I am surprised that no one has found their way here yet; this site is turning out to be lots of fun - but it ain't the same without the RSD forum members!

Since the JL site has vanished, this is rapidly filling the gap, some forums have a very high percentage of the original members....but not this one!

I check in here everyday, in case anyone's around - leave a message if you come by, I need to talk to someone about "spread" and what it feels like.

Also, does anyone have Vicc's email - I sent a message to the addy I have for him, no reply. I'm a bit worried - maybe someone could PM me with it?

all the best

Just Updating

Roz!

Oh Roz, I'm so pleased to hear from you I could kiss your feet!
xxxxxx there you go!
How are you? If I remember correctly, you had surgery for a brachial plexus problem? And if memory serves, you also have TOS and fibro? I do hope you're doing well. Did you ever move to that cabin? It sounded lovely.

Thank you for that link - whatever is going on with me, it's either RSD spread or problems arising from spinal stenosis. I was recently MRI'd and they found both stenosis and cervical spondylosis. Using my right hand (I'm right-handed) is now very painful; since I work (got to) this is a very alarming development. Oddly, the original RSD hand is much better, though. It all started with a fall, left wrist Colles fracture with ulnar splintering, 2 years ago. If I regret anything, it's that fall - my health hasn't been the same since then.

There is one odd thing. After the first 6 months, the colour of my skin settled down, and I don't have discoloration in either hand. The doctors don't know whether this is RSD in the right hand, or some form of carpal-tunnel type thing resulting from nerve pinching...

Anyway, I'm in the middle of a job right now, a huge drawing of a Chinese mountain scene for a hotel (don't know why they picked me, I'm not Chinese, living in a place 98% Chinese - still, I'm not arguing, it's work...) so I'm gripping a pencil hour after hour, day after day and it's excruciating! Neurontin helps, but not much and I can't afford brain fog right now.

I've SO needed to talk to someone who understands...thank you so much for replying, xxxx.

You know what it's like in the workplace - you've got to pretend all is "just fine" or they give up on you. And friends are great but you know, they don't feel it.

Tell me what's been happening to you - and bear with me, the time difference between Hong Kong is 13/16 hours - so my replies may be erratic.

Love you, sweet lady, thanks for being here - oh yes, why the buckwheat (nice name)?

all the best

I talked to Vic yeserday on the phone for almost 3 hours lol, he was keeping track even though it wasnt costing anyone. He is doing great! I am so proud of him I could almost float

I will see what I can do about getting him here. He is hanging out at the canadian forums ??? whereevr that is? I was sooo glad to see your email Pat, and came straight on over here soon as I read it. ((((Big Hugs)))) I am having some spread issues I will share in another post so I dont wake my wife. Im so excited about finding all of you im kinda hammering the keys lol.

(((Roz)))!! I hope you are doing well, and always remember you are on my mind and in my heart. Been wondering how ya been, and now I get to get caught up with everyone

Love ya both
Allen

Hi Artist,
I hope thes lines find your pain levels down. I am happy to hear your hand is doing better.

A Neuro. Surgeon's opinion I saw about RSD is that the cells can change in our spinals cords and brain. That is just his opinion, I saw him quite a while back. But I also have some cervical spine issues going on as well. Have you had a CT scan? Someone on the Brachial Plexus Forum suggest Steriod Injections, I am going to try and get them. Here is the link.
http://forums.braintalk2.org/showthread.php?t=773

I spoke with a lady who's husband has RSD that went into remission he had it on the whole right hand, limb and shoulder, it was caught early. But she told me the RSD reversed itself. Like his hand was the first to heal and his brain the last.

Your art work is beautiful, I saw your website. I love it, it would look wonderful everywhere. Love, Roz xxxx

Thanks, Roz, for your kind words.

No, I haven't had a CT scan. They did an MRI in late spring - that's what showed the spinal stenosis, my spinal cord is pinched in just like an egg timer, and the amount of space for it to pass through from C4-C6 is almost nonexistent. Very alarming.

Apart from permanent headaches and severe stiff neck, I just feel all the time as if I'd like to take my head off, it's so heavy! I think I'm in for the long haul here, but to my surprise exercise does help quite a lot.

I'm also doing the "tucking in the neck" thing, doc says I'm beginning to get a turtle neck.

I really don't like taking meds, so I'm on small doses of neurontin which helps the RSD arm. But I'm taking too many cafergot - supposed to be for migraine and you shouldn't take too many, but I can't get through a day (or night) without them. Gotta find a solution to that.

Thanks for the link; I'm scared of steroids..and blocks...but it may come to that.

Still, to all intents and purposes I look OK, function relatively OK..it's just all so damn painful!

Anyway, I like this new forum, it's got some really interesting and funny characters in it, and I'm enjoying seeing it sort itself out. When/if BT1 returns I shall be with both.

As someone else in the forum said - it never hurts to have a spare!

You never said if you moved to that cabin? Did you?
hugs,
all the best

Someone could have just told me where to find everyone...but NOOOOO, lol...i'm the last to know everything. And then to register again, i'm losing everything...lol...well HI all, glad to find you.

Hi Dolphin, hi Roz -

Dolphin - there you are, whoever you are, delighted you made it here! Yeah between us we only had very few emails..so it's been a slow get-together but here we are. I for one am loving it. Who were you in your previous incarnation, then? (You can PM if you don't want to broadcast it...) Great to meet again!

Roz - thanks. Very good luck with your appointment tomorrow, I hope all goes well, crossing my fingers...Well, my next doc's appt is end of October, but frankly you can see the cervical spondylosis clearly in other things (ultrasound/xrays) yes, not so well in the MRI, although the spinal stenosis in that is crystal clear. I'll send you some turtle neck exercices - they really help and you can do them any old where, sitting in a chair. May stop us looking 120 (oi vey, too late all ready...)

take care and all the best to you both.