Debilitating fatigue - dismissive dr

[Bogeeman]

I have autoimmune hepatitis and the fatigue is live altering. I can barely function - my dr put me on Prednesone and "said" best thing for me is to go back to work. He doesn't even know that 90 0/0 of my job is driving- Im really sick and don't hold out alot of help for quality of care if he dismisses fatigue as minimal !

[Curlymac]

You know... After reading all these posts, and having 2 major autoimmune diseases I am thinking the next route I'm going to go is to a naturopathic doctor. They seem to have way better luck treating patients with anxiety, bloating, fatigue, digestive problems and skin problems. My daughter made enormous changes for the better in her life after deciding to go to one in Edmonton Alberta here in Canada. She takes no medication was able to become pregnant within 3 months after seeing her naturopath, has no insomnia, depression( her GP had diagnosed her as bipolar) and has lots of energy . The naturopath did a lot of tests and then put her on a vegetarian diet which she kept to this day. Not saying everyone should be vegetarian ... Each patient would be given their own findings and treatment and diet according to individual results of course.

But... Personally I'm tired of having enough pills to fill a drug store shelf. I'm going to see one in January. I'll keep you all posted.

Happy New Year everyone.

[Lisacj]

Dear Bogeeman, I am so very sorry that you Dr is so uncaring, and dismissive,. It is outrageous as to how lacking in care or knowledge they can be. Fatigue is the most horrendous thing to live with, it takes over your whole life and body. I too get fed up with people saying have a walk do more things,, NO one know just how hard it is to get dressed and do the basics. Let alone be vaguely active.i have just had a month of work, due to illness and fatigue. I am so nervous about going. Back and getting though the day, how will I ,a age with out a day sleep and rest??

[Lisacj]

Oops some how cut short, what I wanted to say is, try another Dr at the same surgery?. Ask friend for a recommendation for a caring Dr? I know the though of finding a new Dr is exhausting but try as hard as you can,hopefully finding someone who listens and vaguely understands will help. I have also recently started taking magnesium, and I think it is helping a little. Truly my very best wishes Bogeeman xxxx

[Bogeeman in reply to Lisacj]

Thankyou for your comments..

[Jojowen]

It is so hard for doctors to understand! Every ounce of energy I have I spend on getting to work, sometimes it just no use... My doct doesn't get it either. My LFTs have gone down, I should be feeling better and I am - when I don't have to work. Work sucks the life out of me! Just getting up and getting ready for it takes all the energy I have. I have tried to explain it to my doct and then he offers me another type of pill. So far none of them has done anything for my energy levels (except a rather high dose of pred that I was on for two weeks, best weeks I have had since diagnosed, well aware it wouln't have lasted...). When I am off work and can do things my own way I might even forget I have PBC. My joint pains are not so bad after 10 in the morning and if I can rest when I need to my energy isn't drained and my cognitive abilities function on a better level. I don't want to stop working - I really like my job - I just wish doctors would understand and adopt a holistic view on what could be done. Pills do not seem to help! So what else can be done? We need help with that!

Keep going bacck to your doct and tell him/her how you feel and that you cannot cope. This needs to be dealt with differently. Don't give up! There's got to be a way...

[Bogeeman in reply to Jojowen]

Thankyou- what compounds my situation is my employers disability carrier is Cigna - they denied my claim and said I should be able to " work" .. I have a high stress job dealing with the public and drive about 6 hrs aday in heavy traffic- Cigna clearly doesn't put any consideration into their reviews they just want primiums . I am 58 single and had to drag myself back to work or no money no insurance - it's the debilitating fatigue I cant get passed . I always look &!feek like I've been drug thru a knothole backwards. Will probably be eventually fired because nobody understands my 100 percent is now an almost impossible 10 percent- knowing I'm not the only one helps but I truely also hate that anyone has to relate to this miserable existence

[nessiewolfe in reply to Bogeeman]

Amen!

[nessiewolfe]

Hang in there. U may need ur vitamin levels checked if they are messed up it makes u feel awful. The Mayo clinic website explains it way better than I could. The PBC under complications if I remember correctly. Hope this finds u feeling better.

[Batatis]

I have chronic hepatitis due to PBC. I can very much relate to your fatigue, and to how no one around you understands your agony. However, your doctor may be right to encourage you to jeep your job, yet it is your responsibility to explain to your doctor the nature of your job. Meanwhile, please take good care and if ever you feel drowsy behind the wheel then stop at once, take a 5 to 10 minute nap then move on. Just take it easy and never lose hope that your hepatitis will get better for mine has after taking prednisone for about six months and ursofalk for life. I am supposed to resume the prednisone though, yet I am postponing this until I really have to. As for now my liver functions are normal and my three hepatic lumps are gone!