Mumsnet Logo
My feed
Premium

Please
or
to access all these features

Chronic pain

Chronic Pain- Daily chat drop in thread #2 All welcome

979 replies

Akire · 16/08/2021 20:15

Hi all well we filled up the last one and now we have our newish chronic pain boards.

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 through it. All welcome jump in and feel supported Flowers

OP posts:
Report

doadeer · 18/08/2021 19:34

Hi!

I'll do an intro if anyone new wants to join.

I'm 31, I had horrific pelvic pain in pregnancy which has morphed into facet joint damage in my back. I'm being treated in lots of ways but nothing is helping. So if anyone wants to grumble about back pain I'm here for you!

Report

Akire · 18/08/2021 20:57

Thanks Doadeer, had passable day but one step back with pelvic pain. I know whatever issue is isn’t going magically disappear overnight but can’t help hoping it will!

OP posts:
Report

cricketmum84 · 19/08/2021 08:38

Marking my place Smile I'll catch up properly after work

Report

Akire · 19/08/2021 10:12

I was up 3-6am in pain. Lucky my peri menopause insomnia is helping not feel utterly sleep deprived so that’s something?

Heard some horror stories on Twitter that wheelchair parts from EU are taking 7 weeks Confused Emailed them yesterday to ask if my essential parts are coming from UK to EU. Though would hoped that if from EU they would have offered more than a “ we let you know when in”. So waiting to se what they say.

OP posts:
Report

cricketmum84 · 19/08/2021 11:17

I'm in so much pain today. Took a little tumble getting up the stairs last night and twisted my ankle so I'm really struggling to get about with the walking frame. Should probably get it checked out but I already spend way too much time at that hospital!

Counting down the minutes until I can have more codeine.

Report

Akire · 19/08/2021 11:57

Oh no bad luck. Yes know what you mean about hospital, I’m same.

My washing machine decided start smoke so that was fun!! Hurt self big time pulling it out but had to unplug to be on safe side. It is turning into a very expensive month

May worked out why pelvic pain is so bad could be side affect of one med. So going see if helps though causes other problems. I never used to be this sensitive to things but last few years are different. Juggle juggle!

OP posts:
Report

LunaAndHerMoonDragons · 19/08/2021 13:06

40, fibro, 3 young DC, all with SEN and a 'D'H that's checked out and does very little outside paid work, no matter how much pain I'm in. This recent flare is 4+ years and counting. Hanging on because I have to.

I slept wrong or something. Woke up with my not so bad shoulder and that side neck and arm in agony. We're in lockdown, so can't see physio or anyone else who could maybe fix it.

Report

cricketmum84 · 19/08/2021 13:26

@LunaAndHerMoonDragons

40, fibro, 3 young DC, all with SEN and a 'D'H that's checked out and does very little outside paid work, no matter how much pain I'm in. This recent flare is 4+ years and counting. Hanging on because I have to.

I slept wrong or something. Woke up with my not so bad shoulder and that side neck and arm in agony. We're in lockdown, so can't see physio or anyone else who could maybe fix it.

Hi 🙋🏼‍♀️ are there any online physios you could access? Like an e-consultation or something?

My daughter needed physio in her back during our lockdown and they did the appointments over zoom.
Report

Akire · 19/08/2021 14:52

Hi @LunaAndHerMoonDragons welcome to thread you are very welcome. That sounds tough, doesn’t take much when you are struggling at 99% capacity for something push you over edge. X

