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.

Love crisps sandwiches, have been naughty got some bread even though causes pain because when your wrecked you can live of sandwich’s for days and no gluten free really does job. Why is it always pain OR be hungry etc

@Akire

Love crisps sandwiches, have been naughty got some bread even though causes pain because when your wrecked you can live of sandwich’s for days and no gluten free really does job. Why is it always pain OR be hungry etc

I'm the same. I've gone for the bread which I get least bother with. As you say, needs must. Last night was a cheese and pickle sandwhich. Tonight I think might be ready meal macaroni cheese cos it's just too damn cold and it makes me feel so bloody tired, makes pain and asthma worse too.

Sending you lots of love and luck, @Gilead ❤️

Hi everyone,

Just checking in. Had my tens machine delivered a few days ago and it's really helped. I only wish I brought it ages ago 🙂

Had a good physio session last week and it went really well. They're looking at ordering me a crutch. Waiting for them to book a date to visit me at home. ❤️

Better day today, we’ll some of it was. I was told I had to be wheeled to the loo. It’s not far but good grief it was agonising. I must admit I created a bit the next time and refused, commode next to bed or nothing! This is what happened. But the meds must have started kicking in because I managed with barely a squeak. Felt bad but good. I was in pain but what I called normal pain, I could function. It was quite a blissful half hour.
Now im just jealous of the crisp bitty folks! 😆
Hope everyone has a decent day tomorrow.
@RainbowZebraWarrior if you’re not veggie, Lidl do a macaroni cheese with pancetta etc. it’s lush and you’d probably get three meals out of it.

@Gilead glad things are getting a bit better for you ❤️

Oooh I love a crisp butty

Morning all.

Ah @Gilead that sounds like an improvement. Still sounds bloody tough for you though. I shall be looking into this Lidl Macaroni cheese with pancetta delight asap. It's been my savoir of late. Pretty much the one thing I'd be happy to eat every day if I had to.

Less pain is good, hope they telling you the plan soon. Must be an operation?? They do seem to be dragging their feet I mean I know you have to wait for op but waiting this long to find out.

Woke up at 8 but managed get back to sleep till 10. Result!

@ICrunchCrispsNotNumbers good news about TeNS I love mine.

@Akire 👍🏻🙂. Glad you had a good nights sleep!

Anyone e get weird itching with fibromygia? There seems to be an u relieved itchi g on my feet that won't quit.
How long before you were able to accept the diagnosis and not think its just my head?
Had to admit defeat looking after my DgD today. The pain in my hands has gone to a new level and it was actually unsafe. My DSIs her yesterday a d hadn't realised how things were for me, which h makes me think perhaps my family don't understand but not through ignorance but a view of Fibro as a bit meh?
Pain is not responding g to naprixen
Is there any difference between gabapentin and pregabalin.

@lolaflores

Anyone e get weird itching with fibromygia? There seems to be an u relieved itchi g on my feet that won't quit. How long before you were able to accept the diagnosis and not think its just my head? Had to admit defeat looking after my DgD today. The pain in my hands has gone to a new level and it was actually unsafe. My DSIs her yesterday a d hadn't realised how things were for me, which h makes me think perhaps my family don't understand but not through ignorance but a view of Fibro as a bit meh? Pain is not responding g to naprixen Is there any difference between gabapentin and pregabalin.

I'll try and answer your questions (from my own point of view)

I have itchiness constantly as I've had chronic urticaria for 17 years. I take high dose antihistamines for this. I also have a different type of itch which I believe is related to the menopause. I then have tingling and itching in the feet which feeps very different and 'specific' and is due to Neropathy.

I think I've said this before, but you have to accept your limitations otherwise you will end up much worse. It doesn't have to be the actual diagnosis that you accept per se.

However, two things always occur to me (and I say this from personal experience and from working as a Sports Therapist for 15 years)

1. Patients with fibromyalgia do seem to hate 'giving in' to the condition. As you've said yourself it's partly because it's misunderstood and / or people around you grossly underestimate it's affect on you.
2. Often patients wonder if it's 'just' fibro or if other things are at play. It is often the case that yes, there are other things at play. Once a fibro diagnosis is given, sometimes it's left at that by the medical profession. That is, unless you go back and say (for example) I actually think this is Neuropathy and I'd like it to be investigated.

