Myositis? Muscle damage?

[Mombie]

Hi,
I have a rheumatology appointment tomorrow for suspected inflammatory myositis. Does anybody have any experience of this condition? I can’t seem to find much information about it. I have detailed my experience below (bit long, apologies!) if anybody can relate.

My story so far: I have been generally well and active. I teach early years so up until October, I was used to being on my feet and on the go.
Early October I was unwell and “fluey”.
Mid October - Feeling very anxious and stressed, very fuzzy minded. I was prescribed antidepressants by the doctor. I took these for about a week and stopped because of side effects.
Around this time, I noticed I was very breathless and my legs were feeling heavy. I couldn’t walk to my car without being short of breath.
Dr prescribed iron tablets and vitamin D.

Heaviness in my legs has continued and mobility have steadily decreased since then. Drs thought it might be sciatica/pinched nerves and referred me for an MRI. Started to get bluish patches on my fingers/ hands.
Early December- Using a crutch now and struggling to climb steps. Further visits to the Dr and bloods reveal high Creatine Kinase levels (2990) so suspected muscle damage and referred to Rheumatology.

Now, 3 months after this all began, I can barely stand. My legs and back are so weak and wobbly. I’m using a crutch around the house because I can’t hold my torso upright. My arms feel heavy and I am noticing that swallowing is a bit difficult. I am just so breathless and exhausted all the time.

I am so worried because I don’t know what this means long term. Whether I will ever be able to walk unaided again or be able to work. I just don’t know. If my life has changed permanently, I can come to terms with it and make adjustments but I just need to know what to do and what to expect. The drs seem as clueless as me.

Does anybody have any experience of myositis or have you experienced a rapid decline like this? Any words of wisdom or advice are much appreciated. Thanks

Hi, just read your post and then googled myositis. I have been having similarish problems to you - very achey legs for the last 9 months or so. It hurts my muscles to lift my legs and I find it easier going upstairs on all fours now. My muscles feel weak.

No diagnosis on my part but I am undergoing blood tests. I might ask my doctor about myositis.

Sorry to hear that you are in pain. Do you ordinarily have joint issues?

Hi, thanks for your reply. I’m sorry to hear that you are going through something similar. I hope you manage to get to the bottom of it. Ask your Dr about checking your CK levels. This was only flagged up late by a Dr in December as it was thought to be hormones, vitamin deficiency and sciatica before that. I have had stiff/achey joints in the past but nothing like this.

I had something vaguely similar but not so severe. Vitamin d levels was in the ok range but the rheumatologist said they was too low. Liquid Vitamin d helped a lot. I was supposed to get it rechecked but havent got round to having my bloods. The aches and breathlessness went very quickly. I hope its something like that for you. I had one high Ck result but it was around 300 then next test it was ok.

Sorry to hear that you’ve been feeling so unwell.

I hope that your Rheumatology appointment was helpful - I have Myositis if you have any questions.

My aunt had similar symptoms to this and it turned out to be as a result of coeliac disease. She went on a gluten free diet and the symptoms disappeared!

@KnottyKnitting yes I know someone else who had myositis caused by undiagnosed coeliac disease. They are doing much better now.

I horn

Posted too soon. I hope your appointment went well @Mombie

I have a condition called myasthenia gravis. I really sympathise with the feeling of wondering when you will feel better again

Thank you for all of the responses. I have since had my appointment and continued to deteriorate and so I have started a strong course of steroids to bring the inflammation down. The drs seem to have a plan now.

I was feeling more breathless too which was really scary. I have some scans and tests coming up and once the Dr has determined the cause/ type of myositis I can begin proper treatment so 🤞🏽. I really want to be able to stand and walk again, and do all the stupid things that I took for granted like just pop to the shops last minute because I always used to do last minute, spur of the moment things but everything takes so much effort and time now. I have never realised how bloody inaccessible most places are either. I took my children to a soft play place recently and couldn’t decide between the mile long ramp or save some time and just throw myself down the stairs!

