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[Clarella]

Bit of a long and niche symptom that I’m not sure is peri related or not, except that I’ve noticed it can sometimes improve with oestrogen. Sometimes also my tongue and lips tingle.

Key question is: has anyone else experienced this? / do I need more oestrogen?

Longer info/ time line: (!)

I’ve been dealing with issues in my hands and feet on and off for some time amongst other issues such as joint pain. I was better in pregnancy (second child at 41) and for a while afterwards, then it all returned when periods did worse than before. So I wondered if hormonal.

It’s a mix of tingling, burning (feels like vasodilation) then freezing and also most numb. At worst it was waking me in the night, I now realise with night over heating (but no sweating!)

Gps tested b12 loads, all ok and I even took extra. I’ve just had a medichecks active b test which was good too.

I have hypothyroidism and was briefly hypo and hyper during the last few years; the tingling is different to that.

One Gp in 2020 suggested peripheral neuropathy and also told me to look at burning foot syndrome (seems to be caused by hypothyroidism/ low b vits which I take.)

After worsening peri symptoms I started hrt last Nov 2021 (37.5) and it improved hugely.

Caught covid badly in jan 2022. Then raised to 50 patch. Had Mini long covid. Peri symptoms increased after a couple of months despite 50 patch and I noticed hands and feet getting worse alongside issues exercising. A Gp thought it was Raynauds. It could be; it feels like they over heat and get stuck like that a bit like after hands have been too cold. Calcium test levels were good.

May 2022 hrt review bloods were 164 and I was having hot flushes again so raised to 75 (found hard going as legs and feet swelled up a lot.)

Early July caught covid again and was quite I’ll for a week then bounced back. However, a couple of weeks later the fatigue and bad joints hit. Hands and feet worsened a lot.

 August review Oestrogen was 280ish, was having some sleep issues and joint pain and Gp agreed I could raise slowly to 82.5 before going to 100. Hands and feet still sporadically bad.

It’s been v bad last couple of weeks, usually in run up to period but not always. I raised to 100 last week.

I accidentally overlapped my patches today by a few hours and I do feel hands a feet may be a bit better? Hard to tell.

Thyroid levels have been fine (she tested with bits oestrogen tests) but I may be wise both  get another test after being on 100 for a while.

I have considered that the covid infections are playing merry hell with both the hrt and my nerves; it’s not yet 3 months since the last infection, and so I should wait a good few months at 100. I’ve been extremely tired the past few weeks despite raising patches.

Has *anyone* had a similar issue?! It’s really getting me down.

[Clarella]

Apologies, meant to add that it’s always worse in the early morning. 

[floraljo]

Did you resolve this? I'm struggling with burning feet too. My oestrogen is high though.

[violetbat]

I have had burnt itchy feet on and off for a couple of years. It’s worse when I am stressed and when my feet overheat on socks.
Never an issue on the summer wearing no socks.
The only thing that I have found that stops it is menthol cream. I make it myself now. Cools instantly and stops the burning and itching.

[Wrensong]

Yes Clarella to burning (like freezer burn), for many years.  For me: limbs, hands, feet, mouth, eyes.  Also yes to hypothyroidism & overheating badly without being able to sweat to cool down - that's documented as a thing in long term hypothyroidism, I'm sure you know.

HRT hasn't improved the burning for me & medics of various specialties are baffled.  Peripheral neuropathy & low B12 ruled out.
Had Raynaud's for 30+ years but the burning started years later (with menopause) & doesn't feel anything like a Raynaud's episode to me.  I've wondered, like you, whether the two are linked, maybe a predisposition to suffer worse/more persistent vasomotor symptoms in those who already have the sort of vascular dysfunction we get with Raynaud's.

There is something called formication some women get at menopause,  more often described as crawling sensations, but some articles say it can also manifest as burning.

How has yours been since you set up this thread - any improvement?
Wx

[Clarella]

Hello Wrensong, thank you so much for this reply.

I was diagnosed with hormone positive bc back in July.

So off the hrt, surgery, tamoxifen and radio therapy very soon.

What I have noticed is that this burning tingling has been very associated with increased tsh and attempting too much exercise and then not cooling down properly. so blood vessels seem to get stuck - and even damaged for a few days or more , a bit like chill Blaine’s.

It’s a bit like raynaulds but no white finger and the red flare lasts for ages. I recently began to learn more about exercising in menopause via the Stacy Sims book Roar Next level, and she said some really interesting things about cooling down.

I’ve also begun to keep my blood moving as much as possible when bad, by clenching toes and fingers.

I think I have a ‘sweet spot’ of tsh - too low and I get the same symptoms, too high (recently 2.3) and I do too. I’m trying to aim for 1-0.8

It also seems to happen more when I’ve had a period of high tsh and then it improves.

What I also learnt on my hrt journey is that Utrogestan reduces sbhg which improves t4 and t3 levels.

