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Saw The Hand Therapist Today, Update.


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15 replies to this topic

#1 kiwimum03

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Posted 22 November 2006 - 04:31 PM

Hi everyone, I thought I would keep you updated on the hand therapist I was going to see.
She thinks I do definately have Carpal Tunnel in both wrists, but also thinks I have some other kind of nerve problem caused by swelling/inflammation coming down from my elbows that affects my little fingers. I guess will have to talk to the rheumatologist next week about that.

She noted the swelling in the base of my thumbs, and did all the regular tests.
And she gave me the groovy wrist/hand splints to wear at night and whenever I feel the need.
I have to wear them every night for a month and then go back and see her....I was kinda hoping for a lovely hand massage.........nevermind!

I have had soooo much trouble with my hands this week, so annoying. My fingers have swollen up like sausages and my thumbs are so painful, I really hope this helps, but she did warn me, as she thinks there is something else going on that it may not help as much as I want.

anyhoo.......thats all for now, See the rheumatologist next Thursday will let you know how that goes,

take care everyone,
Hugs,
Irene

#2 janey

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Posted 23 November 2006 - 04:31 AM

Irene,
Thanks for the update! Sounds like you have a good hand therapist that wants to really help. I can say from experience that the wrist splits did help me tremendously after a few weeks of wearing them at night. The only time during the day when I wore them was for long stints at the computer. I probably ended up wearing them constantly at night for about 4 months, but then the pain went away and haven't needed them since. That was about 2 years ago. I hope they help you as well. Let us know what you find out at the rheumatologist appointment. I hope it's nothing that the therapy can help with.
Big Hugs,
Janey

#3 Sweet

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Posted 23 November 2006 - 05:22 AM

Hi Irene,

Thanks for the update. What you are describing sounds very familiar to what I've been expierencing and the actual diagnosis ended up being "Thoracic Outlet" Ask your doctor about it. Treatment is physical therapy and the braces you described. It's miserable!

I thought I was getting better over the past week, but last night it kicked in again wit a vengence.

Hang in there my friend!

Love Pam

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#4 kiwimum03

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Posted 23 November 2006 - 03:46 PM

Thanks Pam and Janey,

I certainly do hope the braces work. I haven't been wearing them at all today, I find I just can't do anything with them on. I have quite small hands and they just don't allow that much.

I also had trouble sleeping with them last night. I hope I get used to them, as I have 4 weeks of wearing them until I see the therapist again.
I just couldn't get comfortable, and my hands a killing me today, I hope its not from the braces........but the rain clouds outside.

Pam, I will ask the rheumatologist next week about the Thoracic outlet and see what he says.

Hugs,
Irene

#5 LoriNC

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Posted 25 November 2006 - 05:02 AM

Irene,

Your desription of the involvement of your hands and diagnosis of carpal is just like my history.

I wor hand splints evry night for 2 years and wore them all day while at work - really hard to type but you get used to it.

When I only had carpal tunnel I reaped great benefits from hand therapy. The best thing to do is to religously perform your excercises and wear your splints.

Once the extensive swelling started I started on the adventure of diagnosis and 3 months later Scleroderma was diagnosed.

I have diffuse scleroderma nd in the words of my rheumatologist - It is marching along faster than a speeding bullet. I continued hand therapy until my skin became so tiight that I have hands in the form of a claw.

One of the most important things I learned from my therapist was to protect the webbing between my thumb and fingers. if your hands become as involved as mine the webbing being partially moveable allows me to "pinch" items between my thumb and index fingers.

Best of luck with your therapy.

Lori

#6 Guest_Sherrill_*

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Posted 25 November 2006 - 10:37 AM

Lori,

Your hands sound very like mine! They are both "claws", though luckily my thumbs were not quite so involved, and I use my thumbs with my bent over index fingers in a pinch grip as you describe. You are right about the webbing too. My physiotherapist had me bring my thumbs over the palm of my hand to reach as far as possible. Preferably touch my little finger! :unsure: This helps stretch the webbing between the thumb and little finger.

Recently I have found I have more movement in my hands, although the fingers are still as bent. But I can spread my fingers more, and also I can passively wiggle the top joints of my fingers I.e. I can grasp the top joint and wiggle it up and down. Oh to be able to do that actively, but nevertheless it is progress.

The skin on my hands used to be thick, particularly on the fingers, but now it is very fine, to the extent I have to be careful I don't damage it, which can happen easily.

I have one thumb considerably shorter then the other due to bone resorption, and the end joints of my index fingers are also shorter then they were.

When it all started with me, 10 years ago, it was also thought I had Carpal Tunnel Syndrome, but after an EMG they decided I didn't. However, I understand that the swelling of the connective tissue, caused by the scleroderma, can inflame the carpal tunnel and cause the same problems as the syndrome.

If you like I will post some photos of my hands in my album, and you can tell me if your's are similar.

#7 kiwimum03

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Posted 25 November 2006 - 10:38 AM

Dear Lori,

thanks so much for your message, you have really encouraged me to try harder with the splints.
I think I am a bit discouraged as since I have been wearing them for the last 3 days my hands have been so sore. and of course I am wondering if the splints are causing it, but we do have alot of bad weather and that always affects my arthritis.

I also have alot of swelling around my thumbs and the webbing you mentioned, its been like that for about 4 days, and the mobility in my left thumb has declined, that kind of worries me.

I do not have a diagnosis yet, and I am hoping that my visit to the rheumatologist on Thursday will lean more towards something concrete. Of course having a diagnosis doesn't change my symptoms, but in a sense will give me some peace.

