New user with CRPS and TOS
 

My left hand burns so this will be quick. But I need help please.

According to my new pain specialist, I have CRPS due to my TOS surgery. He says I am in the early stages. I have burning arm/hand, upper back&neck pain, sweating from chest down(possibly due to hyperhidrosis surgery for profuse facial sweating and redness, sounds pretty huh?)hand weakness and I am unable to do ANY kind of activity without "setting off" the symptoms within 15-30 minutes from the start of the activity. He wants to do the ketamine infusion. I am not really sure I agree with his DX of CRPS, but we are out of options. I do not have severe pain with light touches, such as the feathers seen on video clips, and I do not have swelling or color issues with my skin. What do you think? H owever the burning can be hurt as bad as a
8 or 9 on the pain scale.

Hx: Arm burning and neck pain began in 2004, "Pop" while scanning a patient in neck resulted in Annular tear at C5-C6 with herniation at C6-C7, fusion done May 06. Dx with TOS, but they had to fix neck first to make sure.
Feeling great 6 weeks post op I went back to work as a sonographer. Had sympathectomy for facial sweating and redness, seemed to work. Arm/Hand Symtoms returned within one month of my return to work. Went in for TOS surgery. Felt great for two weeks. Symptoms returned. Only difference, I can hold the hairdryer over my head with out my arm falling down. Negative nerve study and negative carpal tunnel. Last MRI showed buldging above plate in neck at C4.-C5 Age, 38, two small boys, not working, Workers comp rejected. No disability help from uncle sam. BROKE!

Please give me your thoughts, stories, theories, and inspirations(hopefully)

Thanks.

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

I didn't do the sympathectamy for RDS. I did it for hyperhydrosis, however, it may pay a role in my symptoms. Oh, and I did get the blocks already. No help. Thanks for listening, I'm doing all the research I can. Thanks.

hi Dianna, I hear your frustration and concern over this disease. It leaves a person just sitting there in shock when everything was fine previous to the trauma that occurred. I have had RSD now for almost 4 years.

Go the Department of Vocational Rehabilitation in your town. They can help with employment supports and signing up for any programs you might be eligible for. It is a free service and is all about assisting a person to obtain or keep their employment with their disability issues. You don't need a referral just get the initial appointment.

I will be praying for your pain level to be low and that you will find the right treatment. Do get things done in the beginning stages. As I am reading too that that is the best prognosis.

I keep jumping back and forth about the ketamine infusion. Have you done this yet? Do my symptoms sound familiar?

It really does sound like you have it Dianna. The best way that I have had to describe the pain is its like a porcupine, electrical feeling. The burning is just that as if you had been burned. My feet now are red and swell. I have RSD and lymphodema in my left foot.
I do need to keep the medication levels up. I take neurontin 1500mg a day and hydrocodone 750 (4) day.
I tried Methodone and could not do that one, I had slurred speech and not able to get my thoughts out. It wasn't a high either it was like a delay. I felt perfectly fine. Just couldn't talk so not able to work when I was in that state. I also tried cymbalta that did not work for me.
I have had 2 nerve blocks. The first did not work and they went in and did it directly into my leg rather than the spine. That helped a lot.
I am only now hearing about the Kenatine so I didn't realize that was a treatment.
How frutstrating Huh? I almost fear when night comes and the need to try to sleep. The worse time for me.

Hi there,
I am so sorry about what you are going through ((hugs)) I really do hope that things start looking up for you soon
it does sound like you have RSD.
I haven't had the Ketamine pump done. Most PM doctors will only consider doing the ketamine pump if all other treatments fail.
If you need anything just ask, I will try and help you if I can.

Take care
Love
Alison

Hi Dianna,
 

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

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?

Thanks Alison, How long have you been in pain? What treatments are working for you? I'm so sorry you are going through this at such a young age, I hope you get out often with your friends. I feel like such a shut in these days. Good luck to you.

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?

Hi
 

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.

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

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

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..

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

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