PNH anxiety

[Wakeem]

So, I have had a real roller coaster with my peripheral nerve hyperexcitability over the last two weeks. Visible and none visible trembles and tremors , loss of sleep, loss of smell and taste, tightness in my chest, and I feel like I am permanently stood in a diesel generator vibrating from the inside and out. This is probably every single person I meet accusing me of seeming and coming across as anxious or up tight or edgy. I can help but feel, what do u expect ? , but course you can't see it can u ? U only have my word!

So why do I find myself constantly felling I have to explain a condition that they don't know of, heard of or even read about? Sometimes find laughable? And that I could actually find and excuse for being irritating and anxious, and apparent nervous wreck.

I finally found a GP who looked at me while I spoke, listened to me took on my concerns (without making me feel I need to be a man about it and get on with my benign condition ) She and I do emphasise she, has taken my words and acted upon them. They are now looking for counselling and emotional support, and at the drop of a hat has brought my consultant appointment forward.

Winner ! Fingers crossed in the waiting .

Thanks for your ears everyone

[Footygirl]

What a relief for you Wakeem. To be heard! Well done. I once had the generator. I told the doc and he said enjoy it!! It still comes back now and then but only rarely. Good luck with your proactive GP and your ongoing journey my friend.

Best wishes

⚽️

[Wakeem in reply to Footygirl]

Someone else with the generator .. I am sane

Enjoy it .... I like that . Although the generator Is driving me nuts , the novelty wore off sometime ago . However Other things occur and destract the generator .. Amazing how a pain can cause the generator to subside.

Thanks

[Barnclown]

OH BOY: GRRREAT POST👍👍👍👏👏👏 wakeem

It's WONDERFUL you've got a really good GP now ‼️

I especially Like your generator ref : YES: ME TOO: all the time for 20 years now..at first I was lucky: could keep the tremors reasonably damped down if I lifestyle managed a go go, but the older I got, the less cooperative they were....lucky for me, now have been in lupus meds for 5 years, the tremors are much more manageable generally...daily myco & pred help me the most with my version of this. That said, the tremors are always there just below the surface waiting to bust out...and extra strain, flare, infection and they surface...haven't noticed them subsiding with pain....I like your phrase:

peripheral nerve hyperexcitability

Did you learn this phrase/get this as a diagnosis from a consultant? Or...? At lupus clinic my tremors are put down to my chronic neuro cerebral probs...now am wondering about PNH playing a part...

🍀🍀🍀🍀 coco

[Wakeem in reply to Barnclown]

Yes . PNH As I understand it's an umberella term used I think .

I ended up on this page using it as a search in Google for support.

Apparently I have benign cramp fasicliations . Rippling muscles and spontaneous cramps, jolts and spams.

Apparently as I sleep my whole body locks straight and tight then essentially wriggles and contorts.

Come morning I am in so much pain and I am totally exhausted sometimes with pains across my chest. Initially I went to the docs claiming j was having heart attacks or something . I was 62 kilo a body mass of 17 .

Essentially the more relaxed I am the worse it gets.

So now I have carbamazapine, gabapentin, narproxen and folic and iron.

Or did you mean generator lol.

If so my term......

I can make the "hum" of the vibration get louder and more intense when I tighten my muscles . I could write a tune with it but no one would listen ... Can't see it can't hear are h losing tilde plot !!

👋🚠🚟🚃🚋🚐🚎🚌🚒🚜🚚

Even my🚲 Feels it had an engine .

[Barnclown in reply to Wakeem]

😆😆😆😆 you got it: I meant PNH!

I'll always think of the generator description as yours : fits perfectly: really works for my version of this 👍👍👍👍

Thanks for the explanation of PNH...FANTASTIC: you literally HUM along ‼️

After replying to you above, I searched on forum & did find another thread re PNH: v interesting

🌻🌻🌻🌻

[Wakeem in reply to Barnclown]

A lot of the threads I found are from the U.S.

I do hum yes. However I can assure you I shower frequently ......😂😂

I used to use the term buzzing but people thought i meant as in "strobe light and repetitive beats"

Everyone has stood on a bus or train or vehicle and felt like they were still vibrating, so to intensify generator became the word ..

Oh so happy that we can find humour thank you very much this really has cheered my day up .

U are an angel .🙏🏻

[Hidden]

Oh I'm so pleased that you have found a good, listening GP. And extra pleased that your appointment has been expedited. I will be truly delighted if they can give you a diagnosis at last though!

As you know I'm an artist and have spent a lot of time trying to make drawings that illustrate my weird sensory experiences over the past five years - partly so I can describe them to doctors and also to friends and family. Sometimes I wonder if it's like colour blindness and everyone has these sensations but I have heightened sensitivity to them as I do to my ectopic heart beats?

I have to say that most of my more bizarre symptoms flare and remit - although there are certain constants such as sherbet underskin - but this isn't particularly bothersome and sometimes is as sweet as it sounds - like a Ready Brek glow.

The chilli mouth is horrible and thankfully remits to a state of tight pins and needles and faint train/ crawling vibration in my legs and mouth. Always there though. Generator would be too strong for mine.

The finger tips one is what I call my spikey shock digits, the faint numbness and disequilibrium are like being mildly stoned without the mental changes and the vertigo and electric shock pains are sufficiently infrequent that i subsequently tell myself that I've dreamt them up - they are so appalling!

The acid bath dunking trumps all I must say - but with it sometimes comes a feeling of turning to stone and this is the nightmare, most dreaded one of all because it paralyses me so I can barely move and am overwhelmed with pain and dread - almost always while resting.

I had a massive flare of this a few nights ago and have already gone into denial about it and half blotted it out so I'm calling myself a fanciful hypochondriac now. I find myself relating to those painters and writers who were incarcerated in Victorian asylums when I'm flaring. And if I try to communicate to friends and family about this they just look embarrassed or appalled - probably as much about the nature of my imaginings as about the reality of living with this stuff. The loneliness sits like a chasm between me and my friends. Or does it really? Maybe each of us has our generator but very few are equipped to describe it so instead many people just blot them out as we do our worst dreams?

Once we have a name for it, as I've had in the past with RA and hypothyroidism, it is much, much easier to bear somehow. It's getting the right name that matters most, and then the proper treatment.

[minka]

GENERATOR NOW THATS A GOOD ONE I HAVE BEEN WONDERING WHILE IM IN THE WIFES CAR I CAN FEEL IT VIBRATING LIKE SOMTHING LOOSE so its my body then