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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


First of all they should be giving you 1-2 blocks a week to try and put this into remission!! It seems to me you had a pretty good result from the one block. Saying, "get an scs now", seems way premature to me. The ones I've known who've gotten an scs were a few years into rsd and meds weren't doing much to help the pain and blocks either didn't work at all or only lasted a couple of hours after.

An scs is tricky, IMO. I've seen many get it, over the past almost 6 years I've had rsd, and a lot of them, end up with complications and a lot of spreading. I don't want to scare anyone but I firmly believe that "sugar coating" things or saying it might help isn't helping at all. I believe everyone should know the reality of the scs business. Some people have had success with it and no problems but, again, the reality is it doesn't keep the pain down for a long time.

I think the doc, as I mentioned, should be giving 1-2 blocks a week, have you on meds for pain control and a med like neurontin,lyrica or cymbalta to help the sympathetic nervous system stay as calm as possible, have you doing physical therapy if needed as well. Those are the 1st steps taken in the first year or so. If you're able, you might want to seriously consider finding yourself a new pm (pain management) if this pm is going to be pushing for such a big surgery wayyyy to soon!

Hugs,

Karen
Hi,
I also have RSD in my left foot because I had foot surgery in July of 07. Diagnosed in September of 07 and I see a Rheumatologist who specializes in treating RSD. He's wonderful. I'm on Cymbalta and Lyrica, with an occasional Vicodin. I haven't had any blocks but am thinking about seeing if there's an anethesiologist that does the Lidocaine infusions -- Michelle on this board highly recommends them.
I would be very leary of your pain management doctor because you're so new to RSD. I've been on this site for about a year and many have problems with them and it's surgery and we're not supposed to have anything invasive because it can make the RSD flare. I do understand that sometimes, there's no other option except to have surgery. They need to get you started on medication. I began with Neurontin and got up to 3600 mg daily, but it wasn't helping very much so they switched me to Lyrica and Cymbalta. I hurt sometimes pretty bad, and after I wake up in the mornings, it's hard to walk cuz my ankles make cracking noises, but once I get going, I'm ok. I work 15 hours a week in 6th grade and love it.
I was diagnosed by UCLA after they ordered a 3-phase bone scan. My feet were suppose to look the same, but my left foot lit up like a Christmas tree, indicating RSD in my left leg, left ankle and foot.
I believe there are many, many pain management doctors out there who don't know how to treat RSD so they guess and that's just plain scary. My doctor told me this past week that he sees 6 NEW RSD patients a month. That's alot! I'm trying to figure out how to get a support group going here in the San Diego area.
Because I'm in San Diego, UCLA wanted me to get an MD here to order the 3-phase bone scan so I looked in the phonebook for "pain management" doctors. So, I went to one for the order, he looked at me and looked at my legs and said "I don't think you have RSD because you're not red and you're not blue." And, the hospital couldn't even read his writing on the order!! I felt like telling him that by the time we're blue or reddish, there's considerable damage. Needless to say, I NEVER went back.
I see my RSD doctor once a month now. In the beginning, it was very frequent. I was an emotional mess because I was scared to death and honestly terrified of being in a wheelchair due to this very serious disease that many don't know how to treat.
This site has many many people who are caring individuals. They are so kind, and they help when we panic, they are there when we feel like crying, and they can encourage us if we are down.
Take good care, and let us know how you're doing -
Deb
Thanks Karen and Deb-
I am already on meds--I can't tolerate high doses of anything though because I am only about 125 lbs. But, I am taking Lyrica 50mg BID, sometimes up to 75mg at night; lidoderm patches, 2 mg clonazepam at night, and 1/2 tablet Percocet prn--which usually ends up being about 2x/day. They are also trying Fosamax 10 mg QD and Vit. D+Calcium--my POR just got back from a conference out west, and that is something that came up for treatment possibilities for RSD. Along, with crushing 30mg Morphine and mixing it in 6 oz. cream and applying topically to the area--the mixture should last a while, so it isn't like you are getting the full systemic absorption at once. I have been to 2 pain specialists--the second one said he recommended 2-4 injections prior to a SCS. The one I am seeing, I thought that was the plan too. But, after my first injection, I f/u with his NP and she came in yesterday asking if I wanted the SCS. I thought it was way too soon too to try surgery. I asked to do another injection, and when I have that injection in a week, I'll talk with the pain doc and see if we can set up a 3rd injection the following week to try and get this under control before doing the SCS. He just told me when I first saw him that we need to be aggresive with my treatment because I am young--29. He said they have had tremendous success with the SCS. My POR said the same thing. I just hate to go through a surgery. I am so glad that I found this site. It's nice to know there are so many other people out there who care and are going through the same things.
