[Littlebytes2]

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

[Rrae]

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

[Nanc]

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

[Littlebytes2]

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

Originally Posted by Rrae

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

[Littlebytes2]

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.

[catra121]

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.

[Littlebytes2]

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

[catra121]

Yeah...I forgot to mention that you need to be careful with the work comp docs. Just be honest but also realize (which you already seem to) that they do work for the insurance company even though they are supposed to be "independent". I lucked out that the first one I saw agreed with the RSD diagnosis but that was sort of an odd situation where the doc work comp hired didn't want to see me and pawned it off on his partner...so they didn't get the doc they expected. But the other 2 I saw were pretty bad. Not in person so much but when I read their reports it was the complete opposite of what they said and how they acted in person. They use loaded language to IMPLY that you may be faking or exaggerating even if they see absolutely no evidence of that themselves. The very last one I saw actually watched me go out to the car with my mother from his office and was in the waiting room while I was waiting to see him (I assume to watch and see if I did anything that I said I couldn't). He actually wrote in the report that he wasn't able to see me enter the car but that I didn't need to be "lifted" into the car. I never said I did...my mom would not have been physically able to do that in any case. But he said my mom's position behind me (holding the wheelchair) prevented him from having a good view. Like I knew he was watching me and I did that on purpose...seriously? I don't really care because they could install frigging cameras in my house and they would never see me doing something that I said I couldn't do...but I felt so violated that this man was watching me like that. And then he didn't even see anything but felt the need to put that in the report in a way that seemed to imply I was faking anyway. Made me so angry.

The problem is that RSD is a clinical diagnosis...there is no definitive test that says yes you have it or no you don't. I don't know how ONE visit with a work comp doc really puts them in a position to say if you don't have it. I mean...I tell them about my symptoms, the medical reports from other docs say that THEY have seen some of the symptoms, but on that particular day at the exact moment of that appointment who knows if I will have the cold temps, the color changes, swelling, etc? I usually have at least one of those at a time but I have honestly had work comp doctors look at my swollen ankle and tell me it's normal or that the cool temp of the one leg is just circulation problems or that I just have a sunburn (when I have not been out in the sun at all of had that area exposed to the sun at all).

Easy to say, "Why would someone want to fake this condition?" and I agree with you but the answer you will get from work comp is, "So you don't have to work." Even if you ARE working or want to work...they still say this bogus garbage and use that to justify everything they do. I actually had to listen to their lawyer say that I was exaggerating...that all I had was a sprain, etc in court and all I could think is, "Seriously? I got injections into my spine, have been in a wheelchair for months, undergone a zillion tests, had so much bloodwork done that they know me by name at the blood draw office...all for a SPRAIN? Are you kidding me?" But whatever. I know it's their job but they caused me so much additional suffering and stress and delayed medical treatment. I am so very happy to not have to deal with them anymore. Just an awful experience.

Hopefully...you have a better experience than I did. But just be careful and realize that no matter what they say to you that they will use anything they can against you even if they have to make it up. I hope that you have a good attorney who can help you deal with all the work comp stuff. That can make all the difference. Good luck to you.

And one more thing...I would try to talk to the physical therapist about desensitization as part of your therapy. It is an awfully painful thing but it really does help to normalize the sensations on your RSD areas and can make things so much better long term. And I would also make sure that they give you exercises to do at home and do them every day. I did physical therapy at home this past time and the best thing about that was that I was able to do all my exercises every day because they didn't require any special equipment. I felt like I made so much more progress and it was steady progress because I did the exercises every single day...my physical therapist felt that way too. Progress felt slow at the time but I was able to do something new/harder every single week and I really made a lot of progress every month which was easier to see in hind sight than at the time.

When it comes to the meds I would maybe ask the doctor about possibly adding in an anti-inflammatory, anti-depressant, tramadol (for pain), etc. Only ever go on ONE med at a time...but sometimes its the combination of meds that makes the difference. I wouldn't really suggest specific ones but probably just ask generally about the idea of a combination of meds. Neurontin really didn't help me much but I know it works great for some (though many of those are on much higher doses than you are on). Another possibility to ask about might be lidoderm patches...it's lidocaine (in patch form) that you could put right on the RSD area. They don't help a lot and I try not to use them more than a couple times a week but sometimes it's just that extra little but that can make a difference between the pain being tolerable and not. I also like to use the lidoderm patches in combination with the heat patches...that seems to give me even more relief because i have both the lidocaine and the heat helping. But of course...your doc will make the final decision when it comes to stuff like this...but sometimes if you just ask the open ended question that starts the conversation and gets them thinking about different options.

