Chronic pain Pub Corner - support thread#4 All Welcome

[Akire]

Welcome to our new shiny thread for February. The lattes and expressos were not quite hitting the mark so we have moved to the pub. Whether you need Diet Coke or stiff drink help yourself we have a tab going and hunky staff are very attentive.

@Akire

I’ve got one those sticky on things that mean can hold between fingers at back. About £7 and lots of colours.

Thanks @Akire I've seen the pop sockets but I use a wallet type phone case as I drop it a lot and I thought they had to be stuck to the actual phone? I gave borrowed a goose neck clamp from my DS's room and put it on the table beside where I sit for most of the day. Of course I've hurt my hands/arms setting it up... I'm an idiot I can never be patient to wait for people to help

This type of thing

I’ve got one of those on my over bed table, I have to have table up really close so I can touch and see it. The clamp is strong enough support in upside down U. Had few over years but wouldn’t fix on side of bed. This is current one.

finally have an appointmnert to have my knee xrayted! its on saturday! ive been waiting weeks after gp referred fro it! she things ive got arthirtis in my knee

@Akire

I’ve got one of those on my over bed table, I have to have table up really close so I can touch and see it. The clamp is strong enough support in upside down U. Had few over years but wouldn’t fix on side of bed. This is current one.

Thank you ❤

Well, I got back from hospital appointment to find a delivery of the additional Gabapentin pills!

So I guess the doctors found their notes. I just hope they updated things at the pharmacy end too.

Sorry to hear about broken wrist, sounds very painful. Hope you heal quickly.

@Worrysaboutalot glad you've got your pills.

I'm in a lot of pain today. Having wriggly DD in my bed doesn't help. But she doesn't want to leave my side after her friends mum suddenly passing away over the weekend. Which I completely understand. We're all heartbroken. She was a lovely woman. I cant imagine how her family is feeling.

@Worrysaboutalot

Well, I got back from hospital appointment to find a delivery of the additional Gabapentin pills!

So I guess the doctors found their notes. I just hope they updated things at the pharmacy end too.

Sorry to hear about broken wrist, sounds very painful. Hope you heal quickly.

Great about your pills!

@HerRoyalHappiness gentle hugs to you. My DD took it badly when my friend passed away suddenly. She's still in my bed and hates leaving me x

Great about pills. Made wheelchair apt but v tiering and confusion. 2 chairs choose from neither felt comfy as to small to big or diff cushions so couldn’t sit back. Did decide on one in the end but then taxi took 3h!! Always way when need ramp and big taxi but havnt Much all day or been to loo and not helping my exploding kidneys. Staff were lovely but every time you have yet another disaster it knocks my confidence. This is way I never go anywhere as never can count getting home. new chair could be 3-6months but least one more horrible job out of the way.

Glad you got new chair sorted @Akire.

I have had an interesting day! Ds drove here yesterday, 200 odd miles and car breaks down when it gets here. RAC out, tow car to garage sayiitll be ready tomorrow. DS left coat and wallet in car so drove to garage, apparently won’t be back for a week! Okay, let’s go and take stick. So garden centre for a lovely tea. Took huge cakes home. Chill evening, then I stood up to get to my bed. We’ll take me to the moon in a handcart, the pain from mid back to knee was (is) agonising. DS had to carry me to stairlift and from it to bed. Can’t put weight on it, no idea what it is.

@Gilead

Glad you got new chair sorted *@Akire*.

I have had an interesting day! Ds drove here yesterday, 200 odd miles and car breaks down when it gets here. RAC out, tow car to garage sayiitll be ready tomorrow. DS left coat and wallet in car so drove to garage, apparently won’t be back for a week! Okay, let’s go and take stick. So garden centre for a lovely tea. Took huge cakes home. Chill evening, then I stood up to get to my bed. We’ll take me to the moon in a handcart, the pain from mid back to knee was (is) agonising. DS had to carry me to stairlift and from it to bed. Can’t put weight on it, no idea what it is.

Oh no! How are you today??

How is everyone? I’m feeling better back and hip pain are behaving enough so I can actually tell kidney pain has gone. Got 24h of meds left and hopefully that’s one infection gone and dusted.

