Hi Az-Di,
It was such a buzz to get your lovely reply,
I am here for you if you need my support,too.
I hear your concerns re if you need sugury.like you i carry that worry too,but i coap on a daily basis by doing my garden and taking a day at a time.
If i cant garden i go for a walk in the fresh air.When its really bad i dont want to do anything,which is v bad mentally.,my husband is great he says come on lets do something nice.its usually a great effort,but if i get out the house for a while it usually lifts my mood,as does excersise.
Ive joined the village art groupe,and find getting absorbed in that helps as well.
Are you able to use a paintbrush?
I will let you know how things progress with my dilema!
Big hug
Flora99
X

Sweetheart if I was there I would hug you. We can't make the decision to have or not any procedures. We can suggest getting the info and giving it to your drs. If they decide not to read it or that its all in your head then find another dr. There are good ones out there. I didnt find any till this year. If the meds are messing you up then tell them. Talk to them about alternative meds that are proven to work. Rsd effects us all differently. Also be an active participant in your care. Do the research and discuss it with your drs. I can't take antinflamatories either. They tear up my stomach. Also look at possibly changing your diet a little to relieve your stomach. Im not saying go on a bland diet either. There are diets out there to help some with digestive problems. Im not a dr just another person with Rsd. I am doing the research now. I do know they suggest total sedation, and nerve blocks before and after a procedure. I didn't know that when I had my 3 knee surgeries, or that I had rsd. I am going to educate my drs from now on.

I am in Scotland and have had CRPS for many years.

I don't do emotional so I am just going to post factual information about what goes on in the UK for you to use as you see fit. I have seen a lot of doctors in various fields all over the UK in relation to my CRPS and I will share the experience that I have had. It is also the experience that other people I have spoken to with the condition have had here in Scotland and the UK. I went outside the UK to see a true expert and the difference was incredible. We are probably at least 15 years behind some other countries in terms of our knowledge and treatment. There are other places where the treatment is truly cutting edge - globally, the Netherlands is currently where the forefront of the knowledge and research is concentrated.

I think one thing that is different for the US based posters here it that they can shop around until they find a doctor they are happy with and can go to multiple medical disciplines as they wish. That is not how the NHS system works. For our US friends, in Scotland, you have to convince your GP to make a referral for you to a specialist and they will typically only do this one specialty at a time. They hold the budget and the decision about what is needed, not the patient or an insurer. There are also lots of rules and guidelines that have to follow in referring a patient. You can seek a second opinion if you are unhappy but this is not an easy or rapid process. It also risks having you labelled in your medical file as having a psychological problem of being a hypochondriac. I'm not making a judgement -just saying this is the harsh reality. Private medical policies in the UK don't cover chronic conditions like CRPS after the acute stages so if you want to seek private medical care you will have to pay as you go. There is nobody working privately in Scotland worth going to see either for your issue. They will be nicer to you and you will get a more sympathetic ear because you are paying, but they can't influence what the NHS then do when you have to undergo the ultimate procedure.

You will not find a true CRPS expert in Scotland in any field of medicine. You will find several consultants who will tell you they know about it or have treated it but there are no experts. This is the same whether you go via the NHS or privately. There are a few in England who have a decent level of expertise but for real experts you need to go outside the UK. That is what I ended up doing a few years ago. There are no true experts at the so-called UK Centre of Excellence in Bath either - I've been referred and assessed there too. They have repeatedly lost the more experienced consultants they had (and that level of experience is all relative). The focus there is pain management rather than any of the other aspects of wider CRPS care. They typically will advise not having any invasive procedures unless it is an emergency but don't have detailed protocols to provide and, anyway, wouldn't be able to give any specific advice unless you were their patient.

In Scotland, there is no database of NHS consultants which GPs or the public can access to try and find someone with suitable skills and experience. This is different in England where hospitals almost all have clinical biographies on their consultants and various departments - this is because the internal marketplace and options to patient choices are very different in each country. Your GP has no more ability to find out what consultants there are in Scotland and what they know than you do. This is why GPs here will normally just keep referring to the consultants they already happen to know at the nearest hospital. Its incredible but that is how it is. The private hospitals all have variable information about the individual consultants who work from their premises.

