New to the site but have had PP MS for 19 years. The MS has been really good to me as you can see I’m still here after 19 years and doing fine. Unfortunately, the last two years have been rotten. Because I always felt so well I seldom saw a doctor. I did see an MS nurse and we used to chat about the weather! In all of those years, she never mentioned the dangers of osteo porosis. She now says it’s not usually a problem for MS sufferers. Here is my tale of woe and a warning to anybody who uses a wheelchair regularly. Your bones do not last as long as you do! It never occurred to me that I should be taking calcium and vitamin D supplements and doing lots of osteoporosis exercises for my bones. As a result I fell and broke my hip two years ago I have a T score of -3.3 in my hips which is awful. I am now on horrible medication. To make matters worse the half hip replacement they gave me has caused a lot of pain and I now have osteoarthritis in my other hip because of putting too much pressure on it. I don’t know if there is anyone else out there who has osteoarthritis because of the lack of muscle strength in the thighs but it’s another reason to keep active. I am really posting this in the hope that it might benefit someone else. If I could have the last 15 years again I would do things so differently. I would buy myself a mini treadmill so I could hold on when I walked and do a least 40 minutes a day on it. If I couldn’t do that I’d swim or do yoga. It was because I felt so healthy that I was out all day working and sitting in a wheelchair doing nothing for my muscles or bones and the problems that has now caused are worse than the MS. I am at rock bottom emotionally and can’t stop feeling angry that it could have been avoided. To anyone who reads this, keep that impact going through your bones if you can!
Excellent post. Welcome to the forum Carola.
I have just learned that bone density is more likely to be reduced by inactivity than by (for eg) steroids.
So activity is vital. It’s a bit late for me too.
That is definitely a cautionary tale for anyone, like myself, who thinks that spending all day in a wheelchair is taking the easy route. In spite of the enormous effort needed I shall continue to stay on my feet as long as possible. I don’t have a MS nurse, to speak of, and I’ve come to rely on the wisdom of these pages. Thank you, Carol, for reminding me that staying fit needs hard work. I hope to see more of you in the future. Regards, Anthony
I think a wonderful but sad post. I am sure i was called for a bone density test years ago now not sure why. it should be mandatory in the uk age 65 is too late. younger people are now suffering osteoporosis because of inactivity playing games etc on playstations. My mother had it terribly bad but she was 93. she died of a misdiagnosed stress fracture of the hip. because of my family history i am anal about taking in calcium and vit D. it has to be a combination. I try to walk everyday its hard sometimes but i do it. women in menopause are more prone to it, so even without the MS you may have got osteo. I am so sorry you have had to go through this. I saw my mum and my MIL with osteo i have it minor in my tail this was down to a fracture fall. and it seems to have taking a liking to this space, but my calcium levels are good at the moment. I think perhaps all people in wheelchairs should be given the combination tablet to ward off osteo. My husband was on it for steroid use. thanks again for your post.
Welcome to the MS gang, sorry you’ve had to join us but glad you’ve come on this site.
Thanks for posting this as a reminder to everyone. ‘Use it or loose it’ is a phrase we often hear.
Better stop sitting down on my laptop and do some jobs!