Having more face nerve pain not sure when become Trigeminal neuralgia luckily it’s only few seconds at time not constant. But happening more and more in same place. Wonder if it’s linked with mask wearing as cuts across same place as mask and have just been out. Have try keep note to see if pattern. Come on body you don’t need any more random pain things play nicely!

Anyone have any weekend plans?

@Gilead how are you now?

No weekend plans @Akire just going to do nothing at all.

Doctor has just left. I am totally immobile apart from the four agonising steps to the loo, I cry I pee, I go back to bed! Not sure what’s going on, prescribed some Valium in case a muscle is pinching a nerve, see how it goes over the weekend. If some improvements, she will send carers in for a couple of weeks. If none I’m off to the hospital, which worries me. I’m between two hospitals, one excellent, one awful.

Good you are feeling better pain wise @Akire but not about your face. Wonder if you grind your teeth in your sleep? I do. And when awake sometimes!
I am not on top form.
Had some bad news about my close friend (very bleak cancer news) so not slept much. Generally achy and headachy.
No weekend plans which I love. Just pottering and hanging out with family xx

Oh @Gilead hopefully you improve a bit with the vallium
@wildthingsinthenight I'm sorry about your bleak news.

to you both @Gilead and @wildthingsinthenight

I've finally had my measuring appt for my custom EDS Hy Mo body suit. Spent an hour at hosp this morning which was fun. Imagine getting measured for a suit, but just in underwear. And dozens of measurements taken in all manner of books and crannies. Anyway, should be worth it in the end. The lady they used as a 'guinea pig" has reported that her day to day 7/8/9 out of 10 pain is now reduced to 4/5. So I'm the first person to get this in my trust since they experimented with her. It's taken about 7 months to get funding. I'm so excited, but it will take approx 6 to 8 weeks to be made. In meantime I've had foot impressions taken for 3d printed foot orthotics! and I got to choose some funky colours too.

Years and years of disbelief, gaslighting, poor medical knowledge is hopefully just a bad memory. So many times I've driven back from that hospital crying. Today I drove back thinking, wow. I'm being looked after. I'm actually worthwhile, believed and supported.

That’s fabulous @RainbowZebraWarrior! Where are you, dd has EDS to a far greater extent than I do.

@Gilead

Doctor has just left. I am totally immobile apart from the four agonising steps to the loo, I cry I pee, I go back to bed! Not sure what’s going on, prescribed some Valium in case a muscle is pinching a nerve, see how it goes over the weekend. If some improvements, she will send carers in for a couple of weeks. If none I’m off to the hospital, which worries me. I’m between two hospitals, one excellent, one awful.

Sorry I didn't see your update before I posted. So sorry you are in such a bad way

@RainbowZebraWarrior

I've finally had my measuring appt for my custom EDS Hy Mo body suit. Spent an hour at hosp this morning which was fun. Imagine getting measured for a suit, but just in underwear. And dozens of measurements taken in all manner of books and crannies. Anyway, should be worth it in the end. The lady they used as a 'guinea pig" has reported that her day to day 7/8/9 out of 10 pain is now reduced to 4/5. So I'm the first person to get this in my trust since they experimented with her. It's taken about 7 months to get funding. I'm so excited, but it will take approx 6 to 8 weeks to be made. In meantime I've had foot impressions taken for 3d printed foot orthotics! and I got to choose some funky colours too.

Years and years of disbelief, gaslighting, poor medical knowledge is hopefully just a bad memory. So many times I've driven back from that hospital crying. Today I drove back thinking, wow. I'm being looked after. I'm actually worthwhile, believed and supported.

That's amazing news! Excited for you!

Oh no @Gilead are they going admit you today? Is it just because you can’t do basics or New Carer planning some kind investigations and good drugs?

The body suit sounds amazing! What will it be made of? Is there a gap for the loo?! Apart time some more support for EDS beyond just popping back in own joints.

I do grind my teeth but have for years this is more the eye bone socket nerve pain than jaw. Had two infections in top root canal and pain was never in eye socket. Could be tooth related I suppose, have to wait and see.

Sending more love to @Gilead and @wildthingsinthenight ❤️❤️❤️

I always feel that despite chronic pain and being unable to exercise I’m often the odd one out because I struggle so much with my weight the other way. Everything I eat is high calorie but I still circle the 90lb mark.
I take oral morphine for pain but don’t want anything stronger because I drive occasionally and I know they’d take my driving licence.