@SweetSakura @KnottyKnitting that is interesting about coeliac disease, I didn’t know there was a link.
@mellowyellowme i have never had anything other than a few aches and pains. This was very different. Like one day, I just realised I was dragging my right leg and my knees were wobbling.

@Pennyforthezombies i hope you don’t mind me asking what type of myositis you have and if you have managed to regain strength after a flare up?

Hi Mombie - I started with Amyopathic Dermatomyositis three years ago and I can say this with some confidence, because it wasn’t treated aggressively early on, I have progressed to having muscle and lung involvement. So I’m pleased to hear that they have put you on steroids which for me has given me has been the turning point and given me back my independence and although not near my previous level of fitness, certainly a big improvement.

I’m also on Mycophenelate for the lung involvement and will be on steroids for the foreseeable.

I know how scary this diagnosis can be but the one piece of advice I have is to eat well and keep moving - I know that sounds scary when your legs can barely support you getting out of a chair and your thighs are screaming at you to just sit, but even if it’s just some very light weights and walking around the house initially. The biggest shock for me was having to time how long it took me to cross a road and not get run over because I was suddenly so slow with a dragging foot 😄as you say, your take this all for granted!

You will feel better on the steroids, hopefully in a few weeks you’ll start feeling the difference. Myositis UK are excellent resource and I have found them really informative and helpful, but let us know how you get on and what your results say.

@Pennyforthezombies thanks for sharing your story and suggestions. I’m so sorry to hear about the damage to your lungs and muscles. In my heart, I feel like there is something not right with my breathing and have had a CT scan so I’m hoping this will be ok. The steroids have given me a burst of energy and I can’t sleep but I will take that over the alternative.

I’m pleased to hear that you have regained strength and will follow your advice about food and exercise. Thanks again x

@Mombie hi, I wondered how you are doing now? I have almost exactly the same symptoms/diagnosis and have recently started steroids. It would be good to know how things are going for you with this awful illness. Take care x

@Summerdaya hi hope you are doing ok. I am doing much better than before. I’m not 💯 but able to get about a lot more than before. Reading my original post, i felt utter despair because I didn’t know if I would ever feel better. I don’t feel like that now so it will get better x

Now I know that this will be a long term condition and although I might not get to back to full mobility, I can manage things and get up and about now with the help of medication.
Unfortunately the steroids only worked for a little while and then stopped so my CK continued to climb. I am now taking a combination of 2 immunosuppressants: azathioprine and methotrexate and a lower dose of the steroids. It is a lot of medication but I feel a lot better than I did in December and I’m hopefully.

I am also more conscious of my diet and exercise so reducing sugar and eating less processed food. I try to keep moving but am careful not to push myself too because it leads to feeling crap the next day. Myositis UK is very helpful and they have a Facebook group which I’ve found very useful.

I hope you aren’t feeling too down about your diagnosis and that the medication helps you to feel betters

Thanks so much for replying. It’s horrible isn’t it. It just seemed to come out of nowhere. I’m glad you are feeling better than you were in December. I’m trying not to think to far ahead at the moment as it’s scary. My CK was over 7600 when they first tested so they started steroids while waiting for biopsy and other results to come back. Hoping it comes down a bit. I read that they have to tailor the medications for each person so I hope you continue to improve on your current plan.

Thanks again for taking the time to reply. I really appreciate it.

It is really scary especially as people don’t really know much about it. It’s a good thing that they are doing your biopsy and hopefully that gives you a bit more clarity. Mine confirmed the diagnosis.

It did just come out of nowhere, drs think that mine was underlying and triggered by a virus. I’m trying to focus on positives and make healthy life changes ( listening to my body and learning to say no) as I don’t know about you but I was quite stressed and burnt out before my symptoms started and I’m convinced this played a part.

Yes I was the same, work and home were both crazy busy. The hospital think mine might be covid related and have asked if I would be willing to take part in research. I got the pack through from myositis uk and had a go at the exercises….I could barely do any of them but strangely felt better after so I’m going to try to do them every day.