The General Chat Thread (2024)

SandwichShortOfAPicnic said:
Yes it is.
I've had an easy ride of menopause (more on that below) but it's really messed with my two bezzies lives in the extreme 😔

So I seemed to have skipped all the hassles apart from a bit of rosacea, or so I thought.. except I hadn't.
I was waking up every morning with joint pain, reaching for pain killers, felt like an 80yr old, it was taking me forever to get going.

But I remember my mum being convinced her joint pain and subsequent various arthritis diagnosis was triggered by menopause.
Tbh at the time that wasn't a thing so she was dismissed by the old school medics and sent away.

Eventually this January I went to the GP about the joint pain and told her about my mum.

She said well it can cause that, would you like to try a bit of hrt?
I said no not really. I'd got away without the problems people complain about and I didn't want to go back to all that.. but the joint pain was wearing me out so maybe I should try a really low dose?

It's 80% gone! Oww isn't the first thing I think when I wake up, I get up a go n do things, it's quite miraculous.

I know your health circumstances are completely different but I thought I should mention it.
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Thanks.
Because I've had an (single) episode of multiple PEs, I can't have HRT. And a lot of other options are out because of various meds I'm on/conditions i have it just my allergy to dairy in medication, or simply because of the PEs. The only thing they can do is to try different antidepressants to try to control my excessive sweating and hot flushes/running on max temp. They seem to work for a few months and then not so much.

Natural remedies are also not helping with the only real problem I have had, that's running hot all the time. Even my elbows sweat! I've also noticed that I've gone from using 2 winter weight quilts at night (so 2×13tog), to not even managing 1×4½ tog quilt in the same weather. Again it's the temperature issues. My thyroid has been checked repeatedly, its fine.

I guess the biggest issue is that hubby is cold in a room that I'm sweating in and feeling ill in because I'm too warm. 16-18°C is as warm as I can manage a room now. So if I'm cold, it's either very cold or I'm ill.

Otherwise I seem to be getting off lightly.
 
Windigo said:
Yes they tested me for that but the results don't show the required blood markers for it, though I do have a lot of similar symptoms. So the test was inconclusive and they've just resumed considering all of my symptoms Crohns related. In the end it doesn't matter much, they require similar treatments medication wise so the name is less relevant than it seems.

I wish it were just my gut though, unfortunutely severe Crohns can manifest everywhere in the body and I am a prime example of that.
I'm getting my infusion on friday so fingers crossed indeed 🙏
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Thats a lot to deal with.
People get used to their limitations and learn to love life within them, like you have, but even so that really sucks.
I hope they get it settled down for you 🤞
 
SatNavSaysStraightOn said:
Thanks.
Because I've had an (single) episode of multiple PEs, I can't have HRT. And a lot of other options are out because of various meds I'm on/conditions i have it just my allergy to dairy in medication, or simply because of the PEs. The only thing they can do is to try different antidepressants to try to control my excessive sweating and hot flushes/running on max temp. They seem to work for a few months and then not so much.

Natural remedies are also not helping with the only real problem I have had, that's running hot all the time. Even my elbows sweat! I've also noticed that I've gone from using 2 winter weight quilts at night (so 2×13tog), to not even managing 1×4½ tog quilt in the same weather. Again it's the temperature issues. My thyroid has been checked repeatedly, its fine.

I guess the biggest issue is that hubby is cold in a room that I'm sweating in and feeling ill in because I'm too warm. 16-18°C is as warm as I can manage a room now. So if I'm cold, it's either very cold or I'm ill.

Otherwise I seem to be getting off lightly.
Click to expand...
Yer the heat thing is rubbish!
I was a very cold blooded soul so it's nice to be warm but my face would (and occasionally still does) get very hot.
I found a water spray handy. The mist of water and a fan combined would really take the edge off the heat.
I even had a little hand fan that misted water out of the middle, that was lovely. I think my son has it now 🤔

Sweaty elbows is pretty extreme! My understanding is it all passes and you end up cold again (small mercy huh).

Shame about the PE's. Was it idiopathic or was the cause obvious?
 
SandwichShortOfAPicnic said:
Yer the heat thing is rubbish!
I was a very cold blooded soul so it's nice to be warm but my face would (and occasionally still does) get very hot.
I found a water spray handy. The mist of water and a fan combined would really take the edge off the heat.
I even had a little hand fan that misted water out of the middle, that was lovely. I think my son has it now 🤔

Sweaty elbows is pretty extreme! My understanding is it all passes and you end up cold again (small mercy huh).

Shame about the PE's. Was it idiopathic or was the cause obvious?
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The multiple PEs were a couple of months after major life saving surgery. (I had to travel 1,000km just for the surgery which without I was told I'd not see the year out). The assumption is that they were clot(s) that broke off from the surgical site. They 'took out' 3 entire lobes. But we'll never know because I was in rehab at the time, learning to walk again, and it was misdiagnosed as me being a severe asthmatic and them insisting it was sleep apnoea and be needing a CPAP machine (which had since been proven to make me worse not better).. I have posterior membrane tracheomalacia, not sleep apnoea but I couldn't get them to listen.

But all of my mother's side of the family have died from strokes (all clots not bleeds) and both my mum and brother (47 yrs old) had strokes last year, so the risk isn't worth taking.
 
