NeuroTalk Support Groups - Where are you all?

NeuroTalk Support Groups (https://www.neurotalk.org/)

- Reflex Sympathetic Dystrophy (RSD and CRPS) (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/)

- - Where are you all? (https://www.neurotalk.org/reflex-sympathetic-dystrophy-rsd-and-crps-/745-where-are-you-all.html)

Where are you all?

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 :)

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 :D

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 :D

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

I Made It!!! WHEW!!!

Hey Everyone!!!

Here! Here I am!! Man, am I glad to see you guys!!!! (Gee.....think I should maybe kinda sorta chill out with the exclamation points?? ROFL) I almost fell out of my seat when I saw that MARK was here!! :eek: (Oops...sorry...those ones slipped. LOL). Where have you been? I sure have missed you.

It is good to see you too Artist. :) Looks like you were kinda left knocking around in here all by your lonesome for a bit while folks were still wandering around in the dark, looking for a flash light to find their way here....or somewhere. Know what I mean? I am really glad that DocJohn set this place up for us. Like you...If/when Obt comes back online, I will probably go hang around there for a bit....but I think that I will probably look at it more like my "spare" than this place. If that came out sounding (ahem..or "looking", lol) like I meant it. Hope it did, or that you understood at any rate. :) I am sorry that I didn't post sooner....but I was checking things out, and kinda got caught up reading in the Forum Feedback a lot. Kinda got side tracked there...and shouldn't have. Sorry for that. I am very excited to see how this new community is going to grow and develop, and how folks will like the different (and in my opinion better and more normal) kind of moderation. Don't you think?

It is good to see Roz and Allen here too!! :) Didn't want to leave you guys out, because I have missed you both too! (Gotta keep an eye on those exclamation points creeping back in, don't I? LOL) I might not have been posting much for the past little while on OBT, but I had been lurking...and reading....and trying to keep up with all of my friends and folks that I care about. So, I really missed you guys, and wondered how you where doing, and hoped that you all (and everyone else too,) where doing Ok, and had been able to keep in touch with at least some folks for some type of support without the Board that we all had come to rely so heavily on for so long. I know that I sure have missed it. Kinda like that line from that song (can't remember the title..or if it IS the title, let alone who signs it right now, as my brain is mush); You don't know what you've got, until it's gone. LOL

Artist...I am not sure exactly what questions you have about Spread? I have had it happen, and I know it caused me to have questions too. It sounds like your spread was of the "mirror" variety? You have to please excuse me, because my brain really is mush these days (have had a pain increase, and am trying to get some procedures scheduled to hopefully help calm things down), and I don't have my "Cheat sheets" here on this forum, where I can go and look back to check out info to see if I am remembering correctly. Your RSD is upper body, and always has been? So, your possible spread went from left hand/side to right hand/side? Do I have that right?

Mine was from lower body to upper....all on right side. Not that it makes much difference, other than that I know how crappy it is to have something affecting your right hand when you are right handed. I can't imagine how scary it is to have that happen when you are an Artist though! ((((Hugs))))!

It has been my experience that the spread site was different than from the original site. In my case, it has never been as bad pain wise - as in constant high level of pain - but will have dramatically quick jump up in pain in relatively short time when I am using it. I figure, it is because it is my hand, and it is used different than my foot? Don't know...because I don't have any experience with RSD in other hand. But, the other symptoms act differently there too and differently from the lower body. It is all very strange...and lots of the time I look like patch work person, with strange warm and cold spots that make no sense (as in Right hand can be SUPER hot, but right foot/leg can be ice cold [or visa versa]...while rest of me is "normal", whatever that is).

I do think that part of the reason why my upper body RSD has never been as bad/painful/whatever (don't get me wrong..it still HURTS...but it just isn't like my Lower body), is because I got IMMEDIATE blocks done after the injury that caused the spread to happen. I am talking within about 3 days. That is because I just so happened to have a doc appointment the next day (or the day after... anyway..it was all really soon). He saw what was going on..and BOOM! I was in for a block. No screwing around. I really do think that it made all the difference in the world.

I probably didn't answer what you needed.....so, if I can help..Please feel free to ask. I promise to try to not be so wordy next time. :o LOLOL..as you see..some things NEVER change. :rolleyes: *sigh..I do really try to not write LOOONG things...it just always works out that way.

Anyway..I am really glad to see you guys here!

(((Hugs)))
Jose

PS..is this text size Ok? Or should I use a bigger one? I just didn't want to look like I was hollering at everyone all of the time, and that is the difference between a 2 (this one) and 3 (the one that I always used before). Please let me know if it is hard to read, and I will change it in a zippy!

Jose! Hallelujah!

Joselita the Wise!! (((xxxxxx))) - this is so exciting just can't help using all those exclamation marks - I'm exclaiming!!! Yeah!!!!!!!

I *really* gotta go to bed but just before I do - your purple prose is perfect (and never too long, heavens!) size is great on my machine.

Just quickly, you picked up lots of right stuff from my post, yes, it's a different kind of pain, arms - I'm so confused - but more on that tomorrow.

And yes, there was me all on my little lonesome, calling out into an empty echoing hall - I was so pathetic! Felt like I'd gone to a party and no one came! What a loser! Little Johnny Nofriends! :p :D

Right, made my day, you and Karibelle, same day...wonderful!
xxxxall the best

Artist, it is good to see u back around here. You posted so little before BT went down. I have the cervical issues also with the pinching of nerves leaving the spine and I had several epidurals.
They helped me with my RSD pain too. I hope something works out for you.

Jose, it is good to see you back with your not so short posts...lol
You are full of information. I have spread too, with the pain being less to the spread site as you mention. I read that is not uncommon. I too got the blocks much faster than the original site.

Allen, I am so sorry to read that you are also having issues with spread.
My doctor is great and quotes Maleki on that as being so 75 - 80 % of the time. Many others wrote on my reports that it is rare to spread to all 4 extremities. I wish they would stop sending me to doctors who know nothing about RSD or see 1-2 patients with RSD/year.

It is getting chilly so I am going undercovers now.
I hope all have a great weekend and as painfree as possible.

HOPE :D