I've done it again but this time I was genuinely pacing and now I can't get up at all. Two hours in town with 3 good breaks. Just wanted to be normal. Went for coffee with my sister and her daughter (the ones that were fighting and are now back on track) but a couple of my sister's friends came and laughed at me for walking slow (don't think they meant to upset me) and one of them let go of a heavy door which slammed on my hip. I was feeling really faint all the time we were out and nearly fainted a couple of times. They didn't notice but my niece did and helped. Rang Baz and he took me home and I've been so sore since. On top of my legs and back flare pain my ribs also ache so much it hurts to breathe and I vomited from pain through the night. That's with the supposed flare tablets that I now have to take regularly just to get up on a good day.

I've been reflecting on how medically the move up north has been really bad for me. If I was still under my old GP and pain clinic there's no way they'd have left me like this. My new GP is nice and thoughtful but I've long since given up getting a medicine overhaul from him as he won't dare do it without the pain clinic backing and they're saying if I'm tolerant to one med then I'm tolerant to all and only counselling will help. I need the meds sorting because this pain clinic are forcing me into a wheelchair which I wouldn't need if I was managed better. I am so angry and tired. I hated living in Yorkshire but all I can think of is how much better I was supported down there by the medical profession.
Sorry for offloading. Just missing living.

I am truly sorry you had such a tough day. No problem about "off loading." This is a good place for it. Hope you get the issues with your meds solved soon so that you can get this under manageable control.

Oh dear, it's horrible trying to be normal isn't it? I'm crap at it myself lately.

We all try to pretend to be 'normal' when we're out, don't want to cause a scene etc - I think you're very courageous to have gone when I know you've been feeling rubbish lately. You gave it a go and tried your best, the fact that the CRPS wouldn't let you do what you wanted is not your fault.

As for your doc, it makes me so mad when there's this complete failure on a doctors part to recognise the importance of pain relief in CRPS. Without it we are in hell, and all this 'concern' about dependency, etc is pathetic when dealing with a monster like this. I'm glad your doc is nice, but all the understanding in the world can't provide pain relief. If your GP is too scared to deal with it himself, it sounds like you need to tackle your pain team and maybe even find a new one to guide your GP with your meds. Saying 'if you're tolerant to one med you're tolerant to them all' is rubbish. And the bit about only counselling helping is laughable. There must be more they and your GP can do to support you.

Moving must have been a difficult decision, but it sounds like you weren't happy in your life in Yorkshire, which wouldn't have been great to continue with while dealing with your health concerns, but I understand your frustration if your previous pain team dealt with things better. Is there any way you could contact your old pain doc and ask their guidance on dealing with the new one?

I hope you have a better day Kathy, about time you had a break from this...

Bram

Thanks you two. The meds side of things is really getting me down. I have tried and tried with both the GP (who would be happy to prescribe me anything with the pain clinic's say so) and the pain team. The only way forward is a new pain team. I don't know if that would mean giving up on the pain management programme I've just started as that comes under my current one (although they had to refer me even though it's run by my doc, so maybe it's separate enough to keep if I changed pain team?). There is another local GP at another practice who specialises in chronic pain but because I've only been with this current one a short time I really don't want to leave and be suspected of drug seeking again which is what happened with this one. It was awful and I'm not as strong as I was then for coping with that.

I suspect I'll end up in A&E tonight. I've been trying to get a GP appointment for a month now and have to wait til Friday and this pain is too much. The hospital were great last time but it involved being admitted and I really didn't want that.

I've tried to be productive today. Waiting for a call back about a referral for a wheelchair assessment (GP was against it last time we talked about it but that was ages ago, but even so I've rang the OT to do it instead). Now need to ring about getting a bus pass but that's not massively important right now - it's just yet another bloomin' assessment that I'm not up to and the wheelchair one has to take priority.

Now I am going to load myself up on valium and buprenorphine and try and distract myself with a film. It's so hard today because I need to move to reposition and it hurts too much to do it but noone else is in so I have to get on with it. I just don't want to faint again!!

Kathy, I hope you feel better!
You know your limits, and you must try to live within them, rather than, trying to be 'normal'. What in the world is that, anyway?
So, carry on and don't be ashamed that you're slow! It is, what it is! Always, keep an eye out for a new PM team! You never know.

I wish you all the best!

