Hi everyone

Well I finally got my first appointment for the PMP, it was an assessment with the physiotherapist. I got sent a long questionaire to fill out and take with me, and from reading it I felt very angry and not positive at all about going. It was made up of rating scale type statements that you had to rate how much you agree with and a lot of it was loaded, if you get me. Lots of vague comments such as "I am getting on with the business of living despite the pain" - well surely if your heart's beating that's a yes lol. Another was "I am relieved to know I don't have to reduce my pain to do anything I want in life" - yeah right.

So I trundled along to this appointment really expecting the worst and am relieved to say it wasn't bad at all. For a start off the physio has trained in CRPS at Bath/The Min. She asked me if I'd thought about going there and I said I had, but that I didn't know if it would be worth the costs/cons of travelling away from home. She said that she thinks we should see how services here work for me then take it from there, but she suggested a consult there at least may be something to think about. She warned me how important it is to read up on CRPS and read up on good reliable sites. She says she is going to put some info/links together for me.

She asked me what I want from the programme and I said I didn't have any expectations and that there are areas I need to start controlling, such as my sleep, relaxation, pacing, and flare prevention/coping.

She suggested she sends me a sleep questionaire as it will help us assess my "sleep hygiene" and she hinted that it's likely I have an underlying sleep disorder due to the pain/stress. If that's the case they will work with me but also refer me on to a local sleep clinic.

Pacing came next and I talked about how I don't like to be seen as a bother and end up overdoing it, not because it's demanded of me by uncaring idiots (although there are people who do try to get me to do more than they know I can cope with, and I let it happen) but because I don't want to be a pain in the backside. I got told off a bit in a nice way and she said that she's going to work with me on this quite strictly - I felt at this point this would give me a fairly good excuse to use with people who want me to do too much lol.

I'm getting an appointment with the psychologist side of things soon which I expect to be the less useful part of it (and where those statements came from), so am not looking forward to that although they might help relaxation wise. Need to filter out the "it's all controllable in your head, think pretty things about pain and it will all disappear" mumbo jumbo.

The last thing she said was that I won't be starting the standard group PMP yet as she thinks I need more intensive one on one support before I'll be ready for it. She said it might be September's or it might even be May next year - I'm not really bothered as I prefer the idea of the personalised plan rather than one size fits all. She also asked me if I'd be interested in doing a course on the science of pain as she feels that knowing the exact in depth mechanisms gives you back a bit of control over how you feel about it.

So, I see her again on the 2nd I think. Just thought I'd keep you up to date. As a side note, we also received my DLA decision after all this time. The reason it had taken so long is that my consultant never wrote back to them. Thankfully my GP stepped in and saved the day, and I have been awarded higher rate mobility and middle rate care til March 2015. Gobsmacked as I was expecting to have to have a medical. When the letter came through the door I felt sick at the thought of it being a medical request. Very relieved and grateful to be honest.

Sounds really positive!! I'm so pleased for you. That's makes a lot of sense...

Fingers crossed. I was due to go to Bath and am still in the system for it, but I'm putting it off at the moment as long as possible, I hear youon the travelling thing particularly having children etc it would be a nightmare for my poor husband... I found some info, but it's not easy to find anything other than the official site!

Thank goodness for someone talking CRPS sense - they are worth their weight in gold

Bram.

The PMP sounds promising. I'm sure you are relieved to have the DLA sorted as well.

I'm happy that things are going well for you.

I think I will have to switch to the NHS soon. I used my private insurance for the surgery so it has been paying for everything so far. I don't think it will keep paying though. I'm not quite sure where to start with the NHS. I love the NHS but my GP is a muppet so I will need to go in knowing what I want.

Hi Kathy that sounds quite promising and a great relief on the DLA for you.Would like a look at the links to rsd sites they send you if you could.
I am also waiting for an appointment at a pain management clinic and filled in a form the same it was all 1-9 answers about all sorts. I've heard about this place in Bath but I'm in the northeast so probs too far for me.


