New user with CRPS and TOS

dianna · 01-11-2008, 01:32 AM

Quote:

Originally Posted by dreambeliever128

Welcome to the forum. Sorry to hear that you are going through this.

You sound a lot like I did when I first started. I had TOS surgery and ended up with RSD. As Gigglebabe said, I have never heard of the sympatheomy working for anyone for any long length of time. Most people get worse because of them I do believe.

A lot of people are talking about the ketimine infusions on here. How are you having them done? My Dr. gave me ketamine shots along with other meds along the way. Triggerpoint injections they are called. It takes many of them but it was one way of getting it calmed down. I had the burning in my chest, neck, hands arms, back. Like you, I was a mess. I had 3 SGB's and they did help.

I had TOS surgery in 2000 but I do believe I already had the RSD and it just wasn't diagnosed until after the surgery. I was pretty bad off before the surgery.

As far as the disablility. Someone will most likely find this article for you that I am talking about. It's for Social Security for RSDS. I believe it's some new bills SS has passed. You can get SS on this. It might be a fight but it can be done.

As far as work, if you want to go back to work, do as one said and check into rehab. It will be a long battle and they might still tell you they can't get you back to work. That's what happened to my husband years ago. They tried to rehab him and then decided his health was too bad. I hope that won't be the case for you.

Welcome to the forum and you will get a lot of advice from these good people here. It seems like we have been through everything there is to go through at this point all together.

I am on Methadone for pain. Most people can't handle it. My dosage is very low but I have noticed that if I up my dosage my pain does pretty much go away for what time it's in my system. I am close to remission though. It took 7 years to get to where I am.

Like you though, I have neck and back problems. I was also diagnosed with Fibro, Cronic Pain Syndrome and Central Sensitation Syndrome around the same time as the RSD. The TOS Drs. in Denver diagnosed all of those. The reason I am telling you this is sometimes people have more going on then just the RSDS so you might want to address that ideal. Fibro comes a lot of times with RSD.

Lyrica is a new med out for nerve pain. People are swearing by that one.

Good luck and welcome again to the forum.

Ada

Thank you. I will ask my doc about the Lyrica on my next visit. Has anyone recovered completely from CRPS? Do you think I should put off the ketamine iusion until my condition becomes worse or do it now?

CZZ74 · 01-11-2008, 05:30 AM

So sorry to hear you have been diagnosised with RSD, It does sound like you do have it. the blocks are very important early on as they can put you in nto remission. there is no cure. Ketamine is also a wonderful resource early one- although it doies not work for everyonte. use the search this forumn key for " ketamine" and you uwilll get all the information you need. I coulldnt makee it with out it but everyone is different. The key is to keep the pain managaeded. When the pain is uup RSD is spreading- it is very opportunistic. BE sure to read the intactabel handbook quide, it it indinsible. Meds alone are not enought. Thisis the best mannual I have ever found for our disorder, accepting it and managing it. Good luck and keep us posted.
CZ2007
Coma in Germany Ketamine, May
Booster Infusions continuing now.

dianna · 01-11-2008, 09:53 PM

Quote:

Originally Posted by CZZ74

So sorry to hear you have been diagnosised with RSD, It does sound like you do have it. the blocks are very important early on as they can put you in nto remission. there is no cure. Ketamine is also a wonderful resource early one- although it doies not work for everyonte. use the search this forumn key for " ketamine" and you uwilll get all the information you need. I coulldnt makee it with out it but everyone is different. The key is to keep the pain managaeded. When the pain is uup RSD is spreading- it is very opportunistic. BE sure to read the intactabel handbook quide, it it indinsible. Meds alone are not enought. Thisis the best mannual I have ever found for our disorder, accepting it and managing it. Good luck and keep us posted.
CZ2007
Coma in Germany Ketamine, May
Booster Infusions continuing now.

Where do I find this intactabl handbook guide? So it sounds like the ketamine is working for you, but you still have some pain. Would you mind explaining your current condition before and after the infusion. Oh, and did you go into a hospital for days using a high dose or the low dose. I'm kinda confused on the infusion. I saw a video clip for one done in a hospital. Yet my doc wants to do one to me in his office from9am-3pm-is for 4-5days and let me go home at night with an IV bag.

Thanks for your help.

wakegirl · 01-12-2008, 01:56 AM

you said your injury occured in 2006 and you dont qualify for s/s disability? did you apply and were rejected or have you yet to appeal. obviously your injury influences your home life, what about your ability to maintain employment. do you have at least a year of full time employment history? if you meet the qualifications, have the physician evidence to support your claim, someone from home who would be willing to say yeah her injury has messed with our lives, then i would say apply. if you have been rejected previously i would find a lawyer in your are who works on a winning percentage scale so you don't have to hand over money you dont have. most of the good s/s disability lawyers have a conseltation period where they look over your case to see if it has potential, and it gives you the opportunity to see if you feel comfortable that they will represent you as you need,
good luck
it took me almost 3 years of no income to get s/s disability coverage

ali12 · 01-12-2008, 02:38 PM

Hi there,
Many thanks for your reply. I haven't found any medications that work for me yet, I am currently taking Lyrica (Lyrica makes me sleepy), Baclofen and Tramadol. I don't get to see my friends that often, but my mom always makes sure that I can go out with my friends when I want to.
How are you??
Thanks
Alison

Desi · 01-13-2008, 05:53 AM

Quote:

Originally Posted by gigglebabe

First welcome,.....second, I'd never ever ever have a sympathectomy with RSD, ever...thats like the worst thing to do....read up on this alot...

third....if your early stages, get stellate ganglion blocks asap..read up on them..they can help with remissions in very early stages......

