I have had PMR since July 2014 and added GCA to the mix in May 2016 along with AFIB in June 2016. Before the AFIB I had ordered a small folding bicycle to carry in my car so I could explore away from the parking lots of outdoor area. Received the day after I came home from hospital stay. Put it together. I am afraid to ride the bicylce. My balance is okay for walking etc and I live on the 3rd floor so I have to deal with stairs all of the time. But the pred and PMR have effected my confidence for riding. I have not ridden a bike in about 30 years. Does anyone have any suggestions or experience with bike riding? Due to GCA flare up I am back on 60 mg of pred and I know that is probably adding to my fearfulness(something that I have not had to deal with before).
Bicycle Riding with PMR/GCA: I have had PMR since... - PMRGCAuk
I also found that I had confidence problems with bike riding - and when I fell off (entirely my own fault and not real damage done) that was it. I also hadn't ridden a bike very much over the previous few years. I also had similar problems with driving to be honest - I live in northern Italy and we drive down the A22 Brenner motorway a lot which is quite narrow with the inside lane full of lorries. I hated being in the overtaking lane, it felt as if the lorries were looming over me and there wasn't really enough room to get past. My husband on the other hand shoots down there driving our campervan which is far wider! When we first had it I was sure the mirrors were going to hit things. Now things are back to normal - I'm perfectly happy driving anywhere. Bike riding? Not so sure about that!
Thanks for the info. My biggest concern is that if I lose confidence for one activity it will spread into other areas of my life and I will become afraid of everything. To many times we miss the little changes until we end up with a major problem. I live in US Northwest and have access to lots of bike trails so there will not be an issue with traffic. It is just getting past the fear of falling. I am 77 and don't want to break anything. I always lear new information from you various post. Thanks
Hi, I bought a folding bike 18 months to help recovery after some knee surgery. I hadn't ridden for about 20 years at that point. It took a while to build up confidence and I used cycle paths not roads when I started. I am in the UK and there's lots if traffic in the roads. I got sick with PMR in Nov last year and in steroids from March. When I was on the higher dose my concentration and focus was not good. My confidence took a big knock too and I wasnt driving then either. As I came down to 15mg I started to ride again, very short rides with lots of sitting on benches in between. I go out with a friend as this helps my confidence as I am worried what would happen if I came off. I have fallen off twice but not while riding. While trying to get on! The other problem is that although the bike is a folder I can no longer lift it myself so I need help getting it in or out of car. I have persevered because once up and riding it gives me a great uplift, a sense of freedom and I know its helping my joints and health generally. Hope you feel well enough to have a go on your bike soon
Thank you. Unfortunately after I posted the original inquiry, I had a mjor AFIB attack and just got home from the hospital yesterday after having a pacemake in stalled. I am in a whole new learning area as to what I am going to be able to do. Definitely not a place I wanted to be, but we deal with it an move to what we can do. Thanks again.
One day at a time is how I cope. Since writing my reply to you I have started a flare, my ESR levels back up so back up to 20mg of Pred for me. Its like two steps forward, one step back. Hope you feel better soon and can give that bike a very gentle try x
S4andy, did you get increased pain, or just an increase in ESR number?
Increased pain in shoulders, neck and upper arms. Stiffness returned as well. Started after I reduced from 14.5 mg to 14 mg. Increased fatigue too which I had initially put down to the very hot weather. I have been under stress too. I was supposed to be reducing again but I didn't and waited until I had bloods and next visit to GP yesterday. Based on a combination of symptoms and esr results we decided to go back up to 20mg where I had had the most relief. Wants me to reduce to 17.5 in a couple of weeks then more bloods before any further reductions. Thinks I may need to stay at 15mg for longer this time. This is my new GP but he does seem to be up to date on PMR so far as I can tell and he suggested going really slow with my reductions. Slower than my retired GP had originally suggested.
I suspect the stress didn't help. I find I really have to shield myself as much as possible from stressful events, even news. I used to be quite active in civic affairs but I can't bear the frustration engendered any more. I figure it's someone else's turn to worry and fret about the idiocy of those who run this place! I hope things settle very quickly for you and you find some strategies to help you release tension.
Thank you. The stress I am under is being caused by the need to undergo a Capability for Work assessment (I am not fit to work my GP says) which has been cancelled twice, last time 20 mins before the assesment. Next date is 10th Oct but I am not holding my breath. It is so hard to be sick and have to prove it to get any financial help even when your Consultant and GP are both in agreement that you are not fit. Its very hard to relax and get well with this sword of Damocles hanging over you. I was a fit active self employed business woman up until I became sick. Oh well such is the times we live in. Anyway off to meditate it all away as this is my way of trying to remain sane
The NHS site says:
"When can I exercise or play sports again?
You should avoid strenuous activities for around four to six weeks after having your pacemaker fitted. After this, you should be able to do most activities and sports.
