finally found a great Dr. He is a Neurologist, Psychiatrist, Pharmacologist. So he is managing my pain, and brain. smile.
I take Lyrica, Vicodin,Lorazepam 2 mg. 3x day. It's an antii-anxiety med and keeps my system calm down and helps with sleep. Ambien CR 25 mg. (sleep) 2 blood pressure meds, Diovan in the morning, Toprol XL 50 mg in the evening. Cymbalta. I was on Neurotin -had ridiculus electric jerk, jolts,stabbing, spasms day and night. Had to go up to 3200 mg. of Neurotin to get them to stop. Now off that totally. and Gradually going down o Lyrica 50 2x day. I gained weight on those two rascals, now I'm trying very hard to get back in my clothes. smile.

Hope all goes well with your prompting by your attorney. Take Care, Loretta Jewell

Hey ali12,
Thank you so much for the list of meds. I have not heard of any of them. My pain doc doesn't even want to try anything else that is why I am trying to get help from you guys and gals. My pain doc my attorney thinks just doesn't want to deal with me anymore so he keeps saying there is nothing he can do for me. So i thought if I could get a list of meds it might help me out a great deal because then the doc might give me something else to try so maybe it will help subside my pain because I am in extreme pain. I can't even hardly walk I have so much pain. So thanks again. Also just to let you know I will not use your name or anyone elses for that fact. I really appreciate the help and caring. It helps me alot because right now I am going through so much stuff right now and need people like you. You are one of the sweetest people on here.

Sincerely,
Tracy(screwballpookie

Hi Lori Lee,
Thanks for the help. I am just trying to get some pain relief which my pain doc doesn't seem to think he can help me with anymore. I just know I am in a lot of pain and just want some help and in order to get it I now have to go through my attorney because as I said my attorney and I think my pain doc has given up on me. Thank you and as I said to ali12 I will not use your name. Thank you so much for your help. You are so sweet and kind.

Sincerely,
Tracy(screwballpookie)

For me most of pain control is getting a good night's sleep and avoiding the triggers. The biggest trigger is overdoing things especially with the affected hand.

I take depakote that is supposed to suppress the emotional ups and downs but it really helps with pain.

Gabapentin is the same as neurontin I believe and this was like a miracle drug when I first took it but I was able to ween myself off for a few years and when I tried it again there was almost no help at first but the longer I stay on it the more effective it seems to be.

If you aren't sleeping well then get something for it; probably something like tizanidine.

Ultram helps a little with pain and I take one or another forms of it as needed. Tylenol 3 is great for all pain except the RSD and will often help with sleep. Try not to let yourself get into a panic. Tranquilizers or something like valium can stop panics.

You might consider getting a second opinion. It took years to find the right combination for me. The doctor who diagnosed me told me to be very leery of taking things that didn't help or that caused problems. He said RSD patients can end up on too many meds and that their interactions could complicate everything.

Try to keep an even keel.

Good luck.

I want to thank you all for all the help as I see my attorney at 2pm central to see what he has to say. You don't know what this really means to me. I appreciate this more than anything. i really need this help. YOu all have been so kind and so generous. I will keep you all updated on my condition. Thank you!

Sincerely,
Tracy(screwballpookie)