Hi,

My Name is Deb, and I was diagnosis with RSd after having Rotate Cuff surgery. The diagnosis was just three weeks ago, and I had the surgery in Dec 2011. I knew about 9 weeks something was wrong. I had the Stella Gal lion Block , done and it didn't work. Now on 600 mg of Nuerotrin . I have all the symptoms , except the burning and sweating...never did at least not yet.I do have the deep, cold aching form of neuropathic pain. I also have pins and needles , use to be in shoulder area ...now going down arm. I Just stopped in to introduce myself and hoping for any advice you might have.

Thank You
Deb

Welcome to NT!

You've come to a great place for support and understanding.
I'm sorry that you battle this very frustrating condition.
The folks here are wonderful and you will get alot of caring feedback.
You certainly are not alone in this.
It's great to have you!

Rae

Hi Deb and welcome. Like Rae said, this is a great place for support!

Sorry you are dealing with this! Question - is your dr going to attempt any more stellate ganglion blocks? In my experience, it always took more than one to get results.

All the best,
Nanc

Hi Nanc,

I am not sure ...but he put me on Neurotrin , he didn't say he would when I go back to see him. Did you have the burning and sweating? Because I haven't and hopefully never will. I am on workers man Comp, and I have to see their Doctor on the 20th. I looked him up and he isn't a specialist in RSD. I don't care I just cant imagine anyone who would fake this disease.

Welcome and I am very sorry to hear what you are going through Deb. And dealing with work comp in the mix...been there done that and it is not fun.

I don't know how much you have researched RSD at all...but it really is an absolutely crazy disease. You do not need to have all the symptoms to have it. In fact...I always laugh when someone says "textbook case of RSD" because really there isn't any such thing. We are all different and not only have different symptoms (though many are shared in common it's just not unusual to be missing one or two) but we all get relief from different things.

Just two things that I feel you need to be aware of that I HOPE the doctors have already told you but maybe they haven't (as I have little faith in the medical profession after my own experiences). NO ICE and do NOT IMMOBILIZE/GUARD the RSD limb. Seriously...if you remember only two things please remember these. Ice and immobilization are two of the worst things you can do for RSD and it will only make it worse. Even if you cannot move much because of the pain (and believe me I have been there) you still need to move as much as you can. The longer you immobilze then the worse the pain will be and the harder it will be to treat. And ice can make the RSD worse as well (not to mention cause spread).

Heat is typically good for RSD and many of us get relief from it (like I said though everyone is different so there are SOME who get a bad reaction from heat or find no relief from it). Hot baths with epsom salts are a favorite of mine and I take them twice a day to help with the pain. I also like those stick on heating patches you can by at Walgreens or the grovery store.

I also have a TENS unit that helps me a lot with my RSD and an ultrasound heat therapy machine that helps as well. I found out both of these helped through physical therapy. Are you in physical therapy? That is (in my opinion) the absolute best treatment for RSD. It's hard and you really need to have a good therapist who knows what they are doing but SO worth it to get the function back.

And a newer things that I highly recommend looking into is tDCS. There is a thread on here about it and I think it should be the starting point for people with RSD rather than and afterthought after everything else. It is non-invasive (no risk of spread), little to no side effects, and it is relatively cheap as far as treatments go (cost me abour $300). I've been doing it a little over a month now and the sensitivity to touch and pain have been greatly reduced. Plus...I'm sleeping better and have had less flares since starting the treatment and the ones I have had last much less time than before.

But whatever you decide to go with in terms of treatments, please do your research ahead of time and understand the risks of each one. Aggressive, early treatment is really key and gives you the best chance at remission.

Oh...and also...definitely keep your doctor posted on how the meds are working. If you are not getting any/much relief then tell him. It is normal for RSD patients to be on a combination of meds and sometimes it's about finding the right combo that works for you. But you need to be really honest with the doctor about the relief you get from the meds and if it's not enough don't try to be brave...TELL HIM.

Good luck to you and take care. NT really is a wonderful place and I hope you get as much out of it as I have over the past couple years.

Hi Catra

Thanks for responding...I found out about the ice , from another site. I just started back to PT and she is going to get orders from the Pain Clinic doctor for the RSD part. Because she said treating the rotate cuff part will be hard due to my sensitivity. I am seeing the Pain Doctor on April 20 and he said he probably will raise my medicine. I am on 600mg right now and still in a lot of shooting pain , tugging feeling in top area of shoulder. Pins and needles from top of shoulder , down to biceps area ( hate them) . I am assume , that's all the pain doctor is doing, is raising med. For work they wanted me to go back to work pt, but with the pain and lightheaded and I have to drive 45 miles one way. I told them I don't feel safe and the doctor who did the surgery put me out of work , for two weeks. Because he said it takes time to get use to this medicine, but honestly still lightheaded and in pain. I go back on this Tuesday to see him. I also have to see their Doctor for workers Comp on the 18th and I looked him up and all bad reviews. I guess he is just for the Insurance company. Funny thing he doesn't specialize in RSD. First time being on workers comp and it hasn't been great at all.

Thanks again..and anymore advice feel free to email me back

Deb

Hi Deb, I sweat pretty bad, and I also had the burning, stabbing pain. Like Catra stated, everyone is different in their symptoms. I do not have the discoloration that a lot of RSD folks do, but definitely have RSD! Getting diagnosed correctly for my hand in 2009 was difficult because I wasn't "text book" with all the symptoms. Because of that delay, it spread like crazy. I already had it in my face, diagnosed I 1991-1992. When I was first diagnosed they treated me aggressively with nerve blocks and meds, that put me into remission for 13 yrs. Because of the delay with my hand, the nerve blocks didn't work as well that go around. This is why I suggested that the dr administer more, and soon.

I could not tolerate neurontin, and most meds. I also can not stand heat or ice, hot or cold water, PT or a tens unit. My lifesaver is my two spinal cord stimulators. So, everyone is different. You definitely need a dr who knows something about RSD.

Good luck to you!
Nanc

Thank You for the warm welcome..I was hoping to find this site. To ask questions, and meet some new friends along the way.

Thanks
Deb