Reflex Sympathetic Dystrophy

I have been ssssssuuuffffering with REFLEX SYMPATHETIC DYSTROPHY since mid 90's. I'm looking for advice&help.I've been on numerous meds over the years and currently on 1 narcotic,but my body is so used to this dose & my pain clinic doc,I think, is scared to prescribe anything else for me.I did try Lyrica which caused terrible side effects and then I started on SAVELLA!! The side effects were so terrible. I lost ALL motor skills,drooling,couldn't feed myself,couldn't talk,would just fall asleep in the middle of a conversation etc. HAD to stop the savella.So,,,,I'm looking for some advice & input on any medications that anyone else with RSD has tried,taken,stopped,etc.Anything.I'm really really stuck and in so much pain that my quality of life has gone from about an average day at a 8 now I'm down to a quality of life average of a 3!!! I can't and don't want to go on living like this.This is not living.I need help and need it soon or I just don't know.......Please help me if you can........Thanks

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What narcotic are you currently taking?

Have you considered seeing a different doctor? It is your right to end your treatment relationship with this one and move on, if you feel they are reluctant to help you further.

Does anyone have experience with this and advice to share?

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My pain dr sent me to a rheumatologist yesterday,she said it wasn't arthritis or lupus.I have been complaining bout my quality of life for the last at least 4 visits and I think she is just sick of listening to me so she's trying to 'pass the buck',ya know? So I saw the Rheum.& they said no arth or lupus so I called the pain dr today and I WAS ON PERC 10/325 5X PER DAY AND THEY SWITCHED ME TO PERC 15mgsX4 with no tylenol I guess?? Cause I was soooo very nauseous all day long that they put me on ondansetron for the last 3 yrs to mask the nauseau side effect of the perc!!! So I'm going from 50mgsperc w/tylenol to 60 mg percs alone..Do you think this will make a difference for me? I feel so empty and have no life and it's sad because I want to work I want to enjoy life again and I can't. Between the pain and nauseau etc side effects it's holding me back from enjoying whats left to my life. If my 'days' continue as they have been for so long now, almost doesn't seem worth it, do you know what I mean? Thing is, I tell my doctor that, she'll put me in a psych hosp so I can get 'rid of that feeling' and what is that gonna do except add to my financial troubles (mostly overdue medical bills anyways) Thanks for your comments, I really do appreciate it.

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You seem so knowledgeable about pain meds/medications. Want to ask you also about methadone. I've been on 10mgs (switched from morphine 10mg) for about 1 1/2 yrs now and I don't think it really helps BUT,,,,from what I've read on different forums it seems that methadone is a b**** to slowly go off of??? Do you have any information about withdrawing/tapering OFF OF METHADONE/?? The name alone scares me and anytime,any doctor,pharmacist,etc asks me what meds I'm taking I always state that I'm on methadone FOR PAIN RELIEF!! NOT HEROIN ADDICTION. Any comments or help for me on that? Do you think there is a different med I can take instead of the morphine and methadone. I think I'm on that for the long term pain and the percs for the break thru pain??? I'm really trying to get more involved and more informed about my medical care and my meds. I've always had family/friends to help me out but recently had a DV issue and I'm all alone now. Did it to myself tho. It's hard to trust anyone right now, I'm really struggling. But,,,,since I'm on my own I need to be more informed or I'm just gonna get walked over and kicked out of the way. Thanks again

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I wish I had an answer for you, but I along with most people on this forum are just like you..we are lost and are shuffled from dr to dr...trying med after med.

Prayers, that you will find relief soon!

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I am a fellow sufferer of RSD. Before switching to lyrica I was taking Gabapentin, maybe ask about that. I also take Tramadol for pain it takes a while to kick in but works good for me.

