I’m wondering how exercise impacts the course of your PSC. For me, I don’t get very itchy or get the chills much unless I haven’t exercised for a day. Lying about is very bad for my body. (Diagnosed with PSC 19 years ago at age 31, now 50 years old.)
Once I spoke to somebody who told me he went to the emergency room at the hospital for some symptoms, and it turned out he was only dehydrated. It made me angry to think he wasted Canadian hospital resources because he hadn’t even run through the most basic of checklists. If you’re not well, the first thing you do is drink water, eat something, rest (or exercise as the case may be), or sleep.
So in that context, you can understand that I’m concerned that some of you may be experiencing more suffering than you need to because you may not be doing a basic exercise routine of half hour to one hour per day, counting all things like cleaning floors, walking, etc…
People who bring up exercise tend to be seen as pollyannas, and told to be quiet. I’m willing to take that risk. I’m in better shape today than years ago because I exercise and I would like everybody to experience the endorphins I"m experiencing.
So please let me know how much you all exercise. I used to have to ask people to help push me up a staircase, especially near the top. Now, I realize my problem was lack of conditioning and probably not the PSC.
If you feel you can hardly move for fatigue, I’ve been there, but I seriously think we need to do all we can to exercise before assessing our level of fatigue. ie. without exercising, you can’t actually gauge fatigue for the results will be skewed. I do take a long time to overcome exercise, but that 's another story.
You bring up an excellent point. PSC patients especially need to have a regular exercise regimen throughout their life with this disease. Just 30 minutes a day walking or some other form of core strengthening exercise is vital to being prepared for transplant surgery when that day comes. It allowed me to continue to work and when the transplant day came I was able to walk myself into the hospital and to have a successful surgery and recovery. Tomorrow the 23rd will be my two year transplant anniversary.
In addition, after transplant you really need to keep that exercise up or you will gain weight for sure with all that Prednisone you will be on for a year or more. And yes, let’s stay hydrated and use common sense on when to seek medical intervention.
I am so please you started this thread as walking and cycling are key to my wellbeing and it is hard to imagine a life without this level of activity.
There appears to be no research on the subject so whilst I feel that I am taking things easy - after all if I get into trouble on my bike I would be very exposed - but how much should I expect to achieve?
What would other people regard as a reasonable of exercise for someone with PSC?
I regularly ride around 30 miles in a day several times a week and up to 60 miles or so on occasions.
Any pointers would be most appreciated, thanks.
One of the key reasons for maintaining a good exercise program for patients with PSC is to maintain your core body strength. You need to stay in the best physically fit shape possible so that when the day comes for a transplant that your body will be ready for the undertaking. It’s no small surgery by any means. Also, the more progressed PSC gets you will experience weight loss, muscle wasting, etc., making core strength maintenance that much more important. Even just 30 minutes a day of walking will make a great difference. Some days you don’t feel like walking, but on the days you do it’s very important. If you are riding 30 miles a day on your bike you are doing great! I wish I could do that! Keep up the good work.
PSC 2011 / Liver Transplant 2015
Great point!! I started doing half marathons just prior to diagnosis in 2012. I have had only one in May 2017. At the onset of symptoms, I literally drank some fluid then headed out for my evening walk with my daughter. Unfortunately, I still ended up hospitalized that evening. While hospitalized I would take breaks from my IV to go up and down the hospital stairs. I even passed my hepatologist in the hallway as I hurriedly went back to my room in time for rounds.
I believed my hospital stay was shortened because I stayed active. I see exercise as one of my ‘medicines’ and as prehabilitatiom just in case I need a transplant. It also keeps me well toned and looking healthy, even when I am not feeling well.
Ria (PSC 2011, Tranplant - hopefully never)
I had a hard time exercising, especially in 2016 into 2017 as a nap was more appealing when I got home from work than a walk or run.
Be sure to have your bone density checked. Many of us suffer serious bone/vertebrae degeneration issues, even osteopenia/osteoporosis.
I cannot stress how important maintaining some degree of fitness is. At times it will be hard especially as you approach the latter end of disease progression. Just keeping active in some way at that stage will help. For me a good history of participating in active pastimes probably save my life when I developed severe sepsis and SBP last christmas. I suspect it also helped my recovery post transplant. Indeed, for all those that may go through transplant, they’ll try and get you up and about as soon as they can afterwards and doing some activity everyday is encouraged. I cant really say if it helped stave off symptoms, but I seem to have avoided most of the common psc ones so may be it did.
Thanks for your encouragement.
