I know you've had issues with the doctors in the past...particularly not listening to you and you not even getting to go over everything you want to talk about. I had a couple of similar experiences and a couple of things helped.

1. I came into each and every appointment with 3 sheets of paper. One was a timeline of when everything started, key dates like any treatments, meds tried, docs seen, etc. This was mostly for my own information and to remind me of everything going on because it's a lot. The second was a list of symptoms, very detailed. I would pull this out every appointment and when the nurse or doctor asked me what was going on I would go through the entire list of symptoms...every time. It's hard to remember when you have SO much going on all the different things you are going through. And the third thing was a list of questions and things I wanted to go over with the doctor. I would not let them leave until we had gone through each and every thing on my list...otherwise what am I paying for exactly?

2. If you can bring someone with you that seems to help. Educate the person you are bringing on what your list of questions is and what things you want to go over. If they can have a copy of it or a notepad to take notes then that can help. That will make two of you to make sure ALL your questions and concerns get answered. It needs to be someone who will speak up for you and call the doctor out if they try to leave. I am amazed at how many doctors try to sneak out, saying they'll be right back, and then the nurse comes in to get you on your way. I've told the nurse before that we were not done speaking to the doctor and would not leave until he came back and finished the conversation. With someone else with me this has never failed. On my own...they can sort of be bullies about it. One of the best things about my current doctor is that she really does take all the time with you that you need without any of the "tricks"...genuinely cares. Of course that means sometimes I have to wait an hour after my appointment time to actually SEE her...but I want her to take that time with me so I wouldn't deny it to any other patient.

3. Take notes while you talk or have the person you are with take notes on what the doctor says. They seem more likely to be helpful in these situations.

I really hope that you can get a referral. Sorry that I don't know more about the doctor in your part of the world who can help. From what Bram said...the Bath Pain Clinic doesn't sound like a good fit...but only you can really judge that for yourself. What you want is a doctor who specializes in and has treated a lot of CRPS/RSD patients. This could be a neurologist or a pain management doctor...the pain management doctor would be more likely to address your specific issues regarding PAIN and trying to get that to a manageable level. That doesn't mean that they will tell you what you want to hear regarding treatment...but you should never be with a doctor who feels all options have been exhausted.

Sometimes, often times, with RSD it's about finding the right combo of meds as much as anything else. This can be a VERY long process so I just don't understand why any doctor would give up on a patient. I'm sure it can be a frustrating process for them as much as for you when it takes a while to find the right combination of therapies (meds, physical therapy, therapy to help you cope, etc...whatever you need) to make your quality of life better.

That said...I know I have had to figure a lot of things out on my own and I take that responsibility very seriously. It's not all on my doctors...I have a series of things I do every day to help with my pain levels. Hot baths with Epsom salts, ultrasound heat therapy after the baths, heating pads, wearing gloves and scarves to avoid triggers like air movements and cold things, PT exercises to keep me moving even when I'm sitting, eating the right sorts of things and avoiding things that can be triggers, changing the way I do things to make them fit my limitations and not being stubborn about HOW things get done so long as they get done, using the walker, sitting when I need to, etc. It's a process and not a quick one. It took a long time for me to sort out all the intricacies of what my triggers are and what I can do to work around them...and I still have to make adjustments all the time. But those little things can make such a difference in my overall ability to make it through each and every day.

So...get the referral and work on getting better care. But don't stop there...there's so much YOU can do (and you probably already do a lot of it but keep working on it) to make your quality of life better. Just understanding your limitations and keeping an open mind can be such a big key in this process. Keeping a daily journal can help with this and can even sometimes help you see patterns is what is causing your pain that you might not notice otherwise.

