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.

@RainbowZebraWarrior bloody pares so often think they’re Gods. So frustrating! Fortunately past them now.
I’m still in hospital and have just been informed that I have been given the last three stoma bags! 😱

Bloody Paeds!

That’s helpful! Reminds me in hospital bleeding after being addmitted from A&E and them telling me they didn’t have any sanitary towels…. Ok I just take myself off back to my nice white bed. Yet if a man wanted a shave they had little packets of soap and a razor!

[quote Gilead]@RainbowZebraWarrior bloody pares so often think they’re Gods. So frustrating! Fortunately past them now.
I’m still in hospital and have just been informed that I have been given the last three stoma bags! 😱[/quote]
That's unacceptable. Hope they have put urgent script in with hospital pharmacy for more stoma bags.

And yes, some Paeds think they are Gods. DDs previous one was an ex professional athlete with a chip on his shoulder because he had to retire. Apparently he thought he had EDS, but was only diagnosed with Hypermobility. So I guess his mission was to fuck up other people who clearly have EDS.

What a dickhead!!

How is everyone today? Sun is out always helps.

I am happy with my last consultant appointment, I told him I am so tired all the time and he decided to cutback on my Amitriptyline as it might be surpressing my breathing at night!

I am to wean off Amitriptyline over the next few weeks and if my nerve pain gets worse (fingers crossed that Gabapentin on its own will do the job) I am to ask the GP Duloxetine instead.

I am very happy as I have managed to do some regular exercise three times a week for a month! I have been using my recumbent exercise bike with medical pedals with backstop, so my feet don't fall off. It has been painful afterwards but in a good way. It gets my pulse up and help my blood circulation. As I on crutches/powerchair the rest of the time I really need it.

I have NOT cycled today or yesterday, as I am on my heavy horrible periods and I actually miss the exercise!

So tomorrow I will get back on my bike!

That’s good news about change of meds. Great you been able to do exercise. I have foot pedal bike that moves on its own to try get circulation moving. Love to swim but we don’t have pool in our area. Sorry about nasty periods they are last thing you need!

@Akire

That’s good news about change of meds. Great you been able to do exercise. I have foot pedal bike that moves on its own to try get circulation moving. Love to swim but we don’t have pool in our area. Sorry about nasty periods they are last thing you need!

Thanks Akire. The horrible periods are a recent thing I have some pills off the GP which reduce the 5 days of hell to 2. I should be back to normal tomorrow!

Haven't checked in for a while. Hope everyone is well ❤️

Ups and downs with pain same old stuff! How’s your week going?

Evening all, I hope everyone is coping!
I have had an odd day today and a rough pain day!
Carer came in this morning and made me a cuppa and a flask, bless her she’d forgotten to boil the kettle! 🤣

Oh no that’s helpful! Todays random extra pain is breasts. Feel really tender and sore even when not moving like being kicked by a toddler. But meeting friend for lunch so that be nice and it’s not raining. Though building site opposite is constant noise. It’s going be loud long summer with no escape. I already have noise cancelation headphones with radio on over the top.

Oh @Akire noise is a nightmare, we’ll at least unwanted noise. The pain is odd. Have you been checked for CRPS? They have finally decided that it’s not neurosis! Lanchester Road have an undiagnosed syndrome worker. Might be worth a call?

That’s I’ve looked up CRPS it’s apparently starting in limbs and can spread. I do think it because of infection it is getting less but been month certainly taking it’s time.

Met my friend which was lovely amazing just seeing another person can lift your spirits.

i have CRPS @Akire and youre right it would normally present in a limb ot begin with after even a small injury and then yes, it canm spread tot he whole body like mine has done. yours doesnt sound ike it to me but you could have an atypical presentation so if youre worried i would mention it, it is truly hell to live with :(

Morning all. Shit nights sleep here

Morning all and gentle hugs all round. Interesting about CRPS. Like everything, some symptoms can be similar to EDS, Fibro, MS and more. So confusing. I've also got breast pain at the minute, but I'm putting that down to Menopause. Such fun!

I've had really bad week or so. Unable to do anything and fed up. But then had Physio review on Wed night. Rehab programme has been tweaked again and I've been promised I'll stay in the system forever. Been on weekly rehab for 5 months now. It's funny cos people seem to do about 6 weeks then move on as they are 'fixed' so I've seen a lot of people come and go. I feel like the resident! Physio has also written a report for my tribunal as she was furious about the web of lies DWP spun (but wasn't surprised) Anyhow, I was in agony after Wed night but then woke up yesterday feeling so much brighter so took myself off to see Belfast af the Movies. Was bloody lovely do do something just for myself. And in a 'fuck it' moment, I've also booked a holiday for myself and DD.

Yea your right I can look at any given list of disease and have 70% of them at any time! Todays random is left leg pain all the way down to the bone.

Pelvic pain is back not due see specialist till some point early April don’t have apt yet. Managed get out hour see mate coffee but now totally wrecked and rest of day be write off. Laid here 2h to tired get up go loo yet need loo so can’t drop off to sleep.

Glad physio going to keep seeing you and will support you. You will have your needlessly pointless day in court!

Checking in and saying hello to anyone who might need an ear tonight. How is everyone? I'm not feeling too bad, so wanted to say please offload as a problem shared and all that x

@Akire

Ups and downs with pain same old stuff! How’s your week going?

Sorry, @Akire. I've only just seen this.

I've been feeling okay, thank you. A bit in pain and foggy still. But a bit better than usual. Hope you've been okay ❤️

Hope everyone is doing ok. Weekends always knock me
Out of routines. Been getting few hours every day of sore throat feeling like coming down but it’s just part of chronic fatigue I have. Then just magically goes until next day.

@Akire

Hope everyone is doing ok. Weekends always knock me Out of routines. Been getting few hours every day of sore throat feeling like coming down but it’s just part of chronic fatigue I have. Then just magically goes until next day.

I get sore throats too, @Akire. Make sure you have some throat lozenges to hand ❤️

I also get the throat problems. Although they were worse before menopause. Used to get tonsillitis all the time too. It's definitely a run down / chronic fatigue / low immunity issue. Can highly recommend Propolis Lozengers which Amazon sell. They are magical. Propolis is amazing for all sorts. I'm currently experimenting with making a tincture with it (beekeepers daughter)

Thanks @RainbowZebraWarrior I will look them up. Not sure if it is sore or just feels like it because after few hours it’s all better. Another annoying bizarre body thing.

Cracking headache today sigh. But did manage get out for few errands. Hope everyone is doing ok