The (not so old) Crocks Cafe -Part 2

ash4becks

really fedup last 24hours iam geting really down crying in pain , i cant get my pain under control i havent a clue what to do just nothing is working i rang the out of hours and nhs direct last nite parocetomal, naxpron, amitriptyline, i could take tramodol aswell but was told not to be alone if i do that them so thats out, i wish this rhemy appointment would come, iam going on the phone see if theres cancelations fingers crossed


and i have really hacked of my best mate now he isnt talking to me

body just looks like a ballon

Trialia

*hugs Ash carefully* If you can sleep, I'd recommend it. It's a break from the pain for a little while, at least.

Me, I'm angry. I've just been told that my local Ring & Ride service no longer does any cross-city journeys before 9.30, which leaves me in the nasty position of having to take a two-bus journey of nearly an hour during rush hour tomorrow, as I have a pain management clinic appointment at 9.15. That's going to hurt, because it only takes a tap on passing or a little too much leaning from someone to dislocate my shoulders, along with various smaller joints - and during rush hour, nobody cares if they bump into you or not. I'd take a taxi, but I can't afford it all that distance.

HellsGranny

I'm newly diagnosed with Fibro, although I knew I had it several years ago, but getting my GP to refer me to a Rheumatologist was like pulling teeth!

It's taken me from an active sportswoman to an almost housebound, shuffling wreck, especially in the last few months! I seem to be in a permanent flareup right now, the pain, stiffness, and exhaustion is beyond belief. I always had a high pain tolerance, but no more.

I don't know how to get relief, and I also don't know what help I can expect.

I can't bathe without help, can't reach my feet to cut my toenails, have to negotiate stairs sideways, have great difficulty cooking as hot pans and weak wrists don't mix. I wear walking boots to support my ankles, and I'm at my wit's end. I feel useless.

Breast_Cancer_Survivor

Well my short period of positivity came to an abrupt end yesterday & now i'm on that downward spiral from which I can't escape until i've hit the bottom & managed to slowly crawl back out of.

I'm sorry to hear you are in so much pain Ash, it makes me feel quilty complaining about feeling low when you are having to contend with all that.

Tralia that sucks about your transport, I hope you manage to get to your appointment without hurting yourself.

*Sigh* I hope tomorrow is more positive than today for all of us.

((Hugs everyone))

Indie_Kid

How do people remember to take their medication? I forgot yesterday; so had to shower, eat (but wasn't hungry) and then take my tablet. I'm going to have to do the same tonight too. I remember in the morning - it's the evening one I forget.

On a slightly more positive note:
The side effects (upset stomach and bruising) are slowly getting better now.

Trialia

HellsGranny wrote: »

I'm newly diagnosed with Fibro, although I knew I had it several years ago, but getting my GP to refer me to a Rheumatologist was like pulling teeth!

Welcome to the thread, whatever the circumstance that brings you here. Many of us 'crocks' have fibromyalgia, sometimes along with other stuff, so you're definitely not alone. I, too, had a struggle to get referred to anyone to figure out why I was in constant pain. Nobody listens to a teenager diagnosed with depression when she says she's hurting, believe me! *sigh*

It's taken me from an active sportswoman to an almost housebound, shuffling wreck, especially in the last few months! I seem to be in a permanent flareup right now, the pain, stiffness, and exhaustion is beyond belief. I always had a high pain tolerance, but no more.

I don't know how to get relief, and I also don't know what help I can expect.

