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.

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

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.

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

Hi Sandra.. This drove me nuts too?? I didn't know that name of that inserting the needle thing either.. LOL (Maybe I'm floatin' too much on oxygen too..:0)
Anyway I looked it up.. do you meen Fluoroscopy? It's a veiwing method often used to assist the doctor in precisely locating the injection so the mecication reaches the appropriate spot and only the appropriate spot. Love, Desi