Anyways, there is EVERYTHING, to look forward to! What else can we do? We've changed, life has change, and we must, MUST keep looking forward!
We don't wanna look back, that's in our mirrors. We MUST look forward, and make the best of what God has given us, and, that's a LOT!
You will lose friends, of course, that comes with life.
But, you will also gain more understanding friends! Also, comes with life!
And, you'll probably keep a childhood, or teenage friend!
I hope you do!


Pete


asb

Hey Kathy,

So sorry that you're struggling right now. It is a B**** to want to be out and about, try and give it a go, only to be laughed at for walking slow… hum, even if in jest, my God, where’s the humanity, or compassion? And I’m sorry, but how thoughtless to let the door fall back on you. People can be so rude and inconsiderate. They just simply have no idea Kathy how difficult the simplest of things can be for us at times. I applaud you for trying though.

I’m with Bram on the doc and meds. Makes me mad too. It’s just wrong on every level! The docs are so worried about covering their *** that they are failing to treat those who REALLY do need pain relief. I mean hellooo… Pain is in the damn name that they’ve given this condition! So yeah, you’re seeking drugs… for PAIN relief! Any drug or combination thereof that will take care of that will do. Geeze!!! And then there’s “only counseling will help” ONLY counseling? Well hell if that’s all it took I’m sure we’d all run out tomorrow and sign up! Counseling may help with some aspects but it’s just asinine to think that, that is the end all be all of what is needed now or in the future to help you with this disease.

I guess I’m the one ranting now. I tried to do some much needed cleaning around my house today, and it’s frustrating at best what little I accomplish before I feel DOA. Would love to be able to afford hired help for all the things I struggle to do, but that’s just not possible right now. I had a birthday party for my 11 y/o on Sunday evening and I spent the next day and a half in bed recovering. It’s wild how much I just slept and slept. Woke up sweating and feeling like wow, that was crazy amounts of sleep, and I’m behind on EVERYTHING. I am a little aggravated today (can you tell? ). I start to feel like I’m drowning in to do’s and I’m silently screaming..” I’m going under.. does anyone notice?” So when I read your post it didn’t take much for me to begin to rant at how ridiculous all this is at times.

Hang in there Kathy. Get some rest. Perhaps tomorrow will be better hon, or at least that is what I am hoping for too.

I'm frustrated today myself

Went to my daughter's athletics evening yesterday with the rest of the family, she so wanted me to watch her and it was a nice sunny evening for a change. There was a little distance to walk between where my husband could drop me off and the field, but I took it slow and got there ok, but I could tell the others weren't used to me being there and slowing them down, and I felt a real muppet trailing along. The evening was two hours, and by the end it was a lot cooler and I was aching all over. I started off sitting on a grass slope which was ok, then a friend of ours came over and lent me a camping chair bless him. I stood to watch each of her races but sat sensibly for the rest, and then at the end we had to walk back to where the car was parked, which was quite a bit further than before. My husband couldn't bring it up as all the other cars were going the other way, so I walked there, nice and slow. I was really pleased with myself as its the furthest I've walked for a long time...

But last night I was in so much pain with my leg from toe to hip, and it took me ages to sleep. This morning I feel about a hundred and I'm moving at a glacial pace....from one evening in the sunshine! Grr. It's not like I tried to stand all the time, walked for miles or tried to walk fast, or anything else daft. I hate this 'new normal', I want to be me again and dash around being the busy, energetic and efficient one!! I know I can't be, I know it's not my fault, but O...M...G... I wish wishes were real and fairies existed and magic wands worked and I had one under my bed. I'd be waving it now!!!

Oh well. I did it anyway. Whoop. Go me. Ouch.

Hold your head up high everyone, we know the fight we have going on every minute of every day, we know how much effort all this takes. Well done to us all for trying to do anything at all I keep telling myself that.

Bram

Oh Bram! Hey, what do they say, no pain no......pain lol. I think you did ace, even though I'm totally sympathetic with how crap you felt after. It's totally naff that. It's the down time that bothers me the most. I am still laid up now! I've been tootling around the house but I feel totally and systemically sh*te.

God knows what is to blame, but yesterday afternoon that all over ache (with the horrid crick in the neck and aching muscles everywhere) got added to with the worst migraine of my life. I've had the worst stomach cramps too, those slow waves where you can feel it tightening and it hurts. I was sick in my sleep too, more of a minor reflux than anything but I seriously thought I would end up in hospital last night. I am sat in bed now with sunglasses on as it hasn't gone away yet, although it's a lot better than last night.

