4 years now
 

Greetings to everyone. I have been rereading alot of past posts and remembering many of you. My computer is working very rarely, so don't get on here as often as I would like to. I think of many of you and remember you all in my prayers; since I know the Lord knows you all by name. =) Anywho my doctor says that my RSD has spread to my hips. I can hardly walk now; I use a cane when it rains or is very cold. I have to support myself when I first get up in the morning. I have heard that RSD only spreads in the first year, but it has gradually moved to other parts over the years. I am a bit fearful of how my mobility will be in 20 years. Hip trouble runs in my family, so maybe I need an Xray to make sure nothing else is going on, but don't want surgeries. Also, the bunion on my other foot is getting worse....Oh well, I guess I am just rambling..... my warranty must be running out on my body. Ha! Anywho, I hope you are all well and that my "getting this off my chest" didn't ruin anyone's day. Lol! Blessings and soft hugs to all. Suz66 :grouphug:

I'm very sorry to hear what you are going through. I believe RSD can spread at any point and to anywhere in your body...mine spread a year ago to my entire upper body from my left ankle. So strange...but what is RSD if not strange? If hip problems run in your family then maybe it would be worth at least getting it checked out to make sure there is nothing else going on. We all suffer enough from the RSD...it would be sad to suffer more if it were something that could be treated in others ways...though I agree that surgery should be avoided.

I hope you are able to find some relief soon. Don't feel bad about needing to use a cane. I have to use a walker now but it has allowed me to be much more active and mobile than I would be without it...which has been essential in keeping my spirits up through these difficult times. We all do what we have to so we can keep going. Take care.

welcome back suz66. I am sorry to hear about your spread. I am not sure as far as the timing of spreading. I am in over 2 years and now am having difficulty with both feet. Most days I do pretty good. It's the end of the day when both feet hurt. (esp. in the ankles) It sounds like a good idea to have an xray of your hips done. As far as your mobility in 20 years just remember we can only live for today. We have no idea what the future holds.

Hi I am sorry for your struggles. For me my rsd spread four plus years later too. Actually in the first year I had the least areas impacted. I also know I compensate from my rsd areas with other body parts which is causing problems too.
Have you had any treatment,new meds,etc to help?

Am trying to decide what to do next. All the doctors want to do is give pain meds (which am allergic to them all) or put spinal stimulators in or give injections. I am kinda losing faith in the medical profession and am looking to my chiropractor more these days. Stretches and deep massages are helping me more than anything. =)

I just got back from a chiropractor treatment. Helps me greatly and it is the treatment that I MOST look forward to.

Everyone is different and every medical professional is different. Boy are we all finding that out! It is so cliche, but so true.

You have to find what works for you. And that is a lot of trial and error. For me, it's a cocktail of meds, 3 hours of work on this daily including therapy, exercise, soaks, stretches.....and the help of my physical therapist, chiropractor, pain management doctor, GP and on occasion, my massage therapist. CRPS responds best to a "multi-disciplinary" approach in my opinion.

It took me over a year to develop a treatment protocol that works best for me. And some constant "tweeking" is necessary. But I can honest say that life is a lot better for me than any time since I was diagnosed in 2008.

Nobody is a better advocate for your own health than your. Try different things and get LOTS of opinions. I found some professionals that didn't have a clue about this condition and others that are quite knowledgeable.

Good luck to you!

I find it so sad that so many doctors don't seem to want to cater their approaches to treating patients to the actual patient. It seems like they have their set of things that they like in terms of treatment options and meds and then that's it. Not all of them of course...but it seems to be the case with so many.

Sounds like you are at the point of looking at alternative treatments. I have gone off of most of my meds after they caused seratonin syndrome...that was a horrifying period of my life and there are large chunks of it that I don't even remember because I was so messed up. I've added a couple back in after going off of them all but I have decided that I cannot and do not want to rely solely on meds for pain relief because it just isn't the right option for ME...and I am worried about the long term effects of daily meds since I am only 28.

I find the TENS unit works well for me on my ankle. Doesn't work for everyone but it is a much better option for me than pain meds. Daily exercise and physical therapy has been very helpful as well and I do it all on my own now. I've heard good things about vitamin C infusions. And I am very excited to try tDCS treatment and hope I have even a fraction of the success that some other have had with it because it would change my life...so I would reccommend that anyone try it because it has little to no side effects compared to medications and invasive treatments (and it's far less expensive).

People have had success with chiropracters (though I would steer clear of NUCCA chiropracters personally because I think they are nuts and scam artists), acupuncturists, and massage therapists. Just remember that everyone is different so for every person who has had success with any of these things there are many with RSD who haven't. It's such a hard things to live with. I hope through trial and error (hopefully far less error) you will find some things that relieve your pain and RSD symptoms.

Spread
 

Mine has been spreading for twelve years now...total body muscle wasting. It's very scary, I still work but use a wheel chair to get around.

Deb

Sorry to hear that it has spread so far, Deb. I am concerned about that very thing as i get older. Will pray for you and hope you have a pain free day. =)

The year I was diagnosed, my son was a senior in high school. Was glad that he was available to do most of the driving that year. My doctors were experiementing with pain meds for me and i had reactions to them all; don't remember alot about that year, unfortunately. glad I have pics of his graduation, though. =)