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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


Hi Deb,
I too want to try Topomax. Because this weight gain is driving me crazy! I know that the topomax is more expensive than the Lyrica that I am now taking. And I used to have to pay for medicines out of my own pocket.

I too worked with children. I worked at a Technical College where I trained student teachers in early childhood education. But I worked right in their childcare center. I had 14 three year olds. I worked there for 22 years. But because of the RSD I had to quit.

I was able to collect a monthly state disability check and just recently was approved for SSDI. I am now able to have their health insurance and their prescription program which will pay for my medication. So because of this I so badly want to try the Topomax.

I will be talking to my doctor at my next appointment in just a few weeks to see if switching to Topomax is a option for me.

But I too would like to hear from someone that has been taking this medication for awhile and see how they feel on it. I also want to know if the topomax really did help them with their weight gain.

Someone once said that topomax is prescribed for people that are having weight problems and are serious about loosing the weight. I hope that this is true and that we can loose some weight. Perhaps just stopping the Lyrica will help this. But I do need to have something to replace the Lyrica because the Lyrica really does help me with my pain level.

Hope someone responds so we know more about this Topomax. Thanks for starting this thread Deb!

Take Care and lots of Hugs,
Chris
Hi Deb,
I am curious about topomax as well...my pain is increasing and I am concerned that I will have to increase the nuerontin, and therefore will probably gain the weight and the brain fog...

(By the way, is the weight gain with neurontin the same as it is with Lyrica??)

