End of my Tether

[SuzCurran]

Hey all, I have been diagnosed with PBC for 20 years now. At the young enough age of 41 now I have reached the end of my tether with tiredness. I am lucky if I have 10 awake hours in the day. Last January I reduced my working hours to 27 per week which was working out fine. starting work at 8:30 and finishing at 2pm then collecting my 5yr old from school was great. Now however I am sleeping from I get home early afternoon and only waking to sort dinner then back off to sleep again. I have been progressively been getting worse since Christmas past, needing more and more sleep.

So my question to you all is.....has anyone tried and been successful with ANYTHING that improves tiredness. If so please please share as I really cant function on a normal level anymore. Life has become a chore for me and its getting me down rapidly.

All advice will be very welcome......thanking you all in advance, Suzanne x

[SuzCurran]

I have to add that I also have been diagnosed with systemic scleroderma, Raynaud's and Arthritis (spine and knees) all of which are autoimmune related. I take Urso 750mg Folic acid, loratadine, cyclizine, fluoxetine 40mg, omeprazole, co-codamol (as and when required) every morning.

[flora]

I have suffered with tiredness and fatigue for several years, I felt life wasn't worth living sometimes. I would have to cancel things felt I was letting family down. But I couldn't work less than 40 hours a week for financial reasons. Now I have been prescribed modafinil for fatigue and it has given me back my life. I had to research it and ask one of my consultants for it And after pleading with him he researched it and eventually gave me them .my own doctor will not prescribe them as they are off licence for pbc. I have pbc sjogrens ra osteopenia and hypothyroidism. Hope this helps you.

[SuzCurran in reply to flora]

Can I ask where you are from? I'm in Ireland, kind of hard getting meds from docs here

[chynablue]

I've been there, not being able to function on a normal level. I had a similar schedule for a long time - drag myself to work and home, sleep, get up to make dinner, then sleep again. All the while trying to take care of my son on top of it. Fatigue is awful, and I'm sorry you are struggling with it.

Are your Vitamin D levels normal? My prescription is 50,000 IU Vitamin D once a week, so its a mega dose. I think it helps my fatigue.

I have heard that Loratidine, Cyclizine, and omeprazole can all have fatigue as a side effect. Perhaps you could try an alternative or take them at night instead of in the morning?

Also, I have had docs recommend Provigil, which is supposed to help you stay awake. It was created for night shift workers. I can't take it because it gives me heart palpitations and I freak out. But, my sister has taken it and a lot of other people report that it helps them, so maybe its worth a try?

[SuzCurran in reply to chynablue]

Thanks for that, ill try taking those meds at night. Pro vigil I will look into. Anything for a little energy x

[chynablue in reply to SuzCurran]

It might be good to call and ask your doctor before changing anything, just to be sure

[gardner646]

I really feel for you as I know exactly what you're going through. I used to be so active but now my eyes start to close within 5 minutes if I sit down for a break. It can drag you down - for a start, I've put on over a stone in weight over the last few months. I asked my Consultant if there was anything he could prescribe for this debilitating fatigue. He said No. One word. No sympathy. No explanation. End of. I was so taken aback, I left his office dumbfounded. I can't wait to see him again and tell him what I really think - he was so unfeeling and unprofessional. I mentioned this to my GP and he was surprised as well. However, he couldn't offer me any help either. I'm over 70. I have to keep going because I'm on my own and my son is disabled. He's been in hospital since last Friday and the visiting back and forth takes much effort and I'm totally exhausted. I'm certainly not afraid of hard work - it's sheer bloody mindedness keeping me going just now. This site is really helpful and after reading your replies I'm resolved to try and get Modafinil prescribed if I can - failing that, I'll buy it for myself! I'm sorry, I'm venting a bit. I just want to say you're among friends and keep going - I'm convinced that with research into autoimmune conditions going on as it is, it won't be long before treatments improve a lot. Love and best wishes.

[SuzCurran in reply to gardner646]

Hey Gardner, its tough going I know and sounds like you are getting it tight too. I have slept the bit out the past 3 days and feel much better this morning. I have also stopped taking all of my medications. im just going to see how it goes and if I feel I need anything in particular then I will take the meds at night. it may just be that im well rested that I feel better today but I am aware that a few of the meds I take can make you drowsy, who needs that on top of already debilitating fatigue! I will probably take my urso to keep my lft's in check and antihistamines at night as I couldn't bear to sneeze all day long as I have terrible sinuses. I think im going to look into a more holistic approach for nausea though as that medication can make you very drowsy. For now (and this is only day 2)I am medication free and just taking it a day at a time to see what my body tells me. I am also going to contact my consultants secretary now and leave a note for him saying I want to try modafinil. For now I feel good, this may change in the next hour bvut im staying positive and telling myself I am in control of MY body and not the other way around. Its time for drastic measures and this is what I am trying first! Love to you, Suzanne x

[Rockie in reply to gardner646]

Gardner 646. I hope you found something for the fatigue. Hope your son is out of hospital by now. My son died nearly 2 years ago, after a very short illness and he was only 45. Not a day goes by that I do not miss him. I am also autoimmune, PBC with immense itchy skin, and thyroid problems. Those are the ones I know of. I am 75 years old. God bless you and your son

[Loopyblue]

Hi

I have been diagnosed for 10 years now with pbc. How you feel is exactly how I feel I have a son of 8 yrs old and really struggling with work and life. I pleaded with my consultant to trial modifinil as I d heard it is meant to really help with fatigue, however was refused . Sorry I can t be of any help but like you if anyone knows of something else that helps I would be really grateful too. Hope your feeling less fatigued soon take care .

[Calogia]

suzmintyre08 - I am Stage 4 and have also been prescribed Modafinil - 200 mg./daily.

It works great at first, then it works ok. I still take it because it helps.

At Lunchtime I close my door and lay on the recliner in my office and don't fall asleep but just try to breathe slow and relax, it helps.

Good Luck!

Calogia

[SuzCurran in reply to Calogia]

hey Calogia, sounds like you have a good routine set in place there. I have contacted my specialist and left a message for him to consider me for this treatment. Fingers crossed now that he is sympathetic and gives it to me. Thanks x