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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi everyone, I hope that everyone is doing well. I just have a question. When they put you on Topamax is it normal for them to take you off Lyrica? The new Pain Dr took me off from the lyrica and put me on the Topamax and baclofen. And now he's talking about a sympathectomy. Anyone heard of that or had that done? It just sounds pretty harsh.. They gave me another injection today so. Blah.. I'm going to lay down I'm pretty tired from the meds they gave me for it. I would appreciate any advice
Yes, that's normal. Lyrica and topomax are the same type of drug and shouldn't be taken at the same time. He's done things correctly.

As for the sympathectomy, RUN!!!!!! Do NOT let them do this to you. During a sympathectomy, a doctor cuts the bundle of nerves. This is the WORST thing for someone with rsd to have done. Nerves will regenerate eventually. When they do, all hell will break loose. I've known a couple of people who had this done. The first one I knew who did it, only had rsd in her legs. She got it done and 6 months later she, literally, woke up one morning in more pain than she's ever felt in her entire life. She woke up with full body rsd and pain out of control. It took quite some time to get it under control since she hadn't taken any meds in 6 months. They had to start off low on the meds and work up all over again.

Hope this helps.

Hugs,

Karen

PS The top rsd docs advise, strongly against scs's and definitely sympathectomies. Let me know if you need documentation and I'll get it for you.
You two are amazing! Thank you so much, I walked out of there thinking if wow if this was so great why doesn't everyone not know about this and have this done? Yes Karen please get me all the info you can, I want to go in there armed with all info I can.. I don't like the Topamax as much as the Lyrica.. The Topamax doesn't help my nerve pain as much I don't feel, but doesn't make me as hungry. I do notice this nerve block didn't help as much either.. It only took my pain down to a 4 and only for a couple days and is back up to a 7 today. I'm so glad I did come here to find out about the sympathectomy before I just along with it
Hi Im new here. I have been suffering with RSD for 18 months now from a broken ankle accident. I had 6 nerve blocks with no help at all. They tried Lyrica with me, and I couldn't tolerate it. I have been on neurotin for over a year now. 900mg daily. This has helped a lot without the weight gain of lyrica (side affect). Im also on tizanidine for leg spasms.
WoW, it really feels good to talk about this monsterous disease. Im trying to find my way around here, so Im open to any suggestions to gain support from others.
Thanks, Patty
i Patty,
Welcome to these boards. I've had RSD since September of 2007 from foot surgery. I've had no blocks, just meds. Started with steroids then began Neuronton with Cymbalta and after a while the neurontin didn't work. I actually was up to 3600 mg daily. Then to Lyrica with Cymbalta and I've gained 50 pounds and I HATE it -- But, it's keeping me out of a wheelchair (so far) and I've been able to keep my 15 hours a week job at school so even though my confidence has lowered because of the weight, I think it's an ok thing. I take an occasional Norco for pain. I'm curious -- why weren't you able to take Lyrica? I'm also having some blurred vision and I'm not sure if its the meds, or if it's just because I'm 49 years old.
This board has lots and lots of wonderful, kind people. They're supportive, they share treatments, and I believe they really care so I'm hopeful that you're able to continue writing here. Sometimes I just HATE this RSD stuff -- I wish more have heard of it. UCLA diagnosed me after I continued having nasty pain and my foot surgeon (a podiatrist -- I should have NEVER allowed it. I had a ruptured plantar plate and I should've gone to an orthopedic surgeon but my GP referred me to the podiatrist) did nothing but give me shots into my foot that numbed it, and I knew something wasn't right so I headed up to UCLA. It was there that after having a physical exam, plus having a 3-phase bone scan that I got diagnosed. :( There's an RSD doctor here so I am grateful. I haven't had any problem with him and I trust him alot because he's researched RSD.
I'm sorry that your blocks didn't give you relief. Do you have severe pain? Are you able to walk? Do you work? I'm hoping you write back. Take good care,:wave:
Hugs,
Deb
hey everyone - just as a warning and an aside about Topomax changes all of a sudden from your docs - it may be happening because it has just become available as a generic - and many of them may be attempting to comply to your work comp or other insurance companies requests to lower medication costs - be aware - if Lyrica or Neurontin is working for you and working well - don't just "let" your doc change your scripts without questioning it....that stated - I'm on Topomax - and love it so....the decisions are up to our bodies and our docs as to what works best for each of us... just wanted to put the word out as to why a "sudden change" might be happening for a bunch of you - and that you should question it if you're happy with what you are on.
Hope the info helps... take care.
[QUOTE=RoseinSanDiego;4018508]i Patty,
Welcome to these boards. I've had RSD since September of 2007 from foot surgery. I've had no blocks, just meds. Started with steroids then began Neuronton with Cymbalta and after a while the neurontin didn't work. I actually was up to 3600 mg daily. Then to Lyrica with Cymbalta and I've gained 50 pounds and I HATE it -- But, it's keeping me out of a wheelchair (so far) and I've been able to keep my 15 hours a week job at school so even though my confidence has lowered because of the weight, I think it's an ok thing. I take an occasional Norco for pain. I'm curious -- why weren't you able to take Lyrica? I'm also having some blurred vision and I'm not sure if its the meds, or if it's just because I'm 49 years old.
