Hi all,
I really don't want to sound negative because that's not me all
I have RSD. I also have dysautonomia and POTS. Some days I cannot get out of bed and on the days I can I try and make every second count
I could sit there thinking 'thats my life over' but I don't. I am studying a degree and I want to have a career helping people even if its on a part time basis.... ie I want to contribute back to society
A long time ago I sat researching every tablet, treatment, therapy and research document I could find. Mostly it scared the hell out of me and the medications did nothing for the pain and made me unable to function as a person. Nerve blocks caused spread, pumps and SCS were ruled out as trials failed to achieve good results... in short nothing worked
Our NHS system is very different in that even if something is listed on NICE it doesnt automatically mean we have a right to try it.... well not in my experience
I was taken off the only thing that helps slightly (ketamine) and placed on codeine which as an opiate affects my heart and is not advised for use in POTS patients. I have a heart rate that never falls below 100 and a BP which can swing from 220/170 to 50/40 in minutes and does so throughout the day... and no one knows why
I have to wait a year for a follow up appointment to even discuss how bad I feel, I have just been told that my BP is so unstable it may affect my ability to carry a child. I have Ehlers Danlos which makes carry a child to full term more unlikely too and I have also been advised that overall the problems I have neurologically which affect other systems may also affect how drugs are taken up and how effective they may be
Now thats not to say any of you out there are the same or that anything I have tried will not work for you. We are all different. We are all fighting the same monster but in different ways using different methods and under different guidelines
For me the worst times I had were when people were using me as a guinea pig trying everything possible. I was full of hope, then I had the hope dashed over and over again and I got worse not better even losing the ability to walk.
The best advice I ever had was that if something isn't worth the side effects then don't go there. If you have less pain but are unable to function then is that the right thing - better to have manageable pain and still be you than none and be a shell.
I am really grateful that for some of you, you find something that works. For me the best thing is to distract away and enjoy the times I feel like I can do something
I recently got in touch with my old PM Consultant at the childrens hospital and he explained that medications can only go part way for those they are useful to and that mindset is just as important.
He also said that for those of us who have this monster long term it is more likely that other systems other than the pain mechanism will become affected
I am totally open to trying something new if there is a possibility that it may work but just wanted to point out that no two people are the same and that it can sometimes be counterproductive to look at someone else and think 'thats the answer' for me when you may not know the whole picture
Sorry if this sounds rather negative but I wanted to point out that for some of use it is a question of balance between what may work for one thing making something worse and not being afraid to try something and admit that it makes us worse or to take a balance approach to looking at options and deciding if the benefits outweigh the risks involved
Here in the UK things are very much different to elsewhere and even within the UK it all depends on where you live, who you see and what they believe to be appropriate. Don't ever be afraid to challenge beliefs and don't ever discount the benefits that working with RSD has over trying to fight against it
Alison

New meds and treatment are always being developed.

Did you ever see about getting access to HBOT?

I agree we must all be very careful about the true cost to us of a potential treatment. If something makes the situation worse or you just have a bad feeling about it by all means stop no matter if a practitioner or another patient says a treatment may be wonderful. It may not be for you. I think for us there are increased chances of risk from systems and limbs that are over stressed and may not react as expected. Hence my laser therapy disaster.

In the end we must make choices that minimize harm, that we can live with and that honor our own wisdom. I think sometimes in order to do this it is necessary to pull back and really look hard at something, difficult when one wants to get out of pain, but it's imperative we listen to ourselves.

Sending Healing Love,