Aches and pains

[Purdy2017]

Got up this am nearly fell asleep before taking dogs out after come home kept myself going went down the allotment 20 min work just putting in some rasberrie caines absolutely tired out my body fills like lead aches and pains fill like I've walked a hundred miles my bloods are good my hormonal levels are good I'm on hrt is this pbc ?? Or hormonal

[DonnaBoll Administrator]

Speaking from personal experience I can assure you that the sudden onset of fatigue that so often accompanies PBC is almost indescribable to someone else. Usually in the mornings for me, I feel I can barely walk down the hallways to get that first cup of coffee - and I just got up from sleeping. There is no reason for it unfortunately. There is no way to predict when or to what degree this fatigue will occur. I try to encourage folks not to force thru it. We have to, at some point, learn to listen to our bodies when it needs the rest. There is, however, proven truth that exercise does help the fatigue. I'm sure you will get there responses to your post as well. This is really a part of PBC most likely. Be sure to mention it to the liver doc - although, I'm sorry to say, many doctors don't believe it's a real thing.

[Purdy2017 in reply to DonnaBoll]

Thankyou Donna for your response yes I mention to me liver specialist when I see them next it's so upsetting to fill like this my husband has said to go to the doctors but I no that thay cant do anything I'm terrible for listening to my body I fill guilty to rest and I think I'm still in self doubt

[DebatDG9]

Hi

I don’t have any answers but just some solidarity with a fellow gardener. My greatest passion is gardening. There was a time when I could be out there from 7am to 7pm and still not want to stop but now …..! I have made the decision to stop every 30 mins to look at what I’ve achieved and be grateful and every hour stop for a brew and a longer break. My list of things to do has had to become more realistic otherwise I end up on my knees in the earth and weep.

[DonnaBoll Administrator in reply to DebatDG9]

Gardening is so relaxing, but I too, have found myself greatly limited by the time and effort I can put into it these last several years. My knees won't take it and I just don't have that stamina. I can remember coming home from working the night shift and going out in my perennial garden and weed when it'was cooler. Loved that 'me' time. I love the idea that when you do need to stop you can look at what is in front of you - and just be grateful.

[Purdy2017 in reply to DebatDG9]

Thankyou for your reply I should listen to my body more x

[Candy12]

I have the fatigue and for me it feels like my legs are dragging through thick snow or custard there just no energy in them at all. It’s only the legs for me and don’t feel sleepy tired with it though just exhausted like it’you just ran a marathon. All that said I would go to the doctor though to check it out, as there are other reasons for fatigue. I had a bone profile and thyroid test, I did have low iron and vitamin d3 deficiency so these were corrected.

It also gets it registered on your medical notes something that I found was important to do when for a different reason a disability hit and because there was no medical confirmation I was not eligible for help for a long time. I’am not saying the fatigue becomes a disability but it does impact your life and overall sense of well being so it’s worth making sure it’s noted in your records. We mustn’t assume everything is PBC even if we suspect it is. Hope that helps a little.

[DonnaBoll Administrator in reply to Candy12]

There is surely solidarity in our fatigue, isn't there? for better or for worse, we can all support and really understand what it feels like. You are so right about not assuming every new symptom or pain is from PBC. We have a responsibility to ourselves to make sure it isn't something that needs its own attention.

[Purdy2017 in reply to Candy12]

Hi candy I've reasontly had a fasting blood test as I thought its hormone related but thay come back ok so its definitely pbc just hasn't been that bad before I should have rested thankyou

[tamarjaybird]

Fatigue is associated with PBC as well as several other conditions. I was diagnosed with PBC 5 years ago, I have also been living with ME/Chronic Fatigue Syndrome for 25 years and now I've been diagnosed with Fibromyalgia. All have very similar symptoms - mainly fatigue and pain. The fatigue associated with these conditions is very different from 'just feeling tired' and I find other people cannot understand it. I've learnt to listen to my body, sometimes I can push through the pain and fatigue at other times I give in and rest. Fortunately my family understand. Keep going and rest when you need to.

[Purdy2017 in reply to tamarjaybird]

Thankyou for your reply yes I resonatly had blood work done thay were ok so its definitely pbc related has not been that bad before so took me buy surprise I should listen to my body more

[Readlots]

I love my garden and share your frustration with not being able to do all that needs doing. I’ve learnt to do a bit then have a rest on a sun lounger for a bit, which usually results in falling asleep 😂. It doesn’t have to be warm or sunny, I have a sleeping bag and woolly hat for the cooler days, and Azathioprine means I have to stay in the shade anyway. I still enjoy my garden, just in a different way 😂

[Artsy123]

this has been something I think I’ve been needing to read…. To hear others talk about a heaviness I.n Their legs at times. I’ve been experiencing it and know it’s not proportionate to what I’m actually doing but it does come. I always thought was muscle related and didn’t think of it as fatigue because my brain didn’t feel tired…. Hope this makes sense.

[Purdy2017 in reply to Artsy123]

Thankyou for your reply it's getting your head around it all