15 years ago i was told rsd and for 10 years my husband pushed me in a wheel chair. i needed cateract surgery in both my eyes and had a trama then too. i tried nerve blocking and many harrs med they put me on finnaly i struck with percert with my family dr.
Did get my eyes fixed but constant pain, next the said i had cancer of the throat i had to get my voice box out and alot of things there now the pain is in my neck and my eyes is fine. I DON,T NO WHAT TO DO WE MOVED TO FLORDA AND THEY LOOK AT YOU LIKE YOUR LOOKING FOR DRUGS NOT TRUE I NEED SOMETHING TO WORK,
Hi Everyone, I tried herbal's, as well been ill with this disease 14+ years. Google best Dr's for RSD/CRPS Here in U.S.A. I live in Arkansas I was in a wheel chair after a bunion operation, RSD came calling in the right foot { one operated on } foot would turn really black. Air blowing upon it hurt.
I went through a 5 year stage of shingles every month in winter, each time they came out at the same place over the left eye, plus would become infected. Then I had to spend 4 to 5 days in the hospital.
Now I take Methadone, Ambeian for sleep as well all total 10 medication's. Then another 5 for when other things are happening. I was 38 hers. old when I developed it. Now my latest is they want to put a morphine pain pump inside me. They wanted to in 08 as well. I allowed the spineal cord stimulator which now has a recall upon it. That worked then it began coming off the spine where it should have stayed [ the place my Dr connected } I eventually had it taken out. I was told by another Dr I needed the morphine pump, side effects -it weakens the heart. I can say this at least now there are actual people to speak to concerning this illness. When I developed it no one was aware of what it was. Only a handful also on YOU TUBE ia Dr on there said when a DR puts a pump into a patients they "MARRY THAT PATIENT" because no one else will touch them and the patient will have to return the rest of their life. Please write me anyone who may wish, questions and things such as that. The more who speak out the better. I was maintaining and then my helper had their own issues and I found it { RSD/CRPS} spread over to the other foot. I grabbed my camera and took [photo's } each time it would swell up and it would change color. This was they have it to look at. One toe on the {L} left foot drawls up in spasm and it hurts so . It goes complete straight as you can tell from the photo. The whole leg is red as well as foot. Love to hear from anyone, please write and if I can help I will. If it just will go into hibernation for winter-thisis the worst time for me is winter. Take Care write and share your stories. I have 14 yrs. of odd things I have gone through. I imagine many of you have as well. Cheers! May you all rest when you sleep. Brenda
Mine has not wore itself out only spreads. They say with latest updates here it gets inside out organs.
They did decide it spreads and is a disease that gets into our organs. Look on You Tube, they have a DR on there speaking and I watched him. It was enlightening, Take care
Hey everyone, I have had RSD in both my arms for about 4 years now. The first year was horrible, I stopped sleeping and stopped eating. I had to go through so much physical therapy. Though after that I was able to find ways to manage it. The doctor said that the RSD is what causes my stomach problems, so now I take this natural medicine called Papaya Enzyme. This is the only thing that I discovered to semi work. I still get sick after eating, but it helps calm my stomach some. When I have bad flares up I play around with clay to keep my hands moving. Also, I noticed that if my hands swell up I take a piece of gauze and wrap in around my hand and fingers pretty tight for only a few seconds. It might sound unsafe or silly, but a lot of times it brings some of the swelling down. I still have not found a cure at night and my sleep is still pretty awful. But for those who are just starting out know that even if your arm or leg hurt still MOVE IT! It may feel so awful at first, but the more you exercise it the better it will feel. I would get some play-doe if it is in your hands or arms and get a treadmill or start jogging if it's in your legs. I know it hurts, but I can tell you that you can get trough it and live a normal life. Most people I know are not even a aware that I have RSD. As time goes on it only get easier. God bless!
