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Posted 9/9/2011 3:51 PM (GMT 0)
 

       Hello Star!

 

       I wanted to welcome you here to the CP forum, and thought it might be best to introduce you to the rest of the membership by posting a new topic for you. The members do not always click on some of the ongoing topics, so we believe you would be best served and recieve more attention with this post. wink SE

 

       Starsunshine wrote: i was diag. after a car accident 20 yrs aga with rsd in clavicle, chest & upper arm, places i haven't heard of except when people have entire body rsd . treatment then was archaic . ice packs!!!!! etc.... i'm immune to meds , especially narcotics . have used compound numbing cremes . don't do a thing . after cervical epidural which caused more muscle spasms in my back from fibro, i've still decided to try 2 more injections to see if nuero. surg. can find correct site before i give up on that idea . my next step is scs . i'm just afraid it will flare up fibro. well, i guess that's why trials r good . i've been told good sources of info are : RSD.ORG & RSD Hope .org . i haven't checked them out yet but was given info from someone who has allover body rsd . good luck to all sufferers . so glad i found this site . 1st time i've met so many people with rsd .

Posted 9/9/2011 4:14 PM (GMT 0)
Hi Starsunshine and welcome to HW. I've had CRPS for 12 years.

Can I ask what meds and other treatments you've tried?

Look forward to getting to know you better :)

Laura
Posted 9/9/2011 6:06 PM (GMT 0)
Hello Starsunshine, I love your name. It's nice to meet you. I'm glad you found us but sorry you are suffering from chronic

pain. Yet another person with RSD. Wow, there are many on this forum with that Star so you should get a lot

of great information. You will really enjoy the people here on the forum. They are very caring and understanding.

Come and post as often as you can and let us know how you are doing.

Take care and have a nice starsunshiney day.

Suzane

Posted 9/9/2011 7:33 PM (GMT 0)
Hi, I am new to this site. I was told about it by Starsunshine whom I met on a different support group site. I have RSD in my right new following a car accident. She was the first one I ever met with RSD and now I find out about this site with others with the same thing. I've only had this for about 4 years and because of the pain in my knee and limping, I have developed bad back pain. Trying to deal with both. I think I am going to like it here.

Laura
Posted 9/9/2011 8:32 PM (GMT 0)
when i was first diaagnosed i was treated with standard physical therapy that u would use on anyone recovering from frax. i had fractured most of the bones on my left side . believe it or not although the other fractures were much more serious it was the clavicle frax . that ultimatley caused the rsd . i kept complaining that it wasn't healing but the x-rays spoke otherwise . it was another injury to my clavicle that finally sealed the deal . i was not weight bearing for over a yr . because of hip fractures and was trying to hoist myself up on a bannister to scoot down on my butt on a stairway and felt a pop in my clavicle . my p.t. sent me to a physiatrist who diagnosed me . it was his pracitice that treated me with the p.t., tens , massage . i've beem on every possible nuero . med . and narc. and anti-deppress. that my drs. could think of., with no benefit . i'm currently on wellbutrin , clonodine , metoprolol, , topomax , tramadol. nothing really helps. i also have a healthy case of eighteen points of fibro., bursitis in my compromised hip and pelvis , advance scoliosis with a total spinal fusion , severe almost daily migraines, erratic blood pressure, pinched nerve and bulging discs ...that's enough . i'm looking forward to my trial of scs . i'm looking for a miracle since i seem to be immune to every med i have ever tried and the cerv. epid . seem like a longshot . i'm hoping to find some good advice from all of you and feel extremely grateful for finding u and for the fact that u have a moderator !
Posted 9/11/2011 12:58 PM (GMT 0)

            Good morning Star! wink   The weekends run a little slow here, so don't give up on us! smilewinkgrin

        WOW!...you are really busted up! It must be very difficult for you! shakehead   I see that you are getting the SCS implant, and were hoping that will at least give you some relief. Has your Dr mentioned anything about a pain pump? I would think you would be a canidate for it as well.

        Also have you tried Cymbalta for the back pain? I was recently scripted this, and so far it seems to have helped my lower back. I believe it was recently approved for patients with nerve damage in the lower back.

        Hope your having  a better weekend, please keep in touch!

       Also, there are five of us moderators! Wanted to let you know that I'm not the only one, and I believe some of them are currently suffering serious health issues.

        Take care,

     SE wink

Posted 9/11/2011 4:39 PM (GMT 0)
 thanx for the reply.  . the attitude here is so nice compred to so many support groups . i really like that it is moderated . i've tried cymbalta . it was like taking sugar pills . i'm immune to all narc . so i don't think pain pump would work for me . i'm also allergic to morphine . do these rule out my optins or are other meds . in pain pumps ? i had read a very disturbing post regarding scs and that it aggravates and possibly spreads rsd . now i'm disgouraged and scared . has anyone ever heard of rsd effecing clavicle , neck , chest and upper arm before ?. mine started with a very bad frax , to clav. that was further aggravated by a tear in that region . i've never heard of this .  
Posted 9/11/2011 4:44 PM (GMT 0)
 

       ....OK then!....how about methadone? Just trying to help here. wink   Also, dont throw away the idea of the pump...it is a last resort when all other pain meds have been tried and failed. I'm not sure why it might work, but ask your PM or PCD about it. One of our moderators has one and I bet she can answer some of your questions about the pump.

