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!

[quote WinoLino]@user1497873278 that sounds really awful. I have many bulging discs but different symptoms to you. Can you ask for a different opinion? Awful to have to be in that much pain. Are there any exercises that help? You might find Bob and Brad helpful on YouTube.

Had a phone appointment with physio yesterday who was helpful but also told me to stop going to Chiro as I'm wasting my money. I've been going for about 10 years . I've sort of lost sight of whether it's helpful or not now though.[/quote]
I always feel like this. I hear people constantly recommend physio and osteopath as he is miracle cures, I must've spent thousands of pounds trying to get help and nothing seems to work.

What did they say is the best course of action for you?

@doadeer I have been seeing a chiropractor for 11 years, but my back definitely does slip out of alignment at times and 3 visits a year for adjustment does seem to largely stop that becoming acute with associated pain and difficulty walking. I have a massage once a month at the same place with a very highly qualified lady who does scar work etc and it does help me keep going. I think unless you have been advised it is harmful then treatments from someone properly qualified might be helpful to some degree.

I ended up in A & E in February when the problems climbing the stairs became severe and my GP was given an action list including referral for a scan on my back, but the surgery have told me that owing to COVID GP referrals for scans are not being accepted, so I can’t be certain what is going on in my back, but I don’t have back pain any more than general aches and pains elsewhere.

@user1497873278 I just checked my feet after getting out of the shower and they were purple and blotchy. However when I stuff they returned to normal. Going to mention this to physio as never noticed it before!

@doadeer so chronically I have a twisted pelvis and bulging discs and recent leg pain has been diagnosed by different people as different things. Physio reckons it's "deep gluteal syndrome" and has recommended some exercises and wants to see me f2f next week

Stood not stuff

@doadeer I agree, never felt I've needed the next tablet. That sounds horrible about the shaking. We are all caught between a rock and a hard place when it comes to taking medication

Coming off pregablin was awful for me as I had to do it very quickly, I was hospitalised for it as we knew it would be bad. It seemed like I was having a heart attack at one point (the chest pain) but it was due to the pregablin, I had to come off it as it made me acutely suicidal and homicidal. It didn't make any difference to my overall pain once I got it out of my system. I can't understand why some people use it recreationally as I felt horrible on it.

I got my plaster cast off my wrist on Friday so I am able to hold phone to type again as I struggled with it and the cast.

Hi everyone sorry been awol. Nothing exciting just plodding on. Trying limit time on phone as wrists and hand joints are really sore. But still end up spending ages on it a day. Hard when don’t have many other distractions. I need look at phone arm gadget that can hold phone in bed.

How’s everyone’s day been?

I’m really good at walking (which sounds a strange thing to say) but it really eases my hip pain and I can walk miles. Did six miles today over holly fields and through woodland. Decided to make some little drawstring bags when I got home for my daughter and her friend - thought I was doing really well putting the sewing machine on the ironing board do I could sew standing up, as sitting causes me pain. Had so many problems with the machine that now my shoulder and arm are in pain! Can’t flipping win!!

@PaperMonster

I’m really good at walking (which sounds a strange thing to say) but it really eases my hip pain and I can walk miles. Did six miles today over holly fields and through woodland. Decided to make some little drawstring bags when I got home for my daughter and her friend - thought I was doing really well putting the sewing machine on the ironing board do I could sew standing up, as sitting causes me pain. Had so many problems with the machine that now my shoulder and arm are in pain! Can’t flipping win!!

That sounds great use of a Sunday well done. Bodies to tend to give with on hand and get revenge with the other!

Thanks @doadeer for your kind words no I don't know what originally caused the back problems, I can't really remember A time when I didn't have back pain though. Spoke to my GP on Friday and he offered me a steroid injection for my shoulder pain and has referred me to a sleep clinic to see if it could be the cause of the headaches. He previously referred me for an MRI on my head for the headaches, got the results Friday and thankfully it's clear

Hi all. Hope the weather warming up a bit is helping you all.

I fell off the thread after having relatively decent weeks for a change, but this week has started poorly. Walking today is like trying to run away in a dream (like my legs don't know how to follow instructions) and standing up hurts. Sitting down hurts. My arms hurt. Just want to curl into a ball and sleep the rest of the day away.

Just seen a post in Site Stuff from MNHQ

It’s clear that for some posters this would be really significant so we’re happy to say we’ll be launching a Chronic Pain topic in the next couple of weeks or so. Thanks for your patience.

We're finally getting it

Forgot to post a link - www.mumsnet.com/Talk/site_stuff/4235727-Please-help-us-to-improve-Mumsnet-join-the-Mumsnet-Talk-Testing-Panel

Excellent!

@MedusasBadHairDay

Just seen a post in Site Stuff from MNHQ

It’s clear that for some posters this would be really significant so we’re happy to say we’ll be launching a Chronic Pain topic in the next couple of weeks or so. Thanks for your patience.

We're finally getting it

That's good news.

Oh wow, that’s great news!

@Akire you’re absolutely not wrong there! Woke with my hip more painful than usual and got a text asking me to go for a walk- so I did! About five miles, and it’s done my hip the power of good!!

Wow!!!! Brilliant news

That's brilliant news about the topic!

I had a hospital appointment today that was a waste of time. My consultant wasn't there, and the doctor that I saw didn't know about my condition. So it was just a lot of waiting around on uncomfortable hospital chairs for no gain

Great news I hope they advertise it better and let people now. Bingo points to the poster who said why do you need a board can’t you get referred to w pain clinic. Lol lol lol

I’m hoping they will have a Disability section to though if change SN section it be “miles away” from us.

Just hope people will find it and use it and it becomes a resource for people.

This is great news.

I am having a flare up of what I assume is EDS as I am very tired and have pain in limbs. Quite breathless at times too which is the POTS.

I'm getting lost without wanting to, I don't remember everyone's illness . I read about the board we're supposedly getting, I'm really hoping Dunravenbadger still reads this.

It would be so helpful if there were lists of abbreviations for diagnosis/symptoms/medicine/treatment where posters can add to. Tips & tricks that can be gathered through the different threads, sections about "Living with .... for a day", how do you cope with stress/rejection/platitudes...

I don't read up sometimes. Mostly when I'm struggling with my own illness or pain or when I doubt I can be a decent partner/mother/friend. Chronic pain has taken away much of my self image. It has turned me from someone who fought small battles against injustice, into an angry person with no outlet. It made me sacrifice dreams. I wonder how long I will be crying and wishing it wasn't so and go on with what I do have. It feels like I'm ungrateful. My meandering mind doesn't allow me to simply "accept".

Sorry for the rant.

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

Stupid phone! Oh well if it’s worth saying it’s worth saying twice