[Sheri]

I was diagnosed 6 months ago. Not much support or experience in the medical community in which I live. Any ideas? I have had 3 SNBs, 2 lidocaine infustions and have been on Gabapentin and currently trialing Lyrica. None of which give me any relief.

[HubbyWithRSD]

Welcome!

Although it's unfortunate that you have to be here, we welcome you and hope you can find some helpful information here.

I'm new too - Not to RSD though...My hubby has had it since 1995 and until recently just had it in his leg - It is now in his arm.

So very sorry that you have had to deal with inexperienced Dr's and have not gotten the support you deserve.

Have you tried spa/hot tub therapy? This is something that in my hubands first bout of RSD really helped him. Something to consider...

What else are they giving you besides the Lyrica? My husband is currently on that as well although I do not believe it is working either....

Let us know and I'll get back with you - Honestly meds work different for this sort of thing, per person. Sometimes a med works for one, the next it does not make a dent in the RSD....I know that is not the best news but at least its honest news which sometimes I believe the medical community denies us.

Hi Sheri,

So pleased you found us, we'll be very happy to help as much as possible - there's not much that one of us, at least, won't have experienced and RSD is certainly one area in which those that know, know and **only** those that know, know. Ya know??

Anyway, well done for being the first in the "stories" section, it just went up today, congrats!! Hope to see you asking whatever you need to ask, fire away!!

I must go to bed - it's 2a.m.here in Hong Kong and at last I'm sleeeeppyyyy....
Night night,
all the best

[babydoll]

Originally Posted by Sheri

I was diagnosed 6 months ago. Not much support or experience in the medical community in which I live. Any ideas? I have had 3 SNBs, 2 lidocaine infustions and have been on Gabapentin and currently trialing Lyrica. None of which give me any relief.

I too have tried lyrica and gabapentin, but now I'm on Novo Norotriptyn, which I find is working better that the other two, but nothing gets rid of the pain completely, unfortunately. You said you are in Western Canada, I'm in B.C

[Desi]

Hi Sheri!
I too, would like to welcome you here! As far as no good support in the medical field there, have you looked up any pain clinics? A lot of them know more about RSD then our primary docs. check into this if you can. Welcome aboard, again, Sheri~Love, Desi

[lostmary]

Hi Sheri,

Like everyone else I'd like to welcome you to the group. There are a lot of great people here and lots of information to be had. I'm sorry that you have this monster, but it helps having others who understand.

Hug
Mary

[Sandel]

Hi Sheri

Welcome to NT, I am in BC as well.
I found that the first drug that worked to initialy treat the pain was an SSRI antidepressant (nerve pain reliever) called Amitriptyline it initialy cut the huge pain way down, it eventualy made me gain weight so they switched it to Trazadone which I am still on, and I do notice a huge diffrence if I cut back on that med now.

Cource they got me on so many pills its hard to tell whats working now and what isn't, lidocaine infusions are presently helping me gain back some quality of life right now too, I get the infusion put in every 3 weeks and I take it out at home 10 hours later, it helps the sensitivitys to touch and a breaze dosnt hurt so much now either. It is usualy given here when multipal limbs are effected aparently.

Everyone seems to react diffrently to each med and sometimes it feels like musical chairs trying diffrent meds for RSD/CRPS, hmm.. also try epsome salts baths.. the epsome salts contain magnesium and it helps soothe the pain and reduces inflammation too, also start taking vitimin C it also helps reduce a flare up quicker and helps inflammation, its been studied and has proven to lessen the incidence of CRPS by 2/3rds after injurys, so I think it's a best bet to take it no matter how long you have had RSD.

I hope you find some relief soon Sheri, when I remember how bad it was initialy I just cringe, and though for me it's full body now it is better controlled than it has been in three years. I mainly atribute that to the vitimin C and lidocaine as well as reverse cottling therapy.

luck and perserverence goes a long way. (sory to remble)
Sandra.

[Imahotep]

Goods luck.

It took a long time to find the right combination of drugs for me.

Let the doc know if you're not sleeping well. This is important to us and there are drugs specific to this disease for sleep.

[lostmary]

Sheri,

Welcome to a great group. I've been on many different meds, and now that I have my SCS, I'm down to mainly MS Contin for pain. I hope you find a good dr. If you area has a teaching hospital, try there. I know others will have better advice for you.

Hugs
Mary