Exercise?

How gradual do you begin exercise? I know I've got to start slow, but ...... before the fatigue set in I was an avid cyclists. 30 -40 mile rides 4 or 5 times a week, 100 mile rides once or twice a season, and a 350 mile trip planned for this summer. 10 months ago was my last real ride, 65 miles mostly uphill. Admittedly it was a difficult ride, but I recovered by the next morning. Two days ago I decided to get back in the saddle. I did a fairly easy 5 mile ride. In a nutshell my legs were so achy, I could barely move when I got home, and it took me two days to fully recover. Can anybody relate? Is there really hope that I will be able to regain even half the stamina I had before?

[Biddyb]

Sounds like you did too much, I understand that you were capable of amazing rides but it’s a whole new ball game for you know. Maybe just a mile to start with which would have been nothing to you before diagnoses but build it gradually each time you go. Don’t punish yourself we are all having to change things in our lives with PBC, non sufferers don’t understand. Life is tricky as it is at the moment don’t punish yourself. Take time, build gradually see how you feel ,take one day at a time. Stay safe be patient

[liver-bird]

I find it best to listen to my body and pace myself. If I feel exhausted I rest. It is possible to build a level of fitness, just be kind to yourself 😊

[jane1964]

Hello when I first started with symptoms I had absolutely no energy and then I got vasculitis as well and was really unwell.Once the doctors got on top of the vasculitis I found I was also very very weak and had lost muscle strength.i started exercise by going to and old persons chair exercise class I was about 20 years younger than everyone else and even so I was worried about how much I could do over about six months I processed until I was able to do an hours over 50 s aerobics something I would never have believed.I still have fatigue and often sleep in the day but I do feel stronger and happier I think for me going with my friend helped and the teacher was a qualified rehabilitation teacher so she was able to help me improve slowly and realize that even a very little exercise would improve things.Now in lockdown I am still exercising via online classes.

[Hidden]

Thanks everyone for the replies. It's good to know other people understand. It's a bit surreal and difficult to explain even to myself. One day, one step at a time I guess :/

[witchiegirl]

Do a shorter period of exercise and build up, obviously - it sounds like your cycle run was too much to start back with.

[Ali20-T]

Hi there I am also an avid cyclist and exerciser. I got diagnosed end of March and have started Urso 750mgs. Mountain biking is my thing and it’s so good to hear that there are other folk who want to keep up their exercise. My problem is that I hate taking things slowly and I try and push through the fatigue. I think my fatigue is mainly poor sleep related which goes up and down. Let me know how your cycling goes - I’ve always been an endurance type of cyclist so not sure how that one is going to pan out! How long ago were you diagnosed ?

[Hidden]

I think I've been pushing through the fatigue for a longer time than I realized. It wasn't until I literally couldn't stay awake for more than a few hours that it became an undeniable problem. I'm a big believer in taking care of poor sleep, whether habits or clinical issues. I started CPAP in February for mild sleep apnea and though it didn't take the tiredness away it certainly made a big difference in being able to cope and feel "normal" during my waking hours. I haven't actually been diagnosed, the only thing constant is my symptoms; mostly tiredness, intermittent itching, and seemingly weak muscles no matter how much I try to improve strength. My lab work fluctuates between mildly elevated to completely normal. My GI actually just referred me to a rheumatologist to completely rule out anything else before we proceed with a biopsy. I joined the group because I can relate with so many stories that I've read, and I desperately needed the support while in limbo. I don't regret it for a minute! Being connected with others who understand what you are going through and being able to read their stories and know that you can actually live well despite having a chronic disease has helped me begin to find new routines and new normals for my family. The PBC foundation has been a wealth of knowledge and has helped me have more patience with my medical team because I understand why despite "text book" symptoms they are hesitant to hand me a diagnosis based upon my blood work. And I'm no longer worried about treatment at this point since I'm most likely very early in the disease, I've got time. More importantly is learning to live well with my symptoms which this group is so very helpful with. Yes, endurance cycling! That's me too, but endurance is taking on a whole new meaning these days, lol.

[CatGus]

Hi am a keen walker, and love climbing, therefore I know where you are coming from. I was diagnosed in March just prior to lockdown . I belong to a walking group, but obviosly on lockdown too. I walk on my own and try not to think about fatigue. I hope i will be able to resume my usual 7 to 10 miles twice weekly when the group gets together again and will attempt another Munro. Presently I walk a fraction of that due to joint pain but I'm not lying down to this...I will climb again