Getting Your Hands Back

[finsfan]

Hi All,

I've had Scleroderma since '05, and came across this site in September, '08.  My Rheumy with Kaiser agreed to write a prescription for generic Mino in Oct '08.  I don't have an AP Dr. yet due to finances, but have been following the general discussion on this site fairly regularly the last couple of months and have ordered supplements that hopefully will help (Serracor-NK, men's multi-vitamin from Garden of Life, Primal Defense probiotics from Garden of Life, and QZyme digestive Enzymes).

My hands have been basically frozen in a slightly curved position.  Can someone comment on their experience with their hands, what may help to get them back, and the length of time it takes?

Thanks.

[Kim]

Hi finsfan,

Sorry about your diagnosis, but nice to meet you.  I am in remission from my SD, but my contractures never got as bad as what you describe, mostly massively swollen mitts.  I have some permanent joint damage, but my hands are functional (just not pretty ;)).

You might want to tweak your antibiotic protocol by adding in another abx or two.  You could ask your doc about adding in Zithromax and/or Clindamycin to see if it helps.  I also swear by sauna therapy for SD, just does wonders for our lousy circulation.

Are you still losing weight?  If so, you should seriously consider getting tested for Celiac because so many of us have gut issues (leaky gut) and you will not get better with a sick gut.  Your immune system gets overwhelmed when it's fighting leaking food particles in addition to an infection, so it is important to get all systems working together again.  It's also a good idea to get tested for other food allergies because you could have developed sensitivities as a result of being sick that you never had before.  I sure did.

Whenever you stall it's a good idea to change something or do more detective work and try and figure out what to try next.

Good luck and take care…..kim

[Parisa]

Hi finsfan,

Hopefully Richie will see this post.  I think his hands were pretty bad but I think they're in pretty good shape now.

[Randy]

When I couldn't make a fist in Dec 07, that's when my Rheumy #3 Dx'd me with SD.

We are all different with our SD and how we get better with AP.  So here's some positive hand stuff I wrote in my daily improvement. These improvements began after I started AP in Jan '08.

I hope this helps you see there can be improvement.

17 Jul ?08:  Able to hold and do lats (weights) with fingers.
 
4 Aug ?08:  Julie and I can now more easily interlock fingers while holding hands, particularly the left.
 
6 Nov ?08:  Now able to peel off double sided tape paper with L hand fingers, although I can?t do this with my R hand. 
 
22 Nov ?08: Noticing I can peacock feathers open R hand fingers pretty normally now. 
 
9 Dec ?08:  Interesting that steam room helped R hand dexterity and R thumb able to touch base of other fingers. 
 
29 Dec ?08: Noticed R hand is starting to relax a bit; can touch thumb to middle joint of fingers and almost to base of pinky and ring finger.
 
3 Jan 09: . Can snap my fingers with L hand and a little bit with my R hand.  Notice 1 hair growing in the middle of SD patch under my L forearm.  Noticing more hair growth around R forearm bumps.
 
Feb 15 ?09:  L hand opening up wide enough to slip fingers through it better.
 
Feb 26 ?09: Can now touch L ring finger to palm! And L hand fist attempt is looking more like a fist. 
 
May 17 ?09: Now able to touch my ring finger to my palm on both hands (L easier)!
 
May 23 ?09: Pruned apple tree; was able to grip, hold, and operate long pole pruning shears.  I would not have been able to do this months ago.
 
May 28 ?09:  For left hand, now able to touch ring and middle finger to palm at same time.
 
June 12 ?09: Starting to be able to touch my L index finger to my palm.  Also noticed today that I can more normally wash my face and apply shaving cream with my hands.
 
June 18 ?09: Able to open Prilosec pill wrapping with R thumb and pointer finger.   Able to stretch back several fingers (R and L hand) without sharp tendon pain.
 
Jul 29 ?09: Able to touch 3 fingers (pointer, middle, and ring) to base of palm on left hand now.
 
6 Sep ?09: able to take of tight socks without it hurting fingers.  I am now very close to being able to make a fist with my L hand. I can easily touch my ring and middle fingers of my R hand to it?s palm.  The thick collagen band on top of my L wrist is almost all gone.
 
12 Sep ?09: Can now snap my R middle finger.
 
23 Sep ?09: Had lunch with Herb Hopper today and tried to show him how the back of my R hand is tight, compared to his, but my skin was loose; I had to demonstrate using my fingers from the middle knuckle to the fingertips. 
 