Take care G

*headdesk* Sheesh! That's a winner of a question

Pacing is really important. What really helped my daughter at school (she's 16) is getting what's called a 504 plan; it's a lot of work to get one, but once you have one, you have almost complete freedom to tailor things to how it will work for you. And frankly, it gives you a quick, easy thing to say to turn down requests that will be harmful ("I'm sorry I can't do that; I have a medical 504, and I'm not allowed to do things like that"). My favorite stupid thing that they had her do at school before we got the 504 was leave one of her classes in the middle of the class period, walk on her crutches with her surgery boot all the way to the office (it's a huge campus) and sign a form saying that she is aware that she has missed a lot of days of school - and then, of course, walk back. She was too shy to tell them to take flying leap, or even suggest that perhaps she could sign the form on her way out of school, so she complied and, of course, missed the next few days of school because of a flare. I hope they have something similar in the UK, because it's a great resource. This lady is right, though - you have to be able to decline things, even though it really stinks Try to come up with a short but significant phrase. It's so frustrating, though - people just don't understand that just because you did something one day doesn't mean that you can do it the next day (and it probably means that you suffered for doing it for the next few days).

My middle child has caudal regression syndrome. We found out in my 6th month of pregnancy. I had to be hospitalized for pre-term labor for all of my 7th month. One day, a psychologist came into my room and asked how I was coping with having a handicapped child, and told me to imagine rainbows *sigh* Sometimes these people can be helpful, I'm sure, but other times ...

Anyway, I'm glad to hear that overall, you're finding some good information and resources! Those are some helpful things, and really critical for managing RSD and similar diseases. My RSD is in remission, but I've had CFS and fibro for 30 years, and it's similar in many ways.

Oh, one more thing - doesn't IKEA have those little scooters available? Use a scooter, if you can! Or a cane - I have a cane that I use when I'm somewhere between walking and a scooter, and I put a lot of pretty ribbons on it to make it cheerful and pretty.

Thanks all of you! Geordie - SNAP. Ha, I'm in Newcastle and kindof guessed from your name you are fairly near here too. I'll have to be careful what I say about my naff pain doc now tee hee!

Kim - there's good and bad, what I have learned though is not to put up with the bad. This is harder than it sounds when you're sick of fighting pain, as the last thing we need are doctors who make us battle them too for proper care. I hold on to the memory of my old fantabulous GP. I've had a year and a bit of having to fight my GP and of being seen as a drug seeker by another one at the same practice. As soon as my diagnosis came through things changed, I even got an apology from my GP and he has started being a lot better. I actually feel a bit sorry for him that those presumptions were made. A lot of GPs are frightened to prescribe. What we need is for them to grow some balls lol. Still I am grateful for his help recently.

SloRian - not sure if Ikea have them scootery thingies. I used a cane the other day because I'm aware of how much I get in the way on two elbow crutches or with my rolly thing. I'm also less embarrassed by my cane, but to be honest I'm beyond that point now. I've found my pain levels after using just the cane are a lot higher. I know it's time I got a chair and I keep saying I'm sorting it out but I need to go to the GP and get a referral and I know he's against the idea in case I stop trying to walk. I am going to try ringing OT as they got physio out with the walker last time. I'm also going through the motions of getting a disabled bus pass but that's a more complicated process now too, I have to get a social services referral and then wait for a physical assessment and I'm sick of all that. Need it doing though.

The excuse thing is something I've been thinking a lot about. Which way to actually go with that. I find going all in on CRPS just makes me look a bit of a nutter/OTT, and saying I have a bad back/legs isn't cutting it as everyone has that and has advice for curing it like they did by using ibuprofen/ralgel/insert other over the counter miracle here. I often get sent those "Understand me" type statements/pictures etc on Facebook and the likes and think they're actually unhelpful as they over-emotionalise (is that a word?). Not my personal cup of tea. I think perhaps just something without all the OTT melodrama.

Imagine rainbows? She'd have been seeing stars if I were there lol!

