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Reflex Sympathetic Dystrophy (RSD) (CRPS) Message Board


Reflex Sympathetic Dystrophy (RSD) (CRPS) Board Index


I have been taking lyrica for rsd and gained 20 pounds!!!!!! :confused: I am thinking about getting off lyrica....my question is do you lose the weight you gained once your off lyrica????
Lyrica is very known for weight gain, I also gained tons being on it. I stay on it, because it helps so much, since the some relief I get with it blows over the side affects. I am sure though being off it for a couple weeks, if your eating goes back down to normal and you move as much as you can the extra lbs will come off.
Katy - some people on this board have talked about taking Topamax instead of Neurontin and/or Lyrica because it doesn't seem to cause the same weight problems. Perhaps you could talk to your doctor about it?

Search back on the threads for "Topamax" and you can read what others have had to say....the best of luck to you.

Sandy
what i foun out among other things with being o lyrice,was that the horrid sidfe effecte never ever went away for me,they justbecame much worse the longer i was on it. the wieght gain for me was actually a good thing since hen my SNS wa sdmaged,.it also left mty body in fight or flight node too,. this particular mode ac5ualloy ramps up tyour metabolism to incredible hights,to the point where i had alread lost all my mucsle from years of just wieght training wihle being a FF/EMT. but it started to almpst canabolize fat,all fat. believe me this was not the dream it sounded like. i now look like a freaking coat hanger and am down from my orignial 107-110 lbs when i was active and doing my job to now "hovering": around like 90-95. lyrica ganied alot of wieght for me but i am thinking it was mostly water retnetion since this particualr med really hits your kidneys very hard and is also extensivel;y metabeolozed thru them too.

i ready had very enlarged kindneys due to a polycystic kidney diesease(but perfect labs unbelievably still)with liver ivolvement as well,but man,the huge amount of real swelling that hit my kidneys at the end of the very first week on this crap was just so sick. it actually caused my already big right kidney to become soo freaking big,it was forced out of my back and has been residing alongside my right ribcage now ever since. freaky,let me tell ya. it DID help with pain that nothing else ever touched before like my cetral and the RSD,but my eyes also were severely affected giveing me the most insane type of dopible vison ever, up and down,and not the "normal' side to side crap? i could not function between the eye crap,the nes pain from my shifted kidney and last but not least,the very severe impact upon my already screwed up gait. i could not walk a straight line if you paid me.

i would have to say that within about two weeks of going off lyrica. despite the incresae in my pain that had been somewhat better with lyrica,alot of other things just got much better,and safe? for me. the weight gain i had,like i said,was mostly fluid retention and that went too(i went up to 124lbs). its just that nasty trade off ya know? with every med we take,something gets traded off in the process(we suffer some level of loss or gain something nasty). this is one of the bigger reasons i have tried like heck to find the best possible ways of managing some pretty intense pain without having to "take' anything by mouth. the less,espescially the newer meds,that we have to actually take in,the better we are. justhas been my overall experience withthe newer crap espescially. not everything we NEED to actually know ever comes out in the very limited drug trials we hear about.,it is not til that drug hits the much larger wider population do the true realities of most meds really come out. i cannot even tell you how ugly my personal experience with cymbalta actually was,shudder!!

i would 'imagine' once you go off of lyrica for good,that the weight los may just follow too. it wouldn;t hurt you to also get youir kidney labs run just to make certain everythig is okay there. try getting them done WITH still being on lyrica than after about one month after you have been compltetly without it, to really see how certain functions may have also been affected in you. you just never know ya know? the one really interesting and kind of scarey thing i found after going off og lyrica and just doing some very basic reasrch on it was the research studies i found that were really looking much more in depth on the opthamologic affects on the eyes with this drug and also the creatinine level,which IS the best indicator of overall kidney function,espescially when combined wth your GFR. that kind of suprised me and scared me just becasue of my kidney disease alone,ya know? they imply do not kow enough yet about alot of the newer meds that get FDA approved by almost nothing and WE get used as the ultimate guinea pigs once they hit the overall market. kind of sick actually,but unfortuently true. just see what occurs once that med is no longer in your system.

one thing that i have always done is everytime i start a new med,espescially the newer ones,is keep an ongoing journal of any and all things i experience while on it(from DAY 1 on) and then tapering off of it,and note ANY real changes in me anywhere,since you just never know for certain what any given med is going to actually affect in us. it does help to just to be able to go ack and read about your particular experince with any med you try. you forget the littler things and tend to only remeber the bigger things. this does help alot in really defining in the very best ways,just how any med had effected us. just a helpful sugesstion that has helped me thru my med "trials and tribulations".

hopeully alot of difernt things will get btter once you are off lyrica. believe me, you can be experiencing things(side effects) right now that you have not either notinced or vever would have attributed to lyrica. time will tell. please keep us posted. just keep that journal while you pass thru this stage,i think you may be somewhat suprised at what changes with the tapering process. marcia
Hi Marcia,
You really have been through it..thanks for all information you shared in your post !! wow, did Lyrica really cause all those awful side effects with your kidneys and vision !!! I often wonder about the newer meds and the long term affect, like 20 years down the road! I'm on Neurontin..some people call it Neurotten !!! lol You're right, journaling is a good idea regarding charting the impact of the meds!

