Has anyone experienced this?
 

Hi, I'm new today! I've had CRPS II in my right hand and arm for 5 1/2 years. It spread up to my neck and into left hand also, but not as severe. Haven't been able to work in over 3 years. Didn't get diagnosed and treated for 3 years. Had several Stellate Ganglion Blocks that REALLY helped calm down my pain for a couple of years, as long as I limited my aggravating activities etc. Then, I broke a finger on my worse hand (right) early August and I went into a MAJOR flare in both arms. Lyrica has been working great, but I nearly had a car accident due to not being able to "think straight".

I cut back on the Lyrica as soon as flare began to let up in November. Now I'm doing better than I have in a long time! Which is great, EXCEPT I'm finally being sent to a Neurologist (thru work comp) tomorrow, and it seems I have very little symptoms!

Has anyone else gone into some sort of a "spontaneos remission" for a little while, then get bad again?

Thanks for any input or suggestions for this appointment!

Denise

Remission ? Nope , not during the 4 years I have had RSD . I have never read about a total remission either but if so , sounds hopefull .

Good luck to you .

Hello to both of you,

I don't have RSD but just wanted to welcome you to the forum.

and ask a question-
Denise-
Is the work comp for the RSD only?
or did you have a injury at work that brought it on?

we also have a work comp forum if that might be of help.

first off, welcome......
 

my husband and i both have rsd.........he was diagnosed in 2001, and had been doing fairly well.....been able to continue working, etc.........until......................march 24 2006 he got hurt at work yet again, this time his left rotator......he had surgery, and whammmmmmmmmmm he has been down for the count since..............his left side is really bad........ he has had some sgbs, but they only gave short relief...........he now has a frozen shoulder, and his hand is starting to claw..............pain is through the roof...........
so to answer your question, yes, .......he is on lyrica and norco, and they are doing a port in his neck for continual coverage jan. 24.
good luck to you, and again, welcome.
ps. i was diagnosed in 2002 and have my pain at a tolerable stage, thank goodness................the fibro is the more painful part for me...............

Through lots of work I am in remission in my arms and hands. The only time I see the RSD flare up is when the barometer changes and then no meds on earth helps with the pain.

I have had blocks that worked wonders. If the blocks work the first time then use them again. I'm on a minimal Methadone dosage. I have to go up on it when mine is worst but it still doesn't help at that time.

I am dealing with my fingers spasming up now and I just took pictures of them awhile ago. I want to show it to my hand surgeon. I honestly don't know it it's the RSD or a pinched nerve somewhere. It just started back up about a month ago after not dealing with it for about 5 years. I'm wondering if what Claudia is talking about her husbands hand is going on with mine.

I do think we have had one or two on here before that said they are in complete remission. Don't remember who but some of the others might remember.

Welcome to the board.
Ada

Hi and welcome, Denise,

Yeah, we've had a very few people on this and the previous board who have had a remission; thing is, once people have gone into remission they aren't usually here to tell us about it (fair enough, if you can just get on with life, good on you!) but sometimes they do. Maybe someone will pop in; and sometimes, like Lisashea, they found it was a pinched nerve instead, or something mechanical (and so fixable) all along... seems it can happen, just doesn't very often.

Hope we can help you some, thanks for sharing your story with us,
all the best :)

Like so many others, I've got multiple issues
 

Hi jo55 (Hope I'm doing this right!)

When I was injured at work it caused a RCT, stretched/torn ulnar nerve, severe sprain of my wrist (all on the right side), and a slight buldging disc in my neck which is causing neck pain and sometimes SEVERE headaches. No one diagnosed me for so long. Then, my left hand and arm began to hurt and turn colors also and I was told I developed CRPS II (and possibly TOS).

I also would like to know if anyone else has worse pain at night on a regular basis. I mean, the very WORST thing for me is to have cool air blow on my right arm or neck anytime day or night. I usually go into horrible pain then. But then, even on days when my pain is "calmer" and bearable, as soon as I get into bed (almost) the pain in both arms and hands worsens. Maybe this is due to the RCT on the right shoulder and now I'm having problems with left shoulder too since I lift everything and drive with my left hand.

No doctor answers me when I ask if this is the RSD or not.

I'm so glad to fing this site! I haven't had ANYONE who has this to talk to or ask questions to "compare".