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Finally well enough to reply. I've been unable to function for almost 2 weeks now.It started with a stomach bug,vomit,diarr etc and as I got worse I couldn't keep any of my 12 daily RXs down so I went into withdrawls,had numberous daily seizures just all over horrible.Finally went to ER yesterday just couldn't take that awful feeling anymore,,they gave me a shot of Zofran(?spelling) and wished me luck and sent me home.I think they were thinking I was there for pain meds I kept explaining I'm taking my RXs as prescribed but would vomit most of them back up and after being on 1 pain med or another for 15+ yrs now my body needs that meds or I go thru withdrawls,OMG.Scary as heck,felt like a 'heroin addict' that was withdrawling from heroin that I saw on a discovery show a few weeks back.Worst feeling I've ever had in my life!! So today,ya the stomach meds working a lil but I've lost it a few times today BUT only 1 seizure. ANYWAYS WANTED TO THANK ALL FOR ALL THE ADVICE AND SUGGESTIONS. The Garpartine, what type of RX is that? Do you know if it is expensive? I'm now in the 'donut hole' with Medicare Part D so I have to pay full price for my RXs for the rest of the year!!!! THANK YOU THANK YOU May GOD Bless us all and pray that we all find relief and A New Quality of Life that we once experienced.

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Can anyone give me advice on how to talk to my doctor,seriously talk, about the fact I've been on the same meds, same dose-no increase what so ever-for 6 yrs? Been suffering with RSD and arthritis since 09.12.95,I remember that day,YUCK. I know these pain clinics are watched carefully by the DEA and others, we get random urine tests,which I've never failed. Been at the same clinic,never failed a urine,never ever asked for an early refill-a good all around patient.I've been inquiring for 6 or 7 appts now about how the pain meds just aren't doing it for me.I'm not asking to be 100% pain free, or to be 'high' I just want a little time during the day/night where I can actually smile because I feel decent,ya know? It seems my doctor just doesn't listen. Now with all these docs having to type everything into the computer during your visit more and more now I feel that they are hearing what you are saying,typing it in, BUT NOT LISTENING TO WHAT YOU ARE SAYING? Is anyone else getting that feeling since this new everythings gotta be typed into the computer as you talk?????? So frustrated. Switching to another pain clinic I know is an option,but then so many people tell me they've tried that and the new doc 95% of the time thinks you are 'doc/pharm' shopping??? I really like my pain doc been with him since 1995 but he's no longer listening to me. He went from a small office in my area with him and 1 other doctor now he moved about 30 miles from me and is now part of a hospital and now there's prob 10 doctors in the group......He wants me to put in a stimulator,he wants to put some wires in my back, he wants to do surgery,,,,,,just feel like he's saying 'I'm sick of hearing her wine,lets do a procedure and maybe that'll shut her up!!!1

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Hi rsdsufferer i have had rsd for a long time too about fifteen years. I am on 50 mgs of methadone and alot of hydromorphone for breakthru pain and the whole thing is terrible I have no quality of life. I go to a pain clinic and have had the same doc since the beginning i have tried quite a few of the long acting pain meds and some of them just quit working i think the meth is quitting too it is so hard to tell if it is quitting or the rsd is getting worse the doctors wont help do any tests or anything i heard there are some new long acting meds but i dont think she wants to do the work of changing mine. i tried to change pain clinics last year the new doc was going to fill all the scipts and everything like try some new ones but when time came for him to write up the scipts he completely changed his mind and wouldnt give me anything except the meth so i had to beg my way back to the old pain clinic. I agree with botched I know what u mean about the doctor typing into the computers when they are supposed to be listening to what u are telling them and i think u are right they arent listening. I have read what mine was typing and it wasnt even close to what we were talking about it was her opinion of what i was wearing and how shiny my shoes were. getting suffer with rsd off the tylenol is alot better for your liver did she tell you how your liver was doing from your blood tests. These answers kind of run together like everything else when u are on all these meds they tend to mess up everything. I agree with lollie i think alot of people are in the same boat looking for pain relief I am so depressed and none of the depression pills seem to help. good luck to everyone i hope thing get better......Alan

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My heart goes out to you Alan. We try to suffer quietly, but......I understand your 'quality of life' comment. I've had RSD since 1995.I've tried every RX in the book.The methadone is okay, but like yours,my system is now dependent on it and it has rapidly decreased in pain relief value.Liver tests were done bout 1 yr ago by rheumatologist (they wanted to r/o any type of arthritis-nothing,just RSD)but nothing since.It was in bad shape then and it took me that long to 'talk my pain doctor' into changing to perc w/o tylenol.I have serious stomach/nausea/vomitting bouts every single morning.I'm sure its from all the RXs I take.I've been told to make sure you explain to your doctor, each and every visit,how poor (or good) your 'QUALITY OF LIFE' is.Be honest with doctor.I think my doctor is maybe starting to realize that I don't want to sit on my butt in too much pain to do anything & I'm NOT an addict.I just want pain relief so I can function as a 'normal, functioning' person. Maybe enjoy a day or 2 with functionable pain relief. Keep in touch and StaySafe

