I also have muscle spasms and shaking.  I first noticed the shaking shortly before my diagnosis in 2015.   I have IBM  (inclusion body myositis) it too is a rare form of MD.  My shaking or spasms can happen in my arm’s or leg’s and usually when I am tired or I have over done it.   Stress and having a cold or sickness also affects my… Read more

I still go to get my haircut,  but like you my hairdresser just sprays my hair with water.   She usually cuts my hair short or sometimes I get a perm.   Low maintenance hairstyles are much easier.

I agree!   You have to plan out what you’re going to do and on what day to avoid burn out .  Lol I still have trouble with that too!

I also have discomfort from MD.   Although it’s not everyday.   Most of the time it’s around my neck or shoulders.  I have also experienced soreness or cramping in my lower legs.   I find that doing some stretching helps, also not overdoing any activity.   I have had to learn to take a break and rest.

I have done some research on service dog’s .  Most agencies have a long wait time and approval process,  anywhere from 1 to 3 year’s.   Most also will not let you have another pet in the home.   I didn’t have that kind of time to wait for a service dog.  My doctor has told me since my diagnosis that I need to keep moving, walking as much as… Read more

Yes, I have learned that I need to ask for help.  My husband usually stands and waits for me to get up or ask for help.   It’s hard to loose your independence and rely on others.

The fatigue was one of the hardest things for me to deal with when I was first diagnosed.   I take Methotrexate and it has helped me a lot with the fatigue.   I still get tired and have to rest , but I rarely take a nap.   I just started the medicine back in the summer,  before then just taking a shower wiped me out.   I had to learn to pace… Read more

If I’m in a restaurant chair I push up from the middle edge of the chair.   If I’m in a booth I use the back part of the seat back  and the table.  Booth seats are becoming increasingly harder.

I totally agree with you!   Don’t stop moving, even for a day!   Never give up!

I don’t always walk for 30 minutes all at once.   Sometimes it’s only 15 or 20 minutes at a time.   I listen to my body.  I take Methotrexate it helps with the fatigue,  but not with strength or muscle loss.   I too wish I had been a lot more active early on when first diagnosed.   I feel for you having gotten this disease at such a young… Read more

I was diagnosed in 2015 with Distal Muscular Dystrophy.   Last year  (June of 2018) my doctor did a muscle biopsy and changed my diagnosis to  Inclusion Body Myositis.   I guess it’s under myotonic Dystrophy.   However I know mine is a little different because it’s autoimmune related.

I walk everyday usually for at least 30 minutes.  I cannot lift much with  my hand’s, those muscles are very weak.  I think any kind of movement for people with MD is good.