Hi all im William, and I`ve had CRPS since 1995 when i was in the UK Forces but wasn't diagnosed until 1997 with this in both feet.
It has now spread to my kidney due to a stent placed in my kidney to stop a blocking kidney stone in 2001. I did say at the time that i have RSD but was ignored over my condition and about 6 months after the stent was removed it felt like i still had the stone and stent in place and this hasnt changed since 2001 and everyday is like having a kidney stone and i dont even want to say whats its like when im having a kidney stone at the same time.

But its eventually spread to my whole right hand side of my body and now effects my arm and im currently waiting on my electric wheelchair to roll around on. My meds at this time are Ketamine on the highest does that you can receive ive been told by the pain management team and Fentanyl patches highest dosage and for the break through ive got some Fentanyl lozenges which i use sparingly. And even with all this i still feel the pain.

Hi William.

Welcome.

I'm sorry you have rsd and are in so much pain. I hope you feel better and go into remission.
I've had RSD since 2011. It went from right wrist and hand to shoulder to left wrist and hand and to right leg and foot.
I take pain meds and antianxiety meds from my drs and exercise, but still feel pain too.
Some days are worse than others and weather changes right now are tough to deal with.
My rsd does not like the cold!
I hope your treatments help you to feel better and am here if you need a friend. Take care.

Welcome, sorry you have to be here for this beast. The best things I have found are keeping positive, this forum and my family. It took them almost 10 yrs to figure out what was wrong mwith me. I know it hurts. I don't know the pain your in, or Renee's in but I know my pain. Do what you can when you can and don't let them push you aside like your the red headed step child. What works for 1 person doesnt for another. We are here for you to vent, cry or shout for joy as needed. There aremsome people on here that knows a ton more about this diseasethan I do. Even though I have had it longer than some I didnt know it. I have learned aton of info from them. Everyone with this and other chronic diseases are in my prayers.

Hi MadJock,

Wow, so sorry you've had this terrible spread from a kidney stent This illness is incredibly unfair...

Welcome to the site, and I hope you find some hints and tips here that might help. We are a friendly bunch, and you are welcome to vent if and when you need to!

I have CRPS in my left side after spread from an arthroscopy on my left knee. It's all crazy really, I've been on different meds and tried various 'painkillers', none of which take the pain away. I'm doing ok at the moment on low dose Lyrica morning and night, and physio exercises and just general movement as much as possible. The pain is what gets you down, isn't it? Just not being able to get away from it, and not being able to rely on any med to really tackle it. I'm coping better than I used to though! I hope you find something that helps you, there are so many ideas on here, many worth a try I'd give Epsom salts (unperfumed) a go if you haven't already, either in a warm bath or wrapped in a damp cloth and placed on your skin. I find it especially good during the hot burning phase.

My spread into my left arm is fairly recent, and it's quite a scary thing. I know I'd struggle if I had to go back into my wheelchair again - I've been out of it for the last almost 4 months with the better weather. How long ago did your spread happen?

Good luck with your treatments and I hope you find something that eases the burden of this for you.

Take care, have a better day, and keep posting!

Bram

Cheers for the replies all,

Yeah i have a few things i do to take my mind of the pain if i can, dont know if you have heard about MMO gaming, it takes some concentration and it helps keeps the mind active but it does tend to place myself in a bubble.

Avoid cold at all costs it makes the RSD spread and just intensifies the condition and with winter coming up it makes it all more important to wrap up warm and for those with RSD in there feet thick socks. Summer has its own fall backs as i can stand direct sunlight on my leg or arm as that just makes the pain worse but its not as bad as the winter months.

Family and friends are your great support with this condition and its keep me sane for the past 18years.

Oh yeah Ive heard and play. Do you play WoW? It does take a lot of concentration but after sitting for 15 min I have to get up and move and then lay down and elevate this stupid leg. I like to sit in my son's play room and watch him play also. We also color on the floor so I can stretch out. He loves to scribble on the page Im coloring lol.

Hi Madjock!!

Glad you found this place. It is full of wonderful people that know exactly what we go through, and are great at listening to our rants.

Minecraft has saved my sanity more than once!!!! Tragic but true....

Hope your evening is going ok. My flippin feet are on fire, my knee hurts and my left arm and hand are sore, cold and aching. Sometimes all the other brave words go out of the door and all I can say is I HATE THIS!!! Lol, you have to laugh sometimes....

Take care everyone

Bram.

Do you think putting a heat pack where your worse pain is? Also. Cover yourself with an electric throw or blanket. Having a Dog or cat helps keep your mind off your problems too. What about gabapentin. That is the dRug most of us are on.
Good luck with your Fentanyl patches. I was on them & got so dizzy; I fell & broke my neck! Now have brain problems on Rt. side. Coordination with voice box, essential tremors, double vision to the Lt. Lots of fun things! Lol
I've had RSD for 13 yrs. I had a simple tennis elbow operation & my Rt. hand swelled three times it's size & turned purple. The whole story- COULN'T stand air on it, etc. Best of luck. & TRY A PAIN DOCTOR!

Oh my gosh the idea of an electric blanket anywhere near my CRPS II leg makes sends me into panic mode. I think because my leg has constant severe electrical shocks this idea just scares the heck out of me.. even an extension cord laying on the ground.. I will walk far and wide around it. Must be something sub-conscience making me fearful about it. WEIRD I know!!

Glad it works for you!! I'll stick to warm baths