Just an example (and I'm not saying it is right for everyone or that you should get one)of one of the big things that has helped me is getting a walker. You'd be amazed at how many things the walker helps with for me. It takes a lot of weight off my foot (initial site of RSD and worst)...which I find helps a lot. It keeps me steady and I feel safe because I'm not going to fall with it. I can walk normally (I have a 4-wheeled one) and that gives me a normal gait so I'm not messing up other things like my back or hips or anything. I ALWAYS have a seat with me so when I need to rest I can. It has a little bag under the seat to help me carry things without causing me any extra pain at all. I can kneel on it when I need to "stand in place to do things" like the dishes. Sometimes even if I stand and stop to talk to someone or to look at something I might put just my bad leg up with my good one down. Or I might just sit because that's what I need instead of standing. I don't tire as easily or as quickly when I use the walker so I can do more, go out more, and last a whole day on my feet instead of just 30 minutes or so without it. I've even scooted around on it a little while seated when it was particularly rough and I couldn't walk hardly at all (hasn't happened in a long time but it was an option). It keeps me mobile and makes my life easier. Is it the answer for everyone? No...I just use it as an example on how I have adapted and make things work without making it HARD on my RSD body.

I got my walker on the recommendation of my physical therapist but it was on ME to figure out how to make it fit into my life. I got it off amazon.com for just a little over $100 (got one that was made for shorter people with bigger wheels and would be easy to fold for getting in and out of the car). No one did this for me...it was on ME to make it work and I feel like I have squeezed every ounce of usefulness out of the thing to make my quality of life better.

While you wait for the doctors to get their act together see what you can do in the meantime on your own. If you can find a doctor who can work WITH you through this process, things will get a lot better. Take care and good luck. I wish you could get to see a new doctor ASAP but it sounds like you may have a wait ahead of you. Don't give up...things CAN get better.

Oh you two, what on Earth would I do without you? Getting a bit tearful here!

I think we'll put Bath on the backburner, it's probably the only place to get to see someone who has dealt with a decent number of CRPS patients, but I am hopeful about the other local pain clinic, if I come under their umbrella. I hope so. I have spoken to people who had the same issues with my current clinic who now have the SCS and haven't had a year long wait for the PMP either. Sounds like they listen more there.

Catra your advice on appointments is so good and I hope others take heed too. I really don't want to sound negative by saying sadly that's pretty much exactly what we did for this appointment, but he wouldn't hear or read the symptoms list and seemed to think it was funny I had prepared so much. The only thing that wasn't maybe as prepared as your suggestions is that while I had Baz with me to back me up (and at the time, him getting a solid answer about the wait for the PMP felt like that had worked, if only the doctor hadn't told a fib to get us out of the door!) he is blind and therefore can't use a list as reference.

Someone gave me some great advice on dealing with doctors, about sticking to "This is what I need, how are you going to approach it" and sticking with that until an answer that fits is made, politely of course. Tried that, he just wanted us out and would've said pigs fly if it got him out of dealing with me. I am however going to try a mix of that method and your suggestions tomorrow with the GP.

I have to admit I am really very scared. I feel like this CRPS is running rampant, spread (if it is that) is happening very fast. To go for 4 years with it in your outer thighs for it to spread inwards just before Christmas, then below the knees last month, then to the feet last week (although I've had foot pain for a long time that wasn't CRPS-like) and to my arms, upper back and collar bone areas over the last 24 hours is scary.

I knew I wasn't really up to being up and about today, but I had promised my sister I would take my nephew to his CAMHS assessment as she had a conflicting appointment. She gave me directions and told me it was a "5 minute walk" from the bus, it wasn't, even for 'normal' people it was a good 20 minute walk, and by the time we were there my feet were gigantic purple balloons with pins and needles, itching and burning. I was fairly well medicated in preparation back-wise but my spasms were so bad I couldn't move after and I've been lucky that my son got me back to bed. It was terrifying having to get home on the bus afterwards and I didn't have my phone with me so I couldn't call for help. I thought I was going to faint. And someone was talking about me on the bus, some fanatical Catholic - I currently have blue hair and piercings so it was pretty much some odd generalisations about "evil" and me getting paid for it by God, loooovely. She did sound senile though so poor woman.

