Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)

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Old 06-27-2013, 04:24 AM #1
KathyUK KathyUK is offline
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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
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Old 06-27-2013, 04:31 PM #2
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Kathy, I'm sorry you had a rough night but I'm so glad the migraine has gone. I used to take pizotifen for migraines. It didn't keep the migraines away entirely but it did reduce the frequency. It also reduced the severity when I did get them. Having said that, I've never had such a bad one (okay, I had a TIA from a migraine but that didn't really feel bad, I was just out of it).

I haven't taken pizotifen for a few years so they may have something even better now. It is a serotonin antagonist so when I first started taking it, I was really wiped out. I basically slept the whole weekend but I adjusted fairly quickly.

I hope your arm is feeling better soon.
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Old 06-28-2013, 02:19 AM #3
KathyUK KathyUK is offline
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Hi Kim

Thanks ever so much, I will ask the GP about it today. I'm finally getting to see him lol, it's been a nightmare trying to get a face to face appointment.

Slightly off topic but I have done a bit of animal rescue/fostering over the years and a situation came about very quickly yesterday that has had an effect on things. My daughter was asked by a friend to take in a badly injured kitten that had been sat on by its owner and probably had at least two broken legs from the description. We traipsed across to the owner's house last night to see if they would let us help. They denied having the kitten (and we saw no evidence of it being there, so sadly presume it has passed away) but they asked us to take a mum and another kitten in instead (who were stinking filthy). Mum has just had an emergency spay as she had got pregnant immediately after finishing nursing the kittens. It hadn't been our plan but we have got both out. One healthy kitten is already in a permanent home with my sister and mum is recovering here. Sadly we can't keep her permanently but the little bitey nervous ball of tortie fluff has turned out to be a darling sweet little attention seeker who has spent the night asleep on my pillow next to me purring and gently pawing my face when she wants a stroke. Having her chill out with me has been just gorgeous. I wish we didn't have to home her out but we do have someone interested. She can be my therapy cat in the meantime while she gets back up to health. Baz nicknamed her Pea (cos shes diddy, get it?), my daughter nicknamed her Brie as she stank (the house was minging) but she has been getting called Toots with me because of her ginger toes and how she uses them to get attention.

Sorry to the non-animal folks, didn't mean to wander off there but I am just relieved they're both out of there. We have one of Connie's friends watching out for signs of the broken kitten just in case they were hiding it so we haven't given up there either xxx
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Old 06-28-2013, 02:47 AM #4
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Aww bless, that's a fab thing to do - I'm an animal person too and it's so upsetting when animals are kept in terrible conditions. At least they let you take the mum and kitten, although you do hope that the broken kitten died quickly after such terrible injuries. You have given the two you rescued another chance, and that must feel great Is there no way you could keep Pea? Sounds like you two have a bond, and she would be great company and distraction for you with everything going on....

Good luck with your GP, hope you have a productive and helpful visit!

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 06-28-2013, 11:01 AM #5
KathyUK KathyUK is offline
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Hi Bram

Oh I wosh we could keep Pea but we have two special needs cats already. She is gorgeous though.

Went to the GP today, blood pressure is 148/95 and he says that's not high enough to make me faint or give me migraines. I asked him if it could be ANS side of CRPS and he thinks that's most likely. Mind you I don't think anything's that easy to pinpoint when it comes to migraines without an obvious trigger. He said if I continue to faint he will see if I need an ECG but has had a listen and things sound fine. He mentioned vasovagal syncope. He has given me sumatriptan for stopping a migraine before it gets properly going. He has also promised to sort out OT to get me a wheelchair assessment. He suggested we get a home BP monitoring machine so we went to the chemist and bought one that seems accurate to his reading. I think that's everything!

How are you doing today guys? xxxx
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Old 06-28-2013, 11:17 PM #6
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Quote:
Originally Posted by KathyUK View Post
but she has been getting called Toots with me because of her ginger toes and how she uses them to get attention.

Thank goodness it's not because she farts !

I'm from across the pond and colloquialisms don't always translate well, but we use 'tooted' as a euphemism for 'passed gas'.

Enjoy the pet therapy as long as you have her !
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Gee, this looks like a great place to sit and have a picnic with my yummy bone !
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Old 06-29-2013, 05:49 AM #7
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Hi Kathy

Those poor kitties! It was so good of you to save them, especially since you know you can't keep them. I'm sure you knew from the start that it was going to be tough to give them away because it is impossible not to fall in love with them. I think it is wonderful that you were willing to put yourself through that even though you have so much else to deal with.

While you have them with you, make the most of the therapeutic effects of little Tootsie-Pea's cuddles. I think that having a warm furry little creature to cuddle and love is really good for us. For me, nothing cures stress like cuddling with my little puppy princess. (She's old but she will always be my puppy.) How could I stay stressed with this warm furry little puppy curled up next to me snoring?

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Old 06-30-2013, 11:55 AM #8
KathyUK KathyUK is offline
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Oh I totally agree, pets are the best therapy as long as they're the right pets in the right home. We have two cats already but they're quite independent (despite both being special needs indoor cats). Pea is the first one to have bonded with me even more than I have with them. We are going to see how well they can be introduced (she has stitches in at the mo so is separate) and then Baz has asked if I'd like to keep her. Well she is only half a cat size wise lol. We'll see, I'm not sure yet as obviously a big decision and I should use my head not my heart. But she's so lovely. Small and very placid and creeps up onto my pillow for cuddles through the night. Just all depends on how she gets on with the other two really. If I was her I'd never want another bloke near me again lol.
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Old 06-30-2013, 03:05 PM #9
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Quote:
Originally Posted by KathyUK View Post
Oh I totally agree, pets are the best therapy as long as they're the right pets in the right home. We have two cats already but they're quite independent (despite both being special needs indoor cats). Pea is the first one to have bonded with me even more than I have with them. We are going to see how well they can be introduced (she has stitches in at the mo so is separate) and then Baz has asked if I'd like to keep her. Well she is only half a cat size wise lol. We'll see, I'm not sure yet as obviously a big decision and I should use my head not my heart. But she's so lovely. Small and very placid and creeps up onto my pillow for cuddles through the night. Just all depends on how she gets on with the other two really. If I was her I'd never want another bloke near me again lol.
Yay!! Fingers crossed they all get on....

Bram.
__________________
CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
.
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