In three years my RSD has spread from my left foot to my right foot, left leg, right arm and hand and left hand- the only good parts left are my right leg and left arm! Then after that what happens next- organs? mouth? How do you live knowing where you will be soon?
Sorry so depressing but I feel like I am at the end of my rope! The ketamine failure was such a blow....I really thought that would get me out of this nightmare..but I dont seem to respond to anything- Just so sad

DebbieH

You've been through alot. I'm so sorry the ketamine didn't work.

Has your doctor ever tried changing your meds a bit. When I was at the end of my rope with my pain, we tried adding the clonidine patch. Well I called it my miracle! Throwing the sympathetic nervous system a new med switched things around a bit and it really help me for a long time. There is meds that will calm your system down....it's finding the right mix for your system.

Sweetie, it seems like the monster is just trying his best to get the best of you. Don't let it. Seek other opinions on treatments if you have to. But continue to fight. I know it's depressing. This is the hardest fight of your life. But you can do this. Be agressive with your doctor. Don't be afraid of him. You are in charge of your body and your health.

We are here for you. Try to keep smiling!

Dana

Debbie,
I understand how you feel... in a about 2 years this monster has decided it likes living all over my body... went from one foot up the leg then decided the other leg looked like a nice place to live too. Stayed in residence in both legs for a while and decided to add on. Went to my torso but decided it still didn't have enough room so it added on one arm and days later added on the other arm. I guess the monster decided it had plenty of room for a few months and didn't add on. But a couple of months ago it decided it needed windows and added on my eyes. A couple of weeks ago it added my throat (swallowing cold drinks feels like swallowing a combo or pins and razors). Doc agrees that it has spread to all of these places... he says the symptoms are there... Let's hope this monster is done adding on... not much more room for expansion here.

I'm limited on medicines as most everything we have tried.. either didn't work or I've been allergic to it. As far as going on and wondering what's next... Everyday I jump on here to see what everyone is up to, see if anyone is taking a different medicine or trying a new or different procedure than I've tried... I then take the info to my doc and ask him what he thinks... I'm game for anything at this point and feel I have nothing to lose by trying them. Heck... I'd try just about anything if there was a glimmer of hope that it may even work a tiny bit.

Keep your chin up... Like Dana said... We are here for you.



Abasaki

Thats so horrible- Makes me more scared! Have u tried ketamine- This is such a horrible state to be in- I can't take it!! I am gonna try a six day steroid tx - will see how that goes

Debbie

Debbie,
I'm sorry I didn't mean to scare you or upset you in anyway. Forgive me.

Please don't let my situation scare you... I had a few things happen that I can't talk about on here that caused my spread in the first place... I just wanted to let you know that you are not alone in feeling the way you do...

Since what happend to make mine spread, this monster has decided it likes to go exploring and we haven't found anything to make it stop. This monster is indeed very hard to deal with and it is scary when it spreads but I've got a great doctor and his support crew that I can call 24/7 when I don't know what to do or when I just want to scream at someone.

The only thing that helps calm the pain a little and only for a short while for me is Chiropractic adjustments and acupuncture. I didn't believe it would work but for me it does. I know this doesn't work for everyone and I'm not a doc... don't even play one on tv. I'm just saying it helps me.

Haven't tried ketamine... doc isn't sure it would work since I have full body spread. We're gonna try Hyperbaric Oxygen next... as soon as I can get the $$ together. Hopefully before next summer.

What kind of steriod tx are you trying??? Curious as like I said.. I'll try anything.

I hope you are having a good day and that your are having a lower pain day.

Gentle hugs,
Abasaki

I don't want to scare you either, and I wasn't going to post but we are in the same sea of RSD just in different boats. I am going on two years now with this. It has taken the same route of spreading throughout my body as it did for Abasaki. It started in my right foot and went up that leg and then jumped over to the left foot and leg and stayed there for a little while, then went into my gentle places then up my behind and a little while later my whole back. It has started to take over my neck, arms and hands since July. It seems to be about every 4-6 months I get another big long lasting flare up and there goes another spred....Iam also very concerned as you are. But please remember and read as much as you can from others... There are a lot of folks that don't have spreds (god bless them) or they have minimal spred and it stays there... And we don't know the future for any of us, I just keep praying and doing research and have developed a great relationship with my pain mangmt. doctor and his staff. I am continually building relationships of shoulders to lean on or cry on...I pray for all RSD folks,,,and you are in there!!!

I haven't tried ketamine yet, I have had blocks and they were wonderful for the time they lasted, but that kept getting shorter and shorter. I now have a SCS and take morphine,lyrica,cymbalta,and 6 other meds to keep me from being in bed ALL the time. As Abasaki said sometimes a little shifting of the meds or treatments can do the trick.

Can someone tell me what they expierienced when their eyes got involved. I had extreme blurry vision in one eye today for over 10 or more hrs. now it comes and goes, no pain involved though.

I'll tell ya it has been extremely hard just typing this, not just the phsical pain but I seem to have become dyslexic resently.

I'm sorry I went on and on, Igues I needed to talk also....

I will surely pass on any new info I come accross

((Gentle Hugs))

Joyce...)

Hi and thanks for your replies- I know you didnt mean to scare me- Believe me I am so scared already- I cant think of anything I am doing to make is spread- its just got a crappy mind of its own. The steroid Im gonna try is Methylprednisolone...Did either of you try that- Today besides my wrsits being painful my right ear is hurting in the canal- my whole right arm/shoulder muscles hurt a lot so I am sure it can involve the ear too...Just wish there was something I could do. I did do the hyperbaric but unfortunatley it didnt work for me but i kow some people that it helped a lot! good luck with that..Abaski- where do u live? I am in NY

Debbie