This week I saw my consultant and I am delighted to say that my good luck has continued. The Prednisolone has been reduced to the minimum possible and, subject to the IgG4 readings next year we will discuss coming off medication altogether!
When I read of transplants and long term problems I realise how lucky I am.
I was diagnosed with IgG4 related PSC+pancreatopathy having been hospitalized on 19 November 2016 until the 31st January 2017. Exercise seems to have been the key.
Good to hear you are doing well. Enjoy these days and I trust you have many more of them. PSC sometimes rares its ugly head up at the most undesirable times, but we have to go with the flow. Keep up the regular exercise, so important with this disease.
A very Merry Christmas to you and your family.
Many of us feel the fatigue, and simply cannot explain it to our own doctors. Hard to work the system properly when dialog is compromised.
I keep moving, even though my body demands 12 hours of sleep routinely.
I came up with a theory a few days ago: I do a pretty good job of listening to my body, but on some days, I want to tell it to STFU.
Not sure how well that would go over.
Hi I’m James, diagnosed yesterday in the UK. On this subject I’m wondering about the level of intensity of exercise that is beneficial vs exercise that would risk causing a flare up. Would a gym workout with moderate weights be too much? Would jogging be too high-impact? Many thanks and best wishes to all.
Welcome to the forum! PSC doesn’t technically have flare-ups and remissions. The thing most people refer to as “flare-ups” are bacterial infections in the bile ducts (called cholangitis). Excercise doesn’t cause bacterial infections, so you shouldn’t be woried about exercising. I go for a run every other day.
Let your body be your guide. You can get away with doing any exercise you want until you can’t.
After diagnosis I rowed in college and kept up with 20+ mile sprint duathlons for many years without issue. By the time I was getting listed for transplant, I couldn’t handle super high intensity workouts but I was still going to the gym and running. Part of this slowdown was the crushing fatigue and the other rather uncomfortable symptoms. The other part is that my body just didn’t like hard workouts anymore and would let me know with increased symptoms.
Also, make sure to keep tabs of fat soluble vitamin levels and bone density. There are a number of things you need to be careful with if you have osteoporosis.
As JTB said, listen to your body. Granted, there are times we want to tell it to shut up, it is your best guide as psc affects us all differently.
As others have stated, you have to listen to your body and do what you can. Keep in mind, that exercise is VERY important with PSC especially as progression increases. You need to keep your body in the best shape possible so that when/if a transplant is needed you will be in the best fit shape possible to endure the surgery. Core strengthening exercises are very important for the potential transplant patient. And with PSC, you need to plan on that eventually. Everyone progresses at a different rate. For some of us like Jeff and myself, the time was very short from diagnosis to transplant. For others they’ve got 20 or more years under their belt and haven’t had a transplant yet.
Hope this helps!
I had recently found out I have PSC. For years I have been getting very tired through the day. When I excerise I am done for the day. There are even times when I excerise I get so tired my body shakes. I know I have to excerise but I do not like how I feel after I do. Any suggestions out there ?
Hi Lynne and thank you for your post. One of the reasons why exercise is important in patients with PSC is that you need to keep your core strength as strong as possible. One day down the road you will need a transplant and you need your body to be as fit and strong as possible to be able to endure the surgery. I know what you mean about the tiredness, I’m with you there. If you could set aside 30 minutes a day for 5 days out of 7 to just walk around the yard, on a treadmill at a decent pace or up and down the street that may be all you can do. You may find that a recumbent bike, one that you sit down at an angle and just peddle with your feet is something you could do. The liver is the largest organ in the human body and the surgery for transplant is major major surgery, so you want to be as fit as you can even while your body may be suffering from muscle wasting, weight loss, lack of appetite and all those things in between. Do what you can, when you can. Don’t feel guilty if you just don’t have the energy one day to do anything but lie in your recliner. You are going to have good and bad days, but use the time on your good days to get in some exercise. Make sure you are getting plenty of protein in your diet especially as the disease progression intensifies. I hope these few things are helpful.
PSC 2011 / Liver Transplant 2015
Lynne, it can be a struggle to work out/jog, bike… when you get home from work. The couch always looked so inviting. There were too many times I caved in to the couch.
But as Mark said, you will have good days and bad days-they will happen to us all. Be thankful for the good days, and get through the bad days however you can. But drop the guilt for having a bad day-Life is hard enough was it is.
While we know exercise is important, it is also important to listen to your body. You might be overdoing it- you mentioned you shaking-that worries me. Be careful.