You mentioned that you had a hard time with Cymbalta. I am wondering if you could share your experience with it. Was it the side effects, or was it hard to come off the Cymbalta? I've heard such a variety of information about it !! I hope you're doing much better since the days when you were having all those kidney problems!!!
Take good care,
Tigerlily xo
Hi Tigerlily,
How are ya? Have you read anything from Michelle lately? I wrote my post about possibly doing the Lidocaine infusion and thought I'd hear from her, but didn't.
My experience with Cymbalta has been great! Can't even tell I'm taking it -- I take two 60 mg caplets daily. I think just about everyone knows that I hate the weight gain on Lyrica, but my doctor say's its the magic pill for RSDers. The poor folks who had it generations ago didn't have the benefit of it. It does get depressing when I go shopping since I'm in the large (size 18) size these days. And to think I began this journey in a size 10. Oh well, I'm the same person on the inside and that's what matters. I'm definitely on the pity pot.
I took a regular Vicodin at 8 am this morning, just before I went out the door for work and by 9, I was experiencing some horrible, aching foot pain. That disheartens me, because I really had it in my head that I wouldn't have severe pain. And, I'm still really hurtin and the 27th isn't coming fast enough. I wonder how quickly I can have the infusion after I do the consult with the doctor on the 27th. Or maybe he'd rather do a block first, or some other type of treatment. Who knows? And, I'm wondering if I need to take a day off from work. Should probably do it on a Friday afternoon. Guess all these questions will be discussed at the appointment. Sorry to ramble.
I have a question please. Do you know what pain medication is given after Norco?
I'm waiting for the day where I'm able to live life without being consumed with RSD. I have faith deep in my heart but it seems that I haven't been able to rely on Him like I should. I'm hoping we're allowed to talk about that on here.
Guess that's it for now,:wave:
Deb
Hoping you're doing ok :)
my particular experience with cymbalta was really insane,just like with lyrica but in a whole different way. we still don;t know if this was 'just' the meds affects on me with my kidneys(tho my functions are still within the norms) or just my physiological make up. that also has to be taken into consideration with any med we take,our overall body physiology and how sensitive we are to not only the med but the fillers/dyes used in them too.

i have two very nasty pain syndromes(among other crappy stuff),one is the RSD in my knee down thru my foot,and the other i have mentioned here before,called central pain syndrome? the two syndromes do have some simularities in that they both have a constant burning component,but with the central(i have over both shoulder blades and also it follows the T1 dermatome in my left arm in a patchy distribution)there is a very ugly stinging component along with it all just feeling like a second degree burn,with all that horrid hypersensitivity to touch or even the wind blowing over it will set off a flare type crap?,that just never actually heals for me. its just there,and IS my skin now,not on it,or in it,just "is' my skin.

well i tried cymbalta for two reasons,my depression was getting much worse and i really wanted to also try it just to see if it could 'do" anything helpful for me. after about the very first week,it did effect my central pain,but it made it much worse than it already was. geez. but i stayed on it thinking ,well it IS making some sort of actual connectuion to it,maybe that will somehow change,no go,just got worse. this also somehow affected this RLS componenet i have in my legs too,really really bad once i upped that doesage to the next level,which was only adding another ten MGs to what i think was oly 20-30mgs at that time? by the end of that first raise in dose day,i was climbing the freaking walls with my legs. went to bed,BIG mistake there with that one since i litterally lept out of bed about an hour into trying to sleep. it was horrid in how much worse that RLS/spastcitity crap that was already there got at that point. i ended up wandering the house all that night and spasming along the way about every ten to fifteen minutes. it was horrible for me. i decided about 2:00AM that i was going to be tapering off the next morning. i must have done THE most rapid taper in cymbalta history after THAT nightmare episode. this was just how that drug affected me,alone. i already had high spasticity just from SCI so the cymbalta just exacerbated the living heck out of it and made it that much worse. i actually tapered off that crap very short and swwt within about three days time. i simply called my primary whohad put me on it and left a very detaled message with his nurse to tell him i was done with it and was going to go off it asap.