OP posts:
Report

savagebaggagemaster · 20/08/2021 00:07

Hi I'll say hello. I feel like a bit of a fraud to say I have chronic pain, but I guess I do.
I have a frozen shoulder which started during the first lockdown. I was lucky enough to be referred to physios and a surgeon who did steroid injections and hydrodilatation. These haven't helped unfortunately. The shoulder pain has lessened over time, but there is still a daily ache and very limited movement.
Since this March I developed pain on the outside of my thigh, just below the hip. I mentioned it to the physio who has tried to help, but nothing seems to be working and I need to ask for a second referral as it's a new issue. The gp advised me to take up Pilates. If only I could do the moves without being in pain, I would! Confused I generally feel very worn out and quite down as this pain is gnawing and constant. I can't even pull my foot out of a trouser leg without going "owww!". I'm not allowed to do the exercise I used to do (only a little bit of the cross trainer), no more cycling with the kids and no walking over rough ground, so I have become unfit and feel crap mentally and physically.
Thanks for listening to my moans. I appreciate many of you have far worse things to deal with.

Report

cricketmum84 · 20/08/2021 07:13

Definitely not a fraud @savagebaggagemaster! Constant pain just has such an effect on your quality of life doesn't it.

I have motor neuropathy that came on very suddenly just before Christmas. My neurology thinks that a virus attacked my nerves and it was made worse by vegan diet, lack of B vitamins and huge weight loss.

It means that my legs aren't strong enough for me to stand or walk unaided and I have constant burning pains and pins and needles and electric shock type pains down my lower legs, ankles and feet and numb tingly hands (so I'm terrible for typos lol).

Getting through a day at a time. I'm with neuro rehabilitation now and they are hopeful I may walk again but it's going to take a long time. The pain will probably always be there though.

I'm managing ok with work as they let me work from home and I have a great support system around me with DH and DC so it's not all bad.

Report

Akire · 20/08/2021 09:14

You are very welcome @savagebaggagemaster Anyone can live pain for days or week anymore than that starts have real affect on your life. At once you have one condition your body does tend get more! We all have same battles trying get treatment for number of conditions without making something worse.

I’ve lived chronic pain 20years only recently clicked that I do!

OP posts:
Report

savagebaggagemaster · 20/08/2021 10:26

@cricketmum84 that sounds awful. How can something like that just happen? It seems so unfair. I hope things improve for you, but I imagine the rehabilitation is exhausting in itself and a lot of very hard work. I'm glad you have good support from work and your family.
@Akire what a thought to think you've been suffering for 20 years. I reckon a lot of people just accept and live with the pain because what's the alternative. Many years ago I worked in a hospital anaesthetics department and saw for myself the amount of attendees to the pain clinic. It was phenomenally busy with a very long waiting list. The anaesthetists were great though and so committed to helping their chronic pain patients.

Report

Evenstar · 20/08/2021 10:46

@Akire that’s so true that you have a realisation that you are living with chronic pain, looking back over more than 20 years I have had so many different problems and just got on with it.

The NHS doesn’t seem to join the dots, and it was only when I found myself struggling to climb the stairs in February and ended up in A & E and the GP suspected fibromyalgia that I reflected on it all. Now the fibromyalgia is confirmed it’s a relief really, as I don’t feel I am being lazy compared to other people or wonder why I get tired more easily.

I had an awful “mini” flare at bedtime last night and had to take some codeine. I am still stuck with the built up shoe due to nobody being available to do the follow up after my foot surgery, and my chiropractor said my pelvis had twisted due to the height difference. I had been on my feet more yesterday and overdone it I think. It started with pain in my knees and within half an hour the pain was everywhere, luckily seems to be a lot better this morning.

Report

Akire · 20/08/2021 11:34

Yes always had horrific periods and migraines so that’s 10 days month. Then became Disabled bed ridden with ME/neuro Brian infection. So constant pain. Now suspect Fibro but when already disabled nobody really bothered as well in wheelchair and don’t work so what’s point diagnoses as can’t do much. Now 18months of bowel and stomach pain which exclude things it’s not and not much closer. So everyday it’s something hurting or more like 2/3/4.

Like lots others you see someone for one condition but isn’t really anyone who like at you over all. While it should be the GP you be lucky see same person more 3 times before move at my surgery. Then you spend most time juggling drugs because side effects make something else flair. You have to be the expert on you and juggle system work for you the best it can.

