Sorry no one told you about falling. I fell one time right before I was diagnosed and it was so humiliating. I was trying to go to Monster Pets with my kids and tried to step up on the curb. Apparently my leg didn't lift as high as I thought and down I went. People are riding by an laughing at me and I couldn't get up. It took all four of my kids to help lift me off the ground. And at my ae no one expects for you to have a disease that makes you fall so there was no sympathy from anyone. I can now laugh about it but I am very wary of falling again. When I step on and off curbs I make sure I hold onto something or someone. Actually I just hold on to stuff alot. The falling does get better once you regain some strength so hang in there and hold on :)

I fell a lot before I got diagnosed. One time I was out with a group of friends and fell while crossing the street, ugh it was awful. But the worst time, I was carrying a bunch of stuff to class and tripped on something (or nothing?) and fell forward, dropping ALL my stuff and hitting my head pretty hard on some concrete. Then, when I tried to stand up, I was too weak and fell backwards. It was awful, and I had to go to class with bloody knees and mulch in my hair.

The falling disappeared for me with treatment; are you on prednisone or something else?

The prednisone helped me substantially with falling. I have only had two falling episodes so far, both times involving curbs, probably thinking the legs were higher than they were. Hang in there, sorry no one warned you, Hang in there.

Oh my, I am so sorry! I feel you, the last two days I have been crying at the drop of a hat for any reason at all, just feeling overwhelmed (and am on lots of steroids) I fell once right before being diagnosed, and it was so humiliating! I was walking through my neighborhood and fell on nothing, thought no one was around so I just let my emotions go--I wasn't really hurt but I was so mad that I didn't seem to have control of my body that I was crying and cursing. Anyway, there was totally a family seeing this happen and I was so embarrassed!

I am so sorry you fell. I used to fall quite a bit....over nothing. I changed my shoes to good tight shoes and have flat and flexible bottoms so I don't have to worry about my shoes messing me up. I also watch my steps very closely. I've not fallen for 2 years now.

As you get stronger, you will find you fall less.

I read that this disease is progressive so that tells me a wheel chair is probably in my future. I hope to hold off for a really long time. There are all the medications we all take that help control the disease. These are highly effective and will stop the disease from progressing.

I went 4 years before I was diagnosed and things were BAD for me. At the time, I didn't think it would possibly get better. But it did and I am doing so much better. You will get better too. Keep doing all your exercises and taking your medications. Know it will get better. We are all proof of that.

Be strong. You will get used to this condition.
when you are walking watch your stepes.
I have had some falling, but now when i am walking i am looking down.
Michael PM

I am so sorry to hear of your falling. Everyone here has given good advice. Make sure to wear supportive shoes that are securely fastened. Concentrate of your walking and surroundings--especially around curbs and on steps. Definitely hold onto handrails, people's arms, walls, or whatever is available. Be especially careful if you are walking with someone and talking, as that might take away your concentration. Also, when you first stand up from a seated position, stand still for a few moments before beginning to walk. Since falling and breaking my leg (requiring surgery, thanks to osteoporosis from prednisone), I often use a cane when in a crowd or unfamiliar surroundings. I learned that, while a cane may seem embarrassing, it's not as bad as falling and being unable to get back up (or as bad as breaking something). BTW, they make canes that fold up and can fit into a purse or deep pocket, so you can carry it with you somewhat hidden until you need it. Here's wishing you well, and better days ahead.

PM attacks your proximal muscles and you will have trouble lifting your legs among the possible problems. This weakness causes the tripping and to compound the situation, your pelvic girdle and glutes are not strong enough to regain equilibrium, so you fall and maybe need help to get back on your feet.
PM does not automatically lead to the wheelchair. If you take your immunosuppressants and steroids in the correct dosage, inflammation should go down and allow you to exercise (you need a specific routine that works the proximal muscles that were attacked). It takes time to rebuild the muscles but it can be done. It worked for me. Don't lose hope. Hang in there.

Listen to Levek. It's sometimes an uphill battle but you can do it. When you can you're going to have to exercise your butt off (ha-ha) to build-up the muscle that is left. It's not impossible.

That is great news Levek. I like what you know more than what I hear. I agree the right drugs and exercise seems to make things so much better.

Thank you so much every one - just what I needed some great people who understand.
I am feeling a lot more accepting today, obviously just the continual ongoing process of grief (probably with any disease) denial, anger, bargaining, depression and acceptance and then around we go again.
I have been reading all your posts and other things that may happen and how to cope. Thanks.

I agree...I fell down SO MANY times when I was first diagnosed with PM and in the worst state possible. It will get better..

Sorry to hear your having additional problems. I went through a phase of falling this summer and however humiliating it was I made sure I watched where I walked and not to walk fast. I had a habit of forgetting I had DM and walking fast like I use to before and sure enough tripping over my own feet cause me to trip/stumble and fall. My last epoisode ended with a big hickey on my forehead. Luckly nothing serious developed.

I agree that continuing your medication will help strenghten your muscles and falling won't be the norm. Just be aware at all times.

hey freelee,

i am so sorry that you're having such a hard time right now. it is really frustrating to not feel in full control of your body. back in september i thought i was doing so good and starting to get my life back. my husband and i were preparing for a trip to st louis with my family... it was kind of a good stressful time. i didn't realize i was overdoing it. i went to let my dogs outside and took the tiny one step down from the front porch and just completely fell.

i was in such shock. i could barely get my hands under me in time. of course this just HAD to happen while my neighbors were outside. i was so horribly embarrassed, scared, and shocked. i just couldn't get over that feeling of helplessness as i fell and the fact that at the time i could seemingly do nothing about it.

levek and zzz1 are totally right though. with perseverance and positive attitude this will most definitely get better. now that you're on the azathioprine just give it a little more time to kick in. make sure you're keeping inventory of your physical activity to make sure you're not totally over doing it. make sure you have good positive rest and relaxation time each day to decompress and rid yourself of stress. soon you will be able to get back to rebuilding some of that muscle strength. i haven't fallen since and continue to progress. it's very slow, but it's happening.

big hugs!!
nicole

Thanks for asking the question, Freelee, and thank you everybody who responded. Now I know my lightheadedness, imbalance and difficulties with steps is part of this disease. I thought it was the medications that were to blame, and I'm sure they add to the misery, but in time, when the inflammation subsides, hopefully things will improve. Levek's insight is always appreciated.