Hi,
I have just joined the site, what kind of foods should I be eating as my myositis flares all the time.
I also like to exercise but when I do, I am extremely exhausted so I find it very frustrating as am not able to do much exercise. What is the best exercise for me as I don't want to lose muscle?
A general healthy diet should suffice.
Exercise can begin 4 weeks after starting treatment, slowly building up; you will get tied but this does slowly start to improve
Exercise combined with creatine, amounts shown in link 37fa343y5czt13hd4izqqhj1-wp...
youtube.com/watch?v=gPlWfz_...
Regards,
Jo
Can I ask, when you say it flares up what does this mean to you?
I would say I have flares and when I do I struggle to pick my own legs up , swallowing difficulties, unable to keep my head up without chronic neck pain , and difficulties controlling bladder. This is just some of my list. I do have better days when all this isn’t as bad which leaves me totally confused 🤷♀️
X
Hiya. When i flare, my muscles are like they on fire. The pain is so bad, no pain killers can make the pain better. I struggle to walk up and down the stairs and even on flat ground. Pain is especially bad on the back of my neck area. Pain is all over the body. My flare does get better when steriods are increased. But i have recently had rituxamub treatment. Hopefully it will improve symptoms. I do have good days too but i have learnt to live with every day aches and pain x
I have been eagerly awaiting this reply. This sounds very similar to me. But some days I’m ok, recently more bad than good. Have you had all your muscle function tests done ?
I’ve recently noticed as well when my neck aches and I can’t keep it up properly I break out in a rash on my chest. I would be really interested in talking to you some more, as I can’t get my head around the fact some days my legs feel completely normal and the next they feel like dead weights
X
My legs are the same actually. I find when i don't do any exercise at all. I really struggle to walk. When am walking, it's like someone is pulling me from behind. I don't really know why they feel like that but exercise helps me a little but it's exhausted. I found last year that over exercise causes my myositis to flare
I have had muscle functions done. I have had all sorts of tests under the sun done. I have had myositis since 2013 where i was hospitalised for 4 months unable to move any muscle in my body. I had to learn how to walk again. It took me 6 months to be able to walk properly again x
I tried taking up walking last year, and the back of my calms woulc burn real bad. I spoke to a few sports therapist and they just couldn’t help. I can explain it abit like I’ve had a blood pressure band put around my calves and it just keeps squeezing. What type of Myositis do you have?
The swallowing is by far the worst symptom of all for me x
I have polymyositis. Generally my whole body aches all the time. General weakness is my main symptom but i don't problems swallowing. I did when i was severely ill in 2013. I had to have puree food then. If anyone saw me now, they would think there's anything wrong with me. I have learnt to live with myositis x
Glad your managing well
How was this diagnosed?
My worry is I do have muscle involvement but not constantly, so will the muscle problem I have bee ignored 🤔 I’m 38 and feel like 83
Do you take much medication to help control it?
I have awful skin rashes too which is hard to deal with
X
Hiya,
I had a biopsy done in 2013 when my myositis was very active. They cut a piece of muscle from my leg, it was only a tiny cut and sent it off to the lab.
I take 3 strong meds to manager it. I am on steroids too but my meds have changed many times but these don't actually stop the pain.
I don't have any skin rashes, mine is more muscle weakness by I do have very dry skin which have manage by just normal lotion daily.
You probably need to get biopsy done for your muscle.
I will be talking to my constant about the daily pain next time I have my appointment if it does not improve X
You are being so helpful and actually making me start to believe in myself.
I felt well today so decided to actually go and walk around the shops, I wish I hadn’t after 45 minutes all my hips were burning with an ache feeling and kept feeling a sense of vertigo.
I guess the muscle biopsy has to be performed during a flare up ?
I get a thick dryness on the palm of my hands which makes them hard to use and my ears are extremely dry and I always get scabby dry lips which looks horrendous. So much I’ve just accepted as normal but deep down this is just not normal.
I went swimming at Christmas for 20 mins , the fatigue after was awful, but again I just thought I was lazy x
Am glad you went out for a walk. I only do a Maximum 15mins exercise so not too exhausted afterward because over exercising leads to a flare. If I have to go shopping. I take lots of breaks.
I think biopsy can be done anything time whether you are flaring or not.
I also suffer with fatigue which most people don't seem to understand that am exhausted all the time.
if you feel too exhausted. Listen to your body,before I used to just keep going until i couldn't anymore. I learnt to take it easy coz I have an illness.
swimming is good for muscle.
So you are not alone even if it affects us in different ways x
I have found great comfort with your advice. I am constantly fatigued, but just before I flare I almost come over as if I have been sedated!
This morning I couldn’t feel my hands and they turn grey , it doesn’t look like typical Raynauds just dead! Not sure what this is but have got a decent photo to take to dermatologist tomorrow!
Flares would also be consistent with my lack of bladder control, everything becomes empty in that area, there’s just no muscle to hold urine in
This returns to normal once flare has passed
I on quite a low today, this is so touch x
Sorry to hear that. Hopefully they will tell what it is. I also experience muscle weakness when i flaring. The only time i have extreme muscle weakness is when i have had an operation. I have had several operations not because of Myositis. My legs become weak, a cup of tea is had to hold plus i have to use walking stick to support walking. After recovering my muscles regain strength. My main reason for regular exercise is not to loose muscle strength. I spoke to consultant about referral for physiotherapy. It's important to see doctor when you don't feel too well. From experience it can go from 0 to 100 really quickly.
Hope you feel better soon. Let me know how it goes x
Thank you
Starting to make sense a lot of it. There doesn’t seem to be much support out there for this autoimmune dysfunction, it’s horrible to call it a disease.
Hopefully not too many operations in the pipeline for you
Xx
It's not a known auto immune condition. I used to feel very much alone. Not many people know about it. It's good to talk to someone who has it too. Just to understand how they are affected by it. Hopefully no more ops for me. It's a set back for me. It takes me too long to recover. It affects my work coz work is an escape for. Takes my mind of the pain. Feels like am living a normal life like other people.
Good luck tomorrow x
There is an increasing body of research which suggest that the state of your gut is an important contribution to the state of your health. While we are all different, consensus suggest that most of us should increase the fibre content of or meals, eat fermented vegetables and yogurt. Vitamins are important like Vt c and e also omega 6. Minerals are important especially calcium if you are on prednisolone
identify food intolerances.
good fortune!
Struggling to find a solution
21and new to having dermato, looking for guidance on how the treatment will be!
Hi, new here, and would like some help if you could please? :)
Inclusion Body Myositis