You need to take Neurontin for nerve pain. I've had rsd for 10 plus yrs. and have tried many pain killers. I get little relief from them. I have been off all pain meds.(except Neurontin)and have notice little difference in my pain levels. So pain meds. don't really work for me. It could be that my body has built a tolerance to them. Don't let anyone tell you that it is in your head. I've had drs. say that I don't look like I'm in pain or if I hurt that bad then why aren't I crying. Well if I looked or acted like I feel I'd be dead.
Cold hurts but having things rub on my knees I can' stand. IT SUCKS
i had a fractured wrist and developed rsd..physical therapist finally recommended an anti-depressant for pain.. i cant remember the name, but it helped my pain when lortab would not.then lots of therapy...please ask your doctor about antidepressants for pain management.......good luck
I have RSD in my right hand , wrist and arm! I after having surgery to fix a cut tendon in my hand the doctor left the cast on too long with my wrist and hand seeking inside! When the cast was retaken off 2 weeks later my doctor told me that I had this disease and would have it the rest of my life! Next month will be 7 years I've been living with this! My life has drastically changed and day to day life sometimes feels impossible!
I think the best pain medicine for RSD (which I also have) is low dose Naltrexone, 4.5 mg per night taken around 9 PM. I have been taking it for 1.5 months and the pain is dramatically less. I had throbbing pain with a thumb reconstruction surgery and it wasn't until 3 months when I was diagnosed. I am at almost 5 months and I see a clear path to no pain in my future. I also do accupuncture, chiropractic, massage, stretching. Read Mark Cooper's article published April in the Journal of Neuroinflammatory Pharmacology (copy it and take it with you to your MD, I did, my Doc is excited).
Hi Ty, I have RSD on my entire right side because of a motorcycle accident. It is something that I had no idea existed until I got it. I am on Lyrica 600mg although I have heard people say "that's too high a dose, you will die on that dose". I have been on this dose for 10 years. Lyrica in combination with methadone has worked well for me. It took the first 5 years to figure out the correct meds that would work. However, opioids are becoming impossible to obtain in drug addict haven Florida. So we are all punished, and now I find it impossible to obtain the methadone. None of the big pharmacies carry it anymore and even the mom and pops are only selling it to people without insurance, because they can charge big bucks. I am going to talk again to my doc and see if we can try something else, I don't know what else because I have already tried all the combinations available and only had relief with the Lyrica and methadone. So I go so desperate with the pain, that I thought, well it's either go to new york and get some heroin, or kill myself. either way I cant just have the pain. I cant even breath with the pain. I wish you luck!
Hi my name is Robin and I so understand and you have described this disease so well. I was a hairdresser for 29 years and I fell and broke my wrist. I had to have surgery and as a result I developed rsd. I never knew such a horrible disease ever existed. I feel your pain and I pray each day for everyone who is suffering with it. Thank you for posting this. My thoughts and prayers are with you.
tatertim. im replying to you as i have very bad post thrombotic syndrome after a dvt in each leg after a hospital visit for pneumonia in 2004.
Post thrombotic syndrome is a very vague diagnosis. most doctors havent a clue what the symptoms are never mind a prognosis for the condition. as far as i am aware(and believe me iv been researching) PTS is basically side effects and complications after DVT. In other words they dont really know why or how it happens and of course there is no cure if you dont understand the disease
i have finally found a drug that helps me and has made such a difference to me that Im hoping to start training for a new career soon. that would have been unthinkable and impossible until i was prescribed amitriptyline for chronic pain. I started on 10mg at night and noticed after a week that back pain i'd had for years was majorly reduced. i was put on to 25mg at night then and started to get a lot of pain relief in my legs. then it was increased to 50mg(still lower than 75mg use as anti-depressant) and then i really felt the benefits for PTS. i was using a stick to walk or sometimes 2 sticks. forget about being embarrased as a young man mobilising with that! I didnt give a sh*t as it was so sore putting any weight on my legs. im already on 16mg buprenorpine a day for pain but it seemed to become less effective as an analgesic once i developd a tolerance
chronic pain illnesses like fibromyalgia and PTS or RSD seem to be very much on the fringes until they become more mainstream in treatment.
