SD Hands

[schlep]

Hi–I am fairly new to this site and am looking for input from anyone who has curled, tight hands and if yours have improved over time and to what point?  I started AP 4 weeks ago and my knuckles have started healing–thank god.  I am curious whether or not I will get more mobility back in my hands and if it's possible for my fingers to straighten.  Any info/personal experiences is welcomed.

[Maz]

[user=2472]schlep[/user] wrote:

Hi–I am fairly new to this site and am looking for input from anyone who has curled, tight hands and if yours have improved over time and to what point?  I started AP 4 weeks ago and my knuckles have started healing–thank god.  I am curious whether or not I will get more mobility back in my hands and if it's possible for my fingers to straighten.  Any info/personal experiences is welcomed.

Hi Schlep and welcome to the RBF forum! 🙂

There was a recent discussion on this very topic you will find at this link:

http://rbfbb.org/view_topic.php?id=4749&forum_id=1&highlight=dan+hands

Richie is a longtime volunteer of RBF and is in remission for scleroderma using AP (you can read his remission story in the Spring 09 RBF eBulletin – link below). As he mentions in his post to Dan (Ryan's Dad), it took several years and physical therapy for his hands to straighten out, which seems to commonly be one of the last things to respond to AP treatment. If you've caught this nice and earlyhaving help with a hand therapist, you may respond much more quickly.

https://www.roadback.org/EmailBlasts/ebulletin_spring09.html

So nice to meet you and hope others will chime in with their experiences for you!

Peace, Maz

 

[Kim]

Hi schlep, and welcome to the board.

I'm a little pressed for time so will have to be brief, but AP has helped every aspect of my SD.  My contractures never became locked in a frozen position, but definitely tight, swollen, curved, and drifted fingers.  Today I have pretty good function and some joint  damage that is probably permanent.  I'll take it!  At one point I couldn't turn the key in my car and the pain under my fingernails was excruciating just from the weight of the sheets (but, I'm sure I don't have to describe this to you :crying:).  All of that is a non-issue now.

So many people with SD have had huge improvements with this protocol.  I hope it will be a good fit for you too. 😉

Take care…..kim

[JeffN]

I was DXed with CREST/limited in Oct. '06 and began AP in late Jan '07. My digital ulcers began to heal about three weeks in so if that is what you are referring to about you knuckles thats great news. My hands were extremely painful and I could not touch my finger tips to my palms, for a while I could only close my fingers to maybe an inch or so from my palms. My middle and index fingers on both hands have some curvature which remains today. They won't lay flat on a table, my fingers curved over a ten day period back in August  of '06 and have not curved any more. My fring finger and little finger had a small amount of curvature but that has gone away. Trying to open my fingers was also very painful and limited. All the usual household instruments of the devil; door knobs, curtain openers, dishwasher door locks, being unable to open a poptop or bottle with a screw top, etc. were prblematic. As many of us know almost anything requiring finger dexterity can become almost impossible. Fast forward to today my fingers don't feel like they are in a bucket of broken glass all the time. I can touch all my fingers to my palms and when I do it doesn't feel like my knuckles are going to dislocate. My fingers are still more sensitive than before but not too bad. My raynauds is still an issue but somewhat better than a couple of years ago. I don't have sausage fingers anymore, and my fingers move well. I would say my hands are at least 90% at his point. I am an electrical contractor and am back in the field full time and am able to do everything I used to although some tasks are a little harder than before. Not having a straight middle or index finger is a drawback but not a dealbreaker. I noticed a after a year and a half or so I was routinely taking apart fishing reels and the like, things with small parts, that were impossible just a short time before. Last evening after work I was out working on a motorcycle and thinking about how wonderful it is to have the dexterity back and be able to do things that I enjoy. At one point I could go out on the bike for about ten minutes tops due to the pain of pulling in the clutch and extending the fingers on my right hand to cover the brake lever. I still have problems with stiffness in my legs and knees I think due to perhaps tendon damage but that too I can live with. I am able to snowboard again so I am getting over “life interrupted” and trying to enjoy life a little more.

I hope you meet with success and your hands and whatever other SD issues you may have improve. I am thankful every day that I found my way to AP.

 

[ideamktg]

Hi Schlep,
I've had systemic SD since end of '06. My hands were contracted and ulcerated initially, but now I'm able to straighten them out and the ulcers have healed. Being on AP is key, but I also practiced good skin care (eg moisturizing, avoiding detergents, bleach, etc). I really didn't do much physical therapy, but just made it a point to stretch my fingers as much as possible in everything I do on a daily basis. Good luck!

[richie]

Hi–my fingers were  totally curled at the second joint –it took about 4 years of gradual improvements until they got back to pre-sd –but they are just fine now —-it takes lots of work -lots of therapy and excercises and the antibiotic but it can TOTALLY reverse –mine did –A good way to mark progress is to hold up your hands in a praying position —when the day comes that both hands are flush against each other with no light showing through –then you are back to normal !!! In the meantime as time goes on –less and less space between your hands  will become apparent –thats progress toward the goal !!!
richie

[Wayne]

Hi Schlep,

The hands seem like a tough one, but I'm pleased that your seeing some healing to your knuckles.