9 Oct ?09: Noticing that the underside of my left fingers from the middle knuckle to the fingertips are starting to be a little pinchable. 
 
18 Nov ?09: 10 mins arm spinner (holding the handles felt best yet, really no problems ? last time I couldn?t do it because of hands

4 Feb '10: Best L fist yet!

 

Diffuse SD since Apr '07
AP since Feb '08
100mg Mino twice daily
Stopped Clindamycin IVs Aug 2019
"No one should profit over someone else's illness"

[richie]

Hi-It took me about four years after starting the antibiotic for my hands to straighten out —lots of occupational therapy and lots of hand excercises on my own –try and keep using your hands as much as possible —move the fingers for hours on end –its lots of work but your hands can and will straighten out –mine are 100 % normal now –my contractures were pretty bad —

richie

[finsfan]

Thanks Randy and Richie.  I know there's no guarantees, but it's encouraging to know how your hands came back, and to think that maybe some day I'll actually be able to throw a football or baseball to my 5 yr old twin boys.  Are there any particular exercises you do with your fingers?  Right now I've started trying to bend them open several times a day.

Before learning about AP, I was told the best I could hope for was that the progression would stop some time in 3 – 5 years of the disease, and then that would be the semi-permanent condition to be in the rest of my life.  But thanks to the knowledge shared on this web site, it's a different ball game now.  I've learned a lot in reading the General Discussion on this site the last couple of months, and want to sincerely thank those that operate this site and the volunteers that offer up their experiences, suggestions, links to information, and encouragement.

[richie]

Hi-Two hand excercises that helped me greatly were –#1 —Suggest you purchase therapeutic putty –to start use the softer one —squeeze in each hand three sets of ten squeezes each to start —after a week or so raise reps to twenty times and increase to 5 sets —do about three times daily –#2 –with each finger tip –touch the tip of thumb –do ten reps for each hand — these two excercises helps the mobility –they were given to me by a physical therapist —
richie

[Eva Holloway]

finsfan,

I don't have SD but had a lot of problems with my hands on the beginning when my Dermatomyositis was in full flare. I asked to see a occupational therapist and had therapy for 4 weeks, twice. They gave me two different types of putty, a little gatched that has rubberbands on it and I could adjust it to how tight I wanted it so I could squeeze it and that helped a lot. You may want to ask for occupational therapy. Mine did wonders.

Now if may skin would follow suite on my hands it would be better

Eva:D

Eva Holloway

[mschmidt]

Hi there!  My hands had slight contractures about 8 months from my first symptoms.  The swelling was so bad, I couldnt even open or close my hands.  About 6 months after my iv's and starting Minocin, my hands began to loosen up.  I still have very slight contractures but, my fingers are starting to straighten out, and most people don't even notice anything is wrong with them.  I excercise them with a ball (squeez it), pull my fingers back and forward, rotate my wrists as much as possible, massage my fingers, hands and wrist, an open and close my fists.  I think the more you exercise them, the better it is.  I've noticed substantial improvement in a short amount of time, and fully intend on getting my hands back.  It's a lot of work but, certainly worth it!  I occassionally use castor oil packs with heat as well, which helps to soften the skin, and take inflammation/water out of the area. 

Keep working hard–they'll get better.

Maria

[rebeccaavazian]

Good question!

I have always wondered if my fingers and hands would go back or even just get slighty better. My pinky finger and ring finger are the worst but i am starting to show lil wrinkles on the top of my hand, which is great! I will have to work on them more often with my little sqeeze ball, now that ive read Richie's post. Thanks for the encouragement.

[JeffN]

Unfortunately I don't have the copious notes that Randy does, nice job guy, but my hands have improved also. I have been on mino three years and my hands are greatly improved. The swelling began to abate about one year in. My middle and index fingers on both hands have slight curvature which has not gone away at this point but the swelling is gone. I no longer have the feeling that my hands are constantly in a bucket of broken glass and I have wrinkles again. I have been able to touch my fingers to my palm for at least a year and a half with no joint pain, at my worst I could only get about halfway to the palm. My little finger was the first I was able to touch with,  the ring finger next, middle, and the index finger being last. I have good use of my hands again with very little if any pain. I am still somewhat sensitive to hot water etc. Strength is coming back, not as strong as before but building up all the time. I am and electrical contractor so I am cutting wire all the time and can notice the increase in strength. My Raynauds I feel has improved somewhat this winter still bad but perhaps not as bad as the winter of '08/'09.

I greatly enjoy having the hands back. Straight fingers would be wonderful and I am hoping for that.

[Author]

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