Tamoxifen is a nightmare as it makes me very cold, alongside the extreme hot flashes. It’s really triggering the hadns and feet but also messed thyroid levels.

I will say a cancer Diagnosis got my arse in gear with exercise and I’ve coped better mentally and joint wise without hrt than I ever thought! Still early days on tamoxifen though; everything seems to say exercising is key. (Though I have to be careful or it triggers this hand and foot thing.)

[WildOtter]

I had this after chemo (peripheral neuropathy), it lasted several months after treatment then gradually faded away, I know some people struggle with it for longer though.

[Wrensong]

Hi Clarella, sorry to be so late replying, had a couple of weeks or so without checking the forum.   Thank you for the update on the burning & I'm so sorry to know you've had a BC diagnosis to deal with.  That's especially tough in menopause, but sounds like you're doing well  .

That's very interesting the link between the burning being worse when your TSH isn't optimal.  What a pain that Tamoxifen messes with your thyroid too.

I haven't noticed an association between the burning & thyroid levels, but mine are not what you might call optimised as I have chronic probs with T3 & can't take enough to keep my T3 consistently within range without feeling over-treated. 

The burning I get definitely doesn't feel anything like Raynauds.  At its worst it does feel slightly painful & is always weirdly unpleasant, but not the pain of Raynauds, which for me is much more full on & comes towards the end of the classic 3-phase colour changes with vasodilation.

I haven't seen the book you mention, but if you have time to briefly summarise what the author says about cooling down I'd be interested to know & it might be helpful to others too.  But please don't worry if you don't have time.

Thank you for the tip about clenching fingers & toes to help relieve the burning.  I'll definitely try that, though mine affects the whole arm, not just hands, also sometimes legs, often feet & sometimes rather bizarrely & more recently - inside the mouth.  I also get numbness in the arms & hands with it, usually only one side, but sometimes both, also slight nausea sometimes.  It mostly strikes in the small hours, so I don't want to be getting up & doing anything more vigorous to boost circulation as I struggle badly with insomnia & getting out of bed means an end to any chance of sleeping again.

So did you feel well on Utrogestan?  I'm highly progesterone intolerant & Utro made me excessively hot & wired among other horrible effects, I assume either because of its thyroid boosting activity or the way it opposes oestrogen's actions.  Or both!  Either way, I could not continue with it on any dose of oestrogen.  It's astonishing how different we all are when it comes to the way progesterone affects us. 

That's very promising that you're coping so well without HRT  & well done on the exercise front.  I hope the Radiotherapy goes well.
Will try to PM you later.
Wx

[Luculka]

Dear Clarella, absolutely, I had that (or something very similar). I am 47 years old and my symptoms started exactly one year ago. It started with nausea in July 2022 and then in March 23 the polyneuropathy started.

It came on from one second to the next and it affected my whole torso. It felt like an attack od thousands of little needles for a few seconds, or like thousands of little electric shocks. The area was my whole torse - back and front. It happened few times each day, always triggered by specific body movements, shower water falling on my skin, sneezing, touch or  even emotions like surprise or scare! I didn't think of hormones at the time (I just attributed the nausea to perimenopause, not this). Soon I also started to have numb hands at night (both at the same time), which woke me up several times during the night. I was terrified and didn't know what was happening to me. It was as if various nerve pathways had gone completely crazy and have become oversensitive! These extremely disturbing neurological phenomena accompanied me from March to July, then it stopped from one day to the next. I saw three different neurologists during this time.  They did all kinds of tests, sent me for a head MRI, tested for boreliosis, multiple sclerosis, small fiber neuropathy. All negative. Finally, the last neurologist said: "Clearly hormones."

Google "electric shocks menopause", it is indeed a niche symptom, but known. Today all the nerve symptoms are gone, but the nausea continues to torment me and it's horrible. Take Care, Lucy

[lillith112]

I have Raynaud's and suffer red flares on my hands, they go red and swollen. I also get numb hands every night, was told I had carpel tunnel syndrome years ago. Over the last few weeks I've had episodes of my face, neck and chest going bright red like a rash. I looked up mast cell activation as that sounds very similar 🤔

[Luculka]

Yes, carpal tunnel syndrome is the first thing neurologists look at when you suffer numb hands at night. I had all the tests done and no carpal tunnel was confirmed. The neurologist himself was astonished and said that my symptoms exactly matched carpal tunnel, but there was absolutely no damage to the nerves. He then said that I am not the first female patient with various neurological issues where nothing is found and I am actually perfectly healthy. Perimenopause can "simulate" many different diseases and nerve disorders are one of them.

[Scampidoodle]

I have Raynaud's and suffer red flares on my hands, they go red and swollen. I also get numb hands every night, was told I had carpel tunnel syndrome years ago. Over the last few weeks I've had episodes of my face, neck and chest going bright red like a rash. I looked up mast cell activation as that sounds very similar 🤔

I get these symptoms and do get histamine and mast cell symptoms. Mine is mostly hormone induced. High oestrogen and low progesterone.