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!

That’s why we wanted a board rather than one long chat thread where no one can remember who’s who or with what. Long threads put off people who have not read from start.

MN only said it on the other thread fora Disabilities board. Not sure when it will happen. Or if waiting for time to shut down forum for few hours and jiggle around lots of it.

We all get the angry and sad sometimes. Even after years and feeling like you are ok it can be one little thing that you can’t do and feels so unjust. Hopefully on new board we can explore these things in more detail and keep adding to them. I’m being feeling low lately and pains being reasonable. Think it’s end lockdown and everyone has plans for future and I’m like there’s nothing!

Never say sorry this is our space to say it as it is. X

That’s why we wanted a board rather than one long chat thread where no one can remember who’s who or with what. Long threads put off people who have not read from start.

MN only said it on the other thread fora Disabilities board. Not sure when it will happen. Or if waiting for time to shut down forum for few hours and jiggle around lots of it.

We all get the angry and sad sometimes. Even after years and feeling like you are ok it can be one little thing that you can’t do and feels so unjust. Hopefully on new board we can explore these things in more detail and keep adding to them. I’m being feeling low lately and pains being reasonable. Think it’s end lockdown and everyone has plans for future and I’m like there’s nothing!

Never say sorry this is our space to say it as it is. X

I’ve just looked we have a new board! 🎉🎉will try report this and get it moved over to start.

And it worked we have moved!

@Akire

And it worked we have moved!

🥳

I will find and ask for older threads and maybe tomorrow go through older do you want and @ those that showed interest. Far more than post on this thread

I’ve reported 20 plus (lost count) that I could find so far. So we should look less empty

@Akire many thanks for alerting me to the new board.

You are welcome!
Did 86 @ now hand is numb. Send chocolate!

Hi,
Thanks for the new Board!
I'm 48, historic dx of ME and fibro.
Huge issues since I turned 40 including AF, joint pains, hemi plegic migraines, menstrual issues...
Throw in achilles tendinitis, arthritic changes in my spine, vision problems and lesion on my cervical spine which is under investigation.
I have to have 6 monthly scans on my eye as the condition could become malignant.
I'm waiting on bloods and another mri for my neck.
All in all, I'm feeling pretty sorry for myself atm
Had my 2nd vaccine today and it hurt! 😬
I can't help feeling that all my issues are related (no idea how...) and I'm going to make a nuisance of myself and insist on a referral - but to who!??
Any suggestions welcome!
Have a good weekend everyone x

Hello everyone 👋🏻 I am 56 waiting for a rheumatology appointment to confirm fibromyalgia,. History of back pain, underactive thyroid, asthma, hip pain (trochanteric tendonitis and bursitis), severe reactive arthritis after parvovirus 23 years ago which flares with any flu like illness, eczema, hay fever, gluten intolerance, trigeminal neuralgia and was diagnosed with hemiplegic migraine last year, but I actually think that was COVID. Luckily not all these are current problems.

I think that’s everything worried about a diagnosis of fibromyalgia, but feel that something underlying has been going on for years.

Welcome to the thread guys! Feel free start any on specific issues this is general daily chat check in version.

I love it when read other people’s lists it helps me feel by body may be a train wreck but I’m not alone!

Thanks for the heads up @Akire.

MN are sorting out this corner so e should be able to start new threads soon.

What’s one thing you are proud of doing today?

Great idea @Akire

Today I'm proud of posting my friend's birthday present. I had to wrap it as well which is difficult for me. I could have put off the visit to the post office but I didn't want it to be late so made myself go.

Love this idea Akire.

Today I'm proud of actually doing some of my botany course instead of feeling too tired or sore to concentrate. I wrote notes and everything.

@DuckWithOneWing

Great idea *@Akire*

Today I'm proud of posting my friend's birthday present. I had to wrap it as well which is difficult for me. I could have put off the visit to the post office but I didn't want it to be late so made myself go.

Well done on posting the present. It is a big effort tries not to think about all the things waiting to be posted here.

Have had a short stay in hospital with another episode of hemiplegic migraine this week ☹️ definitely no COVID involved, which I definitely suspected last year. My discharge letter has emphasised that I must be assessed at hospital for any future episodes as I can’t take the chance of it being assessed anywhere other than the stroke unit.

They suggested I could ask my GP for a neurology referral, but it sounds like that might mean being put on another medication (to add to the several I am already taking) and as it is just over a year since the first episode that does seem over the top in a way.

Achievements, I managed to remember to order my brother’s birthday present after a sleepless night in the hospital so it will get there on time!

Oh Evenstar that’s never fun, I hate when one department can’t refer you straight. Managed to clear my draining board yesterday which makes kitchen look tidier. I don’t have room for a dishwasher in small flat. Though when you met 20/30 y olds never lived without one I feel old!

Today feeling smug that period still hadn’t arrived. Think perimenapause is kicking in after a year or more of very short cycles (17 periods last year) and now made it to today 32. Breast are massive mind! But still feels relive to have less pain with that.

How is everyone doing the last few days? Does the wet weather make anyone else’s pain worse? Or maybe it’s like
Sun makes everything full gloomy?

Had a drugged up day in bed but another day nearly got through so can’t complain. Also playing the waiting for a parcel dare I go to the loo game. Always entertaining!

I take the quiet on this thread means people are having a rough time so sending some friday

Thank you @Akire for not so good today to be honest. I got very stressed about collecting my new car tomorrow, the paperwork is not going smoothly as it is all being done via password protected email links “because of COVID”.

The more stressed I got the more I could feel loss of sensation in my face, I am not at all eager to have another hospital trip, so consciously stepped back and closed my eyes for a few minutes.

Also feeling a bit rubbish about having had to request a seat for an event at my son’s college in July, but I know I would find it very difficult to stand for an hour and a half ☹️

You shouldn’t feel bad about asking for what you need that’s just being civilised.
Paperwork is never as straight forward is it, but new car sounds positive. Something to look forward too.

Hi can I quietly join? Been reading the thread and like so many of you been fighting with the GP for years well that’s if I can speak to one at the moment! I still work full time luckily (that’s all I really do during the week. I phone up and they have this stupid triage system since covid, a doctor will call you back at sometime during the day, time unknown wait by the phone, erm I’m at work! I sometimes can step out but who wants to discuss their medical problems in a corridor? Or take a day off every month (the GP requests a phone call each month?!)

I have fibromyalgia, chronic hemiplegic migraines, sciatic pain and some of chronic pelvic pain. Right now all I take is dihydrocodeine and topiramate for the migraines having had pregabalin, gabapentin, duoxetine and amitriptyline over the years. I’m utterly fed up of the monthly phonecalls, prescriptions, collecting them, running low etc. Not good when your constantly exhausted and in pain.

Hi @sweetkitty you are very welcome. That all sounds very familiar. In covid my GP changed way you order meds so you need ask for each item. Granted some people got on repeat every time and didn’t need. But it’s right pain in the back side and I find dealing with it all v stressful.

I know sometimes they need to do meds reviews but when it’s long term medication you need to take once a year is enough. They should trust you to know if something has changed.