hey, I know where you are (figurativley) youre family thinks you are a jumky, youre friends think you are faking. your position at work getting more precariouse? Or we can go forward to when they find a reason to fire you, you lose youre job, your apartment, car, you have no one, you are a gost. Those people you used to make snap decisions about turn into somthing better than you. Its f*****g hard. But YOU LISTEN TO ME! PRAYING IS NOT ENOUGH, YOU WILL STILL FEEL SUICIDAL. mY BEST ADVISE TO YOU: FIND JOYIN ANY SMALL THING YOU CAN AND TRULY BE GRATFUL TO GOD FOR IT. START SMALL, A PRETTTY BIRD FLIES BY, YOU FEEL A MOMENT OF RECESSED PAIN, SOMEONE WAS KIND TO YOU AND THANK GOD VIOLENTLY FOR IT AND MEAN IT. YOURE BLESSINGS WILL INCREASE THE MORE YOU LOOK. Any doctor will tell you your feeling delegate how your body feels. In short find a reason to feel better and you will. Good brings good and vice-versa. I have it through out my body but I learned this survival technique and I just gave birth to a beautiful baby girl (that is after ten months writhing in bed b/c I quit my meds. But now, Ive never been happier in my whole life. good luck to you, I hoped this helps you a little
dont go that route so hard to get off the pain killers after on them for years my pain doc. left town and me hi and dry
thought i was going insane smoke some good quality weed it dont stop the pain but helps take mind off of it
i have used it for 30 years constant every day ..kills my headachs,just relaxes you and your nerves im not just some pot head
as most would have called me years ago ... i also was one of the leading tire fleet inspector for pepsi cola aep ohio and new river eletric all in cols area so if i can help ya i will it is a shitty deal rsd sucks so much i got it after getting hurt on the job 2 years agoand was found to have rsd in my right foot.... smoke trust that it may not be the answer but it does ease the pain and makes it beariable GOD BLESS IT IS A PAIN THAT NEVER QUITS ...HANG IN YOU WILL FIND OUT WHAT WORKS TRY EVERYTHING BEFORE GOING TO PAIN KILLERS
NOT MUCH FOR SPELLING and puncuation lol im still off fighting with bwc 2 years to date
I have RSD (CRPS type 2= Chronic Regional Pain Syndrome type 2) I have had it for going on 5 years. I was at a concert and got stepped on. My foot was broken, and the damage was done. I had never heard of anything so insane as this before. Stepped on? seriously? at a concert?! and now my life will be filled with pain forever!? It''s not fair! WTF? It took me a long time to come to grips with it. I have tried every medication under the sun.... and then some. I have tried sorrel nerve blocks, lower spinal blocks, and finally I had a scs implanted last February. It helps a bit- but only when it makes contact with my spinal cord- which isn't as often as i'd like. I take meds for pain, and I can feel myself getting dumber everyday because of it. I have plummeted into a horrible depression. I can't climb out of it. I have gained an obscene amount of weight since I can no longer walk/climb steps/ or exercise with any real gusto. I don't sleep- ever. I'm cranky and snippy. I've lost me. I lost me. I don't like who I am or who I've become. Some people think i'm crazy. some think it's all in my head. some just think i'm lying. but no matter how you look at it, it has ruined my life. i can't hike, or dance. I can't play baseball with my boys. I can't ride a bike. and my ex-husband HATES me for not being able to teach them, because i can't run along side them and hold the bike up. Having RSD is... well, it's a living HELL. Nothing makes the pain stop. I have heard that acupuncture is good for RSD, but I've never tried it. My insurance doesn't cover it, and I'm currently raising my 2 children as a single mom now without a job and on disability (which I fought getting for a very long time, because I didn't want to believe my life was over.) because I can't sit or stand for even an hour. I would have jumped out a window years ago if I thought for a minute I could leave my children- which i can't. I guess it's somehow comforting to know that there are others out there... but that just hurts my heart to know that others are experiencing the same hell. I'm not the person I used to be. I miss being me sooooo much. I have SERIOUSLY questioned the doctor about just cutting off my leg. he won't. he says it won't help. but i swear... one of these days i may just jump leg first in front of a bus...
Hi Everyone
I have had RSD for almost 20 years and have found that there are things that make it worse and things that make it.... Just because it sounds good don't mean it is and just because someone says it will make that pain less don't make it true.
The first thing I ask my doctor or insurance company when they want me to try some new treatment is can I have the names or can you give my name to some patents who have had this done over a year ago so I can see if it is helping them with the pain. Then after I talk to them and meet with a few to see with my own eyes then we can talk more
ICE-make it feel better because it kills nerve ending. But when the nerve ending grow back they are even more painful than before so your pain level goes up.
Narcotics-gives by mouth make it worse because they make your pain levels go up and down. An this makes the nerves system made and the pain worse.
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is my email if you want to talk or have more questions.
I was recently diagnosed with RSD and I am totally lost. I had never heard of this disease. I am so glad I ran up on this message board because I have really learned a lot of and I now see that there are a lot of people dealing with this disease. I have bben on several different meds and nothing is helping. I appreciate all the information I can get. Thanks in advance.
My RSD was diagnosed when my Dr. noticed severe atrophy in my toes, which also have a claw like appearance. Although pain can be terrible, I have had the best recovery experience using a fentanyl patch (75 mcg every 48 hours) Lyrica(50 mg three times a day) and ibuprofen for breakthrough pain. This routine is the result of much experimentation with different types of medications, and even though I still have pain, it is bearable. Hope this helps!
Dear ping I have rsd in my legs up to my hip omg the pain is a12 or more on a scale of 1 to 10 I tried the pain killer and yes it did help a little but not long enuff I must tell u that I was in firefight of over 26 years and I don't drink or do drug or did a friend told me to smoke pot I didn't want the dr. Said no if u do I must stop the pain med. That the law . Well I smoke 3/4 times aday just a little 2 or 3 hits and I fell better I can do more . Yes I still hurt but it went from a 12 to a 4/5 or less I know it wrong but I had to do something I don't no if it will help u but now I can be a person not a lump of pain 24/7
Ibuprofen does not work for me because it took so long for me to get diagnosed. Eventually, you will get used to each medication and will have to switch back-and-forth… Of course, there are risks with every medication you take including ibuprofen or any Narcotics. You just have to look into what medication it is best for you. Some people, will not start taking higher medications because of the risk of dependency, but if it's taken as directed by your doctor those Affects can be avoided. I have been on medication for about six years now, and I don't think I would be able to survive the pain at times if it weren't for those medications. For me, I had to experience different medications, with the help of my doctor to figure out which medications work best for me. I hope you can find someone to help you! If you ever need someone to talk to feel free to email me.
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wow, have felt the same, and going to a new primary to get a referral for new pain mgmt; i am sick of the damn pain and the drugs that just mask the problem; starting with sympathetic nerve blocks and then maybe the stim implant; its sucks all the way around; do you get disability?? i am almost at the stage of not being able to do anything...