Thank you Jo*Mar -

The TOS has been in my right shoulder/arm/chest area. I had been pain free from 2002 until 2006 after rib-resection by Dr. Togut. The pain returned and I assumed it was the TOS again. I saw Dr. Robert Schwartzmann at Drexel University who said it is RSD. Same area but it is spreading. It now is going to my left arm and legs. I get tremors and weakness. Sometimes typing is difficult because my fingers jump to different keys. The Ketamine infusions are scary to me. My local neurologist agrees with Dr. Schwartzmann and said this is my best option. My family doctor is concerned. I can't do physical therapy because it makes the pain worse. I have tried just about everything imaginable. I was told not to have any surgical procedures done because this makes the condition worse. I have to have a gynecological surgery in 2 weeks but Dr. Schwartzmann gave me the ok and said he'd treat me after. As it is, they can't do the infusion until September. He wants me to cut back on percocet but pain is a living hell as you all know. I can't live a "normal" life like this. It causes great depression and not having anyone understand makes it difficult. I'm tired of yelling at everyone. When I break down and cry they understand for a short time and then back to the same old crap. Where are my socks, where are my keys, what's for dinner. My mom says let them figure it out but I have a 6 year ould daughter! I can't leave the house a mess. I don't want this effecting her. I have had this pain for 10 years and it has changed all of my children. When you can't allow your child to lean her head on your shoulder while you read to her it is tough. I just don't say anything and endure the pain. Sorry to go on for so long. I had felt if I avoided this site I could pretend I didn't have this any more. Obviously it didn't work. Linda

Strangely, my RSD went away after my rib resection. For about 3 years. It raised it's ugly head about a year ago, and I had to go to ER for the morphine infusions, and everyone there was saying, "what is that red stuff on your neck, chest, arms?" I said, "that's RSD! No, I don't sit in the sun, I am bedridden! (We live in the desert, so there are lots of red people running around.) Anyways, the hospitalist gave me Ativan before some MRIs and guess what, the redness went down...then the Ativan wore off, and the redness came back...so we put me on Ativan, small dose, three times per day if needed. It really does work for me in that way.

Also, I have to calm myself down. Easy to say when my kids are grown, and I have a home aide, etc. But there are lots of scares here, don't want to go into them, but I have to lay there and force my brain to calm down, as it does bring up the RSD.

I had RSD really bad for four years. I don't want to describe it all and put those thoughts or pictures in your head.

I just want you to have some assurance that no, not all surgery triggers RSD. It does in some. But in my case, the RSD came during the four years fighting for surgery and then when I had better circulation the RSD and headaches subsided, and the progression of the condition slowed way down.

Now, have you had your blood sugar checked? Why? RSD seems to have a connection to the high blood sugar, too. Just a possible clue.

Btw, RSD did not give me tremors or weakness, nerve damage did. I don't know why the docs believe that TOS cannot cause other nerve systems to be damaged, as I firmly believe it does, as my TOS symptoms went to my left foot / calf. I have no spinal disease in that area to attribute it to. And RSD was topical, like a sunburn, like blisters, like psoriasis, even though it had deep pain. The pain on my foot / calf or when those few times my legs simply don't work - that's nerve damage. In my opinion.

God, I hate doctors...

I don't know how we're going to live like this forever...

But get off Percocets and try Fentanyl patches - those are working for me better longer - I use Vicodin (right now, cuz I constantly have to circulate drugs as I build allergies so fast, but now we're back to Vicodin.) And the Ativan.

OH - forgot about the Ambien. Now other sleep meds don't help my TOS but Ambien seems to help the pain stay lower for a day after using Ambien. I am going to ask my doc if I can take up to two a night - right now it's less than 30 a month. But I need to check side effects first...always those damned side effects...

God bless you sweet heart...keep fighting...maybe you want to PM me the surgery you're having - I may have had it, and can offer further assurances?

Love, Tam

Hi Linda,
I forgot that you are a patient of Dr. S. Did he offer you the lidocain IV treatments as less invasive start? Or H-bot.
Dr S does not believe in narcotic medications. Really it is amazing that you can manage on the Percocett.

