Help end medical misogyny. Sign our petition.

Help end medical misogyny.
Sign our petition.

Sign the petition

Please or to access all these features

Chronic pain

Mumsnet doesn't verify the qualifications of users. If you have medical concerns, please consult a healthcare professional.

Chronic pain Cafe - support thread #3 All Welcome

989 replies

Akire · 27/11/2021 12:09

New shiny thread to get us through December & Xmas and possible New Year!

This thread is for anyone who has days , weeks, months at time when get chronic pain flair or lives in pain constantly. There are so many conditions that have pain and often limited understand of how it feels to be living with it. Everyone is very welcome

OP posts:
Thread gallery
15
Akire · 09/01/2022 11:18

Oh I thought from Pic that once it’s in it’s in. I’d make everyone else in family use it so there all the time for you rather than miss out. Good news about hair cut makes it so much easier manage when shorter and tidier

OP posts:
OneNightTimeMenaceStrikesBack · 09/01/2022 11:40

finally got called back about my wheelchair, they will get soemone out to fix it when they are next in my area so i dont know when it will be but hopefully it wont be too long!

council also replied to me and asked for more information and asked me to put an insurance claim in for the damage so we'll see what they say about it

my legs are swollen and i need to get my compression socks on!

Akire · 09/01/2022 11:45

Is it your chair or NHS chair? Didn’t think wheelchair service did anything for private chairs?

OP posts:
OneNightTimeMenaceStrikesBack · 09/01/2022 12:10

its an nhs chair, got it through wheelchair services

Akire · 09/01/2022 13:21

That’s what I thought, have wheelchair services asked you pay the bill? I amazed but delighted council take responsibility but don’t you have to have a bill before pay you for repair? Or are wheelchair service pushing you for compensation this way?

OP posts:
bicyclesaredeathtraps · 09/01/2022 13:43

Thought I'd share this playlist that has cheered me up a lot today open.spotify.com/playlist/5sCHs0QmQHWKwx9uCCyL6D?si=a32fc2a79a3641db
It's 70s and 80s singalong, which I should be too young for but they're just the best songs! Very upbeat.
Also I realised my low mood and low spoons yesterday was probably because I was due a migraine, after a bad one last night and 12 hours sleep I'm feeling much better, if a little drained

RainbowZebraWarrior · 09/01/2022 13:43

@Akire

Oh I thought from Pic that once it’s in it’s in. I’d make everyone else in family use it so there all the time for you rather than miss out. Good news about hair cut makes it so much easier manage when shorter and tidier
@Akire My Dad lifted it out of the box for me and it just suckers to the bottom of the bath. Obviously it can be removed for other family members to use bath as Spooky has to do in her household. But mine is staying put as I've nobody to take in and out regularly. Thankfully DD thinks it's cool and is also going to use it. The bottom half of the bath is still free if she wants to stand and shower / wash her hair. I was amazed at how easy it is. The controller needs charging couple times a week, but that's doable as it only about the size of a large remote control.
RainbowZebraWarrior · 09/01/2022 13:47

Absolutely fab playlist @bicyclesaredeathtraps Me and DD have been coping better with stuff after building in a '2 songs of our choice on Alexa' We do it when we get home from school and before bedtime. It seems to be largely 80s based too for us

OneNightTimeMenaceStrikesBack · 09/01/2022 15:23

@Akire wheelchair services havent said anything about payment so i dont actually know if i have to pay for it or not but the council woman who replied to me said i should go through council insurance either way for the trouble of having no chair until its repaired

Akire · 09/01/2022 15:25

That’s great hope it helps with extra costs when you are stuck in. Oh I know that so well Grin

OP posts:
SpookyScarySkeletons · 10/01/2022 08:46

Long post - sorry! But saw this on FB and it describes how I feel absolutely perfectly.

Hello, my name is neuropathy, I'm an invisible disease that attacks the nerves anywhere and everywhere in your body damaging them and causing you excruciating pain and loss of mobility.

I don't show up in your blood work, in x-rays, MRI’s can’t detect me, basically there is no test to prove you have me. There are only test to rule out other things.

Others around you can't see me or hear me, but YOUR body feels me.

I can attack you anywhere and anyway I please. And I will. Constantly.

I can cause severe pain that makes you want to die.

I can take good sleep from you and in its place, give you brain fog and lack of concentration.

I can make you want to sleep 24/7, and I can also cause insomnia. I can cause you so much pain all night long that nothing can take it away.

I can make you tremble internally or make you feel cold or hot when everyone else feels normal.

Even if I started off in one part of your body, don’t think I can’t travel and effect other limbs or any other part of your body I so choose to torment. I can, and likely I will.

I can make you feel very anxious with panic attacks or very depressed. I can also cause other mental health problems. You know crazy mood swings? That's me. Crying for no reason? Angry for no reason? That's probably me too. It is hard to not feel hopeless when you have me beating your body up constantly.

I can make you scream out loud, anytime of day or night, anywhere you are because I can create pain that makes you sure someone just stabbed you with a knife, electrocuted you, constant electric jolts, stinging you, sawing at you, throbbing, cutting, aching, burning. I can make you believe you have had gasoline poured on you and lit with a match. I can make you feel as though you have a very bad sunburn when you haven't been in the sun. Making you look crazy is fun for me.