i really don;t recall having any major WD issues with it. i hear about these people who actually open the capsule and count out the little beads in it to taper,geez,just do it and get the heck off of it asap, your brain will recever itself much quicker once you can get that crap just out of your system. ideally,the very best way to actually taper off any of the icky anti siezure meds it by going onto another while tapering off the other. your bain just does not appear to suffer as much since something IS replacing what you are losing. but i will never ever touch cymbalta or any other 'new and improved" type med that comes down the road,ever again. i honestly do not know if it is just 'me' or what,but man,it has been a nightmare eevrytinme i try something new for my pain thats non narcotic. i do have some pain that thakfully does respond to narcotics and the other crap that does not. i have simply found other ways to try and keep those two other pain syndromes down,only when they flare on me,otherwise i don;t actually 'treat' them.

i do use the lido patches on my central areas but only when it flares since keeping those areas covered like 24/7 takes away any possible desensitization actually occuring. this finally happened with my central over my blades one day. just by having something constantly touching and stimulating the areas,it did remit or stop or whatever the hell you want to call it,just over time,and not keeping it covered. if you just stop and think of what takes place with any skin surface when its covered with even a bandaid for like three days,and when you take it off,that surrounding skin area that was covered is always much more hypersensitive to touch,that is the very same thing that occurs with keeping our pain areas covered way too much, we lose any possiblity of desensitizing it. that is why i will only treat the central and the RSD with lido pathces when it gets beyond "my' threshold of pain tolerance. you do have to suck up alot more pain this way tho,but knowing this actually worked with the two shoulderblades that were the worst of my worst areas,does keep me from just covering it now. it CAN happen over time. my new best friend for treating my RSD flares is actually my TENS unit. it does work for me very well.

when it comes to trying any actual med or therepy,all you can do as an individual is try it and see how it works for you and your particular pain processes. not everyone will react to the very same med in the very same way,there are just way too many different factors that enter the equation. but it is always worth a shot. i have decided personally not to go that route anymore, just becasue of my screwed up metabolism and alot of other factors that could be affecting things in me i a very adverse way. but thats just me. but if you want to try something,anything,go for it,it could be that magic pill or therpy that will have the big impact on your pain. you just wont know anything til you try it on you and your pain processes,ya know? i just got hit with way too many bad side effects over the many years we have been trying to treat this crap. i am simply tired of it all at this point. anything that i can find that i don;t have to take a pill for,i am more willing to go there first. but everyone is not me. if you really want to try something,just give yourself some time and make certain to write down any info on the med once you start it,just for referrance later. makes for some interseting reading,let me tell ya. good luck hon,Marcia
HI Deb,
I know the excitment is mounting in you to go to the consult on the 27th!!!! I am hoping the best for you that this doc will have some new options ie. a block and/or infusions. Sometimes it's good to get a set of new eyes and ideas on our situation for a new perspective and different treatment. If you do have a block, you have to take it easy that day so I would definately do it on a day off or take the day off from work. By the next day you can return to normal light activities. A block (or a series of blocks) might make all the difference for you !!

I am sorry, I don't know what the next med would be after Norco, but it may be coming close to the time when I will have to know!!
I have finally started to pack up the pounds from the Neurontin...All my pants are too tight and even the elastic waist on my pajama bottoms is too tight !!!!

I had a partial mri of my foot done and it says that I have venous insufficiency and muscular atrophy and systemic neuropathy! Deb, that is so scary..as that means my foot is shrinking from the vascular constriction and that even P.T. can't stop it.....I have to keep my head about me and not let the fear set in and remain hopeful that things can change!!!
Your comment about relying on him is an important one. I think we ae composed of four elements..physical, mental, emotional and spiritual and we have to address all four and keep them in balance for optimal healing to take place...

Summer is coming and I'm thinking about all the neat stuff I do in summer (used to do) like walk around the farmers's market, walk on the beach, stroll, hike, browse and shop, and I won't be able to do any of it this summer. It's taking all that I have to come to terms with it....I am still trying to remain hopeful that things can get better!!!!!!!!! I have to train myself to focus on the things I will be able to do...

I haveen't seen any posts by Michelle to you about the lidocain infusions. I know she had started to work full-time a week or two ago and she is probably going through the adjustment with time and everything else.
Good to hear from ya, Deb !! I hope you have a great day and can do something fun and pleasurable..I know you have a lot of challenges on the homefront and I admire you for all that you do!
Lotsa hugs,
Your Northern Cal neighbor, Tigerlily
Hey Tigerlily,
I'm so glad to hear from you -- But, I'm very sorry to hear about your atrophy and shrinking of your foot. I know you're very scared, but I hope you know that we're all hear to listen and to be here for you. Yeah, I haven't seen any posts at all from Michelle -- She's probably busy adjusting to work like you said.
Well, my husband and I had an enjoyable Valentine's day so must run for now -- Just wanted to write a short note letting you know that I'm thinkin of ya -- You take good care, and try not to be too afraid, ok? It's our fear that can really run amok --
Your southern california pal,
Deb
Hi Feelbad ! Hi Deb!