Whatever is happening to me, seems to be coming on quite fast, the changes since Feburary and even over the last month are noticeable, and I am quite worried.
I guess its the fear of not knowing what I am dealing with. But of course every wonderful person in this Forum has gone through or is going through this as well.
HUGS to you all!

Thanks again for your message, I will endevour to wear the braces during the day too.

Hugs,
Irene

#8 Sweet

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Posted 25 November 2006 - 11:23 AM

Irene,
I was just thinking of you today and wondering how you are doing. Please fill us in as soon as you can after your appointment on Thursday.

Much love,

Pam

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)

#9 kiwimum03

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Posted 25 November 2006 - 03:22 PM

Hi Pam

thanks so much for thinking of me!
I will definately let you know how my appointment goes on Thursday, my week won't be able to go fast enough.
I have having a bit of a downer day today. Because of my hands I have been having alot of trouble changing my baby, which upsets me and I have to ask for help, which I don't like to do, don't mean to feel sorry for myself, but just frustrated.
So it is really nice to know you are thinking of me.

I hope you are doing okay this weekend,

Big hugs,
Irene

#10 Guest_Sherrill_*

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Posted 25 November 2006 - 03:38 PM

Hi Irene,

I am extremely interested to hear how you get on with the rheumatologist. Particularly since I recommended him. :)

I'm sorry to hear that your hands are playing up. I can really empathize with that, and am very grateful that they no longer do that! This too will pass!

All the very best for Thursday!! I'll be thinking of you.

#11 LoriNC

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Posted 25 November 2006 - 05:48 PM

Sherill,

Your post gives me hope that my hands might become a bit more useful. If you could post pctures that would be great. I rarely meet people with extensive hand involvement early in the course of the disease. Are you on any immunosuppresants?


Thanks Lori

#12 Guest_Sherrill_*

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Posted 25 November 2006 - 07:43 PM

Hi Lori,

I have posted 2 photos of my hands. These were taken a few years back, but they still look much the same, though as I said, I do have a bit more movement in them. I can spread my fingers more now, put them together, and also move them separately a little, but I can't unclench them yet.

At present I also have 4 bandaids on various fingers with small calcinoses. Ugh! I'm hoping with summer coming they may improve. They usually seem to be worse in winter. May be something to do with circulation. Just something I've noticed for myself.

No, I am not taking any immunosuppressants.

Here's the link to my story if you'd like to read it:
http://www.sclero.or...ill/a-to-z.html

#13 kiwimum03

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Posted 25 November 2006 - 11:01 PM

Hi Sherrill!

I will definately post on Thursday, I am very confident the rheumatologist will figure out what is wrong with me.......it may take a while, but he seems like the kind of person you instantly trust when you met him doesn't he? thanks for recommending him.

Yes my hands are pain right now, but it seems so many people can sympathise with me. the other thing that I have noticed in the last two days, but didn't really pay any attention to until tonight was that my skin on my forearms and tops of my hands is sore.

This is something new. I keep moisturising, it doesn't look dry, but it feels like the skin is sort of burn't or cracking from dryness, even though you can't see anything.

I did get a bit of sun a couple of days ago, and I got a bit of colour on my arms, but I wouldn't say they got burn't, but they felt like they were burn't to a crisp.
Its this something to do with scleroderma?

Also when I type the skin over my knuckles hurts and feels like it is going to crack but isn't.......its not unbearable, but noticeable.
The skin doesn't look tight, although my hands have been puffy lately, but now they look more crepy.
I hope all of this makes sense, it doesn't actually hurt when I touch my skin, only when I "move" my arms or hands and the skin moves.

okay enough ramble time for bed,

Hugs,
Irene

#14 MaryFanPhilly

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Posted 26 November 2006 - 03:24 AM

Hi Irene, I'm with everyone else on this post, particularly Lori and the webbing between your thumb and forefinger... I am kind of in between you and Lori and Sherrill- my hands are stiff and the fingers are starting to contract but I'm not in a 'claw' yet. The hand therapist opened my eyes, as I said in my last post on the subject. Did she give you any stretching exercises? She also did something that was interesting and helpful. She had me extend my hand as far as I could, then she drew lines around it on a piece of paper, just like you'd do for a child. Then she told me to periodically hold my hand over the paper model so I knew if the contracting was progressing. Try it, and keep the paper to monitor any progression. Lots of luck and Love, Mary in Philly
Diffuse sclero; diabetes; hypertension; GERD with Barrett's

#15 kiwimum03

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Posted 26 November 2006 - 09:24 AM

Hi Mary,

The hand therapist didn't give me any exercises to do.....which I am surprised at, she just told me to wear the braces at night and as often as I could. And to keep my hands mobile, but no specific exercises.

I do try and stretch my hands alot myself as I feel them getting stiff, perhaps I will phone her, as she said I could call with any questions........I should have asked while I was there, but I just didn't think of it!

I will definately do a paper model of my hands, that is a great idea!!!!
Thanks Mary,

Hugs,
Irene

#16 Sweet

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Posted 26 November 2006 - 10:25 AM

Hi Irene,

Don't feel badly about feeling sorry for yourself once in awhile. I can totally relate - each time I have to ask for help with something that I can no longer do, it feels like Im losing a bit more of myself each time. However, learning to deal with that is very important I feel, or in the years to come we won't feel in control of anything at all. Those around us love us, and want to help. Also symptoms seem to come and go and so I try to remember that whatever it is I'm unable to now, may not be permanent.

Looking forward to hearing about your appointment.

Love Pam

Warm and gentle hugs,

Pamela
ISN Support Specialist
International Scleroderma Network (ISN)