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Hi rsdsufferer wish i knew something that would help u i tried lyrica a couple of times it made me suicidal so i got off it pretty quick tried neurontin and it made me feel like i had a rash all over my face there wasnt a rash just felt like it. I was on oxicontin, fentenal patches they both quit working and were very expensive this methadone has lasted the longest and is very cheap i have tried all the short pain meds i think hydamorphone works the best i think is really hard to tell. I try to keep my foot warm when it starts hurting it is usually cold even in the summer it is still cold to the touch when it hurts usually. It sure can ruin your life are u in a cold place in the winter like i am i am in n. utah and it gets cold here in the winter too bad we cant have a pity party that would be fun at least alot better than no party lol.. seems like b****ing about it makes it feel better like a complaining worker is a happy worker no that dont sound right but is something like that well hope ya having a painfree weekend see ya alan.

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Hey Alan,Sorry,been bed ridden for almost 2 months now.Very depressed-financial,serious,issues.Mostly medical bills.Getting pushed around alot by drs.No one wants to continuously treat me.They push me to more and more specialists,which of course,is more $in copays.Im on the same,methadone 10mgs 4X day,&perc 15mg 5X day.My body is already used to this combo,I can't take it anymore.The methadone lasts the longest and does help but I've been hearing serious horror stories about getting off of it.Prob never will be able to at this point cause like you,the methadone is the cheapest,been around the longest I guess thats why.Im reading alot about opanas.Have you heard anything about opanas?I guess they are equivalent to an oxycontin,but not as 'deathly',I guess?? LMK if you know anything bout these,okay? Ya, I'm in a cold,very cold place too. Connecticut!! Thinking about a nice warm but small island somewhere that I can just have warm sunshine AS LONG AS THE ISLAND is big enough to have a pain doctor!!! LOL. Hope you are doing okay,Im trying so very hard to get the heck out of this depression,but I just don't see a light at the other end yet. I'm hoping to find one soon or.......Take Care LMK how you are doing. (been having trouble paying bills and the internet service is kinda last on my list of bills so its been temp shut down a few times,but pls write back when you can and I will too) Maybe we can have a pity party somewhere btwn UT & CT someday!!!

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Hi Suffer with RSD boy that is too bad u are so sick would be really bad to vomit up your pills did the shot at the er settle your stomach down. If u are in the donut hole maybe you should see if your pain doc will up your meth to five a day and cut back on the percs would save ya some money i think five is the max it is here. You got divorced that sucks too to be all by yourself is tough with rsd. do u know if u can send your email addy on this forum would be better than having to look on this site if u want to i will send u mine. winter is coming again boy with this rsd i hate winter and i used to like it i am trying a new pill it is like lyrica but boy are they expensive they are cymbalta i didnt think pills could cost this much thirty of them is over two hundred they seem to be helping tho but they have some bad side affects and i am hoping they go away. My foot just started hurting bad so maybe the cy pills arent working as well as i thot. Makes me not know what to do if they arent going to help i dont want the problems that come with them will have to decide is hard tho to tell for sure. Hope u arent hurting as bad as u were when u say bed ridden for two months u mean u stay in bed all day or get up and watch tv or what ya cant stay in bed that would be terrible. well write soon and let me know how u are doing........alan

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I have RSD/CRPS and am currently taking 500 mgs of Lyrica per day. 50 mgs of amitriptyline at night and 5-7.50mgs of oxycodone tablets approximately every 6 hour's. I also have Lidoderm patches and can wear up to 3 a day, 12 hrs on 12 hrs off. My injury site is my rear end so I understand suffering. I've not let anyone try to make me take more narcotics for just that reason. I don't mean to sound harsh. But I was bedridden for 6 year's. Just was relocated to a higher altitude. As sea level was killing me. You've just got to find reason and keep pushing as hard as you can. And rest as you need. I never go anywhere where I have no refuge of sorts. To lay down or whatever. I know this disease makes one think of death on a daily basis. You MUST find reason. Find anything you enjoy and create the new you. Anything to find reason. I wish you the best and I know how hard life is for folks like us. I can't find anyone to see me now that I've moved here. It's like we have the plague. Don't give up please. Gentle hugs >!<

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