So you do have pain when the barometer changes??!! I live in Palm Springs and have been thinking about moving to Colorado where I have some family who can help me. Maybe a cold climate isn't a good idea!

But I have found that air conditioning causes me MUCH pain, but when I'm wearing a jacket in cold weather I'm OK.

How long does it take you to recover from a "barometer change"?

Hello there! I definitely have felt the great effect of lyrica althoguh you are right when sometimes it makes you feel a little funny. I did the same thing in October. I was on lyrica three times a day and was doing pretty well so I decided to go off of it. I was doing really well off of it until about early December when it started getting really bad again. Now I went back on lyrica and starting my little "on and off" lyrica cycle I seem to be on. Since I got off neurontin and had such a horrible experience with that I decided that I would not be on one medication long term jsut because of the bad side effects that could happen. Since Lyrica really hasn't been out long enough to know the long term side effects my doctor advised me to use it for a few months at a time and then subside it and when I start feeling worse again to start it back up.

I remember my first neurologist saying to me that CHILDREN have a very high chance of recovery completely. And there 3 people that I know personally who have had rsd. All three had it when they were teenagers like me. 2 of which are 100% better, no pain like 10-15 years (they are grown up now). The third has a SCS implanted and then there is me who still isn't better either but is going the non-scs route.

I don't know, I have heard though a lot that if caught early, remission or complete recovery is possible. BUT in most of our cases the doctors were too stupid to catch it so we are all still in pain .....
:Sigh: ((hugs!!))

it's me lisashea in total remission
 

Hi,
Just wanted to drop in and say that I do know of people in total remission( me and 2 others who used to come to the braintalk forum). I had pinched nerves in my ankle and once my chiropractor made some adjustments to my bones and I did 2 yrs of intense rehab, I am back at work fulltime and feel incredible.( to me, incredible means no rsd pain or symptoms)

The other people I mentioned got better using HBOT. One was a dancer. I think her name was DancerJen. She was young, in her 20's, and I think was from California. She used to drop in now and then.

Then there was a gentleman who did HBOT in Florida twice. I met him in person a few years ago and he was back at work and functioning very well.

As for remission for short peroids of time, what I can tell you is:
1. I got remissions with HBOT and accupuncture.
2. I know someone whose pain went away from a Laser therapy earlier this year. She had about 15 treatments and felt great for the first time in years. No pain. Then the sales rep took the machine out of her doctors office and disappeared! Her pain is back and her doctor is trying to buy a machine so she can use it again. I think it's called "cold laser".
3. I know another person who I did HBOT with that has had periodic remissions since 2002. It seems to be a rollercoaster ride for her but after 6 yrs of being diagnosed with RSD she is working partime and off of all meds.

I also have just recently been connecting with someone in Canada who had surgery to un-entrap some nerves in her ankle. Her RSD pain is now gone but she is just beginning the rehab process and it is very difficult. I found tons of studies on the internet that talk about nerve entrpament being the cause of rsd symtpoms so I know there are many, many people who experience what I did or the studies wouldn't be around.

So... there are people out there who have had remissions and total remissions. Maybe few and far between but if I can be one of them then SO CAN YOU!!!

My advice is to keep searching for the answers to your particular problem. We are all different so each of us may have there own individual solution to the same symptoms.

NEVER GIVE UP HOPE!!
Peace,
Lisa

My chiro uses a cold laser { also called low level laser or soft laser} for my TOS, CMP and C spine pain.

Denise-quote
[When I was injured at work it caused a RCT, stretched/torn ulnar nerve, severe sprain of my wrist (all on the right side), and a slight buldging disc in my neck which is causing neck pain and sometimes SEVERE headaches. No one diagnosed me for so long. Then, my left hand and arm began to hurt and turn colors also and I was told I developed CRPS II (and possibly TOS).]

Ahh - that's what i was wondering if you might have some TOS type of sx also - those could be what is flaring for you.
We have a TOS forum here too- you should visit it - quite a few have RSD & TOS -
but don't cross post in both forums due to limits of arm use.

What is TOS???
 

What is TOS? I am confused! :p


And--- welcome here Denise!! :)

Vanessa,
TOS stands for Thoracic Outlet Syndrome. Just go down to the bottom and go to the area where you pulled up the RSD website and scroll down until you come to the Thoracic Outlet Syndrome site.

