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Chronic pain

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Original poster

CHRONIC PAIN - share your moans and achievements

983 replies

doadeer · 10/03/2021 16:50

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!

OP posts:
Thread gallery
12
Akire · 04/08/2021 11:36

Very exciting I’m so pleased for you

Akire · 04/08/2021 11:37

Oh more pictures. Great for wheelchair and really flat. If I ever win the lotto I’m buying a house with a garden!

Glitterblue · 04/08/2021 13:58

@Akire thank you 😊 They didn't say, there's a number I've to phone to make an appointment, and I tried and tried to phone it yesterday but got to 10 minutes on hold and got cut off every time. There was a recorded message at the start about unprecedented demand for the services so I'm not holding out much hope for an appointment any time soon 😬

Akire · 04/08/2021 14:51

Oh no. Sadly every service I ring regardless of day or time has unusally levels of demand at the moment sort of messages. No it can’t be unusually if it’s everyday!

KatieNorman · 04/08/2021 17:59

Would you like to share your experience of being treated for chronic primary pain?

I am looking for volunteers to take part in a research project on the treatment of chronic primary pain in the UK. Participation involves an informal interview via Skype lasting 40-60 minutes.

If you would like to be involved or for further information please visit www.facebook.com/Chronicprimarypainresearch or email [email protected]

I think it's so important to understand the lived experience of people with chronic pain and would be very grateful for your involvement with this project.

Worrysaboutalot · 04/08/2021 22:37

Feeling bad tonight.

I fell in my powerchair due to a drain in the edge of a pathway in the local park. I was thrown with the chair. So I hit the floor and my chair fell on top of me.

My children helped the chair upright and loads of people ran over. I was so embarrassed and hurt my already sprained left shoulder. Luckily I am numb from the bust down, so my legs didn't hurt.

I struggled so hard to climb slowly back onto my chair with my crutches.

So now I am in bed and my nerves sore playing up, so I have twitchy nerve pain in my legs and my poorly shoulder.

It doesn't sound a lot but I found today hard.

Luckily I have a wonderful DH and kids to look after me.

Glitterblue · 05/08/2021 00:09

Oh no, @Worrysaboutalot, you poor thing 😥 That sounds awful. I hope you don't wake up too sore tomorrow and I'm glad you have a lovely DH and DC to look after you. Sending you gentle hugs.

Akire · 05/08/2021 07:32

Oh no that is so scary. This is why I don’t wear a seatbelt in my chair as if I ever do slid off curb (nearly done a few times with oil on pavement say) I don’t want me trapped with 10 stone chair on top of me.

Anything like that knocks your confidence and it’s major slam and bruise to your body with the force. No wonder you feel physically and emotionally

Akire · 05/08/2021 09:18

@KatieNorman

Would you like to share your experience of being treated for chronic primary pain?

I am looking for volunteers to take part in a research project on the treatment of chronic primary pain in the UK. Participation involves an informal interview via Skype lasting 40-60 minutes.

If you would like to be involved or for further information please visit www.facebook.com/Chronicprimarypainresearch or email [email protected]

I think it's so important to understand the lived experience of people with chronic pain and would be very grateful for your involvement with this project.

I’ve read your page but not sure what you are wanting to study? I don’t feel like I’m treated for chronic pain as such never heard doctors describe it as such. I like lots of people have 4/5 different things maybe 5 days a month for that 10 days a month for that. Flare up very few months for the other.

They always get treated in isolation and well it’s only 5 days and no one looks at big picture of all conditions combined. Which means 8/10 days you are in lots of pain but because not one condition you are left to manage yourself.

Akire · 05/08/2021 12:47

How is everyone doing? Had switch to manual chair as now front wheel is damaged & can’t be stuck as flat is tiny and can’t move chair myself or get around it. Emailed them to say look there is now more damage it’s not going last 4 more days. They replied saying I have an appointment on Monday! It’s so souls destroying. Ideally I’d pay for fabulous chair fitted my needs and pay for repair at drop of hat but I can’t. Giving up another week of your life and being stuck without them asking if you have a job or Kids care for or you know just stuff you need to do. Just no duty of care at all they don’t know how I'm coping or if can get out of bed to phone if the wheel does fall off. Sigh

On plus side not feeling any more pain after yesterday’s fall so that at least is a win.

