Hi im flora99 --a new member.
I have had rsd since autumn 2002.
I need to talk with other members to get their feedback .
Its pretty lonely here on the west coast of scotland .no one here has heard of rsd
That included most of the doctors who have never seen a case in our area.!
Its taken me 10 years to get to a good place.i count myself as one of the lucky ones.i got diagnosed within 5 months of developing rsd in my right arm From tennis elbow and tendonitous.
After 2nerve blocks the pain dropped dramatically and i got almost full range of movement back after physio.i managed to work through my depression without any drug therapy once the pain levels had dropped.
2yrs later i had a gyneacological op and had a canula put in my good arm.,which became swollen at the elbow and v painfull.The doctors would not give me another nerve block as said it was too dangerous.i narrowly missed being paralised again as i could not take antinflamitories as they had ulcerated my stomach.This flare up took months to subside.,i went to hell and back.

In 2005 i needed an endoscopy with a sedation and would not let them put a canula in my arms ,so they put one in my foot which was ok with no flare up of RSD but i had no symptoms in my feet then,now i do (painfully cold feet and knees )
I urgently need another endoscopy to investigate my gastric problems and throat since i have had GORD for over 10 years now and the PPI is not controlling my gastric reflux etc.i cant face the proceedure and biopsey / and possible polypectomy without a sedation
my doc wants to also take blood as i have not had blood taken since ive had rsd.
because i feared a flareup.
Has anyone out there had a flareup after blood was taken?
Last time i had my endoscopy i was not taking amitripilyn will that protect me from a flare up?,i dont know if the low dose im on now will protect me?
What do you think?
im on a low dose as im trying to get as low as possible as its eroding my stomach and blurring my vision etc!!so if i need to up it again it will be hell.
I dont know what to do wether i should have the endoscopy and sedation.
If they find cancer i know my body would not tolerate chemo or radio therapy,
So could have to face cancer and an RSD flareup.
On a positive note,if they find early barretts oesophagus they can prevent it developing if caught early.
What should i do??
Im in remission with my RSD most of the time and have a good quality of life.
I fear the dragon on my shoulder will bite me again if let them do the tests.
The pressure is unbearable.
Ive had councelling and my councellor says i need more information before i decide.its so hard to get information.The doctors all think im over reacting
My fears are real.i fear the RSD as much as the possibility of cancer.
What should i do?
Please if you have any relavent info write to me .
Big gentle hug to all of you out there wrestling with the firey dragon RSD.
Thanks for reading my first post.
Flora99

Welcome Flora,
I'm sorry you have rsd and all of these other problems.
I would get more drs to give you pros and cons. A neurologist may be able to help you with that.
Also rsdhope.org may have a group that can help.
As for flare ups after injections, I has a slight burning flare up in my neck, after a nerveblock once, but it didn't last for more than a day.
I don't let anyone touch my rsd arm though. No injections or even bloodpressure. Well, good luck with your search for the correct answer and I hope you find one soon and feel better.

Welcome Flora,
Sorry for the circumstances that bring you here. This is such a wonderful group of people. We're the only ones who really understand this monster. However, all we can is offer moral support and advice to one another.

Not only was my broken wrist surgery screwed up I got RSD/CRPS as well in my hand and arm. They refuse to do further corrective surgery. I don't know what I'd do if i needed surgery elsewhere. My P.M. Dr. said she would probably give nerve blocks before and after surgery and hope for the best. I also take Vitamin c 500-100 mg. to help prevent spread. My RSD beast is kept pretty with nerve blocks for right now.

Tough decision for you I know. When I went for colonoscopy I was worried if they had to cut out any possible pollips. That Dr. told bluntly that the RSD probably won't directly kill me even if I wished it would, but colon cancer would.
Thankfully no cutting was necessary.

Please keep us updated.

Hi Flora welcome to the site, but sorry you have so much to deal with. It's hard to know which way to turn with so much going on and a million questions and concerns....

I have CRPS in my whole left side, and my spread (from my left knee after an arthroscopy) has happened with no assistance at all. Equally I know of people who have had spread following other issues/injuries.....we are all different and our CRPS acts and reacts differently. You have to bear that in mind when reading our opinions!!

I feel we have a few parallels - and not just because we're both in the UK. I had stomach problems from anti-inflammatories (I also have coeliac disease), and had an endoscopy. The endoscopy was pre-CRPS, and I would be nervous about having one now as well. But I think it all depends on the risk to result ratio. With something as serious as cancer (a big fear for me due to family history, but I won't go into that here) I think you always want any reassurance going. I took amitriptyline and didn't get on with it, the side-effects wore me down and I didn't get much effect from it after a while. I'm not sure how it could protect you TBH. I had bad stomach problems again with gabapentin, and at the moment take low dose Lyrica, which does more than anything else has so far! Sounds like you could maybe do with discussing other med possibilities with your docs, and maybe seeing a physiatrist (who considers your whole body and not just one bit).

Your own docs might not be aware of every bit of info about CRPS - goodness knows there enough of them who don't know a thing - so its a good idea to make sure they have as much guidance as possible. Might be worth printing off the relevant sheets on surgery/hospital protocol from RSDSA or another good site and giving them to your docs, and discussing how they plan to approach the risks. Then you can decide for yourself how best to do things. Chances are that if you feel reassured that they understand your CRPS, are aware of the risks and doing everything they can to minimise them, then you will want to go ahead with the procedure. My own feeling is that I would worry about what was going on in my body, and the anxiety would affect my symptoms and quality of life anyway. If it could be done reasonably safely, I think I would want to know. But that's me

Only you can decide on something so important, but I know it's hard to even get up some days, let alone argue, discuss and make decisions... So I admire your desire to learn as much as you can despite all of this.

