Hi Everyone.

I need to get an opinion from all of you...

I've just been told that there isn't anything that they can do for my RSD. It went undiagnosed for 3 years so it has progressed. I've tried a nerve block, but was so absolutely painful that I can't get another one. The doctor that I went to does not give pain medication before the procedure so I'm screaming in pain. The nerve block did nothing for my pain. My eye went droopy like it was supposed to, but no relief in my arm at all.

I'm on medications to help with the symptoms. Neurontin, muscle relaxer, depression medication, etc. I tried physical therapy but turned out to be expensive and hard to be away from work. In February of this year, I had a blood clot in my RSD arm. So, I was on blood thinners for 3 months before the clot took care of itself.

So my doctor told me that there is no cure, no research and no definitive treatment. So, where do I go from here? I've pretty much tried all that I can. It's hard to come to a conclusion that there isn't anything and that all there is to do is cope?

I know many of you are saying "well, duh". I guess I'm having a hard time accepting that there isn't anything that anyone can do. My RSD is a result of my TOS rib resection surgery in August of 04. This wasn't a result of a fall or work injury. So, I have no disability to turn to.

I know that I'm lucky to be working at all, but every day is getting harder and harder. I literally come home and sleep from 7:00-9:30 on my couch and then sleep all night. I'm exhausted and in pain. I bought a new car because I couldn't ride in our explorer as it was too bumpy. I am taking no narcotics because of how they affect me. I wouldn't be able to work full-time if I was to start taking them. I try to do alot of deep breathing and try to stay at stress free as possible.

Haha - stress free? I just found out that I'm going to be a grandmother. I know this should be a wonderful thing, but I'm 36. It's my husbands son who is 20 but has no job, no high school diploma...

How do all of you cope with RSD and the fact that this isn't going to go away?

I got my RSD from a rib resection also.

My opinion is that if this Dr. is the first Dr. that you have went to, I would find another one that will try and help you more. No, you can't get well but you can get to a better place with it with the right help.

I honestly believe that Anesteologist do better at blocks. I just had a friend here to tell me that her PM Dr. didn't put her out or give her anything. That didn't surprise me with her Dr. He's a quack anyway. I recommended her to see my Anestologist. He puts you out enough that you don't know what's going. I had 3 blocks and I am in remission. I also had triggerpoint injections and spent a lot of time in therapy. The therapy wasn't like lifting weights or pulling on therabands. It was massages, heat pads, and myofasial release.

Don't give up and don't just take the word of your first Dr. There are Drs. out there that will aggressively fight the RSD and try to make things better for you.

Ada

Hi Ada,

To be honest, I'm just tired. I feel like I can just get to work everyday - I don't think I can fight right now.

My IM doctor said that he would give me a referral to go to a doctor down at the Mayo Clinic in Rochester Minnesota. He didn't know if he could help me, but thought I could give it a try. I just don't want to take the time, energy, vacation time to go down there to have them say that they don't know or go through another painful procedure. We haven't decided if I'm going to go down there or not...

I feel that I do my own physical therapy every day by using the arm - as normally as possible. I don't want to pay $20 per visit for what I can do at home. I'm sorry to sound like a cop out, but I just don't have the vacation time to keep screwing around. I feel like I've screwed around with this for 3 years.

I'm sorry to sound so frustrated. Thank you for your comments...

There are 2 treatments I would give somethought to- Low dose ketamine infusion and hyperbaric oxygen...They didnt work for me but I do know of people who have had success....

Debbie

I do know what you are feeling. I get that way with my situation. Dr. after Dr. after Dr.

I had my surgery in 2000 so that's when mine came on.

It will take some time to figure out what you want to do and there will be more people come on with good ideals. After you get your second wind maybe you can tackle things like the Mayo Clinic and some other things that will be mentioned here.

I just wanted to let you know that I feel for you and do know what you are going through.

Ada

Thank you so much Ada.

I'm just a little fed up right now. I think I need to wait awhile before I can handle another "I don't know."

What frustrates me is that I was going to a pain clinic. I found out later that my doctor was a fellow - not the staff doctor. She said that there's nothing else other than pt. So, to hear other avenues I could have tried, frustrates me.

I think it'll do me some good to just leave it alone for awhile and get to work everyday with a smile on my face...

Hi Dealingwithtos! It's so true.. This sucks!! Why are you working and not on SSI? I too had the 3 nerve blocks, they were not painful, just uncomfortable. My ex pain dr. I had didn't give me nothing for the pain either before he did those blocks. All three did not help me as well. I was in denial until 6.. "Yes six' doctors (one being a specialist) told me I have 100% RSD. I still am amazed at what this crap does to us!! pain, pain on going pain. If it wasn't for the neurontin and Kadian.. I wouldn't be able to function. I had to quit the job I so loved. hang on in there, get a new pain doc. if you think he/she is not helping you. I wish you all the best. Love, Desi

Hi,

I wish I could say something that can help - this is a tough deal, and RSD sucks! However,

I have had this for the last 5 years, but you learn to get through every day, and suddenly you realise that that moment when you didn't think you can bear a second more, has passed. You still get them, but you realise that you are still plodding along through every day.

I'm sorry I cannot offer more - there are some people who have tried things and who have gone into remission - but RSD is such a complex disease that... well... it's complicated and something that helps one person may not help another, as you probaly know.

just wanted to say I am thinking of you, and you are never going through this on your own.

Much love

Frogga xxxxxxx

hello there..

Your block.. was it done with screens showing him where he wais inserting the needle? To be properly done the insertion needs to be monitored by ra.. hmm.. I forgot the name of it now.. someone else will tell us

I notice you are on neurontin hows that workin for you? Mine was fine (gabipentin) but I switched to lyrica a few months ago and it is helpin alot.. Just getting around and overall body aches are toned way down, might be something to speak to your doctor about.

There are always ways we can improve our life the way it is too, like taking antioxadents daily and your self physio is very good, deep breath meditating or somesuch to oxygenate your body more fully, (and helps calm the mind) helps me alot, cause us being in pain all the time has a way of deoxygenating our systems I think it's because we don't take deep full breaths anymore..

Did you mean that the doctor who did the block procedure wasn't a real doctor? or am I floatin on too much oxygen.. lol

Seriously the Lyrica helps alot more than the Gabipentin (Neurontin) did more than I expected but increase doses slowly after the initial switch.

Cyber soft hug, an hope you are feeling better soon.. the weekends comming pace it till then and relax all weekend.. put yourself in some happy place in your mind and deep breath yourself there.. lol sounds funny but you know what I mean..


Sandra

Please have a spoon

It's been hard for me to accept. I've only recently come to realize that I'll probably never get rid of it and just have to get on the best I can.

I'm still fighting it though.