I am not a good explainer of TOS, I just live with it. I've always been one to say next to the RSD it's the second syndrome closest to hell.

It is nerve impingement in the thoracic area. I have had a rib removed on the right side to make room for the nerves to spread. There are 3 kinds of TOS and luckily I only have the neurological. There is definatly no cure. Surgery only sometimes helps. The surgery can also bring on RSD. That's how I ended up with the RSD.

There are a lot of good people over there and they will help you with any answers you might need on it.

Sorry I'm not much help but as I said I live with it but I can't explain any of it. LOL

Ada

:(
 

I understand now. Thanks for the explanation. ((hugs)) to you! That certainly does not sound like fun... RSD is enough! I can't imagine having TOS on top of my RSD. :( :yikes:

Barometer changes?
 

[QUOTE=dreambeliever128;55877]Through lots of work I am in remission in my arms and hands. The only time I see the RSD flare up is when the barometer changes and then no meds on earth helps with the pain.

Hi Ada!

Thank you for the "welcome"! You all sound so encouraging. I really appreciate this group!

I guess I didn't get my response to you correctly yesterday. I live in Palm Springs area & due to "work comp finance fiascos" I've been trying to get moved to Colorado where I have a sister. But she has Fibromyalgia & she's having SEVERE problems due to the weather...in particular...the barometric pressure (at least that's what she thinks it is).

Until I saw your note I didn't know RSD may be affected by it. Hmmmm. I'll have to think about this move!

I'm sorry about your fingers spasming. My hand curled up one time after I had to move to a new place, then had no one to help with my dishes, etc, so I think I over did it. But I kept doing gentle exercises to straighten them out, and eventually it stopped. I hope that's all you have to do.

Have a great weekend!

Denise

Hi Lisa!

Thanks for your encouragementand info! Even if I'm not in remission, I just appreciate feeling better....at least for a large part of the day. I'm going to try to look into that laser treatment. Sounds good.

I've been seeing a Chiro since almost day one of my injury, way before anyone told me about RSD. From what I've been reading the last couple of days I believe that is the reason I never developed the EXTREME sensitivity to touch that many RSD patients have. I have never been able to tolerate breezes, but clothing and touching doesn't bother me.

I just wrote Vanessa about Mannetech Glyconutrients. I really do believe they may have helped me come out of this latest flare so fast.

I'm so glad to hear you are doing so well. I would love to be able to work part time, but I rarely have a consistent night with being able to sleep due to the pain when I cut back on Lyrica. But when I take enough Lyrica to sleep my brain goes dead!! I get my words all mixed up and people look at me like I'm stoned!

Oh well! LOL

Have a good weekend,

Denise

I hear it's possible!
 

[QUOTE=VWBeetle;55802]Remission ? Nope , not during the 4 years I have had RSD . I have never read about a total remission either but if so , sounds hopefull .

Hi VW,

Thanks for your note. I've just read a note from Lisa and she says she knows people who are doing great!

I think I was a little bit in denial about being "In remission". But I wasn't in 24 hour pain and wasn't even taking Lyrica...so it "felt like" a remission or something. But the pain still gets sooooo bad at night.

Hang in there! I appreciate all the encouragement!

Denise

Hi jo55!

Thanks for your note. I'm going to try to find out if work comp would pay for laser therapy.

Just wanted to explain I never had surgery for TOS. But when I broke a finger last summer (I don't have any insurance) my work comp doc tried to set it in his office (for free!!). He said I really needed surgery, but an operating room would cost $20K. It didn't "stay" and now my finger is crooked.

But I learned NEVER to do anything like that again! The flare it caused was horrific! So, unless I'm dying, I don't want my RCT repaired or any TOS surgery. Actually, if I have TOS, it's not that bad! It's just from spasms or something.

Denise

Heather,

I sure appreciate you & Vanessa! You're both so young to have so much pain....but your attitudes are fantastic! Keep it up! It always helps to keep hope alive.

It's amazing how long it takes to be diagnosed. The SGB's really helped me a lot, even though I got them 3 yrs after injured.

Take care!

Denise

Hey there!

To make a long story short hubby has had RSD in leg since 1995 - After Ulnar Nerve transposition (work related injury - both arms) He developed RSD in his right arm (first surgery).

