I'm sorry that you are having to go through all of this, Lori Lee :hug:. The fact that you were diagnosed within a week will give you the best possible chance of going into some sort of remission.

I would just like to share something with you that my PT's at Great Ormond Street told us. When my mum explained to them that NON of the desensitisation was helping, my PT's asked what exactly were we doing. We told them that I was rubbing my leg with a feather and cotton wool etc every day and they explained that that can sometimes cause the nerves to become more "angry" as one minute they are being touched and the next they are not so they don't really know where they are or what to expect.

They explained that to try and reduce the hypersenstivity, you really have to touch your leg 24/7. For me that meant HAVING to wear shoes and socks. The first few times I did it, I would scream in pain but after so long, my tolerance sort of got better. I still have the hypersenstivity but I can "cope" with it better, ie, when my PT's touch my leg, I will just make little noises instead of screaming in pain and it allows my PT's to be able to do more hands-on work with me.

I hope that made sense. It might not help you but it's worth a shot if you aren't already touching your affected limb 24/7. It DOES hurt unfortunately, I wont lie to you but i'm sure if it reduces the hypersenstivity, it will be worth it.

Take care and if you need anything or any help, I am here for you.
Alison.

We understand.
 

Hi Lori Lee,

I hope this reply finds you having a better day.

I just wanted to write to show support for you. We all go through the Denial Stages that Jo wrote about. Only having this for 2 months now or so, it's all really new to you.

Unfortunately, RSD just really sucks. It sounds like you have a doctor that recognizes the condition and has you taking the common drugs we all know about. It seems that Cymbalta, Neurontin and Lyrica - people react to some of them but seem to respond to one of them. I'm glad that Lyrica works - even if you're foggy from it.

Please know that there are other options out there for you. I just recently had a spinal cord stimulator implanted. This blocks the pain signals to the brain - thus reducing the pain medications needed. For me, this has taken away all of the sensitivity. Since this is only the first day back to work for me, I've only just stopped taking the narcotics. I'm still on the neurontin and muscle relaxers but will work in the next month or so to titrate down. I don't have a clear sense as to how much of the pain it has reduced. But, I can wear a long sleeved shirt without a pain patch. That's huge to start with...

My surgeon told me that my saving grace is that I'm able to work and move my arm regularly. As Alison said, it's going to hurt not matter what you're doing.

I went through the sympathetic blocks - which did nothing for me. I've tried so many medications - as many of us have. I think it's just finding what will work for you. HBOT works for Diane, but might now work for you. The stimulator seems to work for me... Just don't give up trying to find what will give you relief. There is something out there... You just need to find it.

You're not losing your mind, you don't need to check into a rehab facility. It'll just take time to digest all of this. It's not easy being in pain. But, you'll get to the point of saying "This thing is not going to beat me! I will get back to work."

There are so many people out there that are going through what you are. You have support from people who know what you're going through.

:grouphug:

I feel fine quite often when I'm not experiencing symptoms. Indeed I experienced this primarily as a sense of dread or pessimism when I acquired it 10 years ago. There would usually be low level pain first but sometimes I'd know the pain was coming because the pessimism hit. I was under huge stress which probably exascerbated symptoms. I guess I didn't take the condition as seriously as it warranted since in the beginning I was still able to do most all the things I wanted to.

From the beginning my affected hand would sometimes feel so good and so well that it couldn't be injured or hurt with a sledge hammer. It felt palpably OK! Of course it never lasted long and the pessimism/ pain would hit and it would be the stages of grief all over gain. Now this sensation has generalized and I feel this sense from my amygdala to my toes on a couple occassions.

I'm not sure what I'm trying to say here really except that you probably will have this the rest of your life if it's not in remission within the first two years. But this is no reason to give up. When you accept it and look for the triggers it becomes easier to avoid the pains. At one time I thought it was impossible for me to avoid suicide but now I've come to just try to appreciate the hours and days I have. I used to live in the future but now I have a much firmer grip on the present. Worrying about my condition always brings on panic attacks so I just try to deal with the moment.

While you may need to give in, you never need to give up. Get out as much as possible and try to enjoy what you have. Avoid your triggers. Perhaps we'll live to see the day that this thing can be cured.

Best wishes.

I really should have mentioned that most people eventually end up on the right combination of drugs that do a good job of controlling their symptoms.

I've had RSD for 10 years.... dealt with grief, anger, resentment, denial and just about everything. Got into therapy. Now... I'm in total acceptance of what RSD is and what it does to MY body. It took time. It took therapy. It took me being honest. Like Karen said.... this is it. So.... what's left to do but say... this is Me... and my rsd is part of what I am.. but it's not what I am. You'll have good days where you swear you never had a problem and you'll have days where you are literally gonna loose your mind because the pain and the skin sensitive is just out of the world that day despite taking your medications. It's just part of RSD life.

I hope things get better for you, seriously. And if you ever get frustrated, confused, or angery... VENT BABY VENT! It's the best way to deal with it.

Blessings
Jodi