Recently diagnosed with GCA and PMR, and feeling so better on steroids yet had a gentle reminder today. The young man was asking me to raise both my legs high enough so he could get a wedge beneath them for my bone density scan. He kept asking me to move my legs higher when I thought I was! I just couldn't get my muscles to move anymore. How embarrassing to have to ask for help. It's only two weeks or so on the steroids. I just didn't realize my extreme movements were still limited. Oh well.
Thankful for the diagnosis, and nervous for my new journey! I can't imagine what is is like for folks who are still struggling without care.
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Tj2017
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I was coming out of the medical centre yesterday with my recently purchased Amazon stick and a lady rushed up to me to offer me her arm on the other side. She told me that her husband had double cancer and I think by helping me she got a good feeling, it was nice to think that perhaps I had also helped her.
I know what you mean. We must remember that when we get help, whether asked for or not, we are contributing to the good karma of the person who helps us.
I used to stagger along like a penguin, I was reluctant of getting a stick, but it has made walking a lot easier in fact. Also I am very slow at walking and without a stick people seemed annoyed, now I have people helping me wherever I go. Perhaps I come over as rather pathetic!
I hesitated too but bought one from a disability shop at the weekend. I bought the folding variety which I was dubious about but it is very sturdy and can be put in your bag when you don't need it. Get one and feel the relief.
Seems almost like I would be giving in - like many on this forum I am comparatively young at 57 and just keep thinking tomorrow has to be better ....... it has been mentioned I am stubborn - I have had a few falls so should properly consider it. Thank you
If you wear specs because you can't see properly then is using a walking stick because your balance isn't all it might be any different?
Someone on the lupus forum was having a meltdown because she is losing out on everything and regarded having a scooter as "giving in". We talked her round and she ordered one to take with her to Spain on holiday. There she did all she is used to doing, walks along the prom, going out to dinner - but wasn't so exhausted she had to retreat to bed and not be able to do the things she enjoys. She is far younger than you.
Someone with PMR from Devon had had to give up his cliff walks - until he bought an off-road version. Said he wished he'd done it long before.
Lesley, since I had my stick which took me a long time to decide to buy, I have had people rushing round to help. I have doors opened for me, someone leaving the swimming pool offered to carry my bag in even though she was going the other way, I get offered arms to help me up steps, offers of carrying things, things picked up when I drop them. I was in the Post Office collecting a parcel recently and sat down on a very low chair they had as there was a long queue. Someone took my card to the counter for me and collected my parcel. Then three people rushed to help me stand up again, I could not believe it. I should have got a stick years ago!!
I got a stick that folds up. I don't actually use the facility but it was cheap. One problem was I had to get a new ferrel for the end virtually immediately as it fell to pieces. My stick has now developed a squeak much to the amusement of my GP as she can hear me coming! WD40 where are you?
You might want to consider asking for physical therapy. My doctor recommended it and when I went for the initial evaluation I was completely shocked that certain hip and shoulder muscle were practically non-existent. For example, I could not lay on my side and lift my top leg like a clam shell, and if I held my arms out, the therapist could push my arm down with only the slightest of feather-like pressure. 8 weeks of therapy 2x a week, and those muscles are all working properly again.
It was so strange because I was functioning (as well as any of us due at our limited PMR abilities) and had no clue that some muscles just were not working. I was on steroids about 18 months at that point-so further along than you-and that might make a difference. But, I often wondered if it wouldn't have helped me more if I had done the therapy earlier in the disease process. I did talk to the therapists about PMR and they were very concious of not overdoing it during therapy or with the at home exercises they gave me.
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I am now on two crutches, and feel like singing 'no wheels on my wagon'
PMR only lasts two years . So says my Rheumatologist.
What can I Do?? Why does nobody understand that I do feel ill most of the day and have been fighting a Flare/ Virus for over a month.
Legs!!!!
