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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Rsd & Crps
Feb 11, 2008
Hello Everyone
I'm new here. I was dx with crps 5 months after I had an injury to my left hand that severed several tendons ands nerves. P lease forgive my typing I cna't really type anymore due to the pain and lack of mobility. I did OT for 5 months and start pt tomorrow for a tens unit. Im on 4oo mg of lyrica each day and take my vicodin when I need to. I see some of you all speak about rsd. I have CRPS is there a difference and what is the differrenc. Im glad I found all of you. Im sorry we all suffer. Thanx for listening
Re: Rsd & Crps
Feb 12, 2008
Thank You all for your response. I do have some anxiety RE the tens unit that will be used on me tonight. A little info about myself to properly introduce me. I'm a 33yr old wife and mother of two teen daughters. I sufferred an injury in May of 2007. After a very painfull 5 months of OT I was dx with this horrible disorder and started treatment for it in Oct. The lyrica is not helping me at all. I am going through the process of having a SCS done. This disorder has already spread to my entire left arm and shoulder. My arm and hand has significantly shrunk and is always blue, red purple and COLD. I am also a child care provider, I work out of my home and am STRUGGLING with it. I take care of 6 children ages 7months to 3yrs. I'm in sooo much pain and working makes it 10 times worse for me. But I'm trying the best I can to provide for my family as they depend on my income. My DR. wants me to stop but I need support my family. I work 9 hrs a day and when I'm done I take my pain killers and fall apart basically. I give you all thanks for your help. Just being able to talk to others that know how i'm feelling helps me mentally. I will let you know how the tens unit works for me or not LOL..... I see alot of you have had this disorder for quite some time and continue to go through so much.. I have only had it for 9 months and to think I will go the rest of my life like this frightens me and makes me very sad for all of us. Some kind of lottery we hit. Thanks again hugs to you all and I hope to talk to you again real soon... :-);). I will think of you all as my newly found saving grace. You are all angels in my eyes. :angel:
Re: Rsd & Crps
Feb 13, 2008
If that made you flare up don't use do it.. Its just going to make worse... I wish I would of known that when I was going through it..
Have you tried Lyrica or neurontin? What type of pain are you experiencing (burning, deep bone pain, etc)..?
You live close to PA.. Has you PM dr ever mentioned to you about see a DR Schwartzman also I know theres pretty good drs in NY who handle RSD.. PM drs all they do is handle the pain.. These drs in PA and NY are actually looking to treat rsd. stop us all from taking all these meds.. Have you ever considered looking into one of them?
Michelle
Re: Rsd & Crps
Feb 16, 2008
Hi Michellle94
Yes I'm on 400mg of Lyrica every day. No I have not thought about seeking out another Dr. at this time. The pain I experience is you said it Deep bone pain skin sensitivity, Some burning at times, Sensitvity to wind and breezes. I feel like my arm is slammed in a car door constantly. What about you what type of pain do you experience? I'm just sooo frustrated. I can't sleep through the night. I'm sorry I'm haveing a bad day today :(, well I have a bad day everyday:( but I just can't even think straight right now. Sorry I will talk to you soon. Hope your having a better day than me.
Re: Rsd & Crps
Feb 16, 2008
I basically experience the same type of pain.. Alot of the deep bone pain.. I now have it in all four extremities I feel like I have the flu alot.. The burning is mostly in my hands and feet.. Anytime I go to do something my hands start burning, change color, and will swell up.. If I rest for couple hrs.. The swelling will go down.. Temp change is a biggie for me.. If Iam in an air conditioner car and go out into the heat.. My hands will swell up and turn reddish purple.. in minutes..
I do get the sensitivity.. not all the time.. Usually when Iam flared up.. this is mostly at night.. I have found the Neuronton to work the best for me with the tylenol and cod.. If I forget to take the one.. I flare up.. Some reason the combination really helps me.. I have also had lidocaine infushions.. The helped the most.. I had an allergic reaction last time so I won't be getting them anymore....
Before I started the Neurontin I wasn't sleeping through the night either.. Most of the nights I can sleep through. There are still some bad nights.. I think what happens also is your body starts forming a pattern.. Once your up alot you just get use to it..
The Lyrica did nothing for me.. Don't ask me why... I know that both neurontin and lyrica are kindof the same meds.. Iam on 1200 mg. of Neurontin.. Maybe you could try looking into it.. How long have you been taking the lyrica for? Also, I don't know why kind of dr you see for this.. Ask him what they feel about lidocaine infushions.... I swear by it.. I have met so many rsd pts in the hospital. They all were getting the same treatment.. The ones that I kept friendly with.. Still are doing good... Don't get me wrong.. We all are not working. but it made our lives tolerable..
Michelle
Re: Rsd & Crps
Feb 16, 2008
Hi Michelle,

