Consultant Physiotherapist Will Gregory talks us through a quick hand stretching routine that can help to alleviate stiffness and increase range of movement.
I'm in Germany Diagnosed but no help .There is no. help group in Berlin .Seldom do Germany have such groups . I have no medication either ..At such a stage now that have lost collage between most joints ..
Hi Helena, we're so sorry to hear that. If you get in touch with us by emailing info@sruk.co.uk , we should be able to suggest a support group based here in the UK which is doing virtual meetings? Alternatively, you could join our online community on HealthUnlocked here - healthunlocked.com/sruk or our Facebook group community here - facebook.com/groups/SRUKCommunity . We also have a number of publications on our site about the various elements of scleroderma, which may be helpful for you to read and/or take to a doctor if they're not aware of the kind of support you might need.
Hi. I have had the same experience here in the US- it took 12 years of everyone(family, medical professionals, everyone except my mom, who believed me, because unlike everyone else, she was willing to actually LOOK at my inexplicable symptoms) calling me crazy, before an ER doctor finally noticed a few things about me & rattled off a correct diagnosis as if it was nothing, when I was in the ER for a totally unrelated issue, & I hadn't even mentioned anything about my crazy skin issues, he was just observant, & brilliant. But as for what this doctor says about informing doctors "what you've learned about scleroderma, & then they will have that knowledge for the rest of their career.", that doesn't go well here in the US. Even AFTER I got that correct diagnosis, about five primary care doctors I attempted to see after that(in hopes of getting a referral to a rheumatologist, or at least a dermatologist) just utterly refused to listen or pay any attention to it. It is frustrating, to say the least, but as you indicated, there's really little to no help to be had for it anyway, so in the end what does it matter. At least in the US there's no help- I'd really like to try the dialysis-like blood filtering technique some scleroderma patients have had success with, where they filter certain antibodies, but in the US insurance companies won't cover the procedure for scleroderma patients, despite the benefits many patients see from it. If they will in Germany, I'd recommend you look into possibly getting it- it is not invasive or harsh of side effects, & for some folks it almost ends up being a cure, from what I understand- cured, although you have to continue to have it regularly, but the need for the procedure gets less frequent with time. Anyway, if you have time, you might pop over to my UA-cam channel, where I have two videos about my scleroderma, both are less than three minutes long. Hope you get some kind of relief at some point.
So glad it was helpful, Michael! Unfortunately the NHS is under immense pressure which does mean it can be difficult to get the referrals needed to areas like physiotherapy.
@@WeAreSRUKI'm in the states. My rheumatologist never helped me with sclerodactyly. Now it's been over a year with him and it's progressed significantly.
I'm in Germany Diagnosed but no help .There is no. help group in Berlin .Seldom do Germany have such groups .
I have no medication either ..At such a stage now that have lost collage between most joints ..
Hi Helena, we're so sorry to hear that. If you get in touch with us by emailing info@sruk.co.uk , we should be able to suggest a support group based here in the UK which is doing virtual meetings?
Alternatively, you could join our online community on HealthUnlocked here - healthunlocked.com/sruk or our Facebook group community here - facebook.com/groups/SRUKCommunity .
We also have a number of publications on our site about the various elements of scleroderma, which may be helpful for you to read and/or take to a doctor if they're not aware of the kind of support you might need.
Hi. I have had the same experience here in the US- it took 12 years of everyone(family, medical professionals, everyone except my mom, who believed me, because unlike everyone else, she was willing to actually LOOK at my inexplicable symptoms) calling me crazy, before an ER doctor finally noticed a few things about me & rattled off a correct diagnosis as if it was nothing, when I was in the ER for a totally unrelated issue, & I hadn't even mentioned anything about my crazy skin issues, he was just observant, & brilliant.
But as for what this doctor says about informing doctors "what you've learned about scleroderma, & then they will have that knowledge for the rest of their career.", that doesn't go well here in the US. Even AFTER I got that correct diagnosis, about five primary care doctors I attempted to see after that(in hopes of getting a referral to a rheumatologist, or at least a dermatologist) just utterly refused to listen or pay any attention to it. It is frustrating, to say the least, but as you indicated, there's really little to no help to be had for it anyway, so in the end what does it matter.
At least in the US there's no help- I'd really like to try the dialysis-like blood filtering technique some scleroderma patients have had success with, where they filter certain antibodies, but in the US insurance companies won't cover the procedure for scleroderma patients, despite the benefits many patients see from it. If they will in Germany, I'd recommend you look into possibly getting it- it is not invasive or harsh of side effects, & for some folks it almost ends up being a cure, from what I understand- cured, although you have to continue to have it regularly, but the need for the procedure gets less frequent with time.
Anyway, if you have time, you might pop over to my UA-cam channel, where I have two videos about my scleroderma, both are less than three minutes long.
Hope you get some kind of relief at some point.
Take Care.
what about the thumb?
Wonderful video. Rheumatologists dont adress therapy needed imo.
So glad it was helpful, Michael! Unfortunately the NHS is under immense pressure which does mean it can be difficult to get the referrals needed to areas like physiotherapy.
@@WeAreSRUKI'm in the states. My rheumatologist never helped me with sclerodactyly. Now it's been over a year with him and it's progressed significantly.