anyone having trouble staying awake

[flora]

during the day i have trouble staying awake (unfortunate as i work in a bar) Drs say i should only feel fatigued. If not working i will sleep for hours even after a good eight hours at night. Now they want me to do another sleep over at hospital, i have done this already and they found nothing wrong.

[lainey67]

This is a big problem for me to,i could sleep for England lol.Have you been tested for any other diseases,my consultant has just tested me for Coeliac disease and Sjogrens Syndrome,and they think i have Fibromyala i know all these other diseases have the same symtoms as PBC fatigue being the main one.I dont know about you but my fatigue has got a lot worse over this yr,consultant rekons when that happens you more than likely have other Autoimune diseases going on.

[Hidden]

I can sleep for britain as well, i get up in the morning and within about 3 hrs I am ready for my bed again and can sleep the afternoon away till around 6pm most day's, so annoying as it's just a waste of life so I try to stay awake and just sit here yawning my head off with my eyes running trying to do something, I am yawning now and I have only been up an hour :o)

[lainey67]

I have only been up for 3 hrs and i am now going back to bed for an hour or 2 before i collect my son from school.I know how you feel when you said it's a waste of life,i don't suffer with the itch and i wouldn't wish it on any one but i some times wish i had that instead of the fatigue,i am only in early stages so how bad must fatigue be in the late stage.

[flora]

Hi everyone thanks for replying I said to the dr I have pbc, underactive thyroid, sjogrens syndrome,and ra, but he said my thyroid med was ok so that was taking care of that and none of the others would make me sleepy. The liver specialist in Edinburgh wanted me to be tested for addisons no one has done this and its nearly a year since he asked.

[Hidden in reply to flora]

Addisons normally makes you lethargic, nauseous too. My first late husband was found to have Addisons after he died when a post-mortem was done. He had been on and off steroids for asthma for the final two years of his life and at some point after withdrawal of the steroids his adrenal glands never restarted, resulting in Addisons. He would have required a small dose of steroids daily to compensate.

[Krysta in reply to flora]

An Addisonian crisis can be deadly. If someone with Addisons gets into an accident, or needs surgery, if it is not known they are Addisons then they are at very high risk !

My husband almost died in an Addisonian crisis (he was not yet diagnosed with Addisons and even with the crisis that had him hospitalised they did not figure it out and released him ..... then his GP pointed out his sodium levels were so low he was at risk of dying and demanded an endocrinologist get involved).

Definitive test is ACTH.

Get your sodium levels tested !

then if it is low, request an ACTH

[lainey67]

Hi Flora it sound's like you have a lot going on no wonder you feel so tired.I think we all get told different things by our consultant's i am awaiting results for sjogrens syndrome my consultant told me that if i have this and pbc that is probably why my fatigue is so bad.i dont know about you but i feel more confused with it all now than i did when i first got diagnosed,this certainly isn't a straight forlward disease.When are you due to see the consultant again,if i was you i would ring them up and request an app,i don't think that is fair to tell you that they would like to test you for Addisons then just leave you like that.I went to see my gp yesterday and asked him to tell me what i had been tested for so far as the consultant has done lots of blood tests but has never told me what half of them are for,i seem to get more help from my gp than any one else,my daughter has kidney disease and her doctors are great.and keep her well informed of every thing that they do.

[littlemo]

Hi Florrie I too could probably sleep for Ireland if I was able to but with working part=time and looking after my two children aged 6 and 17 dont get the opportunity. I do have a power nap most afternoons though and feel this helps me keep going rest of the day. I think you said you are on transplant list didnt you? I would say it is because your liver is really struggling at min so your energy levels would be very low or maybe your iron (haemoglobin) is low but I would imagine drs are checking your bloods closely at this stage? On my days off I just keep busy as find if I sit the fatigue hits hard. Hope you get answers soon take care. x

[Hidden]

Hello flora and all.

I'm the opposite! These days I can rise early morn and by the time I go to bed it has been around 17/18hrs since I originally got up and then I go to sleep and wake up an hour or two later. Due to the itch I often cannot sleep further, drift off several hours later to then get up again not long after giving me around 2, maybe 3 hours sleep.

I do not have the fatigue which I did have back in 2010 prior to diagnose but I tend to find that days following a bad night, I tend to start feeling tired later in the day and I cannot just crash out awhile. I can sit down and relax but cannot go to sleep otherwise I have found from previous experience in the last few years, I then do not feel tired later at night and that is the worst for me.

I know tiredeness (fatigue for a lot) and itching do not go together at all, they really do clash.

[SC49]

I am going to compete with LittleMo for the Irish title of sleeper of the year. It is the most crushing, overwhelming tiredness that I have ever experienced. I have 2 kids and as babies neither of them were great sleepers. I thought i knew what tiredness was in those days. Now I really know.

It feels to me like my battery starts off fully charged but it runs down very quickly and I can go from being quite bright and busy to being virtually comatose in a few minutes. And if I don't sleep when it comes on, my concentration and memory get even worse than they already are. I can forget a whole conversation walking between 2 rooms.

I get up at the same time every morning and I try to keep a routine through the day, including at least one sleep which could be 15 minutes but more often it is 1.5 - 2.5 hours - depending what i have done.

If I do anything physical, the battery runs down quicker and needs more recharging.

If I don't get a sleep in the early part of the day I will crash at about tea time and I will sleep for ages Then I have problems getting to sleep at night. If I go to sleep late then I am knackered when i get up in the morning. For me, it's important to try and keep to a bit of a routine for sleeping in the day because it means that my night time sleeping stays fairly normal.

When I am really really tired. I also get sore.

When I spoke to the consultant about it, he said I had Chronic Fatigue Syndrome. I tried to do exercise every day and even went to see a cognitive behavioural therapist. But I am still tired and getting more frustrated by the day.

[Soos125]

I sympathise totally with everyone in this thread. I am tired most days & if I don't get a nap as soon as I finish work I'm in bed by 7pm !! Today, I am completely exhausted & finding it very difficult to function & concentrate on work, just want to go back to bed even though I had a really good night's sleep last night (for a change !!)

I am also finding that the itch is starting to get worse, especially when I'm tired, so a vicious circle is starting up now..... I was diagnosed with PBC in early 2012, maybe I need to be checked for other AI's.

Sue xx

[flora]

Thanks everyone that answered, i have my annual appointment with the liver specialist in Edinburgh on the 14th this month ,I wasn't going to go (its a 260 mile round trip and I am soooo tired) but I want an answer and my life back. I have heard of a drug called modafinil that could help, anyone know about it.I will have to travel by bus as I do not trust myself to stay awake driving that distance.

[malteaser1955]

Good luck to all of you with PBC and other conditions with it, I won't try to compete with any of you in fatigue etc., but suffice it to say that it sounds like most people with PBC do suffer significantly, so it's hard to try to keep up with normal life, and I feel so much better for not trying to. Perhaps we should take up writing (between naps), at least we could do it at home, and I'm sure most would have plenty to write about.