The NHS view is that the system in the USA has the balance of testing and medical intervention wildly wrong. Again, not judging, just explaining. You are likely to be tolerated if you take RSDSA guidance to a consultant but they won't agree to follow it. It doesn't match their own protocols and budget allowances and they will think it is pointless overkill which is designed to fit a system where doctors make a living by doing fear more testing, treating and medicating than is needed. This is partly the ethos of the medical profession in the UK, partly budget constraint and partly substantial ignorance of the condition. You have already alluded to the fact that your doctors think you are over-reacting and you can expect more of this reaction if you produce the guidance developed by RSDSA for the system in the USA.

The one document that you can expect your GP and other consultants to take more notice of is freely available to download from the Royal College of Physicians website. It is called "Complex regional pain syndrome in adults - UK guidelines for diagnosis, referral and management in primary and secondary care". It represents the only "official" UK guidelines for the treatment of CRPS which was put together by a multi-disciplinary team based on the then available evidence base. I don't think it is a particularly great or impressive document. It plays very safe and is very much in line with the typical NHS ethos of minimal intervention and treatment. It fails patients, especially those of us with very complex and rare presentations because it fails to acknowledge these and seems to regard physiotherapy as the fix for everything and everyone (in spite of the minimal evidence base provided by double blind, placebo controlled clinical trials for physiotherapy) I don't think you will find much in there to assist in your current attempt to find prophylaxis treatments to minimise surgical or pre-surgical testing risk. However, you can't have your credibility questioned by your doctors if you take that document with you or refer to the advice given in there.

I'm sorry if this sounds negative, as I said, I don't do emotional support, just factual information which is one aspect of what you are asking for. I have also already been through all of the questions you are asking within the particular context of the unique Scottish healthcare system and I have done years worth of research into UK consultants' expertise from all the available sources and medical journals as well as taking the initiative at my own cost to go abroad to a leading global expert in the field of treating and researching CRPS.

If it's any consolation, although my CRPS symptoms spread to affect the whole of my body, I have never had any adverse effects from having blood taken with normal needles (and I've had a LOT of that done). When I have had extensive medical testing for other medical issues, my consultants have been prepared and able to find alternatives which carried no risk of damage which could have caused trauma or subsequent surgical intervention. I however, have never been fortunate enough to have had any kind of remission, only ever worsening of my symptoms unrelated to any medical procedures so I have less to lose than you do.

Don't apologise Neurochic - that is one of the most useful posts I've read for being a CRPS patient in the UK. The system is complex and does, as you say, completely fail anyone who fails to improve with the initial physio and then stays 'improved'. If you are rare (sadly, I'm not sure we are really that rare) and have spread, worsening pain and symptoms, and start needing more complex care, the UK NHS really doesn't know what to do with you. So you get sidelined and 'managed'....

Some consultants are better than others, and if you find a (hopefully) better one, you can go to see them privately for an opinion and then get them to write that opinion for your file. You can then ask them to treat you through the NHS system, but they don't have to - so it depends on them entirely.

There might be other consultants within your local NHS trust who might be a better fit for you, but equally they might not. My first pain doc was not good for me at all, and a good physio I saw who really did know CRPS (and had a chronic condition herself) recommended a different one who is much better. Quite often your GP will just send you to the one he either has more experience with, or is at the top of the page he brings up on his computer

The sad truth is that being proactive is a great thing, but it can only get you so far, then the rest is up to the doctors themselves, and if they don't want to play ball they don't have to, because the system of NHS trusts actually encourages them to take the easiest, least complex, cheapest treatment route going.....it takes a lot for them to think outside the box for one patient.

Good luck. Don't blame yourself if you have fought as hard as you reasonably can and they still won't listen. If you are able to, consider going private to someone in England with a good reputation, just to get their opinion. About £150 max I think. Not cheap.

I completely agree about Bath. I've not been there myself - I was threatened with it, but did a lot of reading and realised that it really is just management - not treatment. It's physio, hydro and psychiatric groups. I'm not saying they aren't useful, but when you get to the state where your consultant will consider spending that kind of cash on your behalf to try and get you to be less demanding on the system I think those things are only partially helpful. I could have done with it when I was first diagnosed, not 2 years in... At more advanced stages, you want a more in-depth treatment, or real pain management that stops some of the pain. Hollow laugh.

Thanks Neurochic.

Bram.

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.

Sounds so familiar!
Big Hug
Flora

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 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

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!

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.