[ing2foru]

My name is Melissa & I have CRPS in my foot. I have been lurking on the site for a while but I wanted to share a little of my story & say hello.

A little background.....I woke one morning with pain in my left ankle. No specific injury to speak of. I saw a Podiatrist & we did an MRI. It showed a deep heel fracture & tendinitis with some tearing in the tendon. I was put in a cast, with weekly cast changes to monitor my progress. The pain was not getting better. My Dr was hesitant to do surgery, because I had already had a nerve issue with my gallbladder (I had my gallbladder removed, but I was still in pain like it was still there. They fixed one of the issues in there only to be sent to Mayo Clinic because I couldn't eat from being in so much pain. They determined that I was having phantom pains & was put on Cymbalta, Lyrica & Trazadone. The meds helped & was able to eat but still having some pain, but it was bearable.). So this is why he didn't want to do surgery, he was worried about CRPS. But he didn't have much of a choice. He had to go in & do a tendon repair. Before he did, I went to pain management to have a nerve block before & after surgery. Those didn't help & now I am faced with this. So as I was researching CRPS, I now realize that the pain in my "non gallbladder" was & is CRPS. I am so frustrated!! Why didn't the meds I am already on not work for my foot? So my PM has put added on Exalgo 12 mg & Norrco 7.5 mg. We both have decided to treat this aggressively & I am waiting for my trial of the SCS. We have been waiting for a couple of months for insurance to approve it & they are now dragging their feet even though we have done everything necessary to show them that it is medically necessary.

I can't stand anything touching my foot & people keep telling me that I need to put something on my foot. They don't understand that it would cause me more pain that I am in. I have feelings of guilt on what I can't do for myself right now because I am on crutches (have been for 6 months now). My son is a senior in high school & he isn't enjoying his senior year because he is taking care of me. My husband & I are separated, so everything is falling on my son. I am just tired of being in constant pain & feeling very scared & alone right now......

Sorry for the novel, but I wanted to explain a little bit of my situation. Thank you for reading my story.

[RSD ME]

Hi. I'm so sorry you have rsd. I hope you SCS helps. My pm dr wanted me to try it, but some other drs told me that it might do more harm than good, i.e. if I get an infection from it. Plus the chances of it helping are not too good. But I've also heard people who say it helped them alot. Everyone's different. I hope it helps you. Good luck and take care.

[catra121]

I am so sorry to hear what you have been going through.

I have it in my left ankle...that's where it started for me...and when I experienced spread NONE of the meds that had helped keep my pain bearable in the past helped with the new pain I was experiencing. There were other factors...I don't think any case is simple...but I do know the frustration and pain that you are experiencing right now.

I also have had to deal with EXTREME sensitivity. The best thing for that was physical therapy and desensitization therapy. I still have sensitivity to touch, extreme sensitivity to cold...but at least I can wear regular clothes now. If you are doing physical therapy then it might be worth mentioning. It does hurt...ALOT...but it normalizes sensations related to touch and was, in my opinion, well worth it. Just don't let them do any sort of contrast therapy...that's bad news...but desensitization was very beneficial for me in the long run.

I also get relief from heat...if that helps you then maybe you can try heating pads or something like that. I find for me a lot of things are about finding what it worth the pain to avoid greater pain...and balancing those things out to me the best quality of life overall. It's not easy...especially during this time of the year when it is cold outside...but time, patience, trial and error, and determination will allow you to eventually find something that works for you.

We're all different and what works for one person doesn't always work for another. Everyone has to choose the path and treatment that they feel is the best for them. We're all here for support...I have learned a great deal from the people on this forum and I don't think I am exaggerating when I say that they have saved my life. I would not have achieved any of the things I have without the support and advice of the people here. Doesn't mean I agree with everyone...but I appreciate every person who posts here for sharing their opinions and experiences as they have ALL helped me make informed decisions about my own treatment and care regarding CRPS.

[RSD ME]

I hope you feel better soon. I'm do hope that the SCS helps if you decide to do it. I've had rsd for over 2 years. It started in my right wrist when I broke it after slipping on ice. I know have fibromylagia which my pm dr says happens sometimes with rsd patients. I think it has spread to all four limbs and I take a lot of meds. I've tried 8 nerveblocks. 6 months of pt, accupunture which I think made it spread to my other limbs. I'm in pain everday. Some days are worse than others. I see alot of drs and with their support, my family's support and the support of the kind people on this forum, I am able to get through my days a little easier, even with the pain. I hope the same thing happens for you. Take care.

[AZ-Di]

Hi Melissa, Welcome but so sorry CRPS brought you here. It's a wonderful support group and sadly it seems like we're the only ones who understand the comlexities of CRPS ( bad pun).
It really sucks that nerve blocks don't help. They're no magic bullet but they do give me some relief except I have to get them so often. I did the SCS trial but it did not help much more than the nerve blocks. I'm just very afraid of the permanent one.
Please do your research and ask questions of your Dr. and the SCS Rep. There is a subforum on here about Pain pumps and SCS. Please read the real results of these actual people. There are details the Rep. skims over on purpose. However there are CRPS patients who are grateful for the SCS and some who regret it and then there's everyone in between.