[Littlebytes2]

Hi Catra,

Yeah I talked to my lawyer and he has dealt with this doctor before and the other doctors at this firm. He already told me they will say I am fine . So it will all depends up to workers comp if they want a hearing on this. Its just sad how they lie and how they can live with themselves after. I cant believe it in a wheelchair and he still accuse you of lieing. I will be honest I am bringing my sister in law who will be taking notes and I will be secretly tape recording what he says. Just because I can review it , even know I cant use it in court. I do have the Liboderm patches but like you said they don't help much , especially for me with the pins and needles. I will talk to him about the medication. My PT is working on getting the orders for desensitization, she said the same-thing need to work on that first before we can treat the Rotate cuff injury again. Today between the pins and needles and my arm reacting to my shirt, this just started happening today and the pain...and the lightheaded , I am surprise I can even type. My arm feels like a have something rubbing against me...but I look and its not red...Funny...Not.
Thanks again for your respond
Deb












catra121

Originally Posted by catra121

Yeah...I forgot to mention that you need to be careful with the work comp docs. Just be honest but also realize (which you already seem to) that they do work for the insurance company even though they are supposed to be "independent". I lucked out that the first one I saw agreed with the RSD diagnosis but that was sort of an odd situation where the doc work comp hired didn't want to see me and pawned it off on his partner...so they didn't get the doc they expected. But the other 2 I saw were pretty bad. Not in person so much but when I read their reports it was the complete opposite of what they said and how they acted in person. They use loaded language to IMPLY that you may be faking or exaggerating even if they see absolutely no evidence of that themselves. The very last one I saw actually watched me go out to the car with my mother from his office and was in the waiting room while I was waiting to see him (I assume to watch and see if I did anything that I said I couldn't). He actually wrote in the report that he wasn't able to see me enter the car but that I didn't need to be "lifted" into the car. I never said I did...my mom would not have been physically able to do that in any case. But he said my mom's position behind me (holding the wheelchair) prevented him from having a good view. Like I knew he was watching me and I did that on purpose...seriously? I don't really care because they could install frigging cameras in my house and they would never see me doing something that I said I couldn't do...but I felt so violated that this man was watching me like that. And then he didn't even see anything but felt the need to put that in the report in a way that seemed to imply I was faking anyway. Made me so angry.

The problem is that RSD is a clinical diagnosis...there is no definitive test that says yes you have it or no you don't. I don't know how ONE visit with a work comp doc really puts them in a position to say if you don't have it. I mean...I tell them about my symptoms, the medical reports from other docs say that THEY have seen some of the symptoms, but on that particular day at the exact moment of that appointment who knows if I will have the cold temps, the color changes, swelling, etc? I usually have at least one of those at a time but I have honestly had work comp doctors look at my swollen ankle and tell me it's normal or that the cool temp of the one leg is just circulation problems or that I just have a sunburn (when I have not been out in the sun at all of had that area exposed to the sun at all).

Easy to say, "Why would someone want to fake this condition?" and I agree with you but the answer you will get from work comp is, "So you don't have to work." Even if you ARE working or want to work...they still say this bogus garbage and use that to justify everything they do. I actually had to listen to their lawyer say that I was exaggerating...that all I had was a sprain, etc in court and all I could think is, "Seriously? I got injections into my spine, have been in a wheelchair for months, undergone a zillion tests, had so much bloodwork done that they know me by name at the blood draw office...all for a SPRAIN? Are you kidding me?" But whatever. I know it's their job but they caused me so much additional suffering and stress and delayed medical treatment. I am so very happy to not have to deal with them anymore. Just an awful experience.

Hopefully...you have a better experience than I did. But just be careful and realize that no matter what they say to you that they will use anything they can against you even if they have to make it up. I hope that you have a good attorney who can help you deal with all the work comp stuff. That can make all the difference. Good luck to you.

And one more thing...I would try to talk to the physical therapist about desensitization as part of your therapy. It is an awfully painful thing but it really does help to normalize the sensations on your RSD areas and can make things so much better long term. And I would also make sure that they give you exercises to do at home and do them every day. I did physical therapy at home this past time and the best thing about that was that I was able to do all my exercises every day because they didn't require any special equipment. I felt like I made so much more progress and it was steady progress because I did the exercises every single day...my physical therapist felt that way too. Progress felt slow at the time but I was able to do something new/harder every single week and I really made a lot of progress every month which was easier to see in hind sight than at the time.

When it comes to the meds I would maybe ask the doctor about possibly adding in an anti-inflammatory, anti-depressant, tramadol (for pain), etc. Only ever go on ONE med at a time...but sometimes its the combination of meds that makes the difference. I wouldn't really suggest specific ones but probably just ask generally about the idea of a combination of meds. Neurontin really didn't help me much but I know it works great for some (though many of those are on much higher doses than you are on). Another possibility to ask about might be lidoderm patches...it's lidocaine (in patch form) that you could put right on the RSD area. They don't help a lot and I try not to use them more than a couple times a week but sometimes it's just that extra little but that can make a difference between the pain being tolerable and not. I also like to use the lidoderm patches in combination with the heat patches...that seems to give me even more relief because i have both the lidocaine and the heat helping. But of course...your doc will make the final decision when it comes to stuff like this...but sometimes if you just ask the open ended question that starts the conversation and gets them thinking about different options.

[Nanc]

Originally Posted by Littlebytes2

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.

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