I work full time and need a clear mind and I am concerned additional Neurontin will increase the mental fog..and if I do gain the weight, my esteem will plummet as it has in the past, and that will be a tough battle in addition to the nerve pain!! My priority, though, is to control the nerve pain..What are the side effects of topomax and does it control the nerve pain??
Thanks, friends...so grateful for this board..it keeps me sane..and helps me feel understood.. take care!!
xoxo
Hi everyone!
I should reallly clarify something -- Most people who are employed here in California have the opportunity to get state disability if they become disabiled. The maximum is 1 year. After that year, then you can then apply for SSI because you've met the criteria for being off work for 1 year. Well, I'm employed by a school district and I can't collect state disability but our long term disability is 3 months at 1/2 pay -- that's it. So, for 9 months, I would get no pay at all to meet the criteria of being off 1 year (3 months plus 9 months equals 1 year) and then apply for SSI -- And yes I know that many are denied. I don't want financial hardship, that's for sure. I know that none of us do, and it's just plain wrong that being sick causes hardship for anyone. I'm fortunate in that I've got very good insurance through my husband but he's an engineer and many engineering jobs are being outsourced so we pray that he's able to stay employed. My meds would cost a fortune if we had to pay for them out of pocket. Okay, so I cannot even think about things like this right now --
I want to thank those of you who have written -- I'll let you know how things go with my Topomax.
My pain has increased some. My ankle gets pretty swollen by the end of the day, but then by morning it's fine again. -- I'm on 120 Cymbalta and 650 Lyrica. Previously on 3600 Neutrontin but it wasn't effective so my doc switched to the Lyrica. I'm kinda wondering what will be used next. Does anyone out there know? I take occasional Vicodins.
Thanks everyone for your very kind words of support. I find this board to be very helpful and a great place to find information and friendship. This RSD stuff just simply sucks at times and I'm the kind that does my best to remain optimistic. I was really wronged by my surgeon but can't get him for medical malpractice -- That's how I ended up with this mess. We were really in our prime, going along in life, had a savings, good outlook, and now I'm terrified of the unknown, of the cost of my meds should my husband become unemployed because of the economy, the financial hardship should I become physically unable to work -- All that stuff -- It's just no fun to think about!!!! I have no redness or blueish skin color, and for that I am thankful. I live in northern San Diego county where there's lots and lots of beautiful sunshine. My youngest is graduating high school in June but my oldest is quite disabled and needs my assistance with many things so that's another reason that I'm less than thrilled with having this very stupid thing called RSD!!!
So for now I gotta go -- Wishing all of us much less pain in our future
Deb
My husband was on Lyrica, and did gain weight (as he also had with Neurontin). He switched to Topamax a couple of years ago. He did lose weight and it did work for pain, but the side effects were so bad that he went back to Lyrica. He got very depressed and slept until 5:00 in the afternoon every day. Actually, I think he lost weight because he only ate 1 meal a day LOL. I have heard of other people taking it successfully, though.
Sunny
Hi everyone,
First off - I think meds are just like RSD - they affect everyone differently - so that's how I want to preface this. I started out on Lyrica and even when I titrated up to the maximum dose for my weight it never helped my pain and I had terrible side effects. I am now on Topomax. It does help my pain and I have to be very careful to make myself remember to eat enough. I realize that sounds odd but it is true - it works as a strong appetite suppressant and between the Topomax and having RSD in my foot so I am no longer active I don't have much of an appetite so I have to work to make sure to maintain a healthy diet. If you have put on weight with Lyrica I would think it would come off rather quickly if you were to switch to Topomax - it did for me - or at least the 20 pounds I had gained - but I was not on Lyrica very long so I can't say how long it might take for more weight. I did not notice any depression or any other problems with it other than if I tried to titrate up too quickly my visual acuity was off - my vision would be affected in the car if I was a passenger and the driver got closer to other cars than I was comfortable with -it was somewhat like being in a carnival fun mirror sort of scenario - and if I backed back down to the last dose for a few more days it would go away - so for me, it was just a matter of titrating very slowly. I hope that this information is helpful to everyone - I'm sorry for the delay in getting into the discussion - we went on a vacation and we both agreed not to use the computer for the trip - it was good for us both. Now it is good to be catching back up! Take care and let me know if I can clarify any more. Lissa
I was on topomax and my dr switched me to lyrica cause I lost too much too fast. I need to loose weight too which did not make sense to me but he is the dr. I do think though that lyrica is better for ME for pain control. Only thing I do not like about it is I am more tired all the time.
Hello Mady,
Well....I'm wanting to go off of Topomax. Wow, my memory loss was bad enough on the Lyrica, but even worse on Topomax. My doc has me on both because I complained about being too big. And, I only got as far as 2 nights of taking 3 and he wanted me to finally titrate up to 5 daily. I couldn't imagine that so at my next appointment I will ask to go off of it. My doctor wanted me to remain on Lyrica, and it seems to usually do the job but by night time, my feet and legs are pretty sore.
Take care,
Deb
Hi,
I was diagnosed with CPRS in 2006. After several tries at meds and nerve blocks, I finally tried Lyrica and Neurontin, plus the Spinal Cord Stimulator. The Lyrica has been a godsend! I am able to ride my bike daily for 20 min. plus work daily-I am a special education teacher. I love it and love having my life back after 20 years. The weird thing is I can't walk for exercise. I guess the weight bearing is really different. I do have a total knee replacement which started this whole thing.
I advise to try all meds and options before giving up and going on disability. There is an answer somewhere-just have patience. I do still have moments, don't worry, like I'm on crutches today and my foot is purple. But I take anxiety meds and the pain goies away within one day. Too good to be true.
Hi Susan,
Thanks for the inspiration!! I know your days must be so challenging as a special ed teacher!! And then riding your bike for 20 minutes!!
Can you share a little bit about how the neurontin/lyrica helped? Did it help with burning pain of RSD or? Is it a high dosage? Is your foot purple because you have RSD in your foot a well as your knee? I am sorry you had to have a day on crutches...Are you able to walk around the classroom and at home?
Please take care..it is so helpful to read about how others manage through the day and are optimistic!
Take care !!
HI,
I only take 200 mg of Neurontin daily, and 100 mg of Lyrica. I think that combo with the spinal cord stim. helps my pain. However, nothing let me ride my bike until I started the Lyrica. And as you can see, I'm not on that much. So hopefully prayer helps!! Thanks for all of the support.
Susan
Hello Tigerlily,
So very sorry you are having a rough time. That electrical type of pain is so nasty. Do you get the cramping too? I'm taking 120 of Cymbalta and I have no side effects. I would give it a try. Sometimes I have high energy and can't sleep, but that's about it.
I decided to go off all the Topomax -- It REALLY really gave me brain fog, and I already experience brain fog with my Lyrica. You mentioned that you get injections in your ankle -- What kind? My RSD is in my feet and legs. Can I ask you what kind of shoes do you wear? It's sooo hard to see all those really cute shoes out there with no padding for the ball of the foot so I have a pair of Danko's with an open toe - Their clogs are pretty popular. I also wear my tennis shoes alot but I get very tired of doing that. At home I'm in my slippers alot.
I know you've probably told me already, but how long have you had to deal with RSD?
I'm tired and must run, but I'm hoping your RSD has settled down since you last wrote. Take good care, hugs, Deb
Hi Tigerlilly11,
I'm in resource at work, so not too much walking. I spend some of my time in Special Day Class too, but the 6th grade classes are very close together. I wear Danskos and tennis shoes most of the time and so far, so good.
I saw my doc today and asked him about the lidocaine infusions -- That's what Michelle talks about -- She says it helped her immensely. Anyways, he told me I could see an anethesiologist to see about it, but I declined because I thought they put it into my spine. I don't want anyone messing with my spinal cord/column. My doc then told me it's just put into the veins so it didn't sound that bad.
I'm going up a bit on the Lyrica to see if that helps lessen my foot pain. My ortho doctor offered an insert thing into my shoe, but that creates problems too so I declined. I like Danskos but they're expensive. I should try Crocs. My sister loves them. That's something I miss an awful lot is wearing nice girly shoes. I LOVED shoes and now I just look at others wearing all the cute stuff -- It's ok though, I have lots and lots to be thankful for.
Does your insurance pay for these customized shoes? I'm thinkin probably so. Let me know how it all works out, ok?
Thank goodness I'm off all week. My youngest daughter (senior in high school) is up with my in-laws, and I think I'll take the whole day tomorrow off -- No laundry, no anything -- We've got a hard rainstorm hitting us tonight and we REALLY need the rain here in San Diego area.
I know you said you work in Special Ed. What capacity?
You take good care, have a WONDERFUL Thanksgiving,
Deb
Hi Tigerlily. Yes, I could do aqua therapy. The pool was about 86 degrees.
My RSD started in my left foot following a spinal fusion. Then there was a burning hot, then red. It then moved to my right foot and leg. Both feet hurt so bad, when at worse it feels like someone had beat them and left them broken, the pain so deep. The redness turned to purple, running up to almost the knee, with the skin bumpy. The tops of my feet near the toes and top of foot will on frequent occasions turn black. The skin is so sensitive, like a bad sunburn, where even the shower felt like acid was hitting my legs. Thank God for the Lyrica and other pain medicines, the pain isn't quite as severe, until a flare up.