Walker wise I do have a hideous and annoying NHS one and need to save for a better one with bigger wheels that you kindof walk 'in' rather than pushing out ahead of you. Better shock absorbency is a must. It seems a bit strange to me that the various makers are way behind pram companies who seem to have got it right. Of course there's the Trionic ones but at £800 I think they're a bit out of my league (that and they're bloomin' huuuuge). I've found one for around £100 but with 3 teenagers and what have you, it's hard to justify still. I have to face the potential of needing a wheelchair but it's another thing I keep backing out of addressing - my parents scoffed at me when I mentioned that OT had suggested one, I don't tend to see them when I'm bad so they are obviously making the mental leap from seeing me with a cane and playing things down to me being in a wheelchair 24/7 which isn't what anyone wants.

I need to address the family side of things too as today shouldn't have happened, my twin could've rearranged her other appointment a month ago when she knew they clashed, and I shouldn't say yes to everything. She's a single mum with 5 kids so I do want to help but I saw her yesterday, she saw how bad I was and said "Are you sure you're up to it?" and what did I say? I am such a plonker! But I knew that if I didn't say yes then she wouldn't have a plan, she's struggling and needed me. The downside of being honest though is that it scares people off and I become isolated, or the "moaner". I hate the thought of people thinking I'm putting it on to any degree, and I don't want anyone thinking "I won't talk to Kathy about it because she's got enough on her plate". I don't want to be alone and Baz is out so much with his courses (which is great), I don't have any local friends at all. My twin is my closest friend and so it's easy to let things get over the top in supporting her because she's not very receptive to others' needs while she's so worried about her kids. They lost their dad (my husband's brother, yes twins married to two brothers) last year suddenly to alcoholism, and I just want them to be okay. Her kids are as close to me as mine and they are suffering, more so as my twin and their dad had split just before it happened so there were no goodbyes, noone was expecting it despite him having been ill for a while. Obviously Baz is grieving heavily too, and so I don't like making a big deal of my problems when he rarely talks about that, typical man trying to deal with it all.

Oh dear God, look at how much I'm pouring out today. I am so sorry!

Awww Kathy....as if having the CRPS wasn't enough on your plate...



I do understand at least partly, although luckily I haven't had to deal with family bereavement and all the stress that comes with the fallout of that. You are obviously trying your damnedest to be Superwoman, and obviously in some area you just aren't going to be able to do everything you want.

Pick your battles girl! Talk to your twin, explain that you want to be there for her and you're trying your best, but maybe some things are just not possible at the moment - with your pain levels ramped up at the moment that sort of journey and stress are bound to have nasty consequences. Maybe you could offer to look after the kids at your house for a while while she has some time to get things done instead? I'm sure youve thought of these things already lol...sorry if I'm stating the bleedin' obvious!

Your doc sounds like an ***. I strongly suggest that you start looking for a new doc - maybe try writing to clinics in the area asking if they have a doc who would be interested in taking your case on. Someone out there might have an interest in CRPS or just like a challenge and be prepared to help you fight this thing?

Don't give up hope on the spread thing - reading between the lines of your various posts, you have a LOT of stress and worry going on in your life right now - and CRPS and stress are not good chums... There is a decent chance that your current higher pain and spreading symptoms are down to that, and not 'true' CRPS spread. I know that a few months back I was having symptoms in my left arm and shoulder, including the redness, tingling, swelling, pain, weakness, numb fingers, all the fun stuff....but that has completely gone now. At the time I was very stressed because of life crap, and now that I'm happier again the CRPS seems to have subsided from that area. I'm sure that my left arm is vulnerable to it spreading there, but it's not there yet....fingers crossed. My leg and both feet is quite enough!