Good luck .. read and research everything, never jump into anything when it comes to RSD.

Debbie

Hi! Debbie gave you some great advice. I am having the stellate ganglion blocks, and yes, she told you the truth.. NEVER EVER have a sympathectomy with RSD.. EVER! Great post Deb

Get those blocks Now.. I had one put me into remission for 2 weeks and 3 days.. the pain was gone and it felt great. Yes, the block didn't help me this time around again.. but ya knever know when I go and get my next SGB I may go into remission again for a week? month? year?? GET THEM STAT!

ok.. off my soap box for now.. LOL

and you hang in there, OK??

again, Debbie!~Love, Desi

~Love, Desi

vanityfaire · 01-15-2008, 01:54 AM

HI Debbie, you asked me if I would do the ketamine. I too have just found this site and have had lots of questions. I think I have been in a lot of denial and now must have a reality check. The pain is progressing and I am not sure what is next. I keep very busy working full time, going to school full time and running my own jewelry business online. I also teach behavior disturbed children how to make glass beads on an open torch..I am a lampworker. If I thought that my pain would improve I would do it. I would take the time out of life and just go for it and hope for the best. Living with the pain and the limitations can be very frustrating and you with your small children probably wish you could be playing on the floor and running through the grass. If your life could improve even if it was for a short time. I would do it. But we each have to weigh out our options. I wish I was closer I would help you with the process so you wouldn't have to worry about things. Praying for you sweetie.
Your online buddy..

frogga · 01-15-2008, 04:01 AM

Hi Dianna

Has your PM dr tried any meds to control your pain? I know one member who has had amazing success with ketamine infusions since having RSD secondary to TOS. I take oral ketamine (100-150mg) per day though will not (currently) consider the coma because of other medical stuff that makes it more dangerous for me to have. I have RSD and generalised dystonia after a fall when I was 16 (I'm now 22) and have it full body. The ketamine has helped the most with the pain out of all the medication and sure beats oxycontin, MST, methadone, fentanyl, you know. Stuff like that. But in the end it can only be your choice whether to try it!!!

Best of luck and let me know if you want more info about oral ketamine.

Take care

Love

Frogga xxxxx

flippnout · 01-16-2008, 03:29 AM

Diana hello I have TOS along with RSD also it was really bad (meaning both) my TOS was really compressed and my RSD was untreated for so long my only option at the time was a sympathectomy to be done I do not know if it has helped me I can say with meds and the operation for the TOS and sympathectomy I am a little better I also have spine problems that are getting worse.

The sympathectomy has messed me up with no sweating on my right side at all and am very cautious of sunlight on my affected area because I can feel it burning more my nerves are wacky and I'm either too cold or too hot I sweat on my other side more because of the sympathectomy be careful I wish you well on you shots they did nothing for me at all, I wish I could have trigger points but all my trigger points are affected with RSD so no good it would be too painful so that was ruled out for me as well as my shots in my spine which did no good I prayed they would help me I wished so hard for relief.

Diana good luck to you it is a rough road we travel with RSD and TOS and through in a sympathectomy if you study it is a whole can of worms there I have pain 24-7 and at times as you know which one is hurting the most right I pray for ya.

I hope you can apply for ssi which is different than ssdi talk to lawyers who deal with only that (ssdi and ssi) they can help you good luck and things will be ok again if you need to talk about things I have had the sympathectomy also.

tayla4me · 01-16-2008, 12:33 PM

Quote:

Originally Posted by dianna

Yeah, nights are hard for me as well. My kids keep me going with or without pain. At night, when its quiet, I am more aware of the pain. The porcipine electrical feelings are a perfect description for my pain.

I had two ganglion nerve blocks and two trigger point injections. Cymbalta gave me TERRIBLE nightmares! It seemed like I tried neurotin or trazadone for a while but it was to hard to get up in the AM and my 3 & 5 year old dont give me any breaks in the AM! My doctor feels that the ketamine is my final hope.

I cant help wonder if my c4 buldging disk is causing all my problems. My pain is constant, but worse in different positions.

Would you do the ketamine infusion?

Dear Dianna,

Hi and welcome,
I wonder if your c4 bulge maybe causing your symptoms rather than RSD/CRPS?
Whilst you do have some symptoms of CRPS you do not have some either.
There are many problems which cause pain but the diagnosis of CRPS is dependent mainly on symPtoms.
I would really investigate the disc problem and perhaps alleviation of that issue may also alleviate your symptoms.
Can I ask what type of doctor diagnosed your CRPS?
Wishing you heaps of luck and as someone who is a Ketamine regular I would truly recommend it if you do have RSD/CRPS.
Take care
Tayla

Similar Threads
Thread	Thread Starter	Forum	Replies	Last Post
New User Looking For Friends!	britanie13	Epilepsy	5	11-05-2007 03:58 PM
New User Looking For Friends!	britanie13	New Member Introductions	2	11-03-2007 11:27 AM
New User Of Anodyne Therapy	salsen	New Member Introductions	5	08-24-2007 04:10 PM
User CP question	KimS	Community & Forum Feedback	3	10-12-2006 08:45 AM

Site Navigation

NeuroTalk Online Support Groups

New user with CRPS and TOS

NeuroTalk Forums