Hi everyone - me again. As time goes by I find I have more and more questions to ask, as I seem to have developed symptoms that weren't there at the time I was diagnosed with cirrhosis. If anyone can advise me on any or all of these I'd be so grateful.
1. Aches and pains. Every bone and muscle in my body aches badly - it's worse when I'm in bed at night when my thighs especially are so painful I can't find a comfortable position for them. I've suffered from arthritis for some yeaars but this is in a whole new league of pain. During the day the aches aren't so severe but after sitting down for a while it's a struggle to get up. Stairs are painful to negotiate.
2. It's a wonder I get any sleep at all as I'm up and down to the loo all night - up to 6 times! I haven't read of anyone else in the forum having this problem, but is there someone out there who suffers with this? I've had scans on my bladder and all appears to be well but the problem persists.
3. Every night I suffer from night sweats. Again, I haven't read of anyone else having this problem (and I'm well past menopause) but would be grateful to know if there's a connection to cirrhosis.
4. I've had an irritating tickly cough for sone months - again, it's worse at night. The cough is dry and unproductive and there's no bleeding involved.
Phew! That's a lot for me to get off my chest and for you out there to digest but I'd be so grateful for any light you may be able to shed on all this.
Many thanks for your patience.
Carole x
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Beauport
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Hi. I think that everyone has different problems even though Cirrhosis is the diagnosis. i would speak with my GP or Consultant if I were in your situation. I'm sure they'll be answer all your questions.
Hi I have Nash which is going worse. I do get all the aches and pains you said, also night and day sweats, getting up for the loo. I've just been diagnosed with fibromyalgia which explains a lot. I get double the pain etc every day and night. Hope you feel better very soon xxxx
Hi Lynne - not sure whether I've replied to you already, but if not thanks for sharing. I was beginning to think I was the only one with this set of problems! Here's hoping you find some relief from all these horrible symtoms.
I've had some of those symptoms for a while but I put them down to my spinal cord injury I had 3 years ago so not much help over cirrhosis I am afraid. I only got diagnosed with that 2-3 weeks ago. I am having the camera down my oesophagus today.
All I can suggest is speak to your doctor. I would suggest keeping a diary. I find eating small meals throughout the day helps as it means I have a supper about 10. That seems to help me settle better. Also I go to bed fairly early to let the aches sort themselves out before I try to sleep. I take my kindle with me.
Thanks G. I'll try the late supper. I must confess I tend to eat quite large meals 3 times a day although I know I should split them up.
Good luck with the tube thing - I've had that done and it's nowhere near as bad as you think it's going to be. Be sure to ask for sedation.
Best of luck to you.
Carole
Hi. With regard to going to the loo. I didn't experience this at night, but mostly in the first 6 or so hours of the hours day. No sooner have I been to the loo, and my brain is saying I need the loo again!! I too had investigations- nothing! Anyway, long story short, I eventually came to the conclusion that it was the meds I am on and started to take them later in the day, instead of early morning. This fixed the problem.
With regard to night sweats. Never had those, but I have been plagued with poor sleep because of my legs overheating and then waking me up. Having ruled out food related stuff, I eventually decided that despite the fact the rest of my body is not hot, I must be too hot in bed. We invested in a wool duvet (only tog 1.5) and I have had no problems with overheating in my legs since. The duvet is warm enough to keep me warm during the summer months and I sleep straight through the night. Wool duvets are supposed to regulate your temperature better than feather ones and we have certainly found that to be the case. My husband now sleeps with a wool pillow and snores a lot less and has less disturbed sleep. I bought mine from the Wool room, which is UK based.
Hi there - thank you so much for your reply. Where would I find a wool duvet? I've never seen one. The fact that your husband snores less now is a huge bonus for me!
