Necrotising myosotis

[Eddie1969]

Hi, does anyone get restless legs, like pins and needles at night and muscle aches in legs, hips and forearms, mainly at night. I have not been put on any medication for my myositis as still being reviewed. My wrists and finger ache during the day as well as my forearms.

Once I am up and moving around my legs feel better.

Is this part of my illness progression and is there anything I can do to help it.

Can anyone help

Thanks tracey

[Gus785]

Hi ya , I didn’t have pins and needles but definitely the aches in fingers. Now I’m on steroids it’s reduced but still there but I guess you get used to it

[Eddie1969 in reply to Gus785]

Hi, thank you for your reply.

Have you been diagnosed with Necrotising myosotis then. I have been given the diagnosis but no medication as yet. I have a review again in march.

Have you found it to be a slow progression of the symptoms and did it take a while before being give the steroids?

You are right, I seem to have just got used to the aches and pains. My forearms are the worst and my hands and fingers during the day.

Thanks again

[Theironfacade]

I have dermatamyositis. I have had periods of restless arms and legs over the years. I did not associate it with myositis, but now you have me thinking. I also suffered with severe pain in wrists and arms. I lost the ability to twist my wrist, like wringing out a cloth. And had no strength at all. Once on medication things did improve .

There is a TMA video on YouTube for hand exercise you might find helpful, once you have started your treatment.

Have you been referred for physio therapy ? They should be able to help you.

Take care.

[Eddie1969 in reply to Theironfacade]

Hi sorry had not replied been unwell.

I haven’t been offered physio yet as have a review in March with my consultant.

Just wanted to ask, when you say you lost the ability to twist your wrist, was that gradual over time, as I have been getting a weak wrist that comes and goes. It feels like a sprain, but for no reason. I then have no strength to pick stuff up or even turn a key without a lot of pain.

I am still waiting for blood test results too. As well my pins and needles, these come and go in my legs , hands and feet, is that the same for you.

Thanks for your reply. Going to watch the video too. Take care

[Theironfacade in reply to Eddie1969]

I am sorry you have been unwell, I hope you are feeling better.My muscle weakness did come on very quickly, I would say over a fortnight.

I also found door handles a problem. Especially external doors because you have to push the handle up, before you can turn the lock.

There were two problems picking things up. One was a lack of strength . The other was more dexterity. I can only describe it as being slightly off, I could pick something up ,but it did not feel it was secure in my hand. Also when I poured liquid or powder into a glass I had to be careful. Some would go into the glass and some on to the worktop.

The strength has improved since I started on the methotrexate. The numbness and pains in my knuckles are also improving, though I do try to avoid task were I bend my wrist, as this position seems to aggravate matters

I have noticed as I have reduced the steroid dose , some symptoms are starting to flare. Not to the same extent by any means, but it was worrying enough to mention to the rheumatologist. He told me if it continues to alter my steroid dose and get back in touch with them, as they may need to add another medication.

I hope you do not have long to wait for your results. I would mention your pins and needles to your consultant. Make a list of questions you want to ask, then you do not forget anything. It is so easy to get side tracked when speaking to them.

Take care .