It can do that. I used to climb - trees, walls, rocks - as a hobby (despite my subluxating ankles), and while I could just about manage it along with my hypermobility problems, FM kicked it completely in the head. I'm nearly housebound, too, at just 24 - during winter and damp weather I can't go out at all unless I'm heavily medicated, and when you live in the north of England there's plenty of damp! I thought for a while I was just in a permanent flare, but it turns out instead that my fibromyalgia is chronic, thanks to hypermobility Ehlers-Danlos syndrome setting it off constantly. Do you have any idea what caused yours? May be able to work out how likely it is you'll stop flaring soon... *careful hug*

As for help... not much, I'm afraid. Even from the doctors, as you seem to have found out. Are you in receipt of DLA? If not, fibromyalgia as bad as yours and mine tends to be automatic HRM if you are lucky enough to be in an area where they're reasonable about it. That may help you; HRM is a gateway entitlement to some other kinds of help, like bus passes and such.

I can't bathe without help, can't reach my feet to cut my toenails, have to negotiate stairs sideways, have great difficulty cooking as hot pans and weak wrists don't mix. I wear walking boots to support my ankles, and I'm at my wit's end. I feel useless.

*hugs you even more carefully* (hope you don't mind the liberty) Do you have anyone who can help you? I have similar problems, and I managed to get an adapted ground-floor flat with a wet room after a couple of years on the local council&housing association's shared waiting list. Whereabouts in the country are you?

I wear low-heeled ankle boots at minimum all the time, too (sometimes knee-high ones), for support purposes. You can find some quite pretty ones that do have decent support, if you're lucky. I can't cook; have to get ready meals as I struggle to concentrate and have fingers that like to dislocate.

Uselessness is a little harder to combat. If you can find your limits, it will help a bit.


BCS - thank you! Me, too. I'm not looking forward to it.
Sh - I have that problem. Only with me it's because I have no clearly defined sleeping pattern...

needing-help

sh1305 wrote: »

How do people remember to take their medication? I forgot yesterday; so had to shower, eat (but wasn't hungry) and then take my tablet. I'm going to have to do the same tonight too. I remember in the morning - it's the evening one I forget.

On a slightly more positive note:
The side effects (upset stomach and bruising) are slowly getting better now.

I am rubbish at remembering mine. One of my health problems causes poor short term memory and the medication for it causes poor short term memory so I'm stuffed really:rotfl:
I have one of those tablet boxes with the days and doses marked on and I set the alarms on my mobile. I'm still rubbish though:o

I'm glad your side effects are getting better now.

Trialia I really don't know how you cope, you are amazing.Although I hate what has happened to me at least I had until I was 38 before things went pear shaped.
I hope you are ok tomorrow.

Gentle hugs for the rest of you.

SingleSue

Well I have spent the day out at Pleasure Wood Hills and boy do I regret it now! I can barely walk a step (I can't walk 1 foot without pain let alone 50 metres!) and the painkillers are not helping at all.

Maybe I should start listening to the physio and taking her advice on no more all day events........

ash4becks

SingleSue wrote: »

Well I have spent the day out at Pleasure Wood Hills and boy do I regret it now! I can barely walk a step (I can't walk 1 foot without pain let alone 50 metres!) and the painkillers are not helping at all.

Maybe I should start listening to the physio and taking her advice on no more all day events........

you really sound like you need to rest up and have the kids running after you with a glass of wine in hand either that or use a stick with a chair attached and rest when you need it or chair for half the day , my painkillers arent working either so i no how you feel iam sick of the sight of my docs atm so i really dont want to go again but i dont feel the physio working at all

to boot my breathing is a mess and heart is deciding it wants to race for no good reason grrr

bsc and trialia cheers but has anyone tryed massage to relive pain or acupuncture x

ash4becks

needing-help wrote: »

I am rubbish at remembering mine. One of my health problems causes poor short term memory and the medication for it causes poor short term memory so I'm stuffed really:rotfl:
I have one of those tablet boxes with the days and doses marked on and I set the alarms on my mobile. I'm still rubbish though:o

I'm glad your side effects are getting better now.

Trialia I really don't know how you cope, you are amazing.Although I hate what has happened to me at least I had until I was 38 before things went pear shaped.
I hope you are ok tomorrow.

Gentle hugs for the rest of you.

short term memory what that, i forgot :rotfl: