Hi I'm Mark ,I was Dxed with RSD back in 1968 ,I have hurt so badly ,had terrible feart with Doctors changing then the next Doctor trying to implant something that didnt work at all (we are all different what works for you may not work for me and vice versa ) I just think it was what a Doctor believed in .Finally though pain medicine is no longer looked at with Doctors feeling each RSDer is an addict ,if they hurt like us they woud probably try Morphine too ,it takes the edge off .In 1983 I foolishly shot myself in the heart which made my RSD much worse of course . Now Im in Oregon and it is very hard still but I am also still alive anbd kicking .It is hard to walk and I am greatful to music ,to the internet and most of all to having a girlfriend ,I'm 54 ,I'm hurting bad right now but am seeing my Doctor today if I can ever help anyone ,I am at rsder1 at Gmaildotcom or maybe I will see you here ,let your Doctor know how bad your Depression ,you probably need help there (unless you are happy about being in such incredible pain) if nothing else ,I have learned in the last 40 years of RSD plus Fibro and PAD etc ,is there is always help ,I havent been here in many years I used to come to the RSD Chats here in the 90s Good Luck

Gentle Hug rsdno

Dear Mark -

I can't believe what you've been through. I'm just a year older than you and if my math is right, you have been coping with this since you were 14. By contrast, I made it another 30 years longer, when I was 48. I think back to how much has changed since the late 60s and am just amazed at all you've gone through, how much more compassionate docs are now in prescribing narcotics for chronic pain, the advances that have been made in other drugs, and as you say, the internet. (Hell, we barely had push button phones back then.) More importantly, the fact that you have had the courage to stick with it all these years is about the greatest testament to the human spirit I've heard in a while. (And isn't it nice to have a girlfriend? Indeed!)

Thanks for checking back in.

Mike

Welcome Mark, You have been through so much! I've had RSD for 12 years now, I feel like a young child in comparison. We are glad you are back in touch. I know you have had lots of ups and downs like all of us regardless of time. I'm also grateful for music, candles, flowers, swimming, the beauty of plants, lakes, the softness of my furry cat and her purring. My husband that is so good to me and we can talk about anything. Our daughter and son in law are so good to us too. Our daughter and myself were born and raised in Oregon. We moved here 10 years ago for her college education. She is a court reporter and surprisingly has done depo on rsd brought on by surgery. That's what happened to me, the very next day. Of course, I didn't know it for 4-5 years. I ended up going back to Oregon and was diagnosed in less than a minute. Have a great Dr now. I know what you mean by all of us are different in how we react to different treatments. So you are getting good treatment and have a good Dr.? I have a great Dr. but he is moving in 2 years. I'll start hunting with his help. We live in Arizona now and there is a great neurological hospital here, Barrow's= that's where I hope to find my new Dr. Oregon is a beautiful state isn't it. We miss the coast. We lived close to a lake and enjoyed water skiing. And of course Mt Batchelor near Bend, was our favorite place to snow ski. We have so many great memories there. It took me a long time to work thru adjusting to the physical pain and depression. I also have fibro. I think reading and writing on this site has helped me a lot. I am grateful for so many things instead of being sad of what I can't do any longer. Our son in law became a commercial pilot and they moved to Chicago a little more than a year ago. They hope to move back within the next year. Our daughter flies in every two weeks and works 2-3 days. They have been married 8 years now. How did you get RSD?? I was only 2 years out of high school. We were married in 1967l
My Dr. changed my anti-depressant meds and now am on cymbalta and I feel better on it. Also after researching myself we switched from neurotin 3200 mg to Lyrica 300 mg.
I had to go so high on neurotin to stop all the jerks and electric shocks etc. My Dr. is a phychiatrist, neurologist, and pharmacologist, so he manages my meds and has helped me a lot with my head.
We get company from Oregon every year. They are so happy to get away from the rain, they usually come in April, May, and the fall. About 30 of them came for our daughters wedding.
You sound happy, despite your physical disability. I hope you can keep walking as long as possible. That is one of my fears, as I have full body, as I'm sure you do. I do dailey stretching and swimming exercises with my toes bending. Can do in tub also. Just very warm water and curling toes, that has kept them from curling in wrong direction.
Welcome again,and hope you keep writing us and let us know how you are getting along. I'm sorry, but what is PAD? Take care, Loretta

Loretta,

PAD stands for peripheral artery disease.

EJ

Hi ,Thank You Jewell for explaining the PAD anagram ,I would imagine many of us would get Peripheral Artery Disease ,I can't even fit into normal shoes my feet and legs are so swollen and my so many of my blood vessels have broken my feet are black but I can walk a few feet .Having RSD (Sudecks Atrophy was what the Austrian Doctor Dx ed it as which is RSD but now I have it in all four limbs and my lower back ) but I am so Thankful I can live here at Sheltercare ,in my own Studio but living in others houses because I only get SSI has probably been the worst thing I have gone through .My Ex was a Crankster (I figured since my first wife is an Angel (literally unfortunately) that all women were ,I married a crank addict ,she watched me and went to a Pain Doctor lying and saying she had RSD etc to get OxyContin and I don't know what to sell so she could get her crank ,I married her in 1992 and in 1998 I told her I would help her get off crank or I would leave ,she stole a lot from me but that was 10 yrs ago ,I as I said earlier had to rent rooms from others until 2004 when I moved in here ,and it has really helped but I do have severe Depression and I shot myself about 20 years ago .No matter what I did no one other than my mom in my small family ever believed RSD was real ,though it looks like my daughter has it ,she is 31 ,.I think one thing that makes the pain even worse is other than the PC or TV ,(except when my lady comes down)I found the only way I can make it is to live in the moment .I think all of us with RSD have it now and that means we have it the same amount of time .
They think I got RSD from when I dove off my Grandparents barn trying to fly like Superman(it didn't work) but I know a lot of people must wait many years to have their RSD dx ed
Thank You for writing if I can ever help anyone (I know a lot of Doctors that work with RSD Patients especially in Tenn,Ken,NC hills and Ca\lifand Oregon but I think with RSD finally being recognized and even Fibro(I was put in Mental Health and told there is no such thing as Fibro before so my RSD was dismissed too in th 1980s .I think things will even get better for RSDers too ,I'm grateful to the Doctors who have stuck with RSD for us
I keep a good thought for you all
Thank You rsdno

Mark, You have been through so much. I can't imagine being married to someone who stole from you. How awful. At least you are away from that. I also live in Oregon. I live in Central Oregon. I can't imagine having RSD starting back in 1968. I mean so little is known about it now I can't imagine what it was like that then. Some doctors still treat RSD patients like drug seekers. I wish they could live one day in our bodies. I hope your doctors can help you feel better. Take care.
Denny

Hi Thanks for posting Denny ,I bet a huge percentage of us with RSD wish our Doctor would feel RSD for just a day.I live in Springfield/ Eugene about a mile towards the Cascades . I mentioned my EX because unbelievably to me some people get to know us because we have meds (I don't understand why they will not go to a Doctor themselves ,anyway I never tell people I get Meds if I must take mine in front of them ,I just say they are BP Meds or whatever fits in never that I get Morphine Klonopin etc ,to me the great part of my meds is they take the edge off so I don't go crazy or do anything I would regret later. If someone does know somehow what I take I explain that I may be Dependant but I do not have addictive behavior like selling or trading my meds.If I do anything wong I am letting down all people in Intractable Pain like the RSDers I know.
Like Loretta was saying it's nice for people here in Oregon to get to a sunshine place ,though for me I enjoy the rain and here in the Willamette Valley ,in winter the high is 40 f and low about 30 and rarely it gets into the teens ,the beautiful Forest here seem to quiet my burning pain a little.
To answer Loretta for the first time all my Doctors and surgeons ,Therapists well everyone who helps me are women ,I didnt head out trying to get Women for my Docs but I must say I get the meds I need and I have the best Doctors I have ever had .I do stress out at times about losing everything with pain meds sadly being so Political ,but I have been really lucky since the late 80s ,the only time that I was taking my meds wrong was when I took Soma with my Morphines since Soma potentiates the Opiates and the Opiates potentiate the Soma .My Doctor whjen I lived in Bristol Tenn/Virg helped me get off the Soma (I took 16 a day) willing to give me as much Morphine or other pain med as I wanted but no Soma ,my mind is so much clearer and I no longer twitch.In the 60s the Doctors didnt have Morphine Contin so just tried to keep me out of it with Soma and #4 codeine but I couldnt stand the pain.Sometimes depression gets to me but not like it did back then
I Hope Everyones Pain Improves rsdno aka Mark

