Hi all: I decided to join the community today... - PBC Foundation

PBC Foundation

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Hi all

MyFliss
MyFliss

I decided to join the community today, not sure why today, but here I am. I was diagnosed nearly 10 years ago, after having Lymes Disease at the age of 44, (I'm now 55) around 10 months ago diagnosed with MGUS, and have had Osteoporosis for some years, have had 3 broken ribs over a period of about 3 years.

I've read some of your posts concerning sweats/chills and do struggle with these, is there anything that I can do to help these. ( I haven't had periods since about a year after the Lymes disease.

7 Replies
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I had cold "sweats", which were fake sweats. I was completely dry. This happened after had a full hysterectomy at 39. Even on hormone replacement (which I still take in a low dose), I still had the feeling, if the temperature in the room wasn't just right for me. Eventually, over years, it got better. I'm 64 now. Perhaps, what you have is connected to hormones. Something to look into? Just a guess, based on my own experience.

Good luck!

MyFliss
MyFliss in reply to iagra

Thanks for your reply iagra, I think you're possibly right, there are so many things going on it gets rather confusing, I tried HRT some years ago but it had a negative affect on my liver so the doctor took me off them, it's the lack of sleep that really affects me

Hi MyFliss, and welcome!

I don't have PBC (yet) just AMAs, tho' my consultant doesn't think I'll develop it, now. However, this site is wonderful for all things PBC, with help and advice from both our fellow 'posters' and the advice staff at the 'PBC Foundation' (see the link to the website at top of page).

I had a late menopause - well into my late 50s - but I don't know quite when it really happened, as I had a mirena coil inserted at about 54. I'd always had mild endometriosis - and pain with it - when not on the pill, and the pain was worse and worse, post-pill at post-50, so a Gynae suggested the mirena.

The mirena coil worked for me, brilliantly, with all the pain gone, but I did not notice when my periods stopped, naturally, as they stopped within 2-3 months of having the coil. However, I really did notice when the hot flushes started, in my very late 50s, as they were so bad at night, that I was not having any sleep at all, and ended up like a Zombie with terrible migraines developing (never had before).

My GP gave me amitryptilene (10mg tablets), which she said I could break up into small bits, even dust, until I found the level that let me sleep without being like a zombie. I found one third of a tablet helped me sleep through, yet still be awake the next day, okay, and the flushes rarely bothered me in the day.

However, I am now well into my 60s, my hormones are well below menopause levels, and I had the coil out about 2 years ago, with no pains (or periods) since. However, I still get hot flushes every so often, tho' nowhere near so bad, and not often at night (they rarely wake me up, but they can stop me nodding off if I have one). I've known older women say they never stop, so it may just be a part of normal menopause, and not the PBC. But do ask your GP about the amitryptilene, as it was a lifesaver for me.

Hope this helps, take care,

Gritty

MyFliss
MyFliss in reply to GrittyReads

Thanks for the info Grittyreads, seeing Doc soon, I will ask

Isn't being an older woman just grand!!! Luckily I have found some remedies to help cope with these fluctuations that create hot and cold sweats in us. At first I thought it was my thyroid, the PBC...turns out it was hormonal imbalance. I used Chaste Tree Berry for a few years and those sweats, plus the irritability and suspicion went away. I was able to sleep better and found the thoughts of setting my husband on fire had diminished! Then I got older and more depleted. Oral synthetics are not a good choice for us as they will harm our livers and put us at risk for other things like cancer. So, off to the Naturopathic doc for bio-identical. I had gone to an M.D., but they were just going to give me the standard dose without labs. The Naturopathic pulled extensive labs, then had a compounding pharmacist interpret them. Turns out I need to flush out quite a bit of Estrone(the bad estrogen) before starting my bio's. Now all is well...sweats are gone, mood is even, husband is in tact!

It comes done to quality of life. I decided to give them a try and haven't had any bad results so far. Be well and please let us know how you do.

MyFliss
MyFliss in reply to mrspeffer

Thanks mrspeffer,

sounds like bliss! I'll check out the Chaste Tree Berry, not heard of this before, I agree it's definitely about the quality, I understand now why sleep deprivation is a form of torture! Even worse when your other half falls asleep within less than a minute of his head hitting the pillow and starts the dreaded snoring, got to admit, thoughts of suffocation do come to mind at times!!!

Sounds like sleep apnea. My guy uses a Cpap machine. I use Macks earplugs

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