Maybe stepping back a bit and easing some of that stress off you would help with your pain more than any med? It sounds like you have good support from Baz and your twin sister, you just need to talk to them about what's happening with you at the moment and explain that you need to get your CRPS back under some kind of control - and that to do that you have to step back and calm your life down a bit. They'll understand that it doesn't mean you want everything done for you, nor that you can't help out, just that you have to plan things more and be prepared so that you can live within your limits for a couple of weeks...

Hark at me lmao - my own life is a mess at times!!!!

I hear you on the no friends thing....mine have drifted off and there isn't one person I could call and say come over and watch a film with me while I distract myself from this hell... It's horrible to accept that you aren't an easy person to be friends with now, and to realise that some people are so weak and lazy that they can just wander off when times get tough and not look back. My best friend is still very close, but she lives in London and we only see each other maybe twice a year...maybe that's why we are still so close!

Thank heavens for this site and some really REALLY good people who understand....

Hang on in there girl, you are not alone. You'll get through this horrible time and find some peace again.

Bram.

I really wish there was a "Hug" button instead of a thanks one sometimes...I just want to give you a big cyber hug Kathy. Your doctor is a real piece of work. I had one similar to that and it took just about every ounce of control for my boyfriend not to deck him at one of my appointments. Fingers crossed you get away from that as quickly as possible. Yikes...I don't know how you've lasted this long with him. Is there any process for reporting his conduct and behavior? That just seems absolutely unacceptable to me.

Thank goodness for Baz...sounds like he is a real special guy. Sometimes the extended family is just harder. They don't see you day in and day out...that endless struggle with this monster. My family SAY they understand and I think they try...but they do a lot of thoughtless things sometimes or set really high expectations on what I can do not realizing it's day to day and sometimes I can do certain things and other times not.

And don't you worry about venting here...that's what we're here for. I tend to babble on ridiculously...long winded doesn't even BEGIN to describe me sometimes...but it's therapeutic in this environment. Even just typing things out and thinking "out loud" so to speak sometimes helps me get all my thoughts and priorities in order. Don't know what I would have done without this forum.

Take care and good luck. We're here for you.

You two are just amazing, I hope you know that? You have been such a great support, I genuinely think you're brilliant.

I've had a long day of appointments and arranging stuff, so I will try and keep this reply a bit shorter, for you as well as me lol. I had an appointment at my daughter's (posh) school this morning, she hasn't fit in very well since the move, and has been bullied quite a bit, one girl in particular telling the whole school Connie has AIDS and giving her a complex about her weight. Connie feels a lot better now as afterwards when she went back to class I got her some treats in the town to pamper herself and relax a bit more.

Anyway, I had the GP appointment this aft and nearly had a heart attack at the change in him. He's always been nice, don't get me wrong, but he's been too afraid to do anything without the pain clinic say so. Well, he had a good ***** to me about having had the same problem with the pain clinic (not sending letters, not answering calls, etc) and we were for once on the same page completely. I hope it lasts! He thinks my feet and arm symptoms are suggestive of spread, but that I'm also stressed and tired and run down so not to panic. To be safe he's referring me to the podiatrist for the feet as they're swelling and causing more problems. He asked me if the diazepam had worked for the spasms and re-prescribed without any problem. He was happy to refer me to the other pain clinic but suggested we try something else first, and this bit I wasn't expecting. He has referred me directly to the SCS surgeon. He said he has had the letter with my diagnosis from the neurosurgeon, and in it he had suggested I was put forward for SCS (which the pain clinic refused to refer me for even with that letter). My GP says it is unfair for the pain clinic not to allow me a consultation with the surgeon when it was suggested by my diagnosing doctor. Very happy indeed.

I suspect the surgeon will write back saying I have to go through the pain clinic, but at that point he may give some indication of whether it's highly UNlikely I would be considered, so might save me getting my hopes up along a long process that will come to nothing. He might give me a consult and tell me to go off and do a PMP with the pain clinic, but at least either way someone's listening. I still think it's better this way than waiting a year for the PMP (which is the only way this particular pain clinic allow you a consult with the surgeon) only to do it and find out I'm not suitable for SCS. Now I can at least think of the PMP as a bonus rather than an obstacle.

