Oops! Also ... WHY is my RSD spreading SO FAST!?!
 

It's also only in Nov. 2012 that my symptoms began - what happened that it went 'nuts' so fast? Did I do or not do something that made it so aggressive? I thought I had time ... to adjust, sort out my living/working issues. I'm a grown woman and yet I'm scared to death - I feel like I've lost "me" ...

Hi Mel...

Mine began in my left knee in Aug 2011, now spread to my whole leg, both feet, left arm, spreading across my back....it's scary when it feels like its trying to take over :confused: I've no idea why it does what it does, or why some folk keep it isolated to one area and it spreads in others. Don't think the docs do either. It is shocking how fast your life changes, and I too feel that the me I thought I was has been lost. It's frightening all round, the pain and limitations, the fear of the future...

You will get some kind of handle on it and learn to cope, but I understand that six months of that much spread must feel insane. Don't try and reason too much, I doubt you've done anything to make it spread, I think you've just been incredibly unlucky. And there's always hope that it will stop and then go into remission.

Good luck and I hope things improve soon and the spread stops. You do end up thinking every new pain is the CRPS spreading, I hit my finger today and it hurt like mad, then went very red and burning and swollen and I immediately thought 'oh no, that'll be the next place then'. You can drive yourself mad because CRPS doesn't obey any laws or behave in one set way, you just manage it as best you can and try to keep positive.

Why us hey?! :D

Bram.

Thank you Bram! Drs going right to ketamine ...
 

Thank you for replying Bram - I've been looking for a support community ... There was no reply to my "hello! New to neuro-new RSD"; then no reply to my query about ketamine - I was thinking I hadn't found the right place for any community support, which makes it worse in a way. You think you're really alone. Do you know anything about the ketamine infusions Bram? They're going to do a 3 day course. Mel

Hi Mel,

It can sometimes take a while to get into a forum, but most people are really friendly and helpful so don't worry :) It's a weekend, and it seems to be quieter then!

I've read a bit about ketamine infusions but not had one, they're not easy to come by in the UK I think. I have seen a couple of videos about them on YouTube, so try doing a search on there. There is information on websites too but read as much as you can and try to come up with a balanced view, you do tend to see more negative comments on forums as most people are asking on there because they have a problem.

I'll be interested to hear how you get on with it. I'd love to try something new, but my docs are very conservative and unless it's sanctioned by the nhs they don't want to know...if it costs they aren't keen :rolleyes:

Also try using the 'search' bar on the top blue menu bar, and searching for ketamine - there's bound to be a thread on it as I know it is very well regarded by some.

Have a good weekend :)

Bram.

Thanks again Bram!
 

You have a good weekend as well - take care & I'll keep you posted on how I manage with the ketamine. Best regards! Eileen :Thank you:

Sometimes the spread is caused by the ignorant people treating you. Ice, Hot and Cold water contrast therapy aggresive physio are the 3 worst treatments. The slightest trauma can cause it to spread, my first was the use of a sensitivty pin 4 ins outside what was thought to be the affected area caused it to spread from below wrist upto elbow

Hi Mel. I was out today and didn't see your post until now (and I'm leaving and going out of town in a few hours).

The people on here are really nice and full of wonderful information and tips. I don't know that I would have been able to make it through everything I went through without their help and support.

The thing about RSD is that it really does affect us all differently. Some people never experience spread, some do over time, some do really fast...we're all different like that, The great thing about this forum is that no matter what you are experiencing, someone has been there and at the very least can share their experience with you.

I experienced spread after getting a lumbar sympathetic block for treatment. This caused my RSD to spread from my ankle to my upper body. When you think you are going crazy from all the stuff your doctors tell you...people here can let you know that you are NOT in fact crazy and that what you are experiencing is "normal" by RSD standards.

I agree with Kev that there can be many reasons for spread including improper treatment. I personally believe that my condition became worse and did not respond to some treatments because of the fact that the doctors had me immobilizing and using ice for MONTHS before I finally got to a doctor who knew about RSD and diagnosed me with it (I had some very classic symptoms that all the other doctors ignored no matter how many times I brought them up). Frustrating...but what can you do? You EXPECT doctors to know what they are talking about and you expect their advice to help you...not hurt you.

Other causes for spread can be trauma...no matter how small. This can include things like bumping into stuff, getting blood drawn, using crutches, having an IV put in...anything at all really no matter how minor. I know that sucks but the fact is that ANY kind of trauma can cause RSD and once you have it ANY trauma CAN cause spread. That doesn't mean they will...but they can.

And then there's the good old truth that RSD simply can spread because it does. I know it makes us feel better sometimes to know the cause and effect...puts our mind at ease that there is a REASON for why things are the way they are. But the fact of the matter is that you may never know.

The best thing really is to try and stop worrying about the WHY and try to start focusing on the solutions. No...there is no cure (yet...I always remind myself to add the YET)...but there are treatments and things we can do to make our lives better. No quick fix...but after many months and months of treatment I went from being stuck in a wheelchair not able to stand or walk at all (this was after my spread) I was able to not only get back on my feet but get back to working full time and take my life back. It's not the same and the pain is always there...but I have learned to cope with it and have learned to adjust my life and work around my limitations. There is hope.

With proper treatment there are also people who have achieved remission. I know things seem hopeless right now. We've all been there....but things can and will get better. Use the resources available to you to learn as much as you can about various treatments, to find the right doctors, how to make adjustments to many common day tasks so they are easier for you, etc.

For me...after the spread of my RSD resulting from the block...I decided to avoid ALL invasive procedures...including ketamine. It just wasn't worth the risk for me. I definitely didn't want an SCS...FAR too much risk of making things worse with very little evidence of having long term good results. After getting serotonin syndrome from the meds my docs had me on...I dropped those too and am living without them except for Lidoderm Patches and Clonidine Patches. I was able to achieve everything I did primarily through extensive physical therapy and use of tDCS. Not to mention ALL of the many little things I learned from people on here to help relieve the pain and adjust to my limitations. Things like changing my diet, hot baths with Epsom salts, using gloves to get things out of the fridge, and a host of other little things that help me live my life day to day.

All that said...I know my path is not the common one and my choices about treatments that are right for me are my own. EVERYONE needs to make their own choices about treatment and what is right for them. Get as much information as you can about any treatment you are considering so you can make a fully informed decision about whether it is right for you or not. Doctors won't always give you the full picture, but people on here can share personal experiences and also what they may have found in their own research about various procedures so you can become fully informed about the risks and benefits of various treatments. Ketamine and SCS are not for me...but there are people on here who have gotten significant relief from these treatments and would not go back and change a thing even if they could. There are others with bad experiences. Gather all the information and make the decision that you are most happy with regarding your treatment options. Hopefully you are able to find a doctor who you can work with who will be able to help you with the things you need.

Take care and ask lots of questions. Don't be surprised if it take a few hours or even a couple of days to get a response on here. Unfortunately for many of us, typing on a computer can be very difficult even on good days. We may not be on 24/7 and quite frankly many of us keep very odd hours because of difficulty sleeping with RSD and the pain. We will help when we can and the information is priceless. Even just a chance to vent your frustrations and get out the feelings amongst people who totally understand can be great therapy. I had some really awful times over the past few years and as I said before...I don't know what I would have done without the people on this site to help me through, support me, and offer helpful advice. I may not agree with everyone on here or share the same opinions...but I appreciate everything they have to offer and their advice, opinions, and stories have helped guide me to what are the right decisions for me.

Good luck...I hope you are able to find relief soon.