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.

Blazed,

Please bear with me and my LDN questions. What was your bad reaction? And in what form where you taking it? Because you took LDN so long ago it may be that there is updated info of which you may not be aware.

I belong to an LDN FB group which has a vast number of members and massive amounts of in depth information. It is known that fillers can cause negative reactions, not the LDN. Improper dosing can run the gamut of doing nothing to causing violent nausea. Some LDN has been found to be compounded with next to no potency and with certain fillers that cause allergic reactions.

Retrying LDN in the pure powder form using an acidophilus powder as a filler has been successful for posters who had reactions to other fillers. Also mixing it yourself can be beneficial, because you can slowly increase the dose until you find the optimum one for you. Many members have more informed doctors, who give them prescriptions for the 50mg pills and instruct them to do this. It is also the most affordable way to take LDN.

Also at the beginning of taking LDN at higher doses people "herx," it actually indicates the LDN is working. I did not have this reaction-probably, because I started "low and went slow."

I realize when I said that it was the first thing they tried it sounded like it was when i was 11, but it was the first thing they tried after they finally accepted and diagnosed it in my stomach, so that was about 4 months ago.
I had gotten very bad hives, along with nasty looking blisters that would pop and be gross, and then my mouth and throat would swell up, which is my most common reaction to most medicines, I am allergic to A LOT of things lol. So they just refuse to give it to me now as my reaction is life threading. I also am unable to swallow any medicine because it will go to to my stomach. Which would cause me to vomit it up with in minutes. Which is why my feeding tube goes past my stomach to the small intestine. If I was capable of trying it again I would but I dont think its possible. Also you mentioned that some forms of it can be mixed with something else, I believe is what you said, and I was given just pure ldn with nothing else . thank you sooooooo much for suggesting it though. I'm glad there are people trying to help, I just wish I had more options XD lol. Why does my body hate me So much.

Mbsr
 

Hi there..

I too do Ketamine infusion at Stanford about every 3-4 months for 5 days in-pt. Mine always take about two weeks to kick in and so far they have all been slightly different in how well I respond or how long it lasts. I have had full body CRPS II and Arachnoiditis since 2004. It started after a back surgery. Woke with Pain in leg and foot and eventually it spread everywhere.

Anyway.. All this to say you might consider MBSR http://www.mindfullivingprograms.com/whatMBSR.php

Dr. Jon Kabat-Zinn has a fantastic book called Full Catastrophe Living
http://www.amazon.com/Full-Catastrop.../dp/B00115MP3S

You might be able to get it from the library. If you google his name you can find tons of his stuff on YouTube. It is helpful. Another tool in your box. :hug:

Blazed,

Your story breaks my heart. I hope there is something/someone that can bring you relief.

There is a known combination of two items commonly used in LDN compounding which can cause the exact reaction you describe. http://naturallysavvy.com/eat/this-i...te-is-so-scary.

LDN can be compounded into a transdermal cream. I have read that it is made specifically for children who can not ingest LDN.