SatNavSaysStraightOn said:
The multiple PEs were a couple of months after major life saving surgery. (I had to travel 1,000km just for the surgery which without I was told I'd not see the year out). The assumption is that they were clot(s) that broke off from the surgical site. They 'took out' 3 entire lobes. But we'll never know because I was in rehab at the time, learning to walk again, and it was misdiagnosed as me being a severe asthmatic and them insisting it was sleep apnoea and be needing a CPAP machine (which had since been proven to make me worse not better).. I have posterior membrane tracheomalacia, not sleep apnoea but I couldn't get them to listen.

But all of my mother's side of the family have died from strokes (all clots not bleeds) and both my mum and brother (47 yrs old) had strokes last year, so the risk isn't worth taking.
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Well you pre-empted what I was gonna say and yes with a family history like that I'd steer clear!
Did you get your three lobes back or did the clots set up house where they landed?
 
SandwichShortOfAPicnic said:
Well you pre-empted what I was gonna say and yes with a family history like that I'd steer clear!
Did you get your three lobes back or did the clots set up house where they landed?
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I do now have fully functional lungs again, thankfully (with both arms and adult variant CF I really need all lungs working fully).. I was on 80mg clexane twice a day for 6 months. Thankfully my body was able to breakdown those clots eventually, but it took a while. I couldn't have tablets because I was too seriously ill to risk finding out if I was going to have an allergic reaction to them with them having dairy in them.
 
S
SatNavSaysStraightOn said:
I do now have fully functional lungs again, thankfully (with both arms and adult variant CF I really need all lungs working fully).. I was on 80mg clexane twice a day for 6 months. Thankfully my body was able to breakdown those clots eventually, but it took a while. I couldn't have tablets because I was too seriously ill to risk finding out if I was going to have an allergic reaction to them with them having dairy in them.
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Crikey clexane for 6 months, it's a wonder you retained any fluid with all those holes in you 😆
 
For a good while after his stroke, Craig was cold all the time, even when it was in the high 90s and the A/C was working hard to keep it cool in the house, i.e. mid to high 70s. Apparently, that happens to a lot of stroke victims, their internal temperature regulation gets messed up. Anyway, he had to wear warm clothes and cover up with a blanket because I wasn't about to swelter.

Menopause wasn't too bad for me, an occasional hot flash and mild sweats, but nothing really bad.
 
medtran49 said:
For a good while after his stroke, Craig was cold all the time, even when it was in the high 90s and the A/C was working hard to keep it cool in the house, i.e. mid to high 70s. Apparently, that happens to a lot of stroke victims, their internal temperature regulation gets messed up. Anyway, he had to wear warm clothes and cover up with a blanket because I wasn't about to swelter.
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Yep, MrsT’s right side is frequently either frigidly cold or she reports that it’s so hot, it feels like it’s burning.
 
TastyReuben said:
Yep, MrsT’s right side is frequently either frigidly cold or she reports that it’s so hot, it feels like it’s burning.
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Craig's hands and feet are still cold to the touch. And I mean cold, there's a definite chill on touching his hands. He used to be a furnace. I couldn't stand cuddling with him because he was so darn hot, though it was kind of nice to warm up the bed in the wintertime, but summer, nope, nope, nope. I can't stand to be hot when I sleep.
 
medtran49 said:
Craig's hands and feet are still cold to the touch. And I mean cold, there's a definite chill on touching his hands. He used to be a furnace. I couldn't stand cuddling with him because he was so darn hot, though it was kind of nice to warm up the bed in the wintertime, but summer, nope, nope, nope. I can't stand to be hot when I sleep.
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I like my face cool and my body warm to sleep, that's a rare combo so I really appreciate when I get it!

Mr SSOAP is also a furnace. His hands are so hot that if he rests his hand on my leg when we're driving along there will be a point when I suddenly realise it's way to much and say "HOT HOT.. YOUR HAND.. ITS HOTTTT" 😆
 
SandwichShortOfAPicnic said:
Yes it is.
I've had an easy ride of menopause (more on that below) but it's really messed with my two bezzies lives in the extreme 😔

So I seemed to have skipped all the hassles apart from a bit of rosacea, or so I thought.. except I hadn't.
I was waking up every morning with joint pain, reaching for pain killers, felt like an 80yr old, it was taking me forever to get going.

But I remember my mum being convinced her joint pain and subsequent various arthritis diagnosis was triggered by menopause.
Tbh at the time that wasn't a thing so she was dismissed by the old school medics and sent away.

Eventually this January I went to the GP about the joint pain and told her about my mum.

She said well it can cause that, would you like to try a bit of hrt?
I said no not really. I'd got away without the problems people complain about and I didn't want to go back to all that.. but the joint pain was wearing me out so maybe I should try a really low dose?

It's 80% gone! Oww isn't the first thing I think when I wake up, I get up a go n do things, it's quite miraculous.

I know your health circumstances are completely different but I thought I should mention it.
Click to expand...

To be honest I could not cope without HRT, had to change it a few years ago because the stuff I was taking wasn't working any more and I needed to control the amount of oestrogen that I put into my body. Still don't feel great so may try to have a chat with my doc about increasing the dosage.
I know a few ladies who have sailed through with no issues...lucky ladies. Some days I don't know which way is up :(
 
Lullabelle said:
To be honest I could not cope without HRT, had to change it a few years ago because the stuff I was taking wasn't working any more and I needed to control the amount of oestrogen that I put into my body. Still don't feel great so may try to have a chat with my doc about increasing the dosage.
I know a few ladies who have sailed through with no issues...lucky ladies. Some days I don't know which way is up :(
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Sounds like an increase in dose might be worth a try for sure.
Hard to be bothered when you don't feel great though isn't it!
 
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