The exhaustion is overwhelming even though I have mild PSC. How does one cope with the fatigue?
Any suggestions anyone?????????
Also, does anyone know who is a good Specialist in BC or Alberta who knows their stuff about PSC?
Thanks
I am usually ok at work until mid-afternoon, then I feel the fatigue the most. About 2-4 times a week, I sleep when I get home from work for about an hour.
During the day, I make a point to pace myself, and make a conscious effort to not stress out. Breaks at about 10: 45 and 4:00 help.
Thanks so much everyone. I have undergone a battery of tests so will also ask Dr. to check D,E,K and A. I already have depression in my background; not to mention kidney disease and MS like symptoms. So, I guess the MS clinic might be right when the Doc said it could be accumulative. She prescribed a drug to help with exhaustion but when I checked with the Pharmacist she said it was metabolized by the liver so not a good idea to take it as it will stress the liver. I am not keeping up in any area of my life; work, home and there is no outside life - like self-care or having fun. I have found over the past 10 months that I have driven myself just to work and finally hit a brick wall about two months ago where I took a week and a half off. Then returned to work after going onto an antibiotic and continued to struggle. The antibiotic helped to a certain degree - I didn't feel so unwell and my energy returned a little------ enough to continue to push to keep myself going but not to function adequately. I am starting to get reports from my supervisor at work about my memory, zoning out and missing key conversations at meetings. Not good. My house is a disaster zone.....wish I had money to pay a maid. Reality is setting in today as I realize that this is for life at this point and my push has run out and the past 10 months has been really, really long for me.
I have done a little reading about this PSC and it's scares me that my life has taken such an uncontrollable turn. Even ulcerative colitis I knew I could have surgery as a last resort. What do I have with PSC except death because they won't do a transplant when I have kidney disease on top of the fact that I had a mild heart attack during my second reversal surgery. This is just so overwhelming to me today.....my mood had definitely dropped as I grief over this....hoping things will improve as I adjust to the idea.
Thanks for the idea about the liver transplant dept ....I was hoping someone had a good experience with a Hepatologist so I'm not going in blind but if not I will give that idea a try.
Hi Buttercup - I'm from BC too. The transplant surgeons are at Vancouver General Hospital, ask your gp to refer you to one of the hepatologists there for a consult.
As regards the fatigue - yup - my days at work run pretty much the same as Jeffdc's. And I have a very special relationship with my couch...
Hi Buttercup,
Perhaps there are little things you can do to improve your lot in life. Could you move closer to work so that the commute is less time? Could you explain your condition to your supervisor and ask if you could work fewer hours? Yes, you will earn less money, but perhaps you can sell your car, or downsize your living quarters. As for your household tasks, perhaps you can cook for three days' worth, and freeze one day's portion. As for cleaning, you might try to get a volunteer to help out or you might have somebody do just the hardest tasks such as mopping floors and vacuuming. I think by focusing on solutions, your happiness will increase.
Hi buttercup, I also have mild PSC and low energy levels. I work part time and on work days sometimes come home and sleep for two hours on the couch after dinner. I noticed that if I ate a heavy meal (big bowl of pasta) I would fall asleep almost instantly, so am now trying to avoid heavy meals and eat lighter, less fatty carb foods as much as possible.
Keeping hydrated with lots of water, juice, coffee, tea and fresh fruit also helps me get thru the day.
Thanks everyone. Well it has been a week since my diagnosis and continuing to struggle with my energy and this new uncertainty, it is one thing to think that we will die one day but to realize that each day this psc is damaging a vital organ is quite another. I am finding that I get from people in my life words to the effect of 'well at least it's not cancer!. Not that I want to wallow in self pity or anything but an acknowledgment that this is seriously Scary and not just a fatty liver. Did anyone else find that others didn't understand this illness? Am I just over reacting? I told my family member how exhausted I am that I can't cook or have a life outside of dragging myself to work and that person suggested frozen dinners which is a good idea but what about self-care and having somewhat of a life? I get up exhausted in the morning and come home and drop in bed. I am so exhausted I am having panic attacks on evenings I have to showers. Has anyone experienced panic attacks due to extreme exhaustion? Don't get me wrong these panic sessions are new to me since the exhaustion. Has increased over past 10 months and especially past 2months. I keep having brain fog and coworkers are Noticing. I am missing whole conversations that were important to my job.
