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Jeannie McClelland

Dem Bones and other bits

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Sigh, I'm being weaned off prednisone again. I've got to tell you, all sorts of things hurt more than I remember them doing. After having a serious moan to my rheumatologist, he sent me for an evaluation. It seems like the multiple compression fractures in my back have caused both kyphosis and scoliosis. The curvature has apparently knocked the first rib on the left out of alignment and it's compressing the artery and making the circulation on the left side worse. (I did notice my left hand is always colder than the right.) There's some nerve impingement too. Let's see, what else. Oh yeah, tendinitis and most of the shoulder muscles "have flared up" (left side) and bursitis in both hips, worse again on the left side. Nearly forgot, tendinitis in both hands. To top it off, I've got frizzy hair. Just thought I'd throw that in there. :lol: Lots of PT coming up, but they don't think they can do much for my hair.

 

Could you guys slow up the line dancing? :emoticons-line-dance: I can't keep up.


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Oh, Jeannie, I'm so sorry that you're suffering so much pain and discomfort.

 

My mother has kyphosis caused by osteoporosis and it does impinge on her breathing. I expect being weaned off the prednisolone isn't helping with your aches and pains; I know we none of us like steroids but they do help with alleviating a lot of the pain and discomfort.

 

Still I can empathise with the frizzy hair; if I'm not very careful any sort of damp weather makes my curly hair go into ringlets, so I resemble a sort of middle-aged Shirley Temple!! :o :lol:

 

I do hope the PT can help you feel a little better.


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

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International Scleroderma Network (ISN)

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Hello Jeannie

 

I have to ask if your case of frizzy hair is likely to be...contagious? I am afraid that it can be very difficult to recover from and overcome in the long run. People also tend to have very little sympathy for it as they don't understand it, are afraid they might catch it and rarely suffer from it themselves. :lol:

 

Seriously I am sorry you're having multiple issues all at the same time, what's that expression misery loves company? :angry:

 

I hope the physical therapy brings you some relief and I think that :you-rock: !!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

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(Retired) ISN Sclero Forums Assistant Manager

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International Scleroderma Network (ISN)

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Hi Amanda,

 

No, they said the frizzy hair wasn't contagious. They called it Sudden Onset Acute Frizz and said it's part genetics and part environmental trigger (single digit humidity lately). I guess it isn't a scleroderma symptom either. :P


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Hi Jeannie,

 

Oh my goodness poor you, not frizzy hair, don't you just hate bad hair days!!! The rest I am sure you can deal with in your usual stoical and funny manner, but the hair.......

 

You have my greatest sympathy lol.

 

Take care

 

Sandy B

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Oh my,Our Dear Jeannie...

 

If only...

you could take Prednisone and be able to STAY on it FOREVER!

 

:sorry: you're feeling bits & pieces of yourself you haven't

had pain with for awhile. Yet, I hope the pain eases up a little,

once the warmer temperatures come about.

 

I have mild scoliosis and my RIGHT hand is always colder than my left :P

 

As for your "SOAF", I'll feel bad for YOU...if you'll feel bad for me, as

I have SAABH (straight as a board hair) ;)

 

Really though, my friend...sounds like a day at the Spa would help you out a bit,

would it not?!

Sending Soft Hugs your way....


Special Hugs,

 

Susie Kraft

ISN Support Specialist

ISN Chat Host

International Scleroderma Network (ISN)

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Sorry to hear you about your aches and pains and especially your hair, nothing worse than a bad hair day that goes on and on!

 

:happy-dance: heres a bit slower dance so you can keep up!

 

:spoon: and here is one of my spoons, Im afraid I can only spare one at the moment cause I seem to keep running out of them! Hope things get better soon, and if not a spa day then maybe a nice long hot soak in the tub!

 

Jean

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I like the wee birdies! Not only are they built like me (um, plump~) and are moving kind of slow, they have feathers! Feathers don't frizz!! :woohoo:


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Jeannie, can they do anything for any of the fractures or tendonitis? Like, could you pick the most painful or bothersome area, and somehow get it surgically enhanced or useful P.T. for it?

 

I'm sorry, I know the frizz is totally hopeless, but I'm hoping there might be some help for the rest of it.

 

I'm going to call for a group hug here, however, everyone please remember to even take the hugs easy for Jeannie, okay?

 

:emoticons-group-hug:


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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The only semi-good thing about your pain is that hopefully your body will adjust some over the next few weeks and it will hurt less. At least that is what happen to me when I reduce or go off meds. My body yells at me at first then settles into nagging. Maybe it ups the natural steroids to cope or simply I get numb. But it usually gets a bit better although not as fine as that outside chemistry can make kit.

You've had a rough road lately. I hope it smooths out for you soon.

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Here's another (very soft and gentle) :emoticon-hug: for Jeannie!

 

 

 

And a couple of :spoon: :spoon: for good measure! ;) :emoticons-i-care:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Dear Jeannie,

:temper-tantrum: I am so sorry you are having pain AND hair issues! :temper-tantrum:

 

I will be on prednisone the rest of my life as it is the protocol for my transplant. I have read of people who have had 4 hip replacements since their transplant. When I was at the scleroderma specialist she mentioned a hip TRANSPLANT! :emoticon-crying-kleenex: Never heard of it, has anybody else?

 

miocean


ISN Artist

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Hi Miocean,

 

Good grief, a hip replacement? And somebody with four of them?!! I guess it could be due to the prednisone weakening the bone/supporting structures of the hip or perhaps it is a consequence of being on dialysis for so long? I have a friend who is now 12-years (I think) post-kidney transplant. Hers was due to poly-cystic kidney disease and she ended up with very brittle bones before the transplant as a result of the kidney disease. No hip replacement, though. I'll see if she knows anything about this and let you know.

 

Warm wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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