CHRONIC PAIN - share your moans and achievements

[doadeer]

Hello,

This thread is to share the day to day... The moans, rants, fears, anger of day to day living with pain... And let's be positive where we can too... Little or big achievements.

I've had a tough day with my grumpy toddler who is obsessed with biting, he made my shoulder bleed today 😢

On the plus side, had a great pilates class and managed some tricky stuff despite feeling exhausted... I couldn't have done it unless my teacher was on Zoom telling me to hold it!

It’s nice as it is all on one level and a walk in shower, which is really helpful at the moment. I am hoping to put a bag over my surgical shoe and have a shower as I have been managing with wipes and strip washes. DH helped me wash my hair over the bath at home which was lovely.

Bought myself proper wheelchair rain coat and foot wrap. Got lots baby cosy toes type but always slip down so middl gets cold and wet or you don’t get in the right position and pulls on your feet. I find women’s raincoats are to short at hip or not designed so you can sit in them done up. These are unisex so might not fit at al but had some decent reviews.

What are the things you have put off buying for no particular reason but wish you had sooner?

How we all doing? Been GP again more meds try. She does think I have endometriosis but only refer me
If gets much worse. Even though affecting bowel and bladder. The nhs has a very low threshold. Good news is blood test show nearly peri menopausal so there is hope on the horizons.

Though knowing my luck it improve endo and being whole hose of Other nasties instead! I’m lot of pain now after 2h in chair but hopefully progress made.

OK thanks, got my foot dressed yesterday and the wound looks good, got out for breakfast this morning and had a barbecue this evening.

Glad to hear you have treated yourself @Akire, hope the waterproofs are good. It’s always difficult deciding to take new medication, I often seem to get side effects that are as bad as the problem, hope yours give some relief.

Just saw this in Active Threads! Didn't even know we had a Chronic Pain section!

Bought myself a tens machine to try and help sciatic pain due to nerve damage from a horrendous prolapsed and burst disc (onset last June).

It's helping 😊

Also had a steroid injection into my Piriformis muscle (which was misbehaving due to less exercise etc) and that helped too 😊 (done privately mind)

Hi @colouringindoors yes we had this after campaigning for ages. Think since mid May so quite new and not many of us yet. But we hope will end up to be good resource as millions of people live with chronic pain in one form or another.

TENS machines are great and life savers in many ways. Till you roll over on control in bed and zap yourself to the ceiling!! I’m on about my 5th one ways same make
That has raised buttons so I can turn on and raise levels without having open eyes turn lights on etc

Oh yes the wheelchair jacket came in S/M had 2 good reviews on website specificity for wheelchair clothes. I’m a 16 so not tiny and according their measurements was bang in between S/M and L/XL. Ordered the S/M I
Look like I’ve borrowed a clowns coat!! It’s massive. Had roll selves up 4 inches to see my hands. It does look like will do job and sits well over the leg cover but it’s the whole unisex thing so annoying. So it fit vast more men and tiny percentage of women.

Haven't decided if keeping and can tweak it or just to wear and look hideous. Not that anyone looks at anyone in wheelchair and thinks oh they look attractive so it’s not like I’m letting any sides down.

I will be leaving reviews either way as ridiculous that neither women review mentioned the size.

Had disappointing email back from company there is just one S/M size not a mans and women’s version. Bought many silly things from Amazon that claim work for this or that and fail but this only sells adapted clothing. So my expectations were much higher. If it’s is unisex one size only then why sell it with photo of man under “men’s” then same
For women’s as if they are different.

Hello everyone sorry I've been absent. Life has been a struggle of late. How is everyone?

@doadeer

Hello everyone sorry I've been absent. Life has been a struggle of late. How is everyone?

Plodding onwards here, slightly less horrific pain days but flat absolute tip and I’m not up to doing anything.

Anything major happening with you or just run of worse days/weeks squashed you?

@doadeer

Hello everyone sorry I've been absent. Life has been a struggle of late. How is everyone?

Ok just incredibly tired. That bone aching indescribable tiredness.

I have so much work to get through today but I just want to sleep:

How are you?

Flat a tip I relate to that!

DH working really mad hours and I'm struggling with my toddler and work so much. The pain is just so oppressive. I too am exhausted. He took over last night at 6.30pm I didn't have energy for my normal bath I just collapsed on the bed and fell asleep.

Getting botox in back next week to see if it can temporarily ease pain while I wait for complex spine panel to discuss my case. I can't even sit upright now for more than an hour without crushing pain. Oh my word it's a nightmare

@cricketmum84 oh I'm so sorry for you. Does the work need to happen today? I'm trying to space mine out so a couple hours over weekend too

Working with high levels pain and exhaustion’s not sustainable. Can you take any time off or just hanging onto job by skin of teeth? Sorry it’s so miserable. Remind yourself just what amazing job you are doing just surviving never mind work, kids and home x

Well yes I could not work but otherwise I feel then that my.life is pain and looking after a child with additional needs and both of these are hard. Work is usually light relief.... Something else to think about. It usually helps me to distract. I'm worried without it I would get very low.

Ok that’s different then. Such a tough place to be.

It's hard work at the moment @Akire. I've got my playlist on in the background to help me through (lots of arlo parks, David Bowie, Queen, Micheal kiwanuka and finneas! But still can't stop yawning and just need my bed.

I'm a payroll manager so unfortunately the deadlines aren't extendable unless you fancy hundreds of people knocking on your door on payday extremely angry because they don't have any money....

Playlists sounds good idea. Good luck with the afternoon

@Akire ah that's great re the board. I had slso emailed mumsnet regarding the need to so v pleased!

Will bear in mind re use in bed!!! My challenge is I'm very sweaty these days (lovely) which doesn't help the pads stick on 😄

I managed post screenshot name and postcode lol

These are great replacement pads and last for weeks if you put them back on strip. Some like boots ones dry up in few hours and cost £8 for 4. These are £16 for 40 highly recommend

How’s everyone doing today? The heat is dreadful and really doesn’t help.

I saw the rheumatologist today and he has confirmed fibromyalgia, he was impressed though with my mobility and strength despite it though and felt that I have had it for a long time and just managed it well.

He agreed with me that the trigger for where I had ended up in February, unable to climb stairs etc had probably been my job and things like yoga and massage disappearing overnight in March due to COVID.

He felt I was probably correct that I caught COVID in February/March last year and that may well have had a lasting effect as well. It was never diagnosed as I had rashes that were not recognised as a symptom then and it was after that I had the first episode of hemiplegic migraine.

I have got to have a liver scan and some blood tests as there was a slightly elevated level of something, but he doesn’t expect it will be significant. Losing weight may well be a factor, isn’t it always!

Hi @Evenstar always good to get a name for something it helps to get support the need.

I’m ok managed walk out this morning but paying for it since. Not really awful but had enough now it can bugger off.

It’s boiling
Boiling
Boiling
Boiling
Boiling
Boiling
Boiling!

Hi @Evenstar good that you can put a name to it but also not good if you know what I mean.

Interestingly we think I had covid March 2020 but it was when they were only testing people in hospitals. My neurologist suggested that my motor neuropathy could have been triggered by a viral infection and then made worse by my veganism, huge weight loss and nutritional deficiencies which makes sense! It sounds incredibly similar!! How much weight did you lose?

@Akire I know I can't stand it. I'm working (again) today and have a cold flannel and the fan on. I almost fainted this morning because I was so bloody hot. Not good when you are still a bit fat and someone needs to pick you up off the floor because your legs don't work 😂😂