Dealing without all the medicine..
 

Hey all, I hope you had a great holiday weekend! Recently I decided that I wanted to try dealing with RSD without all the medicine I've been taking the last two years. I know it sounds crazy, and there are days I wonder what I was thinking but after the failure of my SCS I had implanted 6 months ago I feel into this heavy depression and as ashamed as I am to say this, I even had a few weeks where I had terrible suicidal thoughts because I felt so helpless. I recently found a pain relieving lotion (two different ones I use daily) and made the choice that I didn't want to take he heavy duty narcotics, and wanted to begin the process of weening off Cymbalta and Lyrica. I'm finally down to only two doses of Lyrica but Cymbalta has been terrible to step down from! For the last two weeks anything I eat goes right through me, and I started having "brain zaps" as a site for Cymbalta calls it. A few nights ago I also started feeling like I was having a heart attack to which I was given beta blockers to slow my heart down. Has anyone else experienced this stuff when coming off Cymbalta? Is stepping down the way to go or would I be just as miserable going cold turkey like I want to? I've also been exercising daily again, before my accident I ran 8 miles a day so getting back to being in the gym has made such a difference in my mood! I noticed that being off pan meds and stuff has also helped me sleep all night!

So after that rambling, is three anything else I can do to make life easier going down this med free path?

I'm not sure that I can help with any of the specific questions you asked but I can tell you that after my RSD spread I decided to go off all medications except Lidoderm patches and clonidine patches. No more Lyrica, no Cymbalta, no ultram, no Mobic...all pills stopped. I went cold turkey. However...in my case the mix of meds were contributing to serotonin syndrome which I had as a result of all the meds...so the relief in the symptoms of serotonin syndrome probably offset any ill effects I would have had from coming off the meds.

It's not easy dealing with the high pain levels without meds...but I am much happier for it and feel like I made the right decision for ME. My mood is so much better and once I went off the meds everything seemed to start going in the right direction for me. I got a portable TENS unit to help with the pain, I dedicated myself to daily physical therapy exercises (had at home physical therapy twice a week for a while which was great), and I worked hard to find alternative treatments. I went onto the 4 Fs diet which helped with inflammation. I took hot baths with Epsom salts once or twice a day. I got a portable ultrasound heat device. Basically...I took control of my own treatment.

My doctor was great...at least the one I had while all of this was going on. She worked with me on the treatments that I wanted to try, made recommendations about other things, and helped me reach the goals that I had for myself. There was no agenda on her part...it was really a partnership and I am so grateful.

I still have RSD, still have horrible pain every moment of every day, but I got myself out of a wheelchair and back to work...and I am the happiest I have been in years since my RSD started. It's a hard life...especially with the high pain levels on a regular basis and the still constant need to follow through with treatments and therapy...but my life has gotten back to some semblance of normal and I am happy.

So I guess if this is the decision that you have made, then all I can say is commit to it. Know why you are doing it, remind yourself of that when you have difficult moments, and find a doctor you can work with through the process.

I don't believe any of those meds are classified as narcotics, which are generally defined as opiates.

No Cymbalta and Lyrica are not but what my doctors had me taking for pain were narcotics, so I am saying I made the decision to do without all of them. And Catara, I got all teary eyed reading your response! I know that this is without a doubt the best option for me, but hearing from you and reading other forums have really shown me that this is possible. Being on so much medication all day everyday made me feel like I wasn't really living a life at all. For the first time in two years I feel good on the inside. I have already experienced a few pretty rough days, but I managed them with a clarity that I haven't had in a very long time. You're such an inspiration to me and I appreciate you sharing how you've managed!

To those who don't know my wife has had RSD now for 10 years. In those earlier days, the first few years with no diagnoses and treatment, jumping from doctor to doctor my wife was in severe agony. Her pain was so intense she couldn't even brush her teeth. She needed those narcotics to control her pain and calm her nervous system otherwise we would have lost her. As the years have passed her RSD has changed where she describes the pain as deeper in the bone but not as many stabbing kinds of pain, just a continues throbbing, burning. After 5 continuous years of many drugs including narcotics she no longer takes them. I can only comment on what I have observed in that she seems to be able to handle the pain much better, although I see her in pain everyday, all day. She avoids many things that she feels will trigger a flare, somewhat like walking on egg shells. Her situation was very difficult years back but she seems to be coming around to her old self, slowly but surely.

Good luck CWilhite, I hope it all works out for the best!!

I feel so badly for your wife! I am thankful every day that although I did develop this terrible disease, it is not a debilitating as some people have it. Each day I'm discovering something new, whether it's a do or don't. But having a "normal" life again is so incredibly refreshing, I feel like this opportunity to cope in this way as opened up as a break that I really needed. My husband and I got married 3 weeks after my accident that set all of this in motion, and all the surgeries then developing and trying to learn about and deal with having RSD has unfortunately put a strain on our relationship. The big part of this is for me, but it's also for us. I wish your wife all the best though, this site and all the people who share their stories are what's helping me get through. I hope she can continue to find more ways to avoid being in so much pain all day. And kudos to you for being so supportive of your wife, it's really admirable.

That is Great that you are not taking as many meds as before!!

Is this because of the SCS do you think? Has the SCS helped you stop taking all the medications for pain?

Thanks for your insight and info.

you could try these
http://www.openfocustraining.co.uk/exercise.html
http://www.paintoolkit.org/assets/do...t-Nov-2012.pdf

I admire your determination and wish you well. Some of the meds you should probably get some advice on - Lyrica can cause seizures if stopped too abruptly. My daughter tried it, but she felt horrible on it and had hallucinations. Took her a couple months to get off it safely. I am not sure about the Cymbalta - I am on that one, so I should know! But I recall reading in the insert that if you get suicidal thoughts while on it, to advise your doc.

Sorry to hear it is a hard thing to wean yourself from these meds. i hope that like Catra you will have some alternative treatments to manage the pain, and a strong pain tolerance level.

I have a friend who is trying the same thing. I worry for her, but Catra's story is inspiring!

Love,
Jenny

Hi
I have had crps for 24 years, but only in the last year has it really got bad spreading across my whole right side. Well done for your determination to cope med free. I do all so but out of the fact I have a very low tolerance to medication and always have side effects, I have had all medication avalible to me apart for ketamin infusions. In the past I have had some succses with meds but then the side effects arrive, the main problem I would have would be weight gain, vomiting, headaches and dizzyness. Since diciding to no longer take medication I have been very diligante in making sure I eat healthly and try and excersise, not always possible. One thing I have found to help is to take caffine, dairy and gluten out of my diet. If I can give you any advice it would be to not be afraid of living without medication and if you can do it well done, but if you do need to go back to medication there is no shame in that. The one thing that has been a problem for me is, I would see my specialist every month after telling them I no longer want medication I am now only seeing them every 6 months. My specialist even said to me that I obviously did not want to get better if I refused medication and what did I expect him to do to help. So please be prepared you may get some less than positive feedback for medical proffesionals, in saying that me general practisioner is very supportive of my choise. I am sure you will find that too.I am looking for a new specialist now. Also look into alternative treatments but please do the research some of if is quite conflicting i.e accupuncture has both good and bad reviews. But well done I know it is hard but you are being very couragous. I hope you do seek medical advice to help come off the meds. Good luck