LOL! Yeah, I just kind of gave her a weak smile and looked vague and started answering her questions in a vague, confused way, and she eventually left (I wonder what she wrote about me in her little book? )

I know what you mean when you say it's embarrassing but you're over it. You just HAVE to get over it, or you get flares, and frankly, I'd rather (or usually rather) have the embarrassment than a flare. I remember once when I was on a field trip to the Arizona state capital with my daughter's 5th grade class. We had just moved to Arizona, and the other moms didn't know yet that I was sick; I had been able to cover it up in the brief times that I had seen them (there were chairs available, or at least places to lean against). It's silly, but it's so nice to think that other people think you're normal! It was inevitable that they were going to find out, though, as soon as I was with them for longer than an hour. During the capital tour, I had been lucky - the occasional chair to make a beeline to; the ledges here and there to surreptitiously slink over to and lean/sit on. Finally, we were in the middle of the capital building looking up at the dome. Rats! Not a chair or ledge in sight, and the tourguide was going on and on! I lasted as long as I could, and then had to gracefully sink down and sit ... on the floor! It was either that or pass out, and I figured the former was slightly less embarrassing. People turning around and staring at me; I just give them a weak look with my eyes kind of crinkled up in pain and hope they realize I'm sick and not just lazy. Oh well; that wonderful time when you have to reveal that you're not "normal" and you know people are going to be talking about you

With my son, it's completely different - he doesn't have legs, and it's more than obvious immediately that there's something wrong! We've had to learn how to make "recovery" conversation - that bit of talk that gives people time to recover while they stare and blank out and can't figure out what to say. He's so charming and friendly, though, that as soon as they recover, they love him. The funniest story with him is when he was a baby - I usually kind of balled up part of the baby blanket around his legs, so he looked "normal", because you're tired of people seeing only the handicap instead of the baby. He was a lovely baby with blonde hair and gorgeous blue eyes ("look at those orbs!" some guy at the store said). One day, a lady walked up to me and said, "Oh, I just LOVE looking at baby's sweet little feet!" and before I could say anything, she ripped off the blanket - and just stared with her jaw dropping down to her feet! I made some recovery conversation for quite some time - she was completely frozen, staring at him with her mouth hanging open. Finally, she managed to gasp out a few words and made a quick exit. I bet she never did that again!

re the wheelchair - I've started to use my son's scooter (we have several) for longer outings when I know I won't be able to sit. I can understand why a doctor might be concerned about us not walking enough, but they don't quite understand the flare thing. I want to walk as much as I can and understand it's good, but having the option of a scooter lets me do so much more. When we were camping last week, I was able to go on a little hike with the family using the scooter, and there's no WAY I could have done that walking; I would have had to stay back at the trailer alone. Just try to reassure him you understand the importance of walking, but this will let you get out more and do more things that you couldn't do otherwise, and that has important health benefits, too. Good luck!

re the excuse - yeah, you need something between something that makes people say "well EVERYONE has that!" and "OMG!!!!" I was thinking about it and realized that in my daughter's case, I was the one that usually gave the whispered excuse, and that lends a lot of credence (IOW, someone else besides my daughter believes it, if that makes sense). I usually say something like "She has a very rare disease and has to be really careful and can't do much" with a concerned look on my face. However, when she was at school and I wasn't around, the kids definitely did NOT understand, and it hurt. When she got her 504, that helped, because it sounded impressive ("I have that 504 medical thing and I'm not allowed to do that") - we found "not allowed" worked better than "can't". Perhaps try using the "not allowed" thing? It lends a little weight to what you're saying.

Hey you guys! Oh my word, I can't believe I've not replied to your post SloRian, I thought I had! I'm really sorry, my brain is total mush!

I've had appointment number 2 with the physio today and I am really pleased with how it went. I am shattered now though! My twin sister came with me which was really kind of her - I've been fainting a bit you see and this time Baz couldn't come with me. I think it was good to have her there as she heard a lot of stuff that I hadn't bothered the family with because it looks a bit "woe is me" if you get me.