This board has lots and lots of wonderful, kind people. They're supportive, they share treatments, and I believe they really care so I'm hopeful that you're able to continue writing here. Sometimes I just HATE this RSD stuff -- I wish more have heard of it. UCLA diagnosed me after I continued having nasty pain and my foot surgeon (a podiatrist -- I should have NEVER allowed it. I had a ruptured plantar plate and I should've gone to an orthopedic surgeon but my GP referred me to the podiatrist) did nothing but give me shots into my foot that numbed it, and I knew something wasn't right so I headed up to UCLA. It was there that after having a physical exam, plus having a 3-phase bone scan that I got diagnosed. :( There's an RSD doctor here so I am grateful. I haven't had any problem with him and I trust him alot because he's researched RSD.
I'm sorry that your blocks didn't give you relief. Do you have severe pain? Are you able to walk? Do you work? I'm hoping you write back. Take good care,:wave:
Hugs,
Deb[/QUOTE]
Hi Deb, You have the coolist icons !!! I couldn't take lyrica because of the severe dizziness it did to me. I was afraid of falling. Cymbalta put 10 pounds on me and did nothing else, so I was switched to celexa. Im allergic to most pain meds except darvacet (candy pill) but it takes the edge off when needed. I take 300mg neurontin in am and 600mg at night. This helps me enough to hold a part time Home Health position, but when I get home my foot is swollen with pain I have come to except will never change. This is such an unfair disease, because as you said it is so unknown and people think your crazy. But when that happens, I just show them my strange looking foot and it shuts them up quite fast. LOL
Off to work, have a good day!!! Thanks for posting me.
Patty
Well, I called the Dr on friend and Told them I just cant take the Topomax crap, I just can't I felt like im in a box. I can't form words I forget how to spell things simple things that I know I know how to spell I will be in the middle of saying things and just stop and look at people I ran a red light the other day with my 5 year old in the car, the other day. I yelled at my own mom and Stormed out of her house told her she will never see my daughter again and that is something I would NEVER do. I just told them there is NOTHING about this med that is worth it I"m sorry I would like to be back on the lyrica, I would rather be 700lbs and happy with what the lyrica does for me then 100lbs mean and dead or my daughter dead from me not being able to stay focus. Then he sends me a letter you didn't tell me that you got discharged from the last pain clinic when we talked if you don't show up at my appts or any we send you to, we will discharge you to, I called the office and I said look, I have crohns. This all started with back pain I just had my daughter at 23 years old she was 2months old when i found out i had crohns 4 months old when i fell with my back I had been in pain for 4 years when I got RSD. I was depressed and this moron at the pain clinic told me I had freaken shingles when my family dr the day before told me it was RSD yeah ANYONE would be depressed, I TOLD that stupid girl I wouldn't be back so IF that's being discharged so be it.! I realized since getting on this cymbalta I"m in charge of my own health I am the only one who can make my self better. And beside I didn't tell him i was discharged because I figured he already knew it would be in my charts anyway DUH> And this is the moron who wants me to get that stupid thing done. But I will be a good girl and go along and see If he can help me sometimes the best drs can be jerks.. I found that out the hard way, and I realized the jerkest Gastro saved my life and Now i love him :) Cross your fingers guys :) I go to Surgery guy on the 30th at 10:45 am.. I am giving my mom all the paper Karen gave me so I can let her read it
Good Morning East Coasters, Good Night West Coasters! I am back on the Lyrica, The lady at my PC said If you are having that much problems please stop the Topo NOW. I loved it! So I went to the Dr. He couldn't do it because only a Vascular surgen can do it, so now I have to wait until the 28th to find out if they want to kill me early blah. But I will go. I will listen. I'm sure they wont do it to me. I mean I'm 27 I'm a mom, I don't plan on dying in the next couple years so. I go to the PC tomorrow. I'm a little scared. A month ago, I caught my baby toe on the corner of the coffee table it turned black and blue and was sore but I thought nothing of it, well yesterday it started to swell and burn a little. It's not horriable pain. It feels like what my other foot felt like when my right foot started. I just don't want him to be a jerk to me :( It can do that right? It's not my mind over reacting.. It can jump from one leg to another. Not my mind playing tricks on me?
[QUOTE=Reiannasmommy26;4027249]Good Morning East Coasters, Good Night West Coasters! I am back on the Lyrica, The lady at my PC said If you are having that much problems please stop the Topo NOW. I loved it! So I went to the Dr. He couldn't do it because only a Vascular surgen can do it, so now I have to wait until the 28th to find out if they want to kill me early blah. But I will go. I will listen. I'm sure they wont do it to me. I mean I'm 27 I'm a mom, I don't plan on dying in the next couple years so. I go to the PC tomorrow. I'm a little scared. A month ago, I caught my baby toe on the corner of the coffee table it turned black and blue and was sore but I thought nothing of it, well yesterday it started to swell and burn a little. It's not horriable pain. It feels like what my other foot felt like when my right foot started. I just don't want him to be a jerk to me :( It can do that right? It's not my mind over reacting.. It can jump from one leg to another. Not my mind playing tricks on me?[/QUOTE]

Reiannas.......

I have heard of people hurting them selves in another part of their body that doesn't have rsd and then getting it there too. I have a REALLY good rsd doc here in washington and he's always telling me to be very careful not to injure my self with blunt force because it can cause rsd in that spot depending on how hard you hit it. Hopefully that isn't the case with your foot. I know how hard it can be when it's in your foot too. I have it in my left foot and it's like walking in glass with wet shoes on. Don't ask,lol that's just the way it feels. You may want to bring that up to your doctor and hopefully he's not a jerk to you. You know some docs.....lol if you can find some proof that it can spread like that through various health websites maybe he will be more open to what you are saying and actually listen to you.
Have a good day and a pain free day(as much as possible)
Deanne





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