Hi everyone. Thanks so much for your support. I sawdoctor and she put me off work and I see my own doc on Monday to see if it will be indefinitely. I do have disability available if needed. I wrote a long reply to this site but it disappeared on me? Two questions. What's the longest a person has gone before a transplant as I don't think I will qualify for one and does the itching feel like it is deep in the joints and flesh and it is hard to get relief by scratching?
It is a relief to be able to come to this Site for support and to be understood by all of you. I look healthy but am unable to function normally and people are so judgemental. Ignorance hurts...
I also Have kidney disease so I don't think that I would be able to get a transplant.
hi buttercup
i hear you concern about the exhaustion i know it is hard but i exercise ,,yes i know it is the las thing you want to do but even a nice walk helped me and concerning doctors i go to a heart and liver clinic in Nelson B,C just Google that in and you will see the doctor he is incredibly smart and kind,,he also sends me to Vancouver to see a gasto doc there who deals with liver diseases and is part of the transplant team i am heading there in 2 weeks to get reassessed and see if i can get on transplant list yet....you may also want tp get you tyroild tested too,,i was told that diseases can screw it up,,,, get your TSH ( tryroid stimulating harmone ) and T3,T4 checked,,i wish you only the best
Who is the gastrointestinal specialist in Vancouver you see?
Hi Buttercup!! The fatigue is brutal at times. I have learned to take naps if I have to, go to bed early, rest as much as I can. Learn and know my limits. I am at an early stage with PSC, but I also have MS. I try to keep a positive attitude. When I feel up to it, I do try and keep up with things that I enjoy. I am learning to live one day at a time. When I have a good day, I take advantage of it. I am from central New Hampshire and I am blessed with an excellent specialist on this disease near where I live at Dartmouth Medical Center. I do not know your area, I do wish I could help.
Blessings!!!
Hi Elsie
Wow....our situations are somewhat similar. I have "MS like symptoms" that the Neurologist says we can't rule out MS at this point. Do you have UC? I am glad to hear you have a good Specialist. I don't have one yet...I am being referred to Vancouver as I live in Eastern British Columbia. It is a beautiful place to live but quite rural so you have to travel to get to Specialist. I could have opted for Calgary but since I already go to the MS Clinic in Vancouver might as well have my Specialists in one City. Yes, I am still experimenting with how far I can push before I crash and can't do anything for a couple of day. I am learning to take breaks and go with how I am feeling. If I don't feel good I know I need to back off and just rest for the day. If I push and rest and push and rest and feel tired but not to where I feel like I am going to collapse it is a good day and I can get a little done around my place. I don't have a partner so I have to do both the inside and outside work. I am blessed with wonderful neighbors who are helping me by cutting my lawns for me. I am also considering a condo or retirement place with no yard work for the future as I don't think I will be able to keep up with both. I have had help from other friends to make my garden area into a lower maintenance area this year so we shall see how well I am able to cope now with the outside work. Thanks for you words of wisdom.. I am trying to follow that work then rest then work then rest but it is quite an adjustment for someone who is used to just pushing through the tiredness and doing it anyways in spite of compromised kidney function and the MS like symptoms but now with PSC I have definately hit a wall.
Good afternoon Buttercup!!! It was great to hear back from you. Yes, we do have a very similar story. It is real nice to know that there is someone else who knows and understands what you are going through. I hope today was good and restful for you. I am very tired, but also does not help that my cat had me up at 4 am!!! I have been enjoying this day as much as I can as it is beautiful out here in New Hampshire. I also live in an apt complex where most of the heavy work is done for us which does help. Good luck with the MS. I was diagnosed in 2006 with it, This Friday I go for another MRI as the last one showed some more problems. But I am not too worried. One day at a time. Please keep me posted on how thngs are going with you. Are you on Facebook. I look forward to hearing from you
Hi There,
How are your iron levels? I always seem to feel tired, but when it gets to the point of needing a nap by 2pm, I know I need to get my bloods checked for iron. My specialist recommended iron tablets, and if my blood levels don't improve, we will look at doing an iron transfusion.
I also went to a naturopath for a different outlook on what can help with fatigue, and she said many people who are under a lot of stress (as well as chronic disease) have adrenal fatigue. She recommended taking a vitamin b complex/multivitamin to help support the adrenals. I've been taking Biotress by BioMedica Nutraceuticals for a bit over a month now and feel much better (no more afternoon naps!)
Hope you are well!