Feelbad !
Thanks for the detailed post about your experience with Cymbalta..sorry it didn'twork out for ya..At least you gave it a fair try and made the decision yourself to discontinue!! It's a good feeling to know that you can make those decisions ..it's your body and ultimiately you know what's best!!!! sorry to hear you deal with two pain syndromes!! What causes central pain syndrome? I can't imagine what that must be like? Is it similar to RSD?

You mentioned you tried cymbalta for your depression..how do you cope with that since you decided not to use neurontin? I have an appt. with my P.M. doc on Tuesday..she really wants me to use Cymbalta..I'm going to suggest to her that first, I want to try St. John's wart which is a natural supplement. Are you familiar with it? If the goal of Cymbalta is to increase or keep the seratonin levels in your system at optimal levels, well, St. John's wort does the same thing, only is natural!!! I talked to my foot ortho who is also trained in homepathic medicine and he said St. Johns Wort is a natural anti-depressant!!! It's been used in Europe for a very long time!! I'll give it a try, and see what happens.
Have you tried epsom salts soaks for you pain and burn pain? The burn pain is awful..I also read about a natural topical cream called neuragel which has given people relief.
Glad you at least have the TENS unit for some relief...I tried a similar device ( a larger one) and it flared up the burn!! It may have just been a bad time for me and the burn would have happened anyway. I've heard so much positive stuff with a TENS unit and it so small and portable, I would be able to use it at work. Does it help with your burn pain or the "other" kind of pain such as ache, stiffness, etc. By the way, re: the lidocain patches, I read that a good way to take them off is in the water so that it doesn't hurt like heck when you them off ! I hope we all feel better when the weather gets warmer! Take good care..
Tigerlily xo

Deb !
Glad to hear your Valentine's Day was fun, and that life still goes on and we can enjoy things despite our plight!!
Happy to say (I think !!) that both of my docs are recommending another lumbar block..it will be my 5th..the last one really did give me some relief with burn pain and with range of motion pain...it was the third one that was not so great! I'm glad I forged ahead with the fourth, and now I'll see what happens with the fifth, if indeed it gets authorized. (I hate being at the mercy of WC.)

The irony of the day!!! I fogot to take my morning neurontin because it makes me forgetful!!! lol lol
I know you're off tomorrow from work and I hope you enjoy the day!
Tigerlily xo
Hi Tigerlily!
I checked my calendar and my appt with the anesthiologist (pm doc) is actually the 19th -- I have no memory! LOL! The 27th is actually an audiogram and an appt with an ENT cuz I've had pretty poor hearing for the majority of my adulthood so I'd lilke to see if it can be improved. As far as the Cymbalta -- It's actually a drug used for nerve pain -- Like you mentioned, it's an anti-depressant but us RSDrs take it for the nerve pain, not for antidepressant qualities. Actually, it probably helps us with depression. I'm on 120 mg of it, and the shrinks give only 30 mg if used for depression. My doc told me that Lyrica is #1 to combat our nerve pain, then Cymbalta is #2 -- I've heard that you need to be very careful if taking St. John's wart with other medications.
Do the blocks help with the terrible stiffness? It's soo hard for me to get up from a sitting position -- Are you that way too? The burn isn't so bad, it's the stiffness.:(
We're due for a huge rainstorm within the next 24 hours. We need the rain, and my roses love it -- And, I like it because it's easier to pull the weeds after the rain comes! HA!:)
I'm hopeful that everyone had a good day today -
Take care,:wave:
Deb
Hi Deb,
It rained like the dickens, up here in Northern Cal., too !!!

The reason St. John' Wort not only works as an anti-depressant, but it also is effective with nerve pain, according to homeopath doc's..it keeps the seratonin, endorphins and norepinephrine (sp) in your system as do the parmaceutical anti-depressants! It has a history of hundreds of years but fell to the wayside when the pharmaceutical industry took precedence. As with anything it is wise to research as much as possible, and I'm trying to gather more info about it..there is a lot of information!

When I had the blocks it did give relief with range of motion and took the edge off the stiffness, too. I guess they give relief to the whole cycle of pain and discomfort including, raising the temp of the limb. Do your feet/legs get really cold? Have you figured out a way to get exercise...this is a big challenge for me because, like you, I used to walk for exercise..I am feeling more and more stiff all over! I soak in epsom salts and this does help a lot!
Glad to hear your P.M. doc appt is this coming Thursday!!! I can't wait to hear how it goes!
I hope the ENT appointment comes up with something to improve your hearing, too..is it in both ears? I am sorry you have this challenge to deal with, too ..
Have a good week, and I know your roses are loving the rain!!!!
tigerlily xo





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