Really really good luck with everything. I hope your doctors do the right thing by you and things go well, no matter what you decide.

Bram.

Hi ,what a wonderful feeling to hear from you !!
Just got up to find your messages.
Cant tell you what a relief it is just to hear from other people with RSD.
I felt so alone.!
Just to hear other peoples experiences and opinions helps me a lot.
I know at the end of the day its got to be my desicion and mine alone if i have invasive proceedures.
What scates the hell out of me is that the docs dont seem to have a statagy or game plan for dealing with the fallout of these proceedures.,or minimising the calateral damage to my RSD
They just want to do whats best protocol for their duty of care,which just keeps me alive,not whats best for my geneal wellbeing.That leaves me to find a way through by myself!!
Was a useful surgestion to try a neurologist.My only fear with that is that i look so well now,that they would think im over reacting .(we all know thats deciving )
my doc has to send a letter to get a referal.Last time she did that she wouldnt show me all the letter,and she may have influenced the consultant who then would not make unbiast decisions or make decisions with me or keep me in the loop!
I will try the other website.Thankyou for your suggestion .Very helpful!

I so want to keep this good place im in,as im making a new garden,which i hope to open in aid of RSD to raise awareness and the local hospice,in Oban.
Gardening is a great therapy .if i cant garden i get v depressed .it was my career but i had to give it up professionally when i got RSD.
Recently i stated exchanging 2hours gardening for a crainial sacral treatment.
It is a wonderful feeling to be gardening for someone again.
I recommend the crainial sacral treatment to people with RSD if its well controlled.
My energy levels are much higher a day or so after a treatment ,which lasts for days afterwards ,and it helps sooth the nervous system and inflamation/pain.I wouldnt recommend it if you have a bad episode ,but if you are in a good place most of the time like me its a good treatment to relax you and the beast.Have had less flare ups since having the cranial sacral treatments, on a regular 3 weekly basis.
Re RSD wont kill me but cancer would,i know that too well,i think if i found i had both cancer and RSD i wouldnt want to be alive if my quality of life was poor.!
You are so right --its a v tough decision.Thankyou for being there XX
Big gentle hugs
Heartfelt Thanks Flora99

[Hi Brambledog,
Thankyou for your very helpful reply,
My heart goes out to you and all other members,who face the challenges we do on a daily basis.
You raise some very valid points.
How interesting that you have some things in common with me.
Do you have any idea where i might find the protocols to guide my doctors.
You are so right if i had someone to asess the risk and reassure me then i would want to go ahead with investigations.
Ive been doing what you surgest but with no result so far!
I have looked at both Bath and Edinbough centres for research,but so far not got much help from them.
Any surgestions where i might look?
NHS is not much help,ive looked on their websites and cant find anything of use.
Do you know of any neurolagist who is good that you may have used who i could see?
Or does anyone out there in the UK know any neurolagist who could advise me of the level of risk involved in having a sedation in my foot and biopsey/endoscopy?Who could enpower me to make my decision.
Has anyone found a good consultant to talk to in the UK prefably in Scotland.

Many heartfelt thanks to everyone
I cant tell you how wonderful it is to have emotional support!
Gentle Hug to you all
Flora99
X



QUOTE=Brambledog;1019438]Hi Flora welcome to the site, but sorry you have so much to deal with. It's hard to know which way to turn with so much going on and a million questions and concerns....

I have CRPS in my whole left side, and my spread (from my left knee after an arthroscopy) has happened with no assistance at all. Equally I know of people who have had spread following other issues/injuries.....we are all different and our CRPS acts and reacts differently. You have to bear that in mind when reading our opinions!!

I feel we have a few parallels - and not just because we're both in the UK. I had stomach problems from anti-inflammatories (I also have coeliac disease), and had an endoscopy. The endoscopy was pre-CRPS, and I would be nervous about having one now as well. But I think it all depends on the risk to result ratio. With something as serious as cancer (a big fear for me due to family history, but I won't go into that here) I think you always want any reassurance going. I took amitriptyline and didn't get on with it, the side-effects wore me down and I didn't get much effect from it after a while. I'm not sure how it could protect you TBH. I had bad stomach problems again with gabapentin, and at the moment take low dose Lyrica, which does more than anything else has so far! Sounds like you could maybe do with discussing other med possibilities with your docs, and maybe seeing a physiatrist (who considers your whole body and not just one bit).

Your own docs might not be aware of every bit of info about CRPS - goodness knows there enough of them who don't know a thing - so its a good idea to make sure they have as much guidance as possible. Might be worth printing off the relevant sheets on surgery/hospital protocol from RSDSA or another good site and giving them to your docs, and discussing how they plan to approach the risks. Then you can decide for yourself how best to do things. Chances are that if you feel reassured that they understand your CRPS, are aware of the risks and doing everything they can to minimise them, then you will want to go ahead with the procedure. My own feeling is that I would worry about what was going on in my body, and the anxiety would affect my symptoms and quality of life anyway. If it could be done reasonably safely, I think I would want to know. But that's me

Only you can decide on something so important, but I know it's hard to even get up some days, let alone argue, discuss and make decisions... So I admire your desire to learn as much as you can despite all of this.

Really really good luck with everything. I hope your doctors do the right thing by you and things go well, no matter what you decide.

Bram.[/QUOTE]

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.