After developing the ulnar nerve damage he started having cramping, and where his arms would curl up at night (or when he fell asleep) in a protective mode, his hands would claw up too and we have to massage them to get them to "open up" and start working again...I'm wondering if your pain at night has something to do with your ulnar nerve?

Ulnar Nerve
 

Hi "HubbyWithRSD",

I'm glad your Hubby has such a caring "Wifey"! My heart goes out to him!

Yes, you're very perceptive. I do have ulnar nerve neuropathy due to entrapment. But my chiropractor always "tweeks" my elbow and must be releasing it.

I'M TERRIFIED OF GETTING ANY SURGERIES!

I also have 3 torn tendons in my shoulder that they say I need surgery for, but my WONDERFUL, GIFTED, CHIROPRACTOR :D also keeps my shoulder loosened up.

So I feel blessed that I've been able to get some help w/o surgery.

But were you saying that the elbow nerve entrapment gets worse at night?
I know torn rotator cuffs hurts worse at night, but since getting so much Chiro help my shoulder is much better. But still the rest of my arms and hands get soooo painful every night.

Please tell me why you think this! I really appreciate it!

DeniseG

Ulnar Nerve
 

Hey there! Just got back from work so I'm back to my other job...here...:D

I'm not exactly sure why he has the cramping/clawing etc at night - I think that because his body is relaxed, it goes into protective mode and this is why it happens. As far as preventing it from happening - We've found that with a LOOSE brace - One that is firm, yet flexible, yet also restrains, or prevents it from curling up helps with the pain the next morning and helps him to sleep through the night. (Well...a little more then before...)

That of course is with his left arm. The right he had the ulnar nerve transposition and then developed the RSD in - That arm (the right) still curls at the wrist (as he needs carpel tunnel surgery) but right now there is nothing we can do about that. His Doc says that until the RSD is under control they will do no further surgeries...

You were saying your chiro has helped with the nerve entrapment and moving the nerve back to where it belongs? I'm wondering if this might be an option for him - Although....they figure the casing around the nerve is crushed at the elbow.....I'm gonna have to ask his doc about that or a local chiro - see if it can be of some benefit to him. Thanks for the heads up though! Might be an option for us. :)

Hi Denise. Thanks for the reply about my sleep question. Including myself, some I have talked to that are long sufferers have experienced a period that the pain became less severe. Remission, I've read about but most all of them were caused by a treatment such as ketamine. My period of less RSD pain was really controlled by my meds. Maybe the way you can tell, is miss a dose of meds, if you are O.K. go from there. If I'm two hours late taking my meds I become very ill.

the BEST to you Denise...Michael

Hand clawing is often associated with Thoracic Outlet Syndrome also.
Some with TOS were mis dx'd with ulnar or carpal tunnel {or other tendinitis injuries} and after those surgeries they still had sx - because the real injury/compression is up in the brachial plexus area of the neck.

HubbyWithRSD,
does he have a tight neck and or neck and shoulder pain along with the other symptoms of ulnar and carpal?
there is also whats called a double crush and triple crush - where there is a compression at the BP, the ulnar and the carpal.

Just wanted to mention this in case you haven't heard of it before.
What was his work injury?

We have a Thoracic Outlet Forum here also.
many do have RSD with the TOS and work comp claims.

if you think you might have TOS we do have many threads on self care and "helps" and meds.

Vanessa,
I live in Colorado. The weather does effect me here. When my sister died and went back to Ky. for the funeral I didn't hurt as bad there. It might have been just the time of the year though. We don't have many Kentuckian's on here with RSD to know.

The hot weather here bothers me more then the cold. I am worse in the summer months then I am in the winter. We have no humidity here in the summer months so I like that part but it's just hot weather that gets to me and that might be anywhere I am at.

Jo, I figured those fingers spasming was from TOS. I didn't have it after I had my surgery until I fell really hard on that side and messed myself up again. I am still not dealing with most of the TOS symptoms on the right side though. I don't have the numbness and tingling nor the pain except from overuse and of course I am right handed.

I actually know that I need a redo on the right side but it's just not on my agenda for a long time. I spent a year getting well from that surgery and it's too rough for me to want to go through it again at this point. My left side also needs it but again it's going to wait. I have a lot of mine calmed down through therapy and triggerpoint injections so if I can keep from having that surgery for a long time, I'm happy.

Ada