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Hi everyone, I have been on antibiotics for 15months now and have had some good changes.. I know i have posted this question before, but please excuse me as i cannot find the thread..
I am hoping those of you who have had great results on the protocol could let me know if they have had their finger contratures reverse (are you ale to use your hands again)???
If so what do you think was the main thing that has helped…
Thankyou so much, love Debbie
🙂Hi…
I have RA, but I’m in touch with someone who has SD on a regular basis. Let me reach out to her and ask… I’ll write you back soon!
Hi debbie;
I got full use of my hands but it took nearly 4 years.Body was pretty good after just one.I think Richie will say the sameHi I had terrible contractures on both hands –almost totally curled –took a lot of work and about 4–5 years but they are completely straight with full strength —Firstly I was taking minocin and still do
secondly tried physical therapy two times –only helped a bit —I credit the medicine and doing my own hand excercises —-kept flexing them as best as I could for long periods if time –kept using my fingers -again best as I could –as things loosened a bit did various hand and finger excercises –it takes a long time but I wish you could have seen my hands when they were real bad and how they are now –you absolutely would not believe it –keep patient and keep at it cause it does work –that was the last symptom that cleared up !!!!!!!!!!!!!!!!!!!!
richieHi In fact found the link for hand exercises at Mayo Clinic —
http://www.mayoclinic.org/diseases-conditions/arthritis/multimedia/arthritis/sls-20076952?—-hope I did it right –remember start very slow and maybe only five reps –do the ones you can do –if you cant do certain exercises now –you will down the road –also –I used DR Trentham who is now retired –he said “forget no pain no gain if pain starts -thats it for today –tomorrow is another day ”
Hope this helps –if I can help more just post –Sounds real good that things are going ok after 15 months —you should be very encouraged and optimistic !!!!!!!!!!!!!!!!!!!!!!!!!!!!!!
richieThankyou so much to all of you who have replied.. I nearly cried about the possibility of getting my hands back..Thankyou for giving me such hope..I am so so greatful..
I will check out the exercises, thanks so much Richie@Debbie star wrote:
Thankyou so much to all of you who have replied.. I nearly cried about the possibility of getting my hands back..Thankyou for giving me such hope..I am so so greatful..
I will check out the exercises, thanks so much RichieHi Debbie,
If you have insurance that covers physical therapy, perhaps you could ask to see a hand therapist? They usually have one at most physical therapy places.
Although different from SD, my hands were horribly swollen and contracted from RA at the beginning and I was in so much pain I could not bend or straighten my fingers at all. A hand therapist did the trick while I was recouping on abx therapy….hand/finger exercises (like the ones at the link above), after dipping my hands in a hot paraffin bath (I bought one from Walmart for about $30) and then sitting with a heating pad over them for 10 mins. Also, theraputty (inexpensive and bought from the hand therapist) was so simple and wonderful for increasing finger strength along with the finger exercises.
These things did the trick. I won’t say it was easy…it was excruciating to do any type of finger stretching, but over about 6 to 8 months they straightened out and recent X-ray (7.5 years later) showed no damage whatsoever.
Think Debbie lives in Australia. Physical therapy probably the same but probably would need to look in places like Chemist’s Warehouse or Soul Pattinson for hot paraffin bath 😀 😀 😀
Be well! Lynnie
Palindromic RA 30 yrs (Chronic Lyme?)
Mino 2003-2008 100mg MWF - can no longer tolerate any tetracyclines
rotating abx protocol now. From Sep 2018 MWF - a.m. Augmentin Duo 440mg + 150mg Biaxsig (roxithromycin). p.m. Cefaclor (375mg) + Klacid 125mg + LDN 3mg + Annual Clindy IV's
Diet: no gluten, dairy, sulphites, low salicylates
Supps: 600mg N-AC BID, 1000mg Vit C, P5P 40mg, zinc picolinate 60mg, Lithium orotate 20mg, Magnesium Oil, Bio-identical hormones (DHEA + Prog + Estrog)Hi again Lynnie and Maz… Thanks for your help..
Yes Lynnie i am in australia… I saw the melbourne girls and saw a hand specialist whilst in Melbourne..
They were very limited in their knowledge of scleroderma..They did however try really hard to help me..
They did do the parrafin bath along with a couple of other things.. It was so painful… I was not sure whether to go with it or not.
I also wondered whether i might put my hands in a glove and cover them with castor oil overnight and see if that makes any difference??Hi –All this talk about paraffin etc brings back unpleasant memories –however I do remember one thing that really helped on a continuing basis –I found heat helped –I remember finding electric mittens that I was able to control the amount of heat –I remember taking a long extension cord and walking around with them on –helped a lot
do you have 220v or 120v –if you cant find them —let me know as they are somewheres around and I will dig for them –keep in touch !!!!!
richieI have nodules in the palm of my hands which I think were my first symptoms and the swollen fingers followed after that.