RSD is one of the more recent diagnoses that was only taken seriously by doctors in the 2nd half of last century and isnt fully understood by any means
Fibromyalgia(FM) and RSD seem to have a relationship I personally have noted looking on a dvt forum regularly over the last 5yrs. RSD and FM are often mentioned in similar threads. I know more about FM myself and have only noticed RSD mentioned by people with significant localised pain wondering do they have FM or RSD. RSD is definitely less understood. I hope that more people can get some relief from constant chronic pain like I have. just because amitriptyline worked on me dont mean sh*t btw. each person responds very differently to different drugs so be careful and always follow the directions of your doctor or pharmacist.
Lyrica by the way is the new abused drug of choice at the moment. one 300mg capsule got me super stoned for over 24hrs as I think it combined with my subutex to a great extent that felt like benzos
peace brothers and sisters
Be careful of having any needles. Any puncture can cause the rsd ie, crips to move. I have red in back, llower extremities, arms, neck and now sclap. I am in stage III. It started in my left knee, and after 140 different procedures, nerve blocks, spinal cord stimulator, rftc, radio frequency nerve burnings, it spread and put me in a wheel chair. I have had this since 1997. Many different combinations of medications and treatments. Any invasive treatment can cause it to move.
My heart goes out to you.I share this information to anyone I meet with chronic pain ! Disease can't live in an alkaline body. Its 4 amazing products that can help you!
God Bless you & keep fighting:-)
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i think so you have need doctor advice.
I too have PTS. I had three DVTs in my right (dominant) arm. I then also developed RSD as well. Talk about frustrating.
I totally understand how you feel, and I mean that as a several year sufferer. When it first started for me the doctors didn't have the name they do today. What is the most awful is people that do not have severe pain daily or made to feel and appear as a drug seeker to help the constant pain haven't personally experienced what folks like us do. For myself it is so tiresome to see staring from people who think I am just fine. My handicap parking tag is bogus reasons and if that ridicule form strangers isn't bad enough, my doctors and nurses I feel judge me for asking for pain meds and monthly refills. I have been sent to a pain clinic where justice I felt was prevailed when the physician I saw understood and agreed with my course of treatment. Then the doctor's office started playing games with not getting my written script ready before they closed especially over the weekend. I too am now on disability. I feel shame, misunderstood and disgraced by a once vibrant enjoyable life and successful career. A nurse even told me someone with cancer was entitled to the type of pain meds I am given not me. I can only hope those who look and stare and judge don't have to experience what my life is. My father who passed away a few days ago once said, don't look at others with judgment rather understand that person through their means of living and hope no one judges you prematurely. I hope you do well, and don't lose hope. You have the training you physically did all those years for a reason. To be strong, spiritually, mentally and physically. Take care and know you are not alone.
hello my name is hope and reading your story its almost like me I was in a accident 14 years ago went to many drs who never cared to help I have fullbody rsd from my head to my feet when it encased my entire body my face was so swollen my eyes where swollen shut I have a pic before and after .there is a drug I found after all the painful sleepless nite I was researching rsd and finally months later and found LDN look this up there are tons of people there who use this drug to its benine at best and youll most likely have to fight for it even though its no big deal it has perform miricles for me and my severe case they wanted to send me to Germany and put me in a ketamine coma I said no way LDN isn't a cure but what works with it as well is walking and a lot of sun shine which is good for the receptors to receive more oxygen and vitiamin d I was bed ridden in a wheel chair I was to the point of dying I have a extream case please look it up and I know exersize sounds like hell I still have flares but I got up to 8 to 10 miles everyday and it was hell in the start but I pushed my way through it over 4 years I feel so much better.when I was done walking and went home I sat down and felt much better.i kid you not I think if it works for me it can work for anyone.excuse my grammer I cant remember a lot of things since my accident .Also I received a email last month stating by the end of this year there coming out with the first drugs for rsd patients only I cant wait.I wanted to die as well and didn't care but I did it .if you have a way for me to send you photos of me before and after youll see what ldn and walking did for me.you will have a better life promise. iv been to hell and back to and I know it sounds so simple but it works.ill give you my email so you can contact me and if you have a cell phone I can send you before and after. please contact me just give me a chance to get back to you im out a lot.