I have been takeing the Lyrica since Oct. Every time I get increased I will have 1 or 2 days of relief but then its pain as usual. It is not helping me. My Dr. said that the Nerve Blck injections would not help me at this point because I have had the disorder too long for me to have any long term relief from them. I have not heard of the Lidoderm infusions however when the rsd was only in my hand and wrist I used the Lidoderm patches and they helped alittle. Now that the rsd is in my entired arm and shoulder I have no use for them. It is the pain that wakes me at night not the usual pattern but I understand what you are saying. Beacause of the sensitivity that I have I need to create a cave so to speak under the blankets just so they dont touch me. I'm waiting for Ins. to approve my getting the SCS what the hell do I have to lose at this point. I don't have any swelling anymore just shrinking, cold, blue at times, red, purplish and blotchy is what my hand and arm looks like mostly. I see a PM Dr. for my treatment. I'm sorry you have this DREADFUL disorder in all four extrmities, I guess my only having it in one at this time I shouldn't complain. How long did it take for you to get it in all four areas. Where did the disorder first start. I know everyone is different and mine may never spread beyond where it is but I would still like to know about you. It has been 9 months for mine to affect my entire arm and shoulder. Is this fast, slow, or normal? Well I need to go take my pain meds and go to bed. It has been a dreadfull day for me. I'm very sorry for you and all of us. Hope you rest well and I will talk with you soon. Hugs:)
Re: Rsd & Crps
Feb 22, 2008
wannaBpainfree2,

Hi. I'm new to the boards as well. And honestly, your story seemed to almost mirror mine. I broke my foot in April 2007, and was diagnosed with RSD in October. They say I caught it early, so I guess we'll wait and see if that's a good thing. I started a routine with my first pain management doc of weekly nerve blocks in his office (not guided), high dosages of neurontin (up to 2400mg/day) and relafen. He did not offer my any type of actual pain pill. After he told me to "man up" for not being able to handle the injections, I went for a second opinion. My new doctor switched me to Lyrica (which, personally, has not done a thing for me), clonidine patches, lidoderm patches, percocets and muscle relaxers for the pain.

I'm at the point now were I am taking half of my percocets while at work (not the smartest of ideas). I am also getting the sympathetic nerve blocks in the surgical center every other week. I have seen the huge impact of the nerve blocks, and i am surprised to hear that they said you were too late. I've been told that's the only chance at recovery, as the nerve blocks begin to last longer. Last week, the day after I was supposed to get my nerve block is when I realized that the RSD was in fact attacking my entire leg, not just my foot. This was my first realization, and I have not missed a block injection yet. If it can prevent my entire leg from shooting pain I'll take it! I can and have lived with my foot pain for quite some time.

It's nice to see that we're not alone out there. This website has been huge for me. I'm 27 living in a beach community, and people cannot fathom the idea that my foot still hurts from when I broke it last year. People don't understand until they themselves experience it.

My one piece of advice to you is to be Happy with your pain doc, especially since you are going to be seeing more of them!

Good luck everyone.





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