Well thats the road we are going here in the USA. Drs dont care it seems anymore. To feww drs and too many patients. Insurance wants to keep all the money they can and not fork it over for treatments. It just sucks we are treated this way when all we want is help.

Don't worry, I'm not seeking any treatment or looking for any further medical input as I am in the fortunate position of having accepted that I will have to simply cope with the with day to day management of my pain and other symptoms. There is nothing else that the medical profession in the UK can offer me to help manage my CRPS.

I have literally read through the biography of every single private consultant who could have any relevance to CRPS treatment in both Scotland and England regardless of specialty. I have been through the available information about every single Scottish or English NHS consultant too. For the whole of the UK, I know which ones have any real expertise and you can count them on one hand. Its not a matter of finding a different one in my Trust or health board area, I have actually worked systematically through all of the CRPS expertise that exists in the whole of the UK! That's why I went to the Netherlands a few years ago.

I am in the fortunate position that I accepted very early on that there is only management with this condition, not treatment. I have already tried every relevant intervention or "treatment" option available to me in the UK so in the first few years, I managed to get to the position of knowing it was as managed as it was possible to be. I fall into a particularly rare end of the symptom profile which makes my prognosis especially bleak. It has been far more positive for me to have tried everything that might work and then simply to have moved on with accepting that I will be in constant pain and will have to live with significant disability.

Fortunately, there is no point in me remaining under the "care" of any consultants in any discipline because they have nothing more to offer. It is pointless turning up once a year for an appointment for me to give the consultant a CPD update on the latest research into CRPS! I regularly go to the medical conferences where the latest information and research on CRPS is presented to the same consultants as potentially would be treating me! My GP is great at organising any new referrals I need and is happy to prescribe most things I have wanted to try. I have a cocktail of medication that takes the edge off my pain levels but it is present in both lower legs, both hands, arms and shoulders and also my back and down through both buttocks. My movement disorders have not responded to any of the limited medication options there are.

I think the pain management programme offered in Bath is probably very helpful for many CRPS patients who are still at the stage of struggling with their pain management or are at an earlier stage in their acceptance process than I am. The particular interventions offered there were hopeless for me because the severity of my movement disorders means I am unable to do any of the therapies they offer.

It is actually a relief to now largely bypass the medical profession and just move on with my limited life, coping by myself.

Hi just to update you.Thanks to you surgestion i had a reply from RsD hope in America
My letter has been passed on to Keith and his mum sent 2emails
.Turns out their family is from Aberdeen origonally!
Im now waiting to get a reply from the man.
Thanks again for that!
Flora
X

Hi Neurochic,
I just want to thank you again for all the fantastic infomation and overview you shared with me.
It must have taken a lot of blood sweat and tears to find all that stuff out!
Im extreamly grateful.
I am greatly motivated by your responce!
Flora
X

Sounds so familiar!
Big Hug
Flora

Hi,, and welcome to Neuro Talk. RSD does need to be considered when doing any proceedure. The doctor doing the endoscopy should be working along side of the doctor who is helping with the RSD, so you don't have a flair up.
I wonder if there is another form of "sleep" medication you could be given such as "The old fashioned gas"
As to the Gerds. this is where I do sympathize. I had this many years and let it go as I had no insurance. It did go into Barretts esophagus. I take a PPI called
dexilant, which to my knowledge is one of the best. My Barretts has gotten a bit better over the last two years. I do have DNA changes, so I worry a bit like you do. Do not fail to be followed up for your Gerds like I did. Bring your concerns and issues over the RSD to the doctors attention and start asking questions. Get the physicians to work together. Let me know what you decide to do. I am in your corner. ginnie

I'm so happy for you that you found us here and especially that you have friends on here who are in the U.K.
Not sure if you know, there is a "Thanks" button at the bottom of another members post so if you're short on time they know you read the reply.

Unfortunately, I use that more than I should because my RSD hand prevents me from typing lengthy posts. But I still love everyone on here!

Flora, I too had huge reflux problems. Honestly when I quit taking the anti inflammatory meds, that helped immensely. Because when my RSD started it started in my stomach as well and within a short period of time I was diabetic, from being 99.99% sedentary. I had had a number of tests done by my gastroenterologist early on , but in was about 3 years in, after my RSD had spread to my upper left. I would not allow the I've in my arms because of the RSD and the Dr. Refused to put it in my feet because of the diabetics. He asked me how I felt about not using the anesthesia and walked me through the process. He planned on doing a biopsy of the stomach lining but explained that there would be no pain felt because of the location.

So I did it. I seriously am a ganger. I will throw up if I even attempt to swallow bitter things or liquid medicine, smell bad stuff, etc. it was a little hard at first, but mind over matter, I kept calm and tried to help swallow the tube along. I also got to watch the process, see the inside of my stomach, etc. as the doctor did the endoscopy and the biopsy. The scope showed visible inflammation but the biopsy showed nothing at all. 4 years later I did another endoscopy again, with no anesthesia. Dr. wanted to make sure that he hadn't missed anything at the first scope, that might take a long time to manifest. Nothing discernible, only pain. Knowing that didn't help the pain, but it sure told us nothing else was going on.

So it is entirely possible to do the scope with no anesthesia, ask your doctor about it. It does feel like you are beginning to choke, for a split second, but your air way is in no way blocked, it's just that you feel the tube in your throat. Just relax and focus and if the dr. Let's you watch the screen with him, that is a good distraction. How many people get to see that? AND!!! The really big bonus for skipping the anesthesia is not having the anesthesia in your system, which I HATE and you get to jump off the table and leave when the scope is done, instead of laying in a recovery room for two hours and having to feel the effects of those nasty drugs in your body.

I would recommend to everyone, RSD or no RSD, diabetes, what ever, skip the anesthesia. Feels odd for those few seconds but after that it's easy and it's a gas leaving and not having to join the row of anesthesia Leiden patients required to stay and wait to be released when you can walk again, etc. You can do it!!! I will certainly cheer you on!!!
Hugs, Sylvia

Hi Flora,

I wish you luck in finding a risk/reward balance with the tests required for another condition potentially causing havoc with your current control of RSD.

I am lucky that I have not had to deal with the spread of my RSD from my original Thoracic Outlet Syndrome site affecting my neck/back and L arm. My neuro says that RSD spread is usually much less of an issue with TOS to RSD patients like myself. I've had countless "itises", probably related to my fibromyalgia, that have required multiple steroid injections, but haven't turned into RSD....bilat hip bursitis, bilat tennis elbow tendonitis, bilat knee tendonitis, new R heel plantar fasciitis. I've had multiple blood draws and donate blood regularly without a problem (yet!)

I can't imagine the stress this worry is putting on you.....and just wanted to wish you the best as you try to find the best answer for your situation. It absolutely stinks that what is already a difficult situation is complicated by the scarcity/nonexistence of quality RSD care in your part of the world. Pathetic in this day and age.

Adding a little "shout out" to Neurochic......Great to see you posting again !

HI again Flora,
I'm just adding a little more of my "2 cents worth". I'm in the U.S. so I don't know anything about U.K. medical systems so I'm no help there.
But, my Pain Mgt. Dr. has told me that if I go for any invasive surgery she would recommend giving me a nerve block immediately before and after surgery to try to prevent spreading and/or flare up.
I get those anyway about every 2 weeks anyway for the pain management and so far it's working pretty well but that's just me.