Internal CRPS
 

I have had CRPS/RSD for 7 years, this past year after having a surgery it spread to my stomach. I now am on a feeding tube that goes to my small intestine. I have tried searching for treatments for internal CRPS and I just can't find anything, and of course doctors are no help either.

Have you tried low dose naltrexone?

That was the first thing they tried and I ended up having a really bad reaction. I also have a picc line, I forgot to mention. I'm getting 4 different strong pain killers daily and it still isn't doing much.

Hey there,

Has all this happened since your appendectomy a while back? Ugh, of all the rotten things... I am sorry to see you going through so much. PICC lines and feeding tubes do not belong on a young body. :(

I don't remember if I put this up for you or maybe you have seen it already. It is an article by Dr. Schwartzman on the "Systemic Complications of CRPS". It is I hope a worst case scenario kind of thing and not everyone will get these complications but it is useful information. You are right there isn't much out there about internal spread and treatment.

http://rsds.org/wp-content/uploads/2...ns-of-CRPS.pdf

Did you ever get ketamine?

Sending hugs and healing love for what they are worth, :hug:

A LOT has gone on since then, I had litterly got put into a coma to try to "restart" my brain to help my pain, but still nothing. I'll have to go look at that though. They started ketamine infusions last month, nothing has changed yet though. Doctors have basically given up on me, saying that this is my life for now on. But i really don't want to accept that, for obvious reasons. Im in a wheelchair and have a feeding tube, like I'm 18, why would I even think about accepting that as my life for now on. I am losing hope though sadly..

Goodness, I remembered you were young but wasn't sure quite how young. This tears the heart. Of course you would not want to settle for this.

Ketamine doesn't always give immediate results. My PM warned me results were cumulative in his experience and indeed it wasn't earth shattering at first. But improvement did come as I continued to get them. Another member had improvement follow a bit later as well. So don't give up on those yet. I'm glad you started the infusions. There is good literature behind their use.

Remember we are here. You are not alone in this though it may feel so.
:grouphug:

I am hoping for just a tad bit of pain relief from these. My pain is constantly a 10 breast down basically. And i am 18, I've had CRPS since I was 11 though the past year and a half though has been the worst though.

I am so sorry to hear about your struggles and wish I had some advice to give you regarding treatments. I had the pain spread internally to my abdomen after having a c sections last year when I gave birth to my daughter...but aside from the pain and weight that I just can't get rid of and being permanently stuck in maternity pants thanks to said pain I haven't had to deal with too many complications since the spread.

Regarding the drs though...when I was 27 and my RSD was spreading all over very aggressively and I couldn't get any answers or help I had my primary care doctor (who had been my dr all my life and was even the one that delivered me) tell me that I might just need to get used to life in a wheelchair. That was the last time I saw him...made a phone call on the way home with a new dr and my life started to get better after that. I really believe that once a dr has nothing left to offer you...you need to move on and get a new set of eyes on things if at all possible.

My life drastically improved after switching drs...I was able to get out of the wheelchair and back to my full time job (using a walker...but so what) and now have a beautiful daughter who is just over a year old. It was a slow process...but I got there and I believe you can and will get better. You are too young to give up and if your drs can't help you then find someone who will.

If you continue with the Ketamine then I hope they have a cumulative effect and can get you some much needed relief. Take care and remember that we are all here to help you and support you. This forum and the people here have been so important to me in helping me manage this horrible condition.

Oh gosh, I wish I still had doctors to go to lol. The Dr I have now is very caring but at this point it is obvious that there isn't too much left to try. I have gone to so many doctors in the past 7 years, I think I've probably been to every chronic pain Dr in my area XD I even went to mayo for about a month to get the induced coma so I met a few doctors there too, who inevitably have up on me too. My mom has been searching for other hospitals to go to but it seems every one that we call refuses to treat me after reading about me. I can't have any operations, surgeries, anything at all because of this which makes things extremely hard. I am just super hopeful for this ketamine thing.

Hugs. I'm so sorry for all that you have gone through...to have had this monster for so long already at such a young age is really terrible. I know you probably have people ask these things all the time...but have you looked into tDCS treatments or the new Quell device. I did tDCS treatments and while it didn't directly help lower the day to day pain it did reduce the number of flare ups and reduced recovery time from flare ups. Also helped me get more sleep on a regular basis without needing meds...which makes it a ton easier to cope with and manage the pain when you can get a solid 6-8 hours of sleep a night instead of 3 non consecutive hours a night like I was getting before. The Quell device is pretty new...I just started using it back in December and it is helping with the pain all over. It's wearable and lightweight...I have it on several hours a day. If I skip a couple of days my pain levels are noticeably higher and since I've been dealing with some issues after falling off a ladder in October it is noticeable that this device is actually helping. I responded well to TENS unit treatment and stim...but the downside to those is they don't help much with more generalized RSD pain once my RSD spread. The Quell unit seems to be very similar to TENS or stim but works all over without needing to move the device. Plus...no wires. Sorry to go on if this is stuff you have already looked into but they are not necessarily common go to treatments so figured worth mentioning if you have tried pretty much everything else.