We started by me telling her how I've been (migraine/emergency GP/etc) and then going through the sleep diary. She wants me to keep trying with the sleep hygiene for a few more weeks before putting me in to see the psych if the sleep paralysis doesn't go away. I even told her the freaky nighttime thing wot shall never be mentioned again outside of the sleep and sex thread. My twin covered her ears for that bit

Then went onto what's going on at the minute, we talked about my appointment with the SCS surgeon tomorrow and how I feel bad for going over the pain doc's head, but she agreed with the GP that if the neurosurgeon suggested it it's my body and I should be allowed to talk to him for more info. I also mentioned the wheelchair assessment and she said I will definitely need one for pacing my walking. She thinks it's a good thing for me, so it's a relief that I don't have to feel over the top for thinking about it. She has given me the details for local loan of a wheelchair for until the assessment comes about as it can take weeks here. So looking like I may have one by the end of the week.

Then she went through the pacing idea, and at first I thought I had all of it covered in theory if not in practice but she added a fair bit of info I hadn't known about, such as what my five minute break IS being a bit more flexible. She said we all do four basic things - walk, stand, sit and lie down. If I am walking and have to have my "rest activity" I can pick from any of the other three. She has suggested no watching telly as I'll get sucked into a program even if it's all rubbish on the telly lol, it's very true. If I'm standing to iron for example, I don't have to sit down or lie down, I can walk around (eg. pottering about putting clothes away) for my "rest". So it isn't as black and white as I thought. The walking will be the toughy unless I get the chair sorted quickly. I also have to have everyone on board, so no more hiding how bad it is from family.

I made a comment about how I needed to control the pain better and she said something that I didn't expect - which was that if I focus on controlling pain I will not ever win, but if I focus on controlling my life, my pain will improve alongside it. She also said it won't ever go away, and regardless of how less frequent the flares will be, they still will come. Just not as often and not as bad, HOPEFULLY. Now not sure whether I go in for the Chinese proverb style of the first comment but it does make a bit more sense than I would normally give it credit for lol.

She's printed out loads of stuff on CRPS and we've talked about Bath again as the gold standard. The plan is to try things locally for now and then see if I want to go there.

I also discussed medication with her - not the actual medical stuff but the implications of not being well managed. She said her main concern would be if they change my meds now they won't know if this PMP is working. She also said though that if I really can't cope I should be managed better. The thing is, I don't know of any alternatives at the moment anyway so I think I will stick with the devil I know for now and see how the PMP goes - it could be that my pain comes down anyway from that. If it doesn't or the pain gets in the way of the PMP pacing etc, then I'll have to try and get it reassessed.

I am absolutely shattered now - it's funny that after all this talk of pacing, I had to walk there and back on sticks and am sore now, but it's all about to change once the chair is sorted, innit?

Tomorrow - Mr Jenkins at the RVI for the SCS talk. My GP and another person online both said something similar when I said I wasn't hopeful I would be considered fairly without being put forward by the pain clinic. They both said if he wasn't able to be flexible on that, I wouldn't have got an appointment, so I am hoping for a good, objective and fair discussion on the possibilities, even if it's a total no. I just need to know. xxx

Wickid innit sista?! (Sorry, couldn't help myself - it was that 'innit' thing lol)

I'm glad you had a positive chat and have some other things to work on, makes all the difference in the world to feel like you have some options and some stuff to concentrate on through the day....distraction is always a Good Thing I think!

Good luck with the pacing, very interesting about the 4 ways of being. Mine never said that, I will have to set her straight I know I sit too much, but if I don't elevate my leg often enough, my foot is darned crappy and I can't stand it or do much else anyway. I try not to sit for too long before getting up again and getting on with stuff...

Good news on the chair too, quick work! Just don't expect anything fancy or lightweight , although the one I tested before getting mine wasn't half as bad as I'd feared. Have fun!

Hope tomorrow goes well, whatever the decision turns out to be.

Bram.

Kathy, I'm glad things seem to be moving in a positive direction for you. Keep us posted on how the PMP is going and do let us know how you get on with the chair.