Hi Thanks for the nice words Mike . I hope I am always making it clear that my having RSD Dx ed since 1968 doesn ot make my pain worse (In fact the pain Doctor here told me all my nerves burnt out anyway [what an idiot],when I refused the Morphine Pump and thats all he does and his partner does oh also SGB and Epidural etc blocks )and I have had so many ,I was told it would be unwise to get more blocks .Different things work for people whos RSD was gotten and treated differently I would still like Doctors to treat us as one Intractable Pain patient at a time ,the RSD is more about my pain to Doctors and my RSD makes me part of a cohesive community of other RSDers and I am proud to belong to it especially here when i think of all the really strong caring people in pain I have gotten to know

Most important to me is to always let people know that I can't feel my RSD Pain from 1968 ,I only feel it right now ,which to me means all of us RSDers are at the same temporal place as far as pain
Now I was born XX XY and I still feel pain from that ,and I sometimes wonder if maybe I was more apt to get RSD because of that ,since it seems so many more women than men have RSD ,I even feel kinda bad when there are women's only RSD Groups (like For Grace) and it makes it look like RSD isnt as important in men ,but I guess I can join either type of group ,it's Thanksgiving it's a long day ,I hope everyone has a Wonderful Thanksgiving ,my lady wants us to go shopping I think at like 4AM why do people do this (I'll follow Melissa anywhere),it is much more fun to get to give a lot of presents to people though I haven't been able to for a long time ,I live at Sheltercare and they give us so many presents ,it is very humbling ,its also humbling to hear such nice words from people with RSD who are hurting but getting through just as well as possible

Gentlest Hug Mark

Hi Mark,

You are truly a hero in my eyes. To tolerate all you have been through and still seem to have a positive attitude is so inspiring to me. I have had rsd for almost 6 years. I guess I have been lucky it has been under control to a point. I have done the ketamine route and it definitely stops or settles down the pain and other symptoms. I can relate to people becoming your friends for the medication you get. When I first got hurt I had women who really where just hi and by friends ask me to sell my medication to them, I was also robbed by a maid service the police had to get involved because my doctor had to write all my rx's over. So now I do the same as you. If anyone ask I tell them I don't take anything anymore. It is unbelievable the effort people will go to get pills. And the people who approached me are the type you would never expect, very wealthy, big homes, anyone else would think there life is perfect. What a joke. I have learned so much about people since I was told I have RSD. I also have been lucky with my doctor who I have been with since the beginning. He not only helped with the RSD but directed me to the proper doctors to fix the effected limb which is almost 100% in function but still have so much pain and the RSD went to my spine which is new in the last year or so and that is really killing me at the moment.

Well what else can I say. You deserve a metal. Keep healthy.

Again, you truly inspired me. When I think 1968 I was only 7 years old.

Gabbycakes

Thank You for your kind words I got sick and barely came back much til 2011 I read your kind words but I only let people know I have had RSD since '68 so they know there is hope and it isnt terminal with me .
My feeling is the pain I had the last 44 years doesnt matter ,the pain I'm sharing with you gabbycakes and all others with rsd only matters in the present ,this moment is when we all feel the rSD pain and the other ways it hurts like in our loved ones thinking we are fakers or just weak a DOCTOR AFTER i WOULDNT get the scs or pump said "It probably burned out anyway" when i didnt wAnt hIS maChinEry (i have triEd it before juSt not for me)
i HOPe yOu cAn foRGIVE Me FOR WAITING SO LOnG TO GET BACK TO YOU gABBYCAKES apologies '
RSDNO