For Those Who Have Thawed...

Hi Hope! I looked into xiaflex last fall, excited to ask my doctor about it, but it isn't indicated in Canada (yet) for FS. It seems to have potential, and glad to hear it helped. Are you back to 100% ROM? 

Liane

Hi Liane,  , Xiaflex is a simple protien that can release FS. IT has helped many and I hope it is approved in your area soon.

call the manufacturer and ask when it will be approved in Canada and if there is a clinical study you can be accepted for clinical study for approval.

it has been approved in many other European countries and Japan for FS.

IM sure it's just a matter of time. In the mean time wear a shoulder sleeve stretch type while you sleep and ask about other shots approved for pain.

i will keep my fingers crossed that Xiaplex will be available in Canada soon.

Thank you, Hope4cure. I don't have pain anymore; so thankful to be almost at the end of FS. 

I did write to Health Canada (drug regulation) about Xiaflex, and in their roundabout way they said it's only approved here for Dupuytren's contractures. Sounds promising!

Thanks, Beverly...though three years to thaw sounds like a long road you were on. What's interesting is that in the last couple months, my PT has been working more on stretching, massaging, & exercising my upper back & neck, and that's helped me make the most progress lately. It's all thrown out of whack with a FS. I'm totally with you on not taking chances with a full blown FS on the second side. Was glad my doc agreed to guided cortisone in it at the first sign of FS pain - that, along with the upper back/neck attention seems to have worked.

FS, the whole experience took on the feeling of forever. I actually began to believe that I would be somewhat impaired for life. There were no injections or massages & stretching offered by any PT people. But to be honest I stopped going as moving was so painful initially that I gave up. They did try tens and possibly heat. After thawing I had residual problems and one PT t used ice packs after sessions. Typically I hate cold like that, but it did seem to lessen the inflammation.

Most people don't mention what country they are in. I'm in the US. Possibly they don't have much of a proactive approach to it here? Other than operating by the orthopdic surgeon, nothing else was suggested other than waiting for it to thaw. 

My PT said it's really important to keep talking nicely to my shoulder. (Okay, that sounds a little out there  but her point is that the tapes we play in our heads can somehow affect the outcome.) So as I thawed - from not even being able to get my thumb to reach my tailbone - inch by inch being able to touch further up my back - I kept cheering my shoulder on.

I totally get that notion of forever impairment & I hang on to the hope of a complete thaw...almost there!

I'm in Canada, and I think I would have been in the dark about FS if it hadn't been for this Godsend of a forum from the UK & journal articles. It was the best way to learn how to speak to the health care workers & get the care plan I felt was best for me.

FS as I think back I did go to massage therapists on my own. Acupressure massage was particularly effective but the relieft wouldn't last. That's why I decided to go with the actual acupuncture and it was the right choice for me. But this was already years after the thawing and it was for the residual problems. In the practioner's words, my "chi was stuck". Something sure was! I'm just very happy I can move normally. There seem to be so many more options for treatment now while people have it which is great. I'm sure that will mean fewer residual problems.

Hi Angela: Thanks for writing, and I'm glad you're on the getting-better side of FS!  I found it was all I could do just to read the forum posts while I had so much pain; I didn't start chiming in until I was starting to feel better. Some of the most encouraging posts I read in those months were the ones that talked about FS being self-limiting, thawing, their progressive return of ROM, the "light at the end of the tunnel", and others like yours that gave me hope.

Wishing you continued improvement!

Liane

Yes, I agree, I would lurk and read some of the other people's posts when it really hurt.  Not being able to sleep well really puts a damper on things, too.

My physical therapist did passive range of motion exercises.  It does not feel good when she is doing it but it is stretching it out.

For months, the first thing I would want in the morning is a heat pack, but I can wake up now and it is not the first thing on my mind.  I still have a little pain but I am getting more function back- that makes me happy!

I have not tried dry needling or acupuncture.  I have a friend who did have some acupuncture and she saw improvement.  (I have had dry needling done on a piriformis injury a few years ago).

Heat, ice, physical therapy and patience.  My shoulder was so inflamed for so long.  At first my doctor prescribed a bunch of tylenol or aleve but my stomach couldn't handle it.  Oh, and at home I did try some TENS and I did get a few massages and I tried the Active Release Technique - but I stopped that until the inflammation went down.

Hi Maria:  I've appreciated your posts over the months You're on pretty much the same timeline as me with a right FS and taking things more naturally. With hope & that 'one-armed forum hug' for all still suffering, Liane