Waiting to Hear about Spread
 

Ahh this waiting is driving me nuts!

A few months ago I started having pain in my wrist. It kept getting worse and then I started having thumb pain as well, so I finally saw my orthopedic surgeon. He first started me on an NSAID and put me in a brace, but then when that wasn't helping, he sent me to physical therapy since I couldn't have an MRI done because of my SCS. The thumb pain is tendonitis, supposedly from compensating for the wrist, and I have definitely noticed improvements with that with physical therapy. The pain in the wrist has been more of a shift, though. It's less mechanical and now feels like nerve pain. I remember this is how it was with each of my knees when the RSD started in those. After describing the symptoms to my therapist, including the oh-so-awful burning, she vocalized my fear: that the RSD is probably spreading. My ortho said, though, that he wanted to make sure to rule out anything else like nerve impingement before we say RSD for sure, since I do have some numbness in my fingers sometimes and scar tissue in the wrist from a past surgery. I told my pain management doctor about this before my SCS revision surgery on Thursday and he was ok with the plan too. So I went for an NCV nerve test on Friday and I don't see my OS til Wednesday and then my PM hopefully on Thursday.

Who would have thought that I'd ever want to see positive results from that test? I'm hanging onto the hope that it's something else and a big coincidence, but I feel chances are greater that it's the RSD spreading. My PT also said that since I had surgery in this wrist before, about 10 years ago, that it could be a "weak link" which would explain a lot. I don't know how I'm going to deal with it in a whole additional area if it is. I'm so anxious to hear the results!

Hi Yellow,
I understand exactly how you feel. I recently saw an RSD specialist and he confirmed that my RSD has spread to the entire left side. The combination of Lyrica and Cymbalta is managing the burning well. I still am aware of it but it's doable. But now I have this cold and crushing feeling like my leg and arm are in a vise being squeezed.
RSD is awful enough in a localized area but spreading to other areas really sucks.
So sorry you're going through this. I wish I could wave a magic wand and make all our suffering disappear... :grouphug:

Very sorry that you are going through this. I know exactly how you feel. After a block this January my RSD spread to my back, neck arms, hands...basically everything between my waist and neck...and I went through so many tests to rule out other things and to confirm that it was actually from the RSD. I prayed every day that it was something else...that one of these tests would come back positive for something else...but none of them did. It took months to run all the tests but once it was determined that it was the spread of the RSD...at least them we were able to start treating those areas properly because no one wanted to do anything until we knew what was causeing my symptoms. Such a frustrating situation because it feels like you are stuck in limbo while waiting for all these test results. Good luck.

That's definitely how I feel. I don't want to fully admit it or accept it yet until I hear the test results but at the same time I want just want to know already. When my RSD spread from my left knee to the right one I didn't realize the implications because I hadn't been diagnosed yet. But this time around it's much harder. The good thing, though, is that if it is RSD, I'll be catching it pretty early and can get started on treating it.

Thanks for the replies. It's good to talk to people who understand because you've been through it. Although I'm very sorry that you have been.

Just an update, my nerve test was normal, which I figured. So the diagnosis is all but confirmed, the words just need to be spoken by my pain doctor because he wasn't at my appointment today. I knew this was what was happening and I've had time to come to terms with it but it's just hard to deal with that this monster is now taking over my wrist as well. But hopefully treating it early can stop it from getting too bad. I'm going to remain as optimistic as realistically possible.

That's a great attitute to have. Be as aggressive with the treatments as you can in the wrist. The good thing is that since you already are well informed about RSD you can avoid some of the pitfalls that come when you get it for the first time. I get frustrated when I think about how everything was handled when I first got hurt and think if I had just gotten proper treatment then maybe it wouldn't have gotten so bad so quickly and maybe the blocks would have had a better chance at working.

At any rate, good luck with this. I hope early treatment means that you can at least get this spread under control and keep it from getting too bad.

I have had crps since 1988
 

Hi
i was firstly diagnosed in 1988 with crps in both knees after having surgery, was virtually told to go home and not move and that i would be in a wheel chair by the time i was 21 years old, being told that when i was 19 was very scary and have actually never been in a wheelchair. On really bad days, weeks. I just rest.

then in 1998 i started having severe stomach pain and constipation and was in and out of hospital every couple of weeks eventually they removed my appendix but that didn't cure the pain. Then i just managed and thinking about it the pain in my knees also calmed dawn a bit.

when about 8 years ago the pain returned and more severe than before, have has every test imaginable done but always comes back neg apart from Thyroid problems and that's not normal i have a low T4 where mostly people have a low TSH. The constipation was really bad too and now i have a pec in my Cecum, i daily have to insert catheter in to pec then wash it out then twice a week i put an enema in and that's the only way that i go to the toilet.

I am very depressed at the moment as i cant see away though this awful pain which seems to be everywhere wrists fingers legs (sometime it feels like my legs are not part of my body) back neck. i usually can snap out of it but this time i cant and im really concerned.

alyson,

I am sorry to hear you are having such a rough time.It is not easy at any age to go through this. Do you mind me asking what you have tried, what pain meds your own and what kind of support group you have? I will definetly say a prayer for you. :hug:

I'm very sorry to hear what you are going through at the moment. It is so easy to fall into a depression when you are dealing with constant pain all the time and having hard time finding relief...even for a fighter like you who has obviously struggled with this for so long. NT is a great place to find support and to vent during those hard times. It's also a great place to find information about different treatments and tricks that people have tried and/or been successful with in their fight against this awful condition. If you have any questions or anything like that, please feel free to start a new thread and just jump in. Even if all you need to do is vent and get some things off your chest...we all understand the frustrations that you may be dealing with. Good luck...my prayers are with you.

Yellow I hope you get some direction and of course relief with the pain doctor. I hope you have a meeting asap with him?
Alyson I see you are new and you may want to start your own thread so that more people will respond. I am sorry you are facing this and I can understand the battle mind and body. I have had this 5 years and both mind and body have changed a lot through out. I do agree that seeing a psych can help one cope with the pain and health problems. Are you under the care of pain doctors and other? What other procedure or meds have you tried?
Sorry I wish I could offer more to both of you. Just that I understand and to hang in there.