This all started back in May when I fractured my foot/ankle in 4 places and had a lisfranc injury sustained at work! In July, when I switched from a podiatrist to an ortho/foot doctor, he immediately was looking for RSD because I had the initial signs, but no hypersensitivity. After determing that the cont'd pain I was having wasn't due to lisfranc instability, he diagnosed RSD. I have had it diagnosed by 5 different physicians, and confirmed by the block last week. Initially, all I could do was cry. I am a endoscopy nurse, and read about RSD on-line. I had never heard of it before. But, I could see my life changing forever. I love to run, and now just praying that I can continue to walk. But, I am now past that stage for the most part and am determined to get this turned around. I don't want this to spread, and I want as normal a life as possible. It's hard because my immediate family understands what is going on, but to try and explain to extended family or friends is like a nightmare. I feel like they think I am making this up. I'm not. I can't make my foot mottled, cold, hypersensitive, and so painful at times I can't walk. They don't understand that my nights are terrible sometimes--the clonazepam has helped with that though. They don't understand that this cold weather makes this 10x worse. But, I'm glad that I can find advice from other people going through the same thing. Thank you for your information. Hugs. Katie
Hi Jane,
Just a quick question please. You explained your SCS so well. I've not had any blocks, and I don't have a SCS. I have RSD in my left leg, ankle and foot but I'm trying to manage with Lyrica, Cymbalta and an occasional Vicodin. Do most RSDers not need the meds after they get the SCS? I've gained 45+ pounds in the past year, but if it keeps me walking on my own, it's a very small price to pay. Do I like being "large"? No, but I'm able to work part time and manage things so I try hard to not get hung up about my weight. The idea of something being implanted into my body kinda scares me, but it sounds like it really worked out well for you. Can I ask you how bad your pain was before you did the SCS? Like on a scale of 1 to 10?
My date of diagnosis was September 20th, with the aide of a 3-phase bone scan from UCLA.
Have a good day tomorrow,
Deb
Hotfeet,
Oh my gosh -- I'm sooo sorry to hear that your pain was so very bad. I can't imagine, and I'm glad your SCS helps. With your SCS, is your pain level like a 5 or below? Ya know, my pain seems kinda weird -- I think that I'm just getting used to having it all the time. Did that happen to you? My nightimes lately are pretty tough. I went to the doc about a week ago, and he said I could increase my Lyrica but I'm so darn afraid of becoming even more heavy that I haven't increased it. This whole RSD journey is something none of us signed up for, and sometimes I have a hard time with it. It's no fun hurting when I walk. I used to walk 4-5 miles daily for exercise with my girlfriends and I miss that soooo much!!! And, my golden retriever LOVES walking, but these days my daughter takes her.
Well, my writing isn't very cheery tonight - I work all day tomorrow so I best try and get some sleep.
I got some info from the RSD association in the mail today. They've got a cute t-shirt that I'm going to buy -- Guess they want to make people aware. It's colorful and says "Take flight with hope".
Okay, so you take good care, and thanks for sharing your story.
Deb
Hi... I didn't know about the RSD association. I guess I better check that out. My husband is denial that I have RSD. He just turns his head when I start talking about it. Maybe if he read more on it, he would come to reality. Don't get me wrong, he certainly understands that I am in a lot of pain, but the title... I just don't get it. He was ok with all of this when there wasn't a name. I was somewhat relieved when I could actually call "it" something. Sounds strange, but it did. Didn't make the pain go away, but it explained the symptoms that I have are real and not in my head. I think that he thinks that I am a hypochondriac. I'm rattling, should be writing this in journal, but it feels better to talk to others about my feelings.

Deb, that did happen to me about getting use to the pain, and then all of a sudden it may be the same pain, or maybe it has increased, but it's like the straw that broke the camels back. I will hurt so bad and cry and moan and roll around in bed, feeling sorry for myself. The doctor also increased my Lyrica to 200 3 times a day,and that made it so the sensitivity wasn't as severe. I had/have a horrible time with swelling, which is one of the side effects. So I went back down and use the 200's when it gets to the point that I can't stand to wear pants. I think I need to increase it for a while because my fingertips are so very painful, like I have burned them on a hot burner. They put me on Lasix for the swelling, but it doesn't help. I will be going for a dopler and another test to check the blood flow to my legs and feet. It seems with each day, there is something more wrong with me. My neurologist told me that with the swelling it will be difficult to do the needed EMG, but after he gets the results from the Thorasic surgeon, he is going to do one on me, or least try.

Boy, did this ever turn into something more than a quick reply. Thanks for listening. I better try to get some sleep. I'll check in tomorrow. Hope that you are feeling better. Jane





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