No Cure
 

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?

Hi Dealingwithtos
 

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...

Hi
 

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

Hi,
 

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,

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

There is always hope.. new research..
 

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 :o

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..

:grouphug:
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.

Hello there,


I agree that Ketamine Infusions are well received over here in Australia.
We are extremely lucky that we have many, many Pain teams who use Ketamine regularly with some pretty amazing results for some.
I have also had HBOT which I must admit felt that it was a waste of time for me but at the same time worked well for another patient who shared the chamber with me.
Unfortunately blocks seem to work according to how well they are given and with what accuracy they hit the nerve. It certainly is preferable to have them done using an image intensifier as it gives no doubt that the anaesthetic hits the right spot.
I understand your feelings ---I am going through the same type of realisation experiences which are made worse by having extra medical problems on top of my CRPS but everyday I recount how lucky I am to have a great team of doctors and a beautiful family who give me the strength to go on, even after a decade of misery.
I hope that you will be able to find some help from all these lovely people's suggestions.
Wishing you well
Love Tayla:hug:

Hi everyone.

Thank you so much for responding to me.

The physician did the block, but the fellow was the main person that I saw. The MD who did the block opted to not do the procedure down in the radiology department. It was just in an exam room - I sortof relate it to torture. Atleast for me it was...

I know the neurontin is helping because I tried to titrate off of it about 6 months ago. I didn't realize just how much it was helping. I do think that the RSD mimics side effects of the medications - where you don't know if it's the medications or just the RSD. I just recently was talked to about Lyrica. Yes, I'm going to try it, but I'm told that it'll be more expensive. I already spend about $120/mo on medication copays. I do also have the lidocaine patches - which are very expensive but they do seem to help when I'm WAY overly sensitive. I use them pretty sparingly.

I did also try cymbalta. I had a side effect that caused my eyes to be permanently dialated. It's taken about a month but since being off of it, my eyes are pretty much back to normal. Sensitive because of the RSD, but not horrible.

Ok - now for the SSI question. If I were to go on SSI, I can't work for a year before I would qualify in my state. Believe me, I checked it out. If I were to quit my job, I would lose my house. That's the reason why I'm going through all of this. I can't afford to not work - I wish I could. I'm one of those people that when I buy a lottery ticket, I actually think I'm going to win...

Oh boy, thank heavens it's Friday. Thank you so much everyone for your comments. I'm just barely holding things together.

:grouphug: :grouphug: :grouphug: :grouphug: :grouphug:

Hi,
I have many blocks over the last 7 years. Some have been ok and some like you said just hurt so bad. After so many docs at the pain clinic I found one that can do it with only a little discomfort.
Its hard to stop working. I worked until the day I just couldn't any more. i also worked beause of my house but that isn't working out. We are in the process of losing it now. My husband is also disabled. Social security was a hard fight for us. No income for over a year. But as with drs you have to find the right person at SSI. they can put you on an emergency program where they give you a check until they decided your case. I didn'tfind out about it until it was too late. they don't tell you everything they should. things you are entitled too. Hang in there. This is a great place to come for help.

Sue K.

Just a quick heads up on ketamine therapies. I know from personal experience that The Mayo Clinic in Rochester MN will only do it for patients who live in the area because of the neeed for periodic follow ups. It is my understanding that some other places like Drexel in Philadelphia are less picky, and will let people from out of the area come back for boosters if they are willing to travel.

Mike

Hi DealingwithTos.. can your doc. give you samples of a month supply of that Lyrica? There is no name brand for that. My doc. gave me a sample and said he would continue for as long as needed(My old pain man. doc) well, I couldn't handle that, so I am on Gabapentin (Neurontin) which does come in generic. Give it a shot.. Love, Desi