I managed to catch my SD fairly early and at this stage have slowed the systemic progression to a snails pace, about 8 months into it. My right hand is mildly stiff, but my left hand is a problem. I can only close my hand to within about an inch of my palm and the middle finger is a little curled. Of cause this poses all the usual dexterity problems in day to day life (unable to work as a Paramedic) and it affects my hobby of riding my quad bike as the clutch lever is on the left. Not to worry as it is still early days and I hope to get better use of that hand as time goes. Maybe never perfect, but I figure that my hands are down my list of problems compared to the life threatening problems which AP has dealt and dealing with with wonderfully.

Keep it up and I hope you have every success with AP

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.

[Kim]

[user=1566]annie_hawaii[/user] wrote:

Hi Schlep,
I've had systemic SD since end of '06. My hands were contracted and ulcerated initially, but now I'm able to straighten them out and the ulcers have healed. Being on AP is key, but I also practiced good skin care (eg moisturizing, avoiding detergents, bleach, etc). I really didn't do much physical therapy, but just made it a point to stretch my fingers as much as possible in everything I do on a daily basis. Good luck!

Hi annie,

We haven't heard from you in ages! 😯  How are YOU doing?  Sounds like some improvements with your hands, which is wonderful to hear because it seems nothing was working at one point.

Take care…..kim

p.s. From the looks of your avatar it seems you've added a “maxi” dog to your “mini” dog family.  Right there, if you can now handle a real dog you must be doing better. :roll-laugh:

[ideamktg]

Hi Kim,
Yes, I'm feeling somewhat better overall. After all these months, it feels good to be amongst the living again. I'm so grateful to fellow patients who understand the challenges; it's refreshing to see people working together online.

Going through such an illness has made me reflect on how I want to live the second half of my life; what's my legacy going to be? What will define my existence?

(PS I love collecting pics of pets on the internet, so I can't take credit for my avatar photo…. but it doesn't take away from the cuteness!)

[schlep]

Hi Annie–

Thanks for your reply–I am hoping AP therapy makes a difference for me as it has for so many people.  I have been on it for 6 weeks and so far have just noticed the ulcerations healing, although I still have one that I keep a bandaid over everyday.  I look forward to the day when my skin loosens and I can get back to some sort of normalcy….for me it's mostly skin related…although I had some gastro issues which seem to be under control (knock on wood).  I really miss my hands….curled and don't move much….hoping that changes some.  I stretch them as often as I think of it–when you say yours were contractured…were they curled and “frozen” in place?  Can't straighten or make a fist…

 

Karen

[ideamktg]

Yes, not being able to use my hands was debilitating. The pain, the clumsiness, always needing special assistance… it was awful. Iniitally when they were very swollen, it was just too painful to move. Then as the swelling went down, they began to curl, contracted and hardened. The changes were so subtle but as I would try and stretch my fingers out daily, I began noticing that they would give just a little bit more. I recently met another fellow RBFer with scleroderma and she commented one couldn't even tell I had it unless you looked closely. But I do get into trouble doing laundry without gloves on, then end up with detergent, bleach, etc on my fingers which causes it to flake and peel. I'm still not 100%, but I'm making progress.

Another interesting thing that happened involved my fingerprints. Before I became ill, my fingerprints were utilized as ID (eg banks, DMV, security, etc), but after I developed SS, they “changed” and it caused a huge, unforeseeable problem. In some locales, instead of using a card key, a secured door is opened using the fingerpad ID, where you just placed your fingerpad on a grooved slot, it reads it, and the door opens. But after SS, I had to prove not only that I was the same person, but that I did not knowingly alter my fingerprints in any way… of all things.:doh:

[Lynne G.SD]

Hi Annie;
    I am glad to see that I was not the only one that lost her finget print pattern.I swear I could have robbed a bank and that the powers that be could never have known it was me as I have prints done for airline security many years before.

[aynurrzepa]

[user=31]Lynne G./SD[/user] wrote:

Hi Annie;
    I am glad to see that I was not the only one that lost her finget print pattern.I swear I could have robbed a bank and that the powers that be could never have known it was me as I have prints done for airline security many years before.

Lynne, same here! 😀 

Here in the UAE we need to get national IDs (even expats) and it involves finger print scanning… Well, iIstill have no ID because no machine can scan my fingers due to tiny unfleshy fingertips, cracks, scars and ulcers here and there, vague patterns etc! I wonder too if I'm an a wrong business! 😉 

Hi Schlep,

Well done for the healing knuckles! I hope your hands start uncurling too, but as I read from stories here, it's one of the last and most stubborn things to improve… I don't have curled fingers at all but I have skin thickening, hardening, atrophy, pitting scars, corn-like formations on all my finger tips, even my heels and elbows (where the skin gets rubbed the most) and some of my toes – the day I see them go away I will CELEBRATE! Let's plan to celebrate together!

[ideamktg]

Lynne & aynurrzepa,
So glad to see I wasn't the only one with the fingerprint issue. That's what I love about this website! Who else would understand such a thing?

aynurrzepa,
Would the UAE consider a “toe” scan? 😉

[schlep]

Aynurrzepa (hopefully I got the spelling)–

Good to hear from you….yes, we definitely will celebrate together!!  What a road to travel!  So glad I came on this site…people can understand what you're going through…even doctors don't know. Notice you're from Dubai…had a good friend just get back from there–went on business–she said it was so hot!  She posted some really wonderful pictures.  Good to hear from you–keep in touch and hang in there!!

 

Karen

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