Akire · 07/08/2021 17:27

Just bumping thread if anyone is around over the weekend. Hope we are all coping with what day throws at us Flowers

Evenstar · 07/08/2021 20:05

OK here, struggling with boredom a bit as I would like to do more, but the built up shoe makes it tiring to walk and feel achy. I think the trouble is that with COVID we have all spent so much time at home with not much to do that it feels like more of the same.

Sorry to hear they are still being so unhelpful with your chair ☹️

cricketmum84 · 08/08/2021 08:06

Fingers crossed for chair fixing tomorrow then! Just one more day for you to get through.

I had an awful night. Could barely sleep due to the pains in my feet. On the positive side though I seem to be getting a tiny bit of movement back in my ankles. Im hoping that the increased pain levels mean that my nerves are starting to recover?? Or that could just be wishful thinking....

Akire · 08/08/2021 11:03

Hi @cricketmum84 and @Evenstar had bad few days pain also. My doctor says I should be able tolerate some Diary but always end up flaring stomach pain. Even though I’m desperate have some cheese. Guess leave it for few more months and see.

Yes first week in lockdown always the worst. Had to go back using power chair as hurting to much with manual chair. It’s pulling one side and making awful Noise but still moving.

Worrysaboutalot · 08/08/2021 17:38

I am still struggling with the extra shoulder pain for when I fell and my wheelchair fell onto me. Luckily I only got a few bruises on my legs from the fall.

The nerve pain in my legs and my arms I am use to dealing with but this shoulder thing has really got me down. I hope it heals quickly, as I am struggling with so many small things, on the plus side keeping my legs up reduces the swelling and I have time to chat online :)

Akire · 09/08/2021 08:05

Been up since 5.45 with pain oh joy! Just chest and hip pain that wears off as day goes on but thank goodness for early morning radio. Today’s wheelchair fix day if they turn up at all…

@Worrysaboutalot I find shoulder neck and upper arm pain takes so much longer to heal than you think as you are constantly pulling it in daily use.

Akire · 09/08/2021 11:43

Half way through time slot no sign of repair man Shock no not really shocked.

Akire · 09/08/2021 16:44

Well they have been say it’s wheel bearing and should be able fix this week. But could be the motor. As it’s only Monday this week still feels long way off. Still least they came.

Stomach pain been very bad so wish knew what was causing it Confused

Evenstar · 09/08/2021 17:35

Hope the repair sooner rather than later, sorry to hear about the pain.

Akire · 09/08/2021 18:20

Thanks I’m hoping Wednesday but who knows! How have we all been today. Pouring here again so not so bad can’t get out!

cricketmum84 · 09/08/2021 20:41

Oh god that's not what you wanted!! Another day with no chair :(

Not too bad a day here. Worked from 7am - 7.30pm but my new assistant has passed her pre employment checks so hopefully hours will be a bit more normal come September.

Kids have been really good today, bringing in washing and putting another load out on the line, tidying round and washing up.

I only woke a couple of times last night with pain. Tried doctors this morning but by the time I'd managed to get through all appointments had gone. I really need to speak to someone about the pain medication.

Akire · 09/08/2021 20:52

The phone system is barbaric isn’t it. Shouldn’t be down to luck we seriously need to reduce doctor patient ratio so you have hope in hell of getting in touch when need.

I ordered some CBD oil since can’t get out or attempt doctors see if does anything. Been putting it off trying but needs must.

cricketmum84 · 09/08/2021 21:41

@Akire

The phone system is barbaric isn’t it. Shouldn’t be down to luck we seriously need to reduce doctor patient ratio so you have hope in hell of getting in touch when need.

I ordered some CBD oil since can’t get out or attempt doctors see if does anything. Been putting it off trying but needs must.

I've just had 3 drops of mine. Then 2 codeine and an amitryptaline in 10 mins and hopefully will sleep!!
Evenstar · 10/08/2021 10:50

I did try CBD, but I didn’t feel it made a lot of difference for me. I think it is definitely worth giving things a try, I felt the Sunset CBD at night helped a bit with dropping off to sleep.

cricketmum84 · 10/08/2021 11:07

@Evenstar it's definitely working for me but then I pay £100 for 10mls and it's very high strength. I use it sparingly.... 2 or 3 drops a night and the bottle can last me 12 weeks.