Some of my other inflammatory disease friends often join me, giving you even more to deal with. Such as fibromyalgia and diabetes.

If you have something planned, or are looking forward to a great day, I can take that away from you. You didn't ask for me. I chose you for various reasons. Whatever the cause, I'm here to stay.

I hear you're going to see a doctor to try and get rid of me. That makes me laugh. Just try. You will have to go to many, many doctors until you find one who can even try to help you effectively. Most of them will make you feel like you are to blame, or worse, it is all in your head. I’ll convince them that you are crazy because normal people know that you can’t have all those symptoms all over your body and still walk around looking normal.

There are so many other ways I can make you sick and miserable, the list is endless - If your body is all of a sudden dealing with things that were never issues before...yep…. that's probably me.

You'll be told to think positively, you'll be poked, prodded, and MOST OF ALL, not taken seriously when you try to explain to the endless number of doctors you've seen, just how debilitating and how much I am hurting you and causing you to suffer and how ill and exhausted you really feel.

I will make you question your own sanity at times. I will make you contemplate unthinkable scenarios.

Your family, friends and co-workers will all listen to you until they just get tired of hearing about how I make you feel, and just how debilitating I can be.

Even after explaining to those you interact with regularly that I’m the most painful thing you've ever felt and there is no cure, they will say things like “I hope you have a speedy recovery”. Those who don’t know me well have no idea how cruel and unusual my punishment can be.

The only ones who could even begin to understand the torture I put you through are others who suffer from the same thing. Be glad that you have them to commiserate with, at least your not alone.

Author Unknown.

Akire · 10/01/2022 09:56

That’s great Spooky sums it up really well. That was me after hospital Saturday wondering if treatment would work or if nerves are buggered once the odds been totally fixed are slim!

OP posts:
RainbowZebraWarrior · 10/01/2022 12:19

Crikey Spooky yep, I get that.

So far I've been told 'bloods look ok'
Hmmm
Had basic tests.
Hmmm
Oh, we could do a biopsy...
Tumbleweed

The pain, sensitivity, numbness, tingling and internal tremor really do make you feel like you are Mad.

I'm printing this off and taking it to Rheumy on next appt.

Just finished additional 18 pages for PIP appeal. They will likely take one look at it and also think 'Mad' as it is a lot of photocopies with mad ramblings scribbled on.

SpookyScarySkeletons · 10/01/2022 16:09

Feeling so much better after some pampering and a really good hair cut and style. I feel clean and pretty!! That doesn't happen very often...

bicyclesaredeathtraps · 10/01/2022 16:46

That's great Spooky! It's amazing what a bit of care around our appearance can do for mental health.
I enjoyed my first day back at work after Christmas today, which is a relief. My brainfog has worsened since having covid so I was a bit worried, but managed okay.
I was supposed to go to a choir rehearsal tonight but the lift is broken.

OneNightTimeMenaceStrikesBack · 10/01/2022 17:09

technician is coming out tomorrow to look at my wheelchair! hopefully it can be fixed there and then and they dont need to take it away with them

my head really hurts today,t he pressure is really bad in it

SpookyScarySkeletons · 10/01/2022 17:18

Yep I am mega happy. I don't post any private stuff on here so not worried about posting pics lol but this is the new hairdo!!

Good news about wheelchair fixing @OneNightTimeMenaceStrikesBack

@bicyclesaredeathtraps I have had the most awful brainfog since covid. It's awful isn't it!

Chronic pain Cafe - support thread #3 All Welcome
Akire · 10/01/2022 17:28

You look amazing well done, it does make a difference. Nasty day with pelvic pain on about my 10th hot water bottle.

@RainbowZebraWarrior 18 pages is loads well done. Get stressed for you just reading in. You should be proud of yourself.

Struggling with emptiness of life at moment. I know usually dark wet January days but my days are really empty all year round. Not as if have energy just get up and out and do something either. Think 2y of covid the little things I did do have been much restricted.

OP posts:
OneNightTimeMenaceStrikesBack · 10/01/2022 17:32

you look lovely @SpookyScarySkeletons i need tio get my hair cut but i dont know if the place that i usually go is open again yet as its one of the only hairdressers i can get my chair into

SpookyScarySkeletons · 10/01/2022 17:34

@OneNightTimeMenaceStrikesBack I used a mobile hairdresser as it would have been a logistical nightmare getting to a salon! Just asked around on local Facebook groups for recommendations!

SpookyScarySkeletons · 10/01/2022 17:34

And thank you for the compliments ❤️❤️

HerRoyalHappiness · 10/01/2022 19:50

@SpookyScarySkeletons you look fab.

I'm ill with covid again
3 times I've had it now.

HerRoyalHappiness · 10/01/2022 19:50

That explains why I'm so achy and why I keep going light headed and dizzy.

Akire · 10/01/2022 19:55

Oh no! Didn’t you have it in November? How’s the symptoms so far?

OP posts:
HerRoyalHappiness · 10/01/2022 19:56

October we had it. So far symptoms are lightheaded/dizzy, achy all over and a headache
DD has a cough but nothing else.

Swipe left for the next trending thread