I believe they call it Dupuytren’s Contracture. I was using the small exercising hand balls sweezing them for 15 reps on each hand. I’m waiting for the swelling to go down as I have not been able to wear my rings for over a year.Richie, thank you for including that link for hand exercises. I will add that to my routine daily. Much appreciated.
I hope I’m leaving comments correctly. I don’t know if I’m supposed to be leaving this message by using the “Quotes” button or not. Please correct me if I’m doing this wrong.
Rosie
@richie wrote:
Hi –All this talk about paraffin etc brings back unpleasant memories –however I do remember one thing that really helped on a continuing basis –I found heat helped –I remember finding electric mittens that I was able to control the amount of heat –I remember taking a long extension cord and walking around with them on –helped a lot
do you have 220v or 120v –if you cant find them —let me know as they are somewheres around and I will dig for them –keep in touch !!!!!
richieI will try to look for those mittens. Rosie
@RevereRosie wrote:
I have nodules in the palm of my hands which I think were my first symptoms and the swollen fingers followed after that.
I believe they call it Dupuytren’s Contracture. I was using the small exercising hand balls sweezing them for 15 reps on each hand. I’m waiting for the swelling to go down as I have not been able to wear my rings for over a year.Hi Rosie,
I have a Dupuytren’s nodule, too, on my left palm. Mine also appeared within a month of the RA being diagnosed, but both my Dad and Uncle have had them and they have not had a rheumatic disease. I have managed to control the size of mine with NAC and glutathione and it has never got any bigger than a very small pea directly under my ring finger and I still have full range of motion of that finger. My uncle’s got so bad that he had to have it surgically fixed (but he also didn’t give NAC a go).
http://www.ncbi.nlm.nih.gov/pubmed/16563228
One thing I will not consider is the collagenase shots they are using for Dupuytren’s these days. Collagenase is the enzyme that breaks down joints, too, in RA! It’s manufactured from a bug called, clotridium histolyticum and my guess is that for someone with RA, it could ramp up the damage in the hand joints quite severely. The reverse may be true for scleroderma, but I have not researched this and would not like to say. 😉
It’s called, “Viking’s Disease,” because it normally affects those of northern European extraction
Would recommend researching NAC and asking your doc about it, as it has amazing antioxidative properties for inflammation and general health of liver/lungs and whole body. They use it via IV in the ER for folks with aspirin overdose and also for kids with cystic fibrosis as a mycolytic agent, but it’s also an over-the-counter supplement and used by those with rheumatic disease for lung health and patients report that it’s been used with anecdotal success to help prevent/reverse the effects of lung fibrosis. 🙂
@RevereRosie wrote:
I believe they call it Dupuytren’s Contracture.
If that is what you have, it runs in my family and I just sent the following information to my sister:
“Dupuytren’s contracture is a condition sort of along the same lines as
Peyronie’s disease, except in this case, the thickened tissue occurs along one of the
tendons in the palm of the hand, pulling the connected finger down. If it progresses far
enough, sometimes it’s impossible to straighten the finger out at all. Rubbing SSKI into
the affected tissue of the palm at least twice a day can “loosen” it and
prevent the condition from progressing to the point of causing a deformity or disability.”
http://www.icnr.com/articles/wondersofiodine.html“For these conditions, it
Lyme/RA; AP 4/2008 off and on to 3/2010; past use of quinolones may be the cause of my current problems, (including wheelchair use); all supplements (which can aggravate the condition) were discontinued on 10/14/2012. Am now treating for the homozygous MTHFR 1298 mutation. Off of all pain meds since Spring '14 (was on them for years--doctor is amazed--me too). Back on pain med 1/2017. Reinfected? Frozen shoulder?
@Trudi wrote:
@RevereRosie wrote:
I believe they call it Dupuytren’s Contracture.
If that is what you have, it runs in my family and I just sent the following information to my sister:
“Dupuytren’s contracture is a condition sort of along the same lines as
Peyronie’s disease, except in this case, the thickened tissue occurs along one of the
tendons in the palm of the hand, pulling the connected finger down. If it progresses far
enough, sometimes it’s impossible to straighten the finger out at all. Rubbing SSKI into
the affected tissue of the palm at least twice a day can “loosen” it and
prevent the condition from progressing to the point of causing a deformity or disability.”
http://www.icnr.com/articles/wondersofiodine.html“For these conditions, it
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