The title of this thread wasn't really a "My life is over, woe is me" thing, it was more a query, which I failed to word in the post. What do I do next? I have talked with Baz this morning and we both think I should see a rheumatologist as we feel there's something bigger going on behind the CRPS and back/IBS/migraine/memory problems that's getting overlooked by the CRPS and "lower back pain" diagnosis. My pain doc won't even look at a list of my symptoms as he says diagnosis isn't important in pain. Well it is if you're frightened to death lol.

My big sister has been seeing a rheumatologist for her aches and pains and she has been diagnosed initially with palindromic rheumatism and now is under investigation for hypermobility and an underlying connective tissue/autoimmune disorder. Three close relatives (mum, dad, twin sister) have been diagnosed with type 2 diabetes (not weight related) in the last year, something I definitely don't have but another autoimmune issue. My other sister has Raynaud's. I tested positive for smooth muscle antibodies, which from what I've read links mainly to autoimmune hepatitis, which I don't have, but links say it relates to other issues too, they just don't say what they are lol.

Putting the autoimmune side of things aside, I think some sort of ANS problems are a big possibility too. The problem is so many of these issues overlap with others. One doc said I would have a diagnosis of fibromyalgia as well as CRPS if I'd had more widespread issues, well I do, they just haven't taken them into account as everyone, me included, has been more focused on controlling the pain. I am scared to death of this fainting and these days where I just feel so bloomin' unwell all over, not just sore. My dad had a stroke at 40 and nearly died so I am getting myself worried about stuff - high cholesterol and blood pressure run on both parents' sides despite them being very fit, healthy eaters and active - not smokers, etc. I am big, a smoker and because of the pain I'm not as active as I want to be. My blood pressure had been generally low for years until recently when it has gone up to the higher end of normal. I have slightly raised cholesterol. I find it really hard to lose weight because even though I eat well I don't get enough exercise. I gave up smoking for four years and plan to again but keep putting it off out of weakness!

Maybe I just need a toe up the backside. Boot camp perhaps lol!

The plan is to see the GP this Friday, see if he will consider putting me back on my migraine meds (propranolol) and possibly amitriptylene for sleep/pain. I know it didn't work wonders for pain last time but it did work for sleep. The benefit of the propranolol works twofold as it would prevent my migraines again, and it would lower my blood pressure a bit as it's a beta blocker. I also want to get a referral to the wheelchair service (seeing as OT haven't rung back) and a rheumatologist, perhaps the same one as my big sister sees. Does that sound like a plan? If he won't touch the pain meds he has to surely sort the rest at least?

Thanks Kathy I'm sorry you're having so much trouble with your stomach and GI area, that's miserable all on its own without the rest of it. Hope you feel better later.

All over ache......yep.
Crick in neck......yep.
Aching muscles everywhere.....yep.

I'd also like to add:

Burning pain in front of knee with every step.
Left shoulder pain as if I whitewashed a big wall yesterday.
Hip pain, presumably from the walking yesterday.
Feeling of hopeless inadequacy.
Attack of misery and 'why me's.
Generally down.

Also I'm wearing a t-shirt, a woollen jumper, and a thick long wool cardigan and a scarf. Indoors. My elder daughter just went out wearing jeans and a strappy t-shirt, and texted me five minutes later to say she was roasting in the sun as it was so hot!!!!!

What the hell is this thing doing to our bodies on a really basic level? It's like every system we have is malfunctioning in one way or another. Bizarre. No wonder the docs are scratching their heads and avoiding us! I think there is a temptation for them to put every ailment under the 'Unknown But Probably To Do With The CRPS' heading, and not investigate properly. It does worry me. I have bad stuff in my family history too, including auto-immune stuff and diabetes, yet my parents are doing ok and managing to stay active. I feel like I've been struck down early for some crime!

Just keep going Kathy. It's all we can do I think we are all amazing, in a way no one but those suffering the same thing can understand. If the general populace had a handle on this, we would be pride of place on 'CRPS Day' in our local towns...

Bram

Oh Bram would there be cake on CRPS day? I want to organise one now lol. I might not even be joking there. Baking for pain, nom nom. Of course that conjures images of spacecakes and I didn't mean that lol.

Migraine came back with a vengeance this aft. Had to nap as I couldn't read the laptop or phone even with sunglasses on. Even a pillow hurts my head and neck. I haven't added the day to day symptoms to the list cos this feels different, just not the usual. Can identify with most of that list but my knees are cold and numb (as opposed to red raw thighs lol). We are odd but you're right that people with this are pretty amazing. Can you imagine how much more the docs would do for someone who presented with all these problems in an acute form rather than chronic? They'd get their own episode of House I bet lol!