            SE

Posted 9/11/2011 5:00 PM (GMT 0)
methadone made me loopy and after only 4 days i had severe withdrawal ! thanx so much . my brother -in - law suffers from chronic back pain and does use methadone and greatly benefit from it .
Posted 9/11/2011 5:47 PM (GMT 0)

            ...one thing to keep in mkind when starting a new med, is that you may have a few side effects for a couple of weeks, and many times they will go away after some time on them. The loopy feeling with the methadone is a pretty common side effect. You might want to consider it again in the future.

       I just started cymbalta, and it really messed with my head for a week or so...but now, I'm doing much better on it. I'm glad I did not discontinue it because of the side effects. Hopefully someone will pop in here and offer another suggestion for you.

       Take care,

      SE wink

Posted 9/11/2011 6:42 PM (GMT 0)
Hi Star - I've not come across anyone with your particular injury or pattern of involvement before, but unfortunately I don't think there's much that CRPS can't or won't do.

I have full body spread following a knee injury and surgery as I mentioned elsewhere, Mine stayed localised to my knee for six years until I re-injured it and had to have more surgery. The surgery saw it spread to the rest of my right leg. 2 1/2 years later it started spreading to my left foot, then up my left leg. I had revision surgery on my SCS (which I'd had implanted 2 years earlier) and that caused low-grade spread to my back and within a few months it had spread to my hands and arms as well.

I also started losing significant amounts of weight, which we found was due to gastroparesis also caused by the CRPS. I've now also got chest involvement and periodically I have flares that involve my neck and face.

As far as the SCS goes - despite the problems I've had with mine - CRPS spread, lead migrations and multiple revision surgeries - I wouldn't be without mine. I couldn't even wear long pants before mine was implanted. If you've got any questions about them, please ask :)

As for pumps - there are meds other than morphine that can be used. One of the advantages of the pump over oral meds is that the med is very targeted to the site of action - which means that they can be effective even when oral meds do nothing.

Have you tried topamax? That's another med used for nerve pain. Are ketamine infusions an option for you?

Laura
Posted 9/11/2011 7:53 PM (GMT 0)
i'm currently on tramadol which better treats my fibro, wellbutrin , topomax which does nothing for my rsd but was prescriled for an odd type of convulsions with lack of muscle control for 1/2 hr . to 3 hrs . i've never heard of ketamine infuisions and am not sure what they are .would rfa be appproprate care ? also has anyone ever heard of being treated with cervical epidurals ? part of my problem is that i've spent most of the last 15 years in bed due to severe medication resistant depression and gad , in which i might have sought out appropriate care and didn't . i am very uninformed and a scar on my brain makes memory and retention very difficult . i'm just starting to use the computer and internet and have sensory overload .i so appreciate your assistance . i see the surgeon again on sept . 22 and would like to be better informed before i consent to another epidural which only aggravated spasms in my back . his theory is that he has to keep injecting me until he finds the correct spot to anesthecize me . of couse the decision to continue or end is totally up to me . the injections are extremely painful . i've been having a pulling sensation in my neck on the opposing side that makes me feel like i'm choking and i don't know if this is a spasm or the beginning of the rsd spreading . does the fact that i have waited so long for treament hinder my chances of any success of treaments to work ?
Posted 9/16/2011 7:06 PM (GMT 0)
Hi StarSunshine and I too want to welcome you to Healing Well's chronic pain forum. I do not have RSD but I do have a pain pump and Morphine is not the only medication that can be used in the pumps. There are so many different medications including a combination of medications used in pumps.

I encourage you to use the search feature at the top on the right and type in pain pumps and take a look at the info there, also do the same for SCS units. Both of these topics have been discussed at length here at the forum and perhaps you can find some useful info there.

Have you done a trial for either of these tools to help get your pain down? They say if there is a reduction in pain at around the 50% mark then the trial is a success. I think before committing to either for a final implant I would want to do a trial on both to see which one is the most effective.

I do hope that you will stay around as we do have quite a few people here with RSD and this is one of the best support groups around that anyone can find. Hang in there and keep posting.
Posted 9/16/2011 8:10 PM (GMT 0)
how do i talk directly to LordWood ? he spoke of some info . that i am interested in . smhair
Posted 9/16/2011 8:54 PM (GMT 0)
Welcome to the board starsunshine, I think you will find this is a highly supportive group and you can come here to post about anything. You can talk to LordWood by emailing him by clicking on the little envelope under his name. If it is greyed out, then I'm not sure there's a way to message him.
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