Building it back up

[wotshernameagain]

Hey guys

Has anyone found working out to be helpful in regaining lost strength?

[Jo-Goode Administrator]

Exercise has be proven to be beneficial to regaining lost strength and increase stamina with Dermatomyositis & Polymyositis. Some with IBM exercise and say it is helpful.

I was diagnosed aged 25 (1994) and with in a matter of weeks went from a fit person to a young lady who needed care for all her needs and in a wheelchair. At that time it was thought exercise could cause further damage, but once I was stable my doctor knew no different ha ha and had me winched into a hydrotherapy pool to start rehabilitation.

Working out in a gym has never appealed to me but I eventually got to the point I used to swim 50 lengths of a full size pool and regularly walk my dogs; although I'm rather a slow walker because of RA and some damage to muscles. When I moved from London a swimming pool was some considerable distance, so I took up cycling after knee surgery and physiotherapy to straighten my right leg. Gradually I built up the miles I could cycle and would regularly cycle 12 miles a day and on occasions could do 25 miles; added to daily cycling I would walk my dogs for an hour. Just over 5 years ago I came out of remission for DM and have flared several times since, with each time exercising to regain strength and function.

Here are some links you may find helpful.

Creatine has been found to be helpful combined with exercise (a study that Myositis UK funded a number of years ago) ncbi.nlm.nih.gov/pubmed/174...

In this link it gives detail's about creatine. myositis.org/storage/docume...

onlinelibrary.wiley.com/doi...

myositis.org/your-myositis-...

youtube.com/watch?v=gZ1Dn4d...(Not working as expected?)

youtube.com/watch?v=nLTiJOf...(Not working as expected?)

[wotshernameagain in reply to Jo-Goode]

Thanks for this

When every I try to talk to my medical professional’s to get advice about how to do it safely they are so unhelpful

But I don't want to sit and waste away

[Hidden in reply to wotshernameagain]

I got a referral (from my GP) to my local NHS Scotland physio dept and they have been quite helpful, they seem to have more time to spend with patients (than GPs have) and they do have some medical knowledge so can be both sympathetic to your condition as well as offering practical help. I'm sure they would not ask you to do anything that might do any damage.

[wotshernameagain in reply to Hidden]

I'm going to ask my GP about that I didn't even think that was an option

[Jo-Goode Administrator]

Which hospital are you treated? I can't understand why they are being unhelpful and not referring you for advice from a physiotherapist.

[wotshernameagain]

I'm under Kings College Hospital

[Jo-Goode Administrator in reply to wotshernameagain]

Dr Gordon would be very aware of how exercise can aid recovery and I would have thought the team would be more helpful with suggestions. Sadly there is no specialist Myositis physiotherapist at Kings as there is no funding available. I had a discussion about it a couple of years ago after the specialist Myositis physiotherapist from Bath hospital spoke at the Myositis UK conference. I was keen to find out how much it would cost have a physiotherapist at Kings who could train as a specialist in Myositis because of the large number of Myositis patients there; to my dismay the figure needed per year would be around £50,000, which was too high for Myositis UK to fund on a long term basis.

If Kings College is your local hospital ask if it's possible to be referred for physiotherapy there, or consider being referred to your local hospital.

When I was first diagnosed hydrotherapy was limited to the time I was in hospital and ten weeks after. The hydro pool was something I found very helpful so when I no longer had access to it my husband took me to the local swimming pool and we used the warm baby pool.

Orpington Hospital is under the management of Kings and has a pool, perhaps you could ask if a referral is possible there kch.nhs.uk/news/media/press...

[wotshernameagain in reply to Jo-Goode]

I am going to my GP tomorrow so I shall also put the question to them also.

[Jo-Goode Administrator]

In case you have not seen, there is a afternoon tea for those with Myositis to meet and chat on 11th February. meetup.com/MyositisUK/