Hi,
I am feeling really overwhelmed right now. I just got back from my family Dr.. I brought up to him the problems that I have been having with my hands swelling, my arms turning red etc. It has now moved into my face and eyes etc. He has confirmed for me that this is indeed RSD. He says there is nothing we can do for it other than what we are already doing for the TOS. He said that any nedications he would put me on I am already on. His words were, "you and I both know you are in pain, but I am doing all I can for you, so I think it is time to suck it up."
Then we went on to talk of the joint pain I am having in my knees and hips. He believes I have Lupus, and sent me for blood tests for it. He says even if the blood tests come back normal he will send me to a rhuematologist.

I thought the TOS was bad enough, but now RSD and lupus? I just want to lay my head down and cry.
Tracy

Hi Trix,
Hang in their. Make sure the root of your problems are taken care of. Hugs, Roz

Trix- I'm sorry about both the news you got and the way that it was delivered. I'm not familiar with your entire situation, but have you found a good Pain managment doctor? I had no idea what they did until about 5 months ago, and I think that seeing my PM vs. just seeing a neurologist or primary care doc has made a world of difference.

Trix, your doctor will likely agressivly order many test to rule out conditions that mimic TOS. I would not be too worried, wait for the test. When I started into a few years of this I started with the hips, knees, joints, diagx as fybromyalgia, also myofascial trigger points,

Many TOSers have seen so very many doctors and so many years to really get an idea of what is going on. As the doctor said many of the symptoms are treated with many of the medications you would be on. I hope that you are able to find a platue, right med routine and find more answers and resolution.

Many hugs,
Di

Trix I am really sorry. It is a poopy (to use Tam's word) dx to receive. You have been really strong up to now and you are going to have to remain that way to get yourself on the right path. We're here to support you- I would definitely be on my way to another opinion or two.

There is a LOT of good info regarding RSD that can be found by way of this forum. Read it, form opinions, take the info back to your doc...

I thought standard protocol for RSD was to do the Stellate ganglion blocks and the lumbar (not sure what it's name is) block?

If "all you can do" is nothing more than you are doing, perhaps another doctor IS the way to go.




stay strong

Johanna

Trix,

Sweetie I am right there with you. Literally. The last 3 weeks my hands arms and feet have been turning red and swelling with some weird feeling on them. My eyes face and lips are burning too.

I went ot my Primary care doc and he suggested that maybe I should enjoy life, that is not RSD and that it's all in my head. I will not say what I called him after that and several days of crying.

Well I went back to the nuero surgeon and he did a stellate block. I got 3 days of releif and then it came back last MOnday. The nuero said I could nto confirm RSD.

I have been freaking for 3 weeks. Crying like crazy. I had to keep going so I set up an appt with an RSD spcecialist (thanks Hope!) and we are working on it. Today we did some more blocks and there might be some more. He says it can be controlled.

So cry all you want today. I did. Then take things into your hands and lets get you to a pain doc because you cannot let it go. The rheumy is still good to go too but get to a pain doc. Blocks might work for you.

I am here for ya and if you want to talk since we seem to be on a similar path. Just pm me and I will get in touch with you.

I have also been reading alot of stuff on RSD and have learned some things which I am trying. First is get some epsom salts...soak in em. Mrs D replied to me on a thread today about procardia in the meds section. She had a couple suggestions including the epsom salts.

There are many great peeps on the RSD forum who have great suggestions. Visit there.

Hang in there.

If RSD is truly suspected, your family doc should certainly refer you to a pain management doctor for a SGB (stellate ganglion block) to confirm that diagnosis. You should insist on a referral to a pain doc that knows how to diagnose and treat RSD.

I do not know what meds you are on, but treating RSD usually takes more than medication. It can be a combination of therapies to attempt to beat it into submission, including nerve blocks. A pain doc is usually the one who has the tools to do this kind of treatment.

This is not about "sucking it up"...aggressive, timely treatment is appropriate for RSD or RSD like symptoms (sympathetically maintained pain). It isn't about "accepting" pain, it is about managing those conditions that cause pain, to allow you to have some quality of life.

best of luck.

Amen Anonymous...you said just what my new pain doc said after he told me to fire the primary care doc that told me its all in my head.

I am so sorry that you have been diagnosed with RSD. I was so worried when you had posted earlier with your symptoms of the red swollen and burning hands that RSD was the cause. It is vital that you get into a Pain management Dr. You should start to have stellate ganglion blocks ASAP I have read that these need to be started within 3 months of onset in order to try to put it into remission or prevent spread. If I am wrong I hope someone will correct me. But it is imparative that you see a pain management Dr and that would be (Now).. As I have been told this is a Ugly Monster and this is not something that anyone wants around..
I am 1 month post op from a TOS re do and have a very angry ulner nerve and I am currently on the border of not knowing if I have RSD setting in or not. My Dr has me on a dose of steriods now which aren't working. I will be heading for a stellate ganglion block in a couple weeks if my symptoms persisit and this is not where I want to go but it is where I will need to be if the other treatment doesn't work.
I am so sorry for everything your going thru.. A triple wammy.. I do hope that they are able to rule out the Lupis..
My heart goes out to you Trix..
Please see a pain management Dr ASAP...
Many Hugs to you
Dawn

Trix, with all due respect.....your doctor is a heartless moron.

Nothing more can be done ? How about adequate pain relief ?

Suck it up ? If only we could think of quick retorts......You should have said, "Okay, and if I kicked you hard in the nuts would you writhe in pain on the floor or suck it up, doctor ?"

Sorry for the language all, but that attitiude just infuriates me. I
had a doctor who acted very similarly with me. The words my doc used were "You need to suck it up and work through the pain." He also told me that my only problems were depression and lack of exercise. He said there was no way I had TOS (which a IME doc for WC told me I had). He discharged me after my second course of PT, when I complained (after completing both courses of treatment) that my pain had gotten significantly worse with each round of PT (all weight lifting....no myofascial release). That was the best thing that could have happened. I randomly emailed a vasc surgeon who's name I saw on a TOS site. He saw me a few days later, after a 4 hour thorough exam, dx'd TOS, ordered brachial plexus MRI, and sent me to a neurologist to be followed while doing myofascial release PT. One of these days, the idiot physiatrist will get a very snitty letter.

Most pain management cases can be treated successfully, its just that a lot of docs aren't interested in helping us get there.

I'm so sorry that you have to go through this Trix. Compounding your pain with a lack of compassion (and ignorance about how to acheive adequate pain control) is just cruel.

Please ask for a referral to a doc who has experience in treating patients with RSD.