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Richie–
Totally curled? Were you able to open them up and close them into a fist? I can't do either–they're “frozen” in place it seems. A few fingers move a little easier than other ones. I stretch them at night, but to hold them up in a “praying” position isn't even close–I'm afraid the longer they stay in this position (about a year now) the less chance I have of them straightening….any comments? Everyday tasks are awkward. Need my hands back! :angry:
Karen
Annie–
Well my hands are far from subtle….very curled from knuckles to end of fingers….but I am hoping that will get alittle better as other parts of my body are slowly improving and it seems odd how this is happening–inside of elbows, behind knees, midsection–and the most important part is that I finally feel good. Blood work has been stable–I went through a period of anemia, transfusions, upper GI procedures, etc. Hopefully that is behind me….but I have places on my arms and legs which have started softening…would love my wrinkles back!:D Thanks for writing and keep in touch….I will, too.
Karen
I also have the curling of the hands and have just been lazy about stretching them. I use splints at night but not sure how much they're helping.
What is AP therapy? I've been to an OT… but not sure of AP.
Also, has anyone done PUVA therapy? I've heard it's helped many people.
Hi KelliK,
Thank you for posting…There are different ways people recovering from SS have regained the use of their hands. What worked best for me was the old Ayn Rand adage “form follows function.” As I started to do more things for myself (eg making coffee, driving, typing), I tried to make it a point of exaggerating my finger flexion/extension. Although this worked best for me, I always wondered if my recovery would have occurred sooner had I done specific OT exercises…
Annie_Hawaii,
I wish they considered toes! That would really help. I am soon trying again to scan my fingers, if they succeed it will be either becasue they changed their machines or because my fingers got better!
Karen,
Dubai is a great place, really. I love it – have been here for 10 years and want to be here for another 10 at least! My hubby lived here for 22 years! It IS hot, cannot see the sky due to haze/sand in the air, not too healthy hence many actually suffer from Vit D defficiency, like me, believe me or not, asthmas etc! But “winters” are great. The climate is great for me but have to be carefull with air conditioning!
I don't know why but my fingers never curled (thanks God!) they just got hard, stiff, unflexi and dry with cracks, sores, ulcers and other niceties I listed before. I have no probs typing apart when one of fingers is inflammed. It takes me ages to learn to use that finger for typing again afterwards! :blush:
I can do the “praying position” but I am painfully aware of it when I do it! I cannot make a straight angle in my wrist area and that's where I am plannng to gauge my progress from! As well as from the softness of my nose tip, how far I can stick my tongue out and how well my bottom eye lids pull down :). What fun, eh!
Cheers!
Aynur (that's my real name pronounced “eye-noor”)
[user=2617]KelliK[/user] wrote:
I also have the curling of the hands and have just been lazy about stretching them. I use splints at night but not sure how much they're helping.
What is AP therapy? I've been to an OT… but not sure of AP.
Also, has anyone done PUVA therapy? I've heard it's helped many people.
Kelli – AP stands for Antibiotic Protocol. 🙂
Kelli and Karen – Would you both consider taking pictures of your hands as they are now to save for your “before” and “after” photos? Most of us didn't think to photograph the changes and wish now we had. 😉
Take care…..kim
As an OT, I have to agree that movement and functional activity is good but of course, your ability to move is affected by any contractures. I did get some OT for my hands (I am a peds OT – not hands OT) and even had splints in my early days but found that I could not tolerate wearing them – my fingers would turn white as if circulation was being cut off, if I wore them for more than 5-10 min.
Started AP and have not worn splints since and my fingers are better. Like Jeff, my index and middle fingers are the most severely affected but I am very functional. When first diagnosed, I could not open baby food jars, water bottles, button, put on earrings, nor put up my daughter's hair in pigtails. I can do all of those tasks now. I don't know if my hands will ever look normal but for me, function is more important right now than looks.
Lynne and Annie, how interesting about the fingerprints. I had difficulty with scanning my index finger to get into Disney World's gates! I think I finally tried my thumb and that worked better or the guard would wave me through – I had a legitimate ticket!
Another idea to track your progress is to spread your fingers straight and wide apart on top of blank paper and trace the handprint. If you make progress with straightening (“extension”) and spreading them out (“abduction”), you'll be able to see the changes. Don't forget to date the paper.
I should play the piano more (I hate doing exercises) – as it really forces me to extend and abduct my fingers, but having a 4 yr old and 6 yr old and my job keeps me busy!
O.K. K.K.and K. the race is on to see wich one of you will get your hands back first. hehehe.When the 3 of you reach the finish line I think we will all have an online party.
Good luck and start excersising.
I am back teaching ballet so if I can do it ,so can you.
XXXXAynur,
You are lucky your fingers never curled…mine drive me crazy and I am self-conscious about them. Want my wrinkles back..and I'll never complain about them again! I live in Maine so the climate in winter is horrible. We've had very humid summer this year so that's been not much fun. My friend said the air was very foggy or something…not clear..some of her pictures were hard to figure out. She said there were alot of shopping malls there. Well thanks for writing back..keep in touch…I will, too. Think positively!!
Karen
Reading your entries is just like reading about myself!!!! I have the exact same problem with my hands and have been on the AP for about the same time. I have been told that I have to be pateint, which of course I'm not!!!! I want my hands back, I want my life back 🙁
[user=2500]Meggs[/user] wrote:
Reading your entries is just like reading about myself!!!! I have the exact same problem with my hands and have been on the AP for about the same time. I have been told that I have to be pateint, which of course I'm not!!!! I want my hands back, I want my life back 🙁
Good Luck Meggs!
Have your fingers curled?
My fingers are “frozen” in a curled position—can't open them and can't make a fist–stuck in the middle
Hi there,
Yeah my fingers are curled, I can still drive though thank God! I try to stretch them out as much as I possibly can and I just keep praying that the antibiotics work. I just came back from the docs, I had my clindamycin injection, this time it hurt 🙁 not too much though!
Luv Meggs:D
Hi Wayne,
I have a feeling I have heard of your success story with the AP, I am seeing my doc and her naturopath in Melbourne and am on pretty much the same meds as you are, any connection there??. Here's another coincidence, I was a nurse and on my way to becoming a Paramedic, now that has all changed. I wish I had of gotten onto this treatment early in the game, I am positive I would be far better. The disease has progressed rapidly and spread ALL over my body. Even walking is hard work at the moment. Are you on a strict diet as well????
Meggs 😀
Hi Meggs,
Sorry to hear that you have the dreaded SD and it's problems, but I'm real glad that you've started AP. It looks like we have the same GP and naturopath – Dr KD and Lynne. They will very carefully treat you with AP and don't take the sledge hammer approach, meaning that patients is needed to give things time to work. They like to take a load off the immune system and hence the diet is a really big part of it. They have sorted out my meds to hit SD and Lyme, and I do Clindy IM once a week. Do you have anyone at home who could do it for you to save a trip to the Dr's, and infact my wife Helen gives it slower and better than the Dr's do.
Hang in there Meggs, give it lots of time to start working and boy when it does, it is awesome and almost to good to be true.
Cheers Wayne
Systemic Sclerosis....rapid onset 2010.
Started AP January 2011.
Multiple meds during treatment, including IV Clindamycin every 2 months for 5 days.
Now.....disease in remission....meds: Mimomycin, Clindamycin IM 3 monthly,
5 days Azithromycin 6 monthly.
Very well now....enjoying life.
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