Again, I think I've said this before, but it bears repeating. I think you need to have strong words with family about their expectations of you. And be honest about how much pain and discomfort you are in. Believe me, it's a shit thing to admit to. I've been there. I'm a 50 year old single parent to a 10 year old girl. I'd love to be fit. But kn not, and I'm severely restricted in what I can do. Denying that or pushing myself to do things I really couldn't do just made me feel wore though. to you as it's like grieving for your old self and it's very very hard.

Gabapentin and Pregabalin are both a similar drug, but with slightly different side effects. From what I know.

Sorry for all the bloody typos. Pain and numbness in hands here too.

I think I'd be inclined to ask for a review of meds and a review / 2nd opinion in general @lolaflores Anecdotally, I know at least 6 people who've been misdiagnosed with fibro. Or at least other things have been missed as a result. And I have fibro among the mix of my own diagnoses (although the other conditions likely explain the majority of my symptoms)

Its my own gross under estimation of my limits and sramina and others that make a heady mix.
Tha k you for your answers
Today is a shit show that I've llowed to happen die to pig headed ness and poor boundaries.

My sisters face was a bit of a shock. She was raly taken aback when i laid out just how limited i have become phsyically and its accelerated steeply the last 10 months.
On the dYs i feel well, i think it must bebimproving thenbits 20 steps back like today.
It is so unpredictable and disheartening when the wheels come off.
I appreciate you taking the time

RainbowZebraWarrior you have my profound respect raising g your daughter single handed. I was one with my eldest for 5 years before met DH. In honesty, I think inhad my 1st episode of fibro but docs said it was carpal tunnel.
Then my back
Then my neck
Shoulder
It's been endmess

Must have been hard for family to see @lolaflores. Especially when it’s “oh what’s happened?” And when it’s just a random slow sink into mystery illness it’s hard for people to understand why no diagnosis.

@lolaflores I totally get it. My own pig headedness made me continue working like a trojan which eventually broke me. The irony of fixing people as a therapist whilst slowly breaking myself.

Don't be too hard on yourself. And I get about it being a shock to families too. Until my Mum came to terms with things recently, she would cry when she saw me. It was basically because I fell off a cliff. Or as you say, the wheels came off. I stay away from extended family and friends because I can't bear to be observed. I know that bit would sound hard to some, but it suits me because it's my preference / partly also Autism.

Be kind to yourself.

I think after a while family started becoming "fatigued" bothered litany of diagnosis. Surgery. Pain. Meds. All in glacial pace.
And I don't want to be o served and gave to pick it over endlessly. I ha e said othing to extended family (of which there are a lot) bar 1 cousin who asked when we were coming home for a visit. I told him that it would be not for a while because of fibro and I'd said nothing so far. It feels a lot to exain but i missed them all so so much and I didn't know when I wld see them. Something I'd don't want to think about really

Hi all. Hope everyone doing ok.

I'm just sat in hospital waiting area for my 2nd appointment of the day. The amount of times this has happened lately is just weird. Fair enough, I'm under 5 or 6 departments. But I'm out of spoons already and that's before I've even been called in to this one.

Me and DD are just a big tangled ball of mutual EDS and Autism issues and it's so hard to keep putting one foot in front of the other. Metaphorically and literally.

What I would give for a holiday.

Sending you good vibes for the day, @RainbowZebraWarrior ❤️

@RainbowZebraWarrior oh no! I hope you manage to get through the rest of the day intact, physically and mentally

Thanks to both of you 💜

Well I've got a referral to pain management. And they were also fab in listening to my PIP woes. There was a new OT in with them today (was Rheumy team - but still waiting for consultants review) They have told me to go for Tribunal and they would back me. Basically they agree that how can they give daily living allowance because I can't get round the house, up a step, in and out of bath, in and out of bed etc. But then say no mobility allowed as I can walk perfectly well. They said it's not logical. They were also shocked but not surprised at the actual lies and inaccuracies in my report.
So that's something to do tomorrow then. Set wheels in motion for tribunal.

To clarify, that should be 'walk perfectly well once outside'
(I can't)

RainbowZebrawarrior the world of PIP is just designed to outrage. In doing so I think they hope it will dissuade right thi king people from trying to wade through their lies and impenetrable decision making process. Hope all the effort today pays off. Good luck

@RainbowZebraWarrior 💜 good luck with your pip application.