I dont mind sharing here - (and I dont know how to message! lol) Im pretty new to all of this too.

I have sympathetic nerve blocks done and my first was within the first month that I was diagnosed. I know that they do not work for everyone (as both my Dr and post on here have warned me) but my first was a pretty big success in my book. I had around 70% pain relief and was so relieved that I sobbed!! Sadly it only lasted for 3 days until the pain came back, but it was something! My second had just about the same amount of relief and lasted 9ish days. I will be having another one done on the 16th and the Dr is hopeful it will last longer? He cannot say how long they will work for me, but for now I'll take anything I can!! The procedure itself was fairly easy for me, but I do understand why some would not like it. (I'll explain how it was for me - but it may not be the same for everyone) Because my RSD in my foot they do a lumbar block. I lay face down on my table and they place a thin needle into the side of my back to my spine. The most uncomfortable part for me was when it passed through muscle. It burned a bit. They use an xray to make sure the needle is in the correct place and inject medication. All in all it took about 10 minutes! The relief was almost immediate for me. I felt my leg get warm and my foot calm down. There was a bit of soreness in the area where the needle went in, but nothing more than a bruised feeling. Again - its not for everyone, but it is something I would ask your Dr about! In my short time dealing with this horrible disease I've learned that you really have to learn as much as you can and be your own advocate. If you dont feel like your Dr is doing enough for you - find another! Research everything and anything you can about RSD. Know that it is different for everyone and that although most of us can relate, not everyone will experience the same symptoms. (like for me, I've had an increase in asthma attacks since the onset of RSD? Maybe its not related, but it sure is weird!) Im currently trying to build a team of Dr's for my RSD, but its hard to find Dr's that want to deal with it/or know a lot about it. The best chance for remission is early treatment, so Im going at it pretty stongly.

The meds are making me super wonky (they just up'd my gabopentin to 2200mg a day and amytriptylin to 75mg a day) so I hope Im making sense in this post! They think I may be having some symptoms of a spread, but I really hope theyre wrong!

Youre right that it is comforting having someone to relate to, but at that same time you wish that no one would ever have to go through this!

{{gentle hugs}}

Happy to share! And you are so right about the lack of commonality. You would think that as long as it has been around, more drs would be knowledgeable...but they are not! It is nice to find a place where people really get it and understand. I am lucky that my husband is great, he understands and really sees how I have suffered. It is hard for others to understand, they can't see it so they doubt that it is there...very frustrating, especially at work!

I truly understand what you are talking about with having more bad days now than good. They really need to get a jump on your treatment so it will be more effective!! Everyday for me was bad, and some worse. Thankfully I found a good dr (he was only like the 14th) and he treated me properly. Meds really do not help any pain I have. My SCS's are really the only thing that have touched my pain.

It is getting close to 21 years - ugh! Can't believe it myself, but I am reminded of it daily .

Wishing you all the best,
Nanc

For now work on getting cured and secondarily getting relief. I know this sounds quaint but you can control the pain a lot by not thinking about it. It's like a little piece of your mind is always dedicated to actively not thinking about it.

Try to start medications one at a time. A few will have bad side effects or conflict with other medications. Some are best to take at night and some in the morning. Always ask the doctor before changing but generally they won't care. Some like gabapentin/ neurontin might keep you awake so don't take it late. Some promote sleep so take them at bedtime. You have to find what works and we're each different. There are likely a few different diseases which are all called RSD and individuals and cases vary.

Be careful with medications too. The doc won't always warn you before Rx'ing something. One doc putme on 5mg of methadone but when I told another doc that I was going to start with a half he suggested a quarter and a laxative. It's a good thing I delayed. I prefer to avoid reading the precautions and side effects since that seems to influence me a little but do talk to people or google it first. Some of the medications can be disaster. There was one that made me feel like I was about to fall all the time and falls were a major side effect so I stopped it.

Find your triggers and try to avoid them. This sounds quaint as well like the old joke "doctor, doctor, it hurts when I click my fingers". Doctor: "Don't click your fingers". There are many things that can affect pain levels and getting control over them takes pressure off your poor overtaxed nervous system. Loud noises, bright light, stong odors, heat, cold, and raucous noise generally hurt us. Avoid noise, wear sunglasses iff necessary, wear extra clothing on affect area if it's cold. Watch your diet. Sodium nitrite is very hard on me. Too much salt or too little can affect me. Most people find eating smaller meals more often helps. Eliminate or cut back on caffeine. Avoid stimulants of all sorts. Control is key for me. So long as I feel like I can control my enviroment and stress is low I can function fairly well.

Sleep is critical. Every night we heal while we're sleeping and start the new day in better shape. There are several things that can keep you awake but talk to the doctor. Tizanidine stops my tremors which keep me awake. Buit then I have various other medications I can use when needed. Tramadol APAP is one of the few pain killers that has any effect at all. This is the problem with this disease; pain killers usually have no effect. I woke up from a hernia operation screaming bloody murder because my hand hurt and it took 20 mg of morphine just to shut me up and it had little effect on the actual hand pain.

Don't give up. I confess I do get bored sometimes but there's still lots to keep me occupied. I work as much as I can and this seems the best thing I can do for my condition and my state of mind. Work just makes the pain float away as long as it's not overdone.

There's usually considered a two year window during which cures are fairly common so you just might kick this completely. Don't forget it can come back though. Good luck.