Now I am having problems with the fingertips of painful swollen and red, as well as the palms of my hands. These symptoms came on at the same time of one another. I can't wait to see my new neurologist on Tuesday. Hopefully, he will be wonderfully knowledgeable and give me some answers, or confirm my feelings.

A word about the Topamax. When I was on Topamax, my vision became very inpaired, which is one of the side affects. Once I told my doctor about it, he immediately switched me back to Lyrica.

I meant to keep this short, but when talking the syptoms, it just keeps pouring out.

Take care.
Hi Chanceux ~
I cannot tell you how happy I am that you have had such wonderful success with Topomax. I am taking Lyrica right now but the weight that I have gained from Lyrica is just too much and is making me so depressed. Plus since my RSD is in my legs and feet, I would think that having this extra weight cannot not be good.

Also I am not even sure how much the Lyrica is helping with my pain. I do take pain medication along with the Lyrica. Before the Lyrica I was taking neurontin but my doctor thought I should try Lyrica instead of the neurontin to see if it would help my pain better than neurontin did.

I have never been over weight before having to take these two medications. It has so effected how I feel about myself. I hate to try and go anywhere because I no longer have that many nice clothes that fit me. So sometimes it is not just the RSD that has stopped me from going out with my husband. It is also because of the way I think I look. Now my husband says he loves me no matter what. But I hate that there even [B][U]is[/U][/B] a "No matter what"!

I know that each person is different in how their body will respond to any medication. And I have read that some people have had side effects that were just too uncomfortable for them to continue taking Topomax. So that is another reason I was so happy to read your post. I see my doctor again on December 22nd and I will be asking her if Topomax is an option for me to try. I sure hope so. I also heard that Topomax is very expensive. I have recently been approved for Social Security Disability and I now also have prescription insurance so I will have to see how much I need to pay out of pocket for this. Actually I don't care if the price isn't too far out of hand because I want to see if it will help my pain and will help me to loose this weight.

