Recently diagnosed Looking for a positive out look on DM!

[Welshie_j]

Hi All, I was recently diagnosed on the 6th July with Anti-synthetase, DM -anti jjo 1 and ILD! I was perfectly healthy 14 weeks ago life was normal. just wanted to hear positive stories as I process this diagnoses. I am doing mediation very day, yoga and walking. I'm researching the positives for hope and understanding, as this is all new to me. Yeah get in touch. Jacqui.

[Jimbo22]

Hi Jacqui, first of all sorry to hear about your diagnosis.

I was diagnosed around two years ago with anti sythatase, anti PL12 with ILD. It really does come as a shock, especially as it is rare and difficult to understand. I went from running marathons to not being able to run half a mile. I think I am still learning to accept it, but my routine of exercise and medication has meant things have settled.

It sounds like you are doing the right things. I would say one of the most important things is exercise. I have managed to build my running up to around 6-7k now (just a lot slower) . I have found that it a good indicator of my own fitness levels. Yoga is great, I have found especially for my legs. I have also done some weights on my legs to build muscle but I think everyone should do what makes them feel good.

I would say do exercise that you can enjoy and work to your own limits. I always discuss my exercise with my doctors too, but they were surprised especially at my running distance so it is possible to push on and improve and feel better. (just slow and steady).

I hope that helps. Good luck with everything.

[Welshie_j in reply to Jimbo22]

Hi Thank for your response, yes I agree the shock of it all is really something to come to terms with. It really has impacted on my mental health. I have built up my exercise with walking and cycling, being out doors is important for me, but I Just find my life has changed in so many ways since my diagnosis and its not me.

I am pleased you are pushing the bouderies and I am of that mindset too, as I am so determined but when its every it does get you down and I just want I feel normal again, but I know that I never will. Its like I have what the Buddhist refer to has a chattering monkey mind, my mind is in over drive with my thoughts from the time I wake up to the time I go to sleep. I just hate the condition and the worries about the future I just dont want to lose my mobility.

[Jo-Goode Administrator]

Hi Jacqui,

With treatment many do well managing AS and one lady I know has had the condition for over 25 years when diagnosed at a time when very little was known and how to treat it.

Unfortunately Dr Google can paint a very bleak picture in contrast to most patients I know, with good treatment management live "well" with the condition.

Our larger UK only forum is on facebook and we have more AS patients in this group facebook.com/groups/Myositi...

This is a link to a worldwide AS support group, but does have two UK admins facebook.com/groups/Antisyn...

Kind Regards,

Jo (Myositis UK Trustee/Treasurer)

[Welshie_j in reply to Jo-Goode]

Jo thank you yes I’m on Facebook! It’s just really positive that people are living with it longer! You run the Facebook group? Your doing a grand job in helping people connect! 🙌🏻

[Jobug]

It is good to keep positive. Keeping a regular stretch and exercise schedule helps with the muscle side of things. Do nee exercises with slow progress. When increasing repetitions, only do maybe 2 or so, versus 5-10 that a “Normal healthy” person may do. We need to go slower in order to not cause damage or cause setbacks.

Perhaps you have already found all that info by now.

Honestly, the Myositis groups in faceboook have been the most helpful and supportive for me. They give great advise and encouragement in. This journey.

Message me if you need to chat.

Melissa

[Welshie_j in reply to Jobug]

Hi Melissa thank you so much for your response and the advice I really appreciate it. I have over the last month or two built up my exercise and I am keeping as mobile as I possibly can. Yeah I am on the group.? I know that my symptoms are not as severe as some of the others and I feel selfish for even moaning about things. While the Dr believes they have caught it at the early stages, I am worrying so much about the future and losing my mobility.

As the time goes on and coming to terms with the condition, mentally its one of the hardest things I have had to endure. The worries and the uncertainty no one understands, while I share some of the troubles, I am also aware not to overwhelm people. This is not the way I envisaged my life. Remaining positive has become a battle that I am enduring in more recent weeks.

It would be great to chat about normal things as well as the condition.

Kind regards

Jacqui

[Jobug in reply to Welshie_j]

I completely understand! It affects every area of your life. I'll reply further in a private message

[Smarty12]

Hi Jacqui,It is a shock to the system when you receive a diagnosis that you have Dermatomyositis. I remember how scared, anxious and just absolutely annoyed I felt when I was told I had DM. That was over 13 years ago and up until then I had been going to the gym twice a day and was very healthy. It did take time to find the right medications as I was also diagnosed with psoriatic arthritis at the same time. Now years on with a positive attitude and good medical specialists I do zumba, weights, walking and workout videos on YouTube. Of course there are some days I absolutely can't and I feel wiped out so on those days I'm just kind to myself. Keep positive and take it one day at a time is my best advice to you. Take care and I wish you the best for your future. V

[Welshie_j in reply to Smarty12]

Smarty12 many thanks for taking your time to respond with words of wisdom and encouragement that’s very gracious of you. Yes indeed it has come as a shock and like wise hard to accept .... that’s extremely positive to know and for you to share that you have lived with the condition for 13 years, my concern is my antisynthetase... unfortunately statistics in relation to that condition are not so positive. Any how like you I take your mental approach to managing the conditions and exercise regularly......but at times my mind does become distracted with worry over my conditions but again it’s only been 7 months since my diagnosis and acceptance is a process I guess... x