Hi everyone. I haven't been around for a while so I thought I would just say a quick hello.

As you might guess, working full time pretty much uses up all of my spoons. I'm still trying to find some sort of balance.

I have been referred to a doctor who is running an ivIg trial and I'm waiting for that appointment. The same doctor also does SCS, so we will also be discussing that. Yikes!

I hope everyone is doing well.

KimA

Hi Kim, great to hear from you! Thanks for the update; have missed seeing you here on the board. When I don't "see" someone for awhile, I can't help but wonder if they are OK. Good to know you are busy, but OK :-) You are a very strong person working full time while dealing with the challenges of CRPS.

If you have time, let us know how the appointment with the doctor goes. Are you hoping to try IVIG?

Wishing you wellness ~ Lottie

Hi

Good luck, I would love to try IVIG, hope it goes well.

Working full time with RSD is very challenging. VERY. I do it too.
I have been doing it for 25 years and it never is easy. Some days it takes every ounce of energy and patience hah??? :-) Here is to getting through the work days!!!

I give you credit and hope things go well with either IVIG or implant if you plan on doing that.

Take care

Hi Kim, I am so happy you are looking into the chance to try an IVIG trial. I hope if you try it that it helps. I want to try one, but I have to get some other health problems addressed first. I think you are very brave to be considering trying the IVIG trial and my thoughts are with you in hopes that it is a complete success. Take care my friend. Sincerely, Renee.

Thanks. I hope that I am accepted into the ivig trial but I will just have to wait to see the doctor who is running it.

Working full time with CRPS is definitely challenging. I am trying to hang in there as long as I can. Twenty-five years is amazing, Burn! Absolutely amazing.

I'm not exactly in love with the idea of the SCS but I think I will need to consider it. I had a bad night last night. I had the kind of night that makes me realise I will try almost anything that might help reduce the pain.

But I know that others have been much harder hit by CRPS. I only have it in my right hand and arm. I would like to swap arms though since I'm right handed. :/

Usually, the pain has particular qualities to it. So, I will have burning pain (constant) and I have random stabbing pain, crushing pain, scraping pain, etc. Sometimes, though, the pain is so intense it doesn't seem to have a quality; it isn't burning or stabbing, it is just pure pain. Does that make sense to anyone?

KimA

Kim, I have almost the exact same kinds of pain. Constant burning and electrical like, and random stabbing, cramping and aching pain. My rsd also started in my right hand, wrist and shoulder. I am also right handed unfortunately. I get all these pains in my right hand and wrist now, not so much my shoulder. But I do get the other kinds of pain in my right hand, wrist, shoulder, left hand and wrist, both feet and ankles and stomach. I don't understand why some pains are constant and some aren't but I do believe they are all because of my rsd spreading and my pm dr said it's possible. Being that I've had rsd for over two years now though (I have had it for almost four years now), my pm dr doesn't think there is much they can do, but is considering nerve blocks again to try to stop the spread. I want to try the IVIG trials too and will talk to my pm dr next time I see him. I've just had to deal with some other health problems first. I hope that you qualify for the IVIG trial if you want to do that and I hope it helps. I am scared to try the SCS and my pm dr doesn't think it will help after two years of having rsd anyway so that I guess is a mute point for me. I hope that your dr can help you to feel better. I will keep you in my thoughts and hope that your rsd goes into remission with the help of your dr and a possible IVIG trial. Take care my friend and be well. Sincerely, Renee.

Kim kim kim!!!

Fab to see you back, only just back here myself, akthough strictly part time and for very short periods lol. Good luck with the trial, I've had to abandon the one I was booked in, as my back is still too much of an issue...sucks as everything about this disease does! I'm really disappointed as I was so looking forward to trying the ivig. I'll be cheering you on from the sidelines

Hugs to all x

Bram.

Kim so nice to see you here, I was also off for few months ,trying to catch up lately .
I'm glad your trying a new procedure soon,hopes better and less invasive than scs ,then scs is a real pain in the butt literally , I had a second surgery to repositioning the battery in my abdomen and recovery takes long time,after a month I had a gallbladder surgery also in my abdomen obviously ,but lucky the dr and anesthesiologist was so careful and so gentle ,no,issues from that surgery at all but when I have flares ,all my scars are hurting as hell.
Wish you the best and hope works,please let us know how it went, I don't want to get a second scs ,I prefer try something else if anything else is available.
Gentle hugs ,Jesika .

Hi Kim,
You don't me but hello anyway!
I'll also take this time to say to anyone who cares that the last timd I saw my neurologist she increased my Gabapentin to 2700 mgs daily and I think we finally found the correct cocktail for me. My pain level has been at it's lowest and even triggers seem easier to deal with.
My wish is that everybody here finds releif.
Best wishes to all.