Thanks again. I'll let you know what my doctor says after my appointment.
Take Care,
Chris
Hi Chris,
I have RSD in both legs too..from foot surgery on my right foot in 2000. We need to minimize sources of anxiety and depression. It's not just a matter of vanity either..being overweight is not good for RSD legs, as it affects our circulation. Weight gain is a cruel side-effect..the pain is bad enough! I tried Lyrica too, and it had very sedating side-effects, so I couldn't get a thing done. I take painkillers with Topamax, but a lesser dose than I did before Topamax..it's a good painkiller. It's like the sun came out when I started to take it also, but it's not that way for everyone It can't be any more expensive than Lyrica. You know what was a really great painkiller for me was Cymbalta..really works for pain..I could not continue with it..I had a rare side effect of small trickles of perspiration running off my entire head. My PM Dr. had never experienced it with any of his patients, but then of course, I am "rare"! Good luck to you, and I pray that you are blessed with less pain in '09.
Interesting that you should connect sweating with Cymbalta. My husband is on Cymbalta (among other things, including Lyrica and methadone). He has rivers running down the back of his neck and back. We thought it was the methadone, but maybe it is the Cymbalta. He's been on it for several years and has been sweating like that for several years, so we will have to look back at the time sequence. Thanks for the idea.
Sunny
[COLOR="Magenta"]I started Topomax for Migraine headaches, It does work great for my Migraines, the only thing I really don't like about it is as much as CRPS/RSD messes with our minds, the Topomax seems to be making it much worse. I thought It was just me thinking it. The other day, my honey asked me If i was okay? I said I'm okay why? My honey said that I've started to act a lot more Scatter-brained. I'm the one who handles the check book, lol probably not always the best thing, but I've never had a problem making sure it was current and accurate. In the 3 years we've had the bank account, I've never had us over withdrawn. The last month, I over with drawn twice now. And a few other things to help make this already underlying condition a little stressful is making it overwhelming. Now that I think about it, I might have lost a few lbs on it. Ever since being on the lyrica and gaining the first 20lbs, I don't like to weigh my self anymore. I know I've gained it, but when you see those numbers flash in your eyes. Makes me sad. Good luck with it and I hope it helps you well.[/COLOR]
It's funny that you should mention handling the checkbook. Because I used to handle ours. I handled it for over 20 years! But I needed to hand over that responsibility to my husband a few months ago. Now I have not started to take Topomax yet, I'm still taking Lyrica. But like you I had over drawn our checking account more than once. It was me that suggested that my husband take that responsibility over.
Well, let's see, that now leaves me with............. zero responsibilities when it comes to money. Boy, I did not want to stop handling the checkbook but I knew in my heart that I had to.
I just one day took the checkbook to my husband and I was crying my eyes out. I told him that I couldn't do it anymore. The funny thing is that he knew it, but didn't want to say anything. At least not yet. I think he was just waiting for one more mistake. He did say that he probably should have taken it sooner but he didn't want to hurt me and I guess he knows me well enough to know that I would eventually come to the same decision as he did.
But he wanted me to realize it on my own without him being the one to say anything.
Good thing it was only our personal checking account and the business one! :)
I tell you, this RSD can be a mean cruel condition can't it??? Not only does it cause such pain that even crying can't take away the edge, but it takes away our memory. The one thing we could still use to help contribute to the responsibilities of running a family. But NO, it just slowly takes away one thing after another and all we can do is surrender to loosing another meaningful responsibility. I'm not sure why loosing the checkbook hit me so hard, but it did.
I actually thought I was over all that, but............
Can you tell that I still need to work on that??? There always seem to be one thing that can pull us down and for it was surrendering my checkbook. I kept telling myself that, I'm an Adult, I can do this all I need to do is concentrate more. Perhaps one of those new calculators will help me (by the way it didn't). I would keep forgetting out to use the darn thing.
Sorry for the rambling over my stupid checkbook. It's just that that one really hurt my ego.
Take Care,
Chris
Hi Kover2,
Did the Topamax help you with your RSD? I'm currently on Neurontin and Lyrica for RSD after a knee replacement. Plus i have a spinal cord stimulator. I can ride a bike but can't walk for long distances. I'm going to ask my Dr. to see about trying Topamax instead of Neurontin. I've gained 10 lb. since on the meds and am still exercising.. I heard topamax has a side effect of weight loss...
sorry about your prescription plan-but March is right around the corner!!
Thanks,
Susan
Have you looked into getting your meds free? I get my Lyrica free because I fit their income requirements. I think incomes under 40k work. Go to the manufactures website and diligently search. This I believe is a federal requirement........
+
[QUOTE=susanb17;3838297]Hi Kover2,
Did the Topamax help you with your RSD? I'm currently on Neurontin and Lyrica for RSD after a knee replacement. Plus i have a spinal cord stimulator. I can ride a bike but can't walk for long distances. I'm going to ask my Dr. to see about trying Topamax instead of Neurontin. I've gained 10 lb. since on the meds and am still exercising.. I heard topamax has a side effect of weight loss...
sorry about your prescription plan-but March is right around the corner!!
Thanks,
Susan[/QUOTE]

Yes, Topamax helped immensly with my RSD, when I am on it...I am able to move around alot better, and actually have almost pain free days. I am still fighting my prescription plan about it. They are seriously just being downright mean!!


polarisgold....My doctor said that the manufacturer probably wouldn't give it too me free because the insurance should pay for it!! Doesn't that just blow your mind. I did just tell my doc on thursday that I was going to write to the company any!! lol





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