Spoonies... friendly support for anyone with chronic pain & fatigue

[Grockle]

A lovely, supportive thread for those of us suffering with a range of illnesses & syndromes that cause chronic pain & fatigue, amongst many other things.

Lots of advice shared but also a place to chat & laugh with people who understand.

Spoon Theory Here

Old thread

Hello everybody, can I join your lovely thread please?

I've not been a member of MN for very long and have only posted a handful of times, but lurked quite a bit beforehand. I've only just come across this thread and thought I'd introduce myself in case you all wondered who this nutter was who suddenly posted out of nowhere!

I've has scoliosis since birth, a major surgery in my teens, though not to solve the curvature. I had no problems until about four years ago when the pain started again with a vengeance. I can't have any further surgery as it's too risky and the lumber curve appears to have fused. I was on a pain management course last year, parts of which help, saw a fab pain consultant who has sorted my meds out so they work better for me, but there's no miracle pill out there as you all know.

I had to give up the job that I loved in August (jumped just before pushed) so am taking some time out at home while I try to work out where I want to go with it next. Have a lovely supportive family, but money is a worry and today I'm having a bit of a self-indulgent guilt trip about it all. Not helped that I've had a pretty bad week pain-wise and just feel exhausted, but I do know that I'll have a better day soon, just not sure when. I don't tend to wallow in it, just feeling a bit flat today.

I have a few friends IRL with invisible illnesses, some from the PMP course I was on, but don't see them very much and they have problems of their own too. I've just posted the spoon theory link to them as one of things we said was how difficult it was to explain to others how we feel, so thank you very much for that.

I haven't read all the thread yet, so I'll pop off to read that now. Just wanted to say hello, that I look forward to chatting to you on here and I hope you're all having as good a day as is possible.

Red xxx

Kinky, so sorry the investigations didn't turn anything up. As awful as that sounds, anything would mean that you can start to at least try to move forward.

Misc, I have no words about how awful your work sound. And I'm so sorry to hear you're in hospital. I hope you're home very soon.

Owwww. Am not ok

Any news yet what it is? :(

Hi red, nice to meet you :)

Kinky, what were they looking for?x

Hello everyone, my name is Amanda and in a year our whole world has been turned upside down. I have fibromyalgia, degenerative disc disease and hypothyroidism which has lead to depression. Lost a lot of friends because a 'sick' friend is no fun! I used to go to Zumba and yoga classes, the gym and ran with a running club and finding it hard to accept this is my life now, I'm 34 with a 7 yr old, 17 yr old amazing daughter and a 15yr old son with complex SN and a fab fiancé. Just had rails put in (we live in a townhouse) OT coming next week to assess for a stairlift, I'm housebound if OH takes the car to work. Having a wet room fitted soon and finding it all very hard to get my head around. Sorry it's long winded, I do tend to waffle!

Hello my name is Amanda I'm 34 with 3 children ages 7,15 and 17, my 15yr old has complex SN. In a year our whole lives have been turned upside down, I used to do Zumba and yoga classes, go to the gym and run with a running club and then I got ill. I have fibromyalgia, degenerative discs, hypothyroidism and depression.
I'm finding it really hard to adjust and accept how I am, I have had rails put in a wet room will be done soon and my OT is coming Friday to see about a stairlift. Found out yesterday that my bladder is not working properly and will have to self catheterise until mobility gets so bad that they need to put a permanent catheter in place.
I can't believe this has all happened in a year, I get so angry and upset, I've lost a few friends because when you are sick you are not much fun and that has hurt so much as I've always been there for all my friends.
So sorry this is long winded, enjoy your weekend. x

Oh gosh my apologies, I thought my first post didn't go through.

Stomach. Still doing tests but possibly pancreatitis but no idea why as is mostly caused by gallstones or heavy drinking. Am in incredible pain, & digestive system has completely shut down. Have tubes everywhere & trying to avoid going to ICU as its fucking terrifying. They checking my aorta too and it may have got bigger.

I'll be honest. I am scared.

They can't get pain under control. Am on massive amounts of drugs and still in agony (that screaming crying agony that makes everyone in the ward hate you. Can't believe I've turned into this.

Really hard to write so ends here

Misc you are in my thoughts. It must be completely totally beyond awful. I so hope they can help you.

Oh, misc, hugs... can't do much more than send supportive thoughts.

Hi dizzy, it sucks to have things change so fast. I used to be super active, do capoeria, etc. :( And eek, self-cathertise! That sounds not very nice at all.

Got transferred in the night to another hospital who are more expert in pancreatitis.

Journey horrible and neck/ back / head suffering now.

Sorry am reading everyone's posts and feeling for u all. Just typing is hard and sets off alarms on all the sodding canulars (5 at last count but veins keep collapsing so it's a moveable feast. Bah humbug).

So sorry you are still unwell misc. Have they determined it's definitely pancreatitis now then?

Welcome dizzy I totally understand about the friends thing, unfortunately

Beyond The GP suggested they were looking to see if there was any nerve compression. They were basically testing my nerve reaction times. They used several nerves in my right foot and leg, and right hand. It fricking hurt

How are you doing misc?

Ouch, kinky.

I'm starting to worry about the MRI, very irrationally. I can't get out of my head my friend who