If the surgeon refuses the direct referral as he wants me to go through a pain clinic, I will get the referral to North Tyneside and ditch Mr Wilkinson at the RVI, who is pants.

They never did ring me back by the way. 4 different days, 8 different calls, one plea for help as I said I was really worried about some new serious symptoms, not ONE reply.

Whoop!!!

I'm so pleased that your doc has at last found some humanity for you! And of course especially pleased that he agreed with me about the stress thing...

Must be horrible worrying about your daughter and her new school, any kind of bullying is awful, and you do live through the whole thing with them, with the added frustration of not being able to march in and grab the tormentors by their ears and give 'em a good talking to yourself. I'm sure she appreciates your support, and I bet she's gorgeous, bullies are always terribly unimaginative, it's usually about weight or looks, and they're usually the ones any girl is already worried about. Grrr.

I'm glad he's prepared to refer you for the SCS, but do read all round about them before deciding anything. I think many consider them a final step, as there are some significant risks....having said that of course, some folk absolutely swear by them. As with all these fun treatments we love trying , only you can decide. I'd still be inclined to push for the news in clinic referral, as even if you do go down the SCS route, you'll need a good doc behind you.

I once rang my old pain doc three times in a week because I was scared about some new pain and symptoms I was having.....I only ever got the answerphone, never had a call back, and she totally dismissed it when I referred to it at the next appointment. That was the last time I saw HER! Some docs are just crap sadly.

So glad to hear you more positive You had me worried there!

Hopefully something good like this today is a corner turned, and life is maybe going to smile at you again. I'll keep my fingers crossed lol.

Bram.

Thanks Bram - I think I am just used to having so much 'other stuff' going on with the kids/family that I don't really see the wood for the trees and don't appreciate the stress levels. That and I don't feel as much of an emotional cripple as my body is telling me I am lol. Well, not all the time

Connie is gorgeous, she is like many in our family, curvy, big boobs, pretty stunning if you ask me. I suppose at her age, you're either still a bit puppy fatty or like an ironing board, and she has curves. She also has the most amazing curly long hair and huge eyes and isn't chavvy, so I'm sure there's a bit of jealousy there but she doesn't see it that way. She's having awful trouble with her periods (started just as she turned 9, poor thing), so her hormones are all over the place and she is low/tired. She didn't tell me immediately about the bullying until they were all over her Facebook asking her if she wanted fries with her diabetes, and telling her she was going to die of "fatness", calling her frigid and telling everyone she has AIDS. Teenage girls can be really horrible.

Tomorrow is my middle son's first checkup with the psychologist at the hospital since just after his breakdown last year, and he's currently low too which worries me senseless, so when I think about it it's not surprising I have all these stressy things going on. Luckily my oldest is swanning through his college time without a care in the world - happy, well adjusted and totally LAZY. Got girls flocking round him and yet rarely gets out of bed before lunch. It's alright for some!!

Totally agree about the pain clinic referral, will be going ahead but happy with today's result for today's outcome. Will be seeing him within the next week or so anyway so will go ahead then, he said he was going to prepare for it anyway by looking into whether I need funding etc, so he's not left it standing as such. I really can't see the SCS surgeon taking me on without a pain clinic referral anyway. But you never know - if he backs the pain clinic in saying it's not suitable for me, at least I'll know, and maybe before I wait another two years lol. I am not sure about SCS yet but I am sure that I want to know what's really open to me and don't want writing off as a lost cause.

I am sorry you had the same issue with your old pain clinic, what a pain it is when they don't take things seriously! You'd think out of all the services the NHS provides, a pain clinic/consultant secretary would understand the importance of promptly dealing with issues like this.