OP posts:
Report

Akire · 20/08/2021 11:36

Still waiting for news on wheelchair repair day 20 stuck at home. Not replied my email 2 days ok asking if part coming from UK or EU. If EU it’s currently 7 week wait. While I understand then not waiting tell people truth we have lives lead and need make plans.

OP posts:
Report

Evenstar · 20/08/2021 13:00

It would be far better to just be honest, but you should definitely be eligible for a loan chair when it has been so long.

Report

Akire · 20/08/2021 13:12

Problem is it’s still juddering and making racket but moving inside so that’s all they need to provide. I could go out but of it breaks I’m well truly stuffed. Been there done that don’t wish repeat

OP posts:
Report

Akire · 20/08/2021 17:40

The bastards never got back to me Angry so Monday be day 23 stuck at home.

Top it off the housing officer who promised email me back about a cupboard I need access since I have no TV for 8 weeks, hasn’t. 6 weeks trying get them sort, This is part of their job. Just fed up waiting for everything!! Why is everyone so inept at their jobs? I’m don’t expect instant results but
Feel like living on twilight zone. Send Gin, lots of Gin.

OP posts:
Report

Akire · 20/08/2021 17:49

Hope everyone has survived Gin and Flowers for making it to Friday

OP posts:
Report

cricketmum84 · 20/08/2021 22:59

It's just disgusting that they have left you like this for so long @Akire Sad don't they have any spares they could loan you while they are waiting?

After 90 mins hot tub, cbd oil, wine, amytrptaline and codeine I have just got into bed almost pain free. I could get used to this!

Report

OneNightTimeMenaceStrikesBack · 21/08/2021 01:13

little intro about me here : im 38, i have whole body complex regional pain syndrome which ive had sinc ei was 14, EDS, arthirtis in a lot of my body and i also have a chiari malformation in my brain that gives me a permanant headache. I use two crutches or a wheelchair allt he time a si cant walk unaided anymore and havent been able to for about 6 or so years. I get by but the pain never ends ever and im under so many different hospital clinics that i lose track of them! its a good job they send me reminders about my appointment si sall ic an Grin

Nice to 'meet' you all though i regret that youre all suffering too Thanks

Report

Akire · 21/08/2021 07:16

Hi @OneNightTimeMenaceStrikesBack you are very welcome. Yes lots and lots of us about! Think lots people see wheelchair and think stable injury not constant pain or that if you can’t walk - here is chair- job done nothing hold you back now!

Hot tub sounds amazing glad you have some treats look forward too. Up earlier as AO delivering new washing machine 7-12. Think I’m next small so hope can get back sleep, I’m wrecked.

OP posts:
Report

Akire · 23/08/2021 11:00

Happy Monday everyone hope the week feel like it has some good possibilities ahead. Hand hold for those who need it

OP posts:
Report

Evenstar · 23/08/2021 11:37

I finally heard back from PALS on Friday, they managed to speak to the consultant’s secretary and she said she would speak to the registrar this week. I messaged PALS straight back to inquire why she didn’t do that as promised a month ago.

Realistically I think I am now stuck with the built up shoe until 7 September as we are going away on 27th August for a week.

If the NHS.was a business and they regarded their users as customers the treatment we get would be totally unacceptable. My dog walker came in this morning and she was taking a call from the mental health team about her teenager, they couldn’t tell her whether or not a doctor was visiting this morning so that an adult could be with him. This was 20 minutes before the appointment and she had rung them on Friday morning.

My friend’s mother waited 16 hours at the weekend for palliative pain relief.

Report
Please create an account

To comment on this thread you need to create a Mumsnet account.

Sign up to continue reading

Mumsnet's better when you're logged in. You can customise your experience and access way more features like messaging, watch and hide threads, voting and much more.

Already signed up?