My Tos was mainly right sided, but the left shoulder, wing, over the collar bone, up the left side of the neck to skull is a massive spasm mess. I can feel the triggers and am working on those spots, along with the hot tub, I have the biofreeze. I use the tens too, almost all day when I am working but I do not have Allodynia hyper nerve signals that it would aggrivate,

sneding hugs and hoping the pain reduces.
Oh, when we are tight, in fight or flight mode, with the shoulders up to the ears it is a trigger for higher pain. Have you seen anyone that teached biofeedback? If you can learn to get the endorphins kicking in and the body lossens you will feel better,
Hugs
di

Thanks Tam and Di for your responses. First, I know Dr. S. wants me to cut down on percocet but I don't know how when pain is so bad. I take neurontin since seeing him but do not notice a difference. I take temazapam(?) for sleep. I can't take ambien, I had bad side effects. I am on blood pressure medication. Also, I have started a biofeedback program but am not sure if it has helped yet or not. I have alot of stress and don't get much of an opportunity to relax. I do the biofeedback once a week and will see how it works. I feel I have some good local doctors along with Dr. Togut and Dr. Schwartzmann. I'm not sure where all of this is leading but am open to different ideas and suggestions. As you all know, you can't live in pain like this. Any information is greatly appreciated. Also, the support is wonderful. Thanks, Linda

Personally Linda, managing TOS on percocet is nothing. I can't seem to justify the reduction of opiads for pain management, but then advocation of Ketamine comas. Not that Dr. S is not one of my Fav guys, but someone it is apples and oranges.

I have taken as needed the percocet and darvocet for years without problems. I do not really refill every month, but the valium 10 mg is is my best management of spasms.
Do you use a hottub? That has been the best thing for me. Along with doing as least as I can. Not always the option though.
feel better
di

Di, I agree, saying to stop percocet and then doing Ketamine is a little odd. I have been doing alot of online research of ketamine infusions and I believe I understand that the bombarding of the nervous system with this drug is supposed to work. I just can't stop taking percocet. Neurontin has not changed anything yet and as we all know, you can't just stop taking percocet. Especially when the pain is not gone. Actually, my pain has been worse recently. I have not stopped "normal" activity because I can't. I have been taking xanax for anxiety but I don't want to get too involved with that. I'm hoping this biofeedback will help but I feel while I am there I relax, then I leave and am back to the same old routine. Dr. S. did say red wine is good. Not a great thing to tell me because I love red wine! Just a good reason to pour a glass!! I think I need to acknowledge that I have RSD and make the others in my family understand. To them it is just a word and mom is still going to do everything she normally does. And yes, I have a jacuzzi tub in my bathroom which I have been trying to use once a week. I am going to try to use it atleast every other day. It's just doing it. We also have a hot tub out by our pool but it's alittle far to walk in the cold. I'm going to have my husband update the chemicals on it and try to get out there. We have a pool house so I can always change in there if it's too cold to walk out there in a robe. Thanks again!! Linda

Beth did Ketamine. I do not believe she is "big" on it - although I don't want to speak for her. The neuro at my hospital said the only ketamine to try is in Germany...(like I could make the flight...) but I wouldn't do it from my own research. Everyone must research it and talk to someone who actually did it.

You need a pain mgt. doc as there are so many more drugs than Percocet, Neurontin, etc. And check here by posting if anyone has had any weird side effects, as I think we are a big enough group that we've got a lot of good feedback now on meds.

I'll check the PMs. God bless.

Linda,

You said when the pain came back you thought it was the TOS again, but turned out to be RSD? In what ways was the pain different than the TOS, or was it?

Dr.S is my Doc too, Iv'e had this monster TOS-RSDx 15 years.He is the best....
I was scheduled for Ketamine but chickened out...
I'm in a horrible flair as we speak and know what you feel
As for the Percocet, my RSD began after a c-section in which they cut my bladder in half,the TOS was from an MVA in 92. I don't know which pain was worse...well OB prescribed Percocet and I felt I couldn't get off of them, took them for three months. My primary Doc who is a friend of mine said to me, "listen, flush the bottle today, be done with them or you will be on them for 10 years. I took my last one that day. Just my experience.
I drop things, have tremors, numbness, redness of neck, chest and arms. I'm in a bad flair now because of vacuuming, lifting and my five year old who sneaks into bed in the middle of the night and I wake up on my side, twisted, contorted and unable to move.Oh and any driving over 30 minutes or so (the seat belt, the way in which you hold the wheel)
When I'm in a state like today, I take a hot bath/shower, lido patches, a soma, then a Darvocet and 400mg of Motrin....this combo usually breaks the cycle, temporarily
then I still have to care for the kids, the house, can't drive with the meds......it's exhausting
My family will never understand this, bottom line.

I hope you get some relief...