Hi Carole, I bought mine from the Wool Room thewoolroom.com/. If you look at the reviews they seem quite mixed, but I have ordered from them on two separate occasions, once for the pillows and once for the duvet and did not experience any problems. I originally found out about them on the blog britishbeautyblogger.com/
If you search her blog you will find what she thinks of them and also a discount code, although I don't know how long that is valid for! Good luck
Hi beauport..i have all of youre symptoms..aches and pains..loo..itching..lack of sleep..difficulty with stairs...night sweats can still be put down to menopause well into youre 80's..im 59 and i get it quite badly..im end stage nash cirrhosis..just been told i have osteo arthritis affecting my hands and arms quite badly.but this can also be a symptom of cirrhosis.(why its best to get a blood test so doc can distinguish between the 2)..i have diabeties type 2 which im told liver has caused not other way round.but stlll im injecting insulin and taking metformin x 3 times daily..so costant dry mouth..no cough though.they cant seem to control it.and i do all by the book..tummy look 9months gone.difficult walking (waddle).out of breath.. apart from that am ok. Very rare it gets me down.i just count my blessings...not very often i post .although i read everyone elses every day...u not on youre own love.xx
Hi Suzy - gosh, you've got more nasty symptoms than me! You're bearing up very well and are so brave.
I have had arthritis in my knees, hands and hips for some years but these pains are in my muscles too - in fact my whole body aches. I'll investigate via blood test, as you suggest.
Yes Carole I can certainly empathise with you in all of your symptoms. Cramps painful contorted limbs. Up to loo 4 - 6 times in the night. Fed up with it all. Must say rather personal itch relentless. Psoriatic arthritis!! How long have you got !!!! Fed up not allowed to drive holiday outside U.K. & no unsupervised visits with my grandchildren - due to HE mild attavk in Feb this year. So sick of moaning
Oh thank God - at last someone who's going through exactly the same as me! Not that I wish all that suffering on you of course! And I too have the itch problem that doesn't respond to treatment. I now also have neuralgia which comes and goes - but can't take too many painkillers because of the liver! As you say, it's all become a right pain - literally!
If you need to moan this is the place to do it and of course I'll always listen.
Best of luck - let's hope we can resolve at least some of these problems.
Hope you all had a better sleep last night. I had about 1-2hours which is good for me! I've got that itch too, it's driving me mad as is everything else but we have to keep smiling don't we?!? Please take care. Lots of Lynne xxxx
Yes, stiff upper lip and off we go! Slept a bit better, didn't cough so much, loo visited 4 times (an improvement!) but aches started later on in the night - my legs are particularly troublesome. Thinking of buying a memory foam mattress topper ......
Hi Beauport, I have the same issues and pain.. Before being diagnosed with stage 4 cirrhosis (criptogenic - because they could not find the reason of my cirrhosis), I was treated for my spinal diseas(with steroids injections etc.. which they make my symptoms worse because they didn't checked my bones health before injected me with steroids - then, they found out about my severe osteoporosis because I was the one asking for a DEXA scan..). Then, Pain management Doctor and Orthopaedic Doctor diagnosed me with spinal and joints osteoarthritis. Then, because my symptoms worsening and they couldn't "find" the reason why, my Gp diagnosed me with Fibromyalgia. But they never think to check my liver heatlth until I developed Haepatities E last February..
I have memories foam which is helping me a little,I sleep with two pillows between my legs and its helping me allot, I use ice patches for the burning pains on my feets, sometimes I must stay with my legs up on the wall for few good minutes for blood circulation (when my foot veins are sooo swollen..)
Try to take your mind from the Pain during the day, I know it's hard but you must find always something what you love doing (try painting, watching a good movie,etc). Try to catch some sleep where ever you can.. Remember that stress and tiredness hurts more your liver.
Hi Beaufort I don't get night sweats but I used to.i drink so much water coz of dry mouth I go to the toilet a few times a night but now I am on a higher dose antipsychotic drug for seizures I sleep a lot more at night.
It's hard to work out if the pain we get is arthritis as one day it's in my back the next in my legs.
I would def see about thickly cough at night.
Going back to the sweats before I started hep c treatment I did sweat a lot at night.
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