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!

Of course there would be cake!

I've often wondered why there has never been a medical drama using CRPS for an episode.... I love watching House, and it is just the sort of thing I can imagine them all discussing. They are missing a trick - there are so many weird and wonderful symptoms he could be enjoying

Sorry your migraine is still so bad, hopefully some cooler evening conditions might ease things a bit. They are horrible to have. My leg has been awful today, I have shooting pains and sensitivity from above my knee to my ankle, as well as the full leg aches as usual and the foot crap. Ouch ouch ouch.

Ah well, you have to laugh. I'll give the cats a bit more catnip....

Bram.

Lol it's worth it just to have the entertainment of watching them roll around stoned. Of course after your post we may all be competing with the cats for it. Can you imagine approaching a dealer and asking him..."Yo dude, got any.......catnip?"

As for House, can you imagine if they did a special episode on CRPS and simultaneously ran the bystory of House changing from Vicodin to catnip? Haha! Ow my head. Hope you're feeling better tonight Bram

I'd so like to help but I'm sure I can't. Find your triggers and avoid them. Get your sleep and stay as busy as you can even if it's just reading a book. Exercise and eat right. Try to stay connected. Try to be find new things to occupy your time.

Best of luck.

Hey guys, I honestly dunno what I'd do without you. You all keep me marginally sane (oh who am I kidding?) and laughing! You're a great support, you know that? All of you.

Kim - I don't know how you do it, without belittling this bloomin' awful thing we all have, you sound like you have real Wonder Woman strength in there and haven't given up on giving life your all. Your dog sounds lovely too. Our dog is like a little torpedo, she's a staffie, but also likes fetching/running games when I'm not up to the walks. I hope your husband is better soon

Hasmag - it kindof works differently over here, our records get centralised and relevant stuff is passed on to new doctors at the referral stage by the GP or what's on the computer system (if the doctors are in the same area). My pain docs had all the records from my previous pain doc, and just have royally cocked up my care by their own work. I'm not so sure it's what they've done so far (other than the meds side of things), it's about how he's not listened. He doesn't have a clue where I'm at - as far as he knows I have a bit of backache that's all in my head, he doesn't ever want to hear the real symptoms. There's a formal complaint in anyway, they won't find in my favour as all docs cover their backs but I won't be a doormat any more either.

Well, I ended up at the out of hours GP last night after ringing 111 for advice (non-emergency helpline that has replaced our out of hours GP service's number). They had to put me in a dark corridor to wait as the waiting room lights were so bright I couldn't stand it even with my sunglasses on and my jacket wrapped round my head lol. I looked a total divvy. So anyway, I had my blood pressure checked, 150/90, high for me but apparently not scary high. He said it was a bit of a "super migraine" and gave me an injection of metoclopramide for the nausea. He would've given me a shot of codeine and diclofenac but I can't have either, typical of me lol. He said it would only sort the nausea but it might help me get through the night til my GP was open. They don't have a full range of medications available there, especially not at 1.30am! Anyway they slung me in a taxi home and I went straight to sleep, and woke up ok. Bit tender but the migraine itself has gone. I was told I'd have to go on prophylactics of some sort given how bad it was. I've been on propranolol in the past for them so I don't mind for the sake of not having a rerun!!! My arm is delightfully bruised from the injection, I'm tough normally but bloomin' heck it's achey and tight!

Thanks for all the help and support guys