However, if you play contact sports such as football or rugby, it's important to avoid collisions. You may want to wear a protective pad. Avoid very energetic activities, such as squash."
"Most people who have a pacemaker fitted feel it has a tremendously positive impact on their life.
Research shows having a pacemaker can help you be more active. It may also help you stay out of hospital and live longer.
Above all, you should feel better. Previous symptoms, such as breathlessness or dizziness, should disappear."
So I'd think a gentle bike ride will eventually be fine though obviously you need to check with your doctor.
I do hope you get on well with your pacemaker - I know it is a possibility for me eventually.
To help you gain your confidence with cycling may I suggest taking short rides , don't try to ride a marathon at first!
Wear easy clothing , get comfortable on the bicycle , ensure that you are at the correct position, and of course you can put your feet to floor safe.
The height of your handlebars are important, as with the distance of your seat from the handlebars, don't over reach , as that causes aches and pains across your shoulders , and tops of arms become tight and easily fatigued, as anxiety for your safety can show itself in tension shoulders .
Wear a good pain of trainers , firm sole but not to heavy on the feet , supported feet will help to secure a good foot hold when balance is comprised.
How do I know this ? I'm a seasoned ex cyclist , in 2004 I cycled along the river Nile in Egypt, and in 2006 I cycled the golden triangle of Northern India to raise funds for women for women charity. And in 2011 I had major spinal surgery ( removed large cyst from L4/L5 , and lost use and lost feeling of feet and below knee , I developed PMR and RA three years ago , my treatment is steroids and Dmards , had to retire from a great career ( registered nurse working in primary care in the UK ) I was falling all over the place , falling downstairs of my house , loosing balance just stepping up the footpath , so I didn't get out much !!! As walking caused me discomfort and balance problems I got back on my bicycle!! Best thing I ever did , a little at a time , find the flat pathways , then building your confidence , try a few undulating areas , take your time , enjoying your new freedom . I'm 58 years old and I plan to take part in a charity cycle ride at the end of September ( also my birthday) 26 miles in aid of St Helena hospices, we will be cycling around the country side of the home of great artist John constable Dedham essex in England .what more can I say Doloris, get on your bike and enjoy 🚴🏻🚴🏻🚴🏻🚴🏻🚴🏻🚴🏻🚴🏻🚴🏻👌
Thank you. Please see my response to 54Indy. With the new pacemaker I at a standstill on exercise. I am walking okay so that is going to be my go it acitivity for a while. Thank you all of you suggestions, and I can apply some to the actual going out of the walking paths.
Husband has pacemaker..and now is MORE confident with his activity once he learned how it would be. Good luck. Perhaps all balance issues etc will pass and you will feel better than ever! enjoy your walks. Here comes the spring!!!
Love this. Gives me hope. Too sick and weak yet, but I AM going to get back to cycling- Love and miss it so much! 🚴♀️
I do ride mountain bike on trails and it is possible to do it with PMR. But to be fair, I was ridding bike before PMR, so it is not new activity.
Your question reminds me of teaching my daughter how to ride the bike :). If you have problem with balance and lack of confidence I would suggest to lower your seat to the point that you can comfortably "walk" the bike by pushing off rather then paddling. This will make you comfortable that if you are about to lose the balance, you can always put your feet on the ground. Over time you will not need it, but it helps in the beginning. Later you can raise your seat to the proper height.
Thank you. Since I had the AFIB attacked(heart stopped) and now have a pacemaker, I am having to rething all my activities until I see what I can do with both the PMR>GCA and the heart issues. But I will get there. I just have to keep going forward not looking at this a limitation.
You do here - there are 3 boxes below your post: click on the one on the right with the downward pointing arrow. That offers you Edit/Delete/Report. On anyone's else's post it will offer you only Report.
Thank you for the helpful comments on getting on the bike. I have lost my confidence and need to build it up again. So worried about falling off it.
I Just read this post and the story behind it. A lot going on in your life.
I don't know if you have a gym near by. You could start in stationary bikes just for endurance and the feeling etc. You could do Elliptical machine in different settings and you would train your sense of balance for sure. This could be a start for going outdoors later this year. There is all kinds of equipment for balance and you could use those as well. Maybe this would be a way to get back?
Wish you well, Monika
Hi, reading back I am probably joining this conversation too late to be useful but just in case you are still worried about loss of balance I thought I'd share my possible first step solution . I have borrowed an exercise bike. I know it's not the same but it is helping build muscle and I know my balance is improving which helps my confidence. My real bike is waiting for me when I am ready.
Hi, I am 75 and 18 months into pmr. My son is a very keen cyclist and fixed up one of his old bikes on his turbo trainer for me on the lowest setting with the bike in bottom gear. I needed a step stool to get on. Some days I managed only a minute but can now twiddle for 10 to 15 minutes followed by a day or two resting! You could try putting the saddle down far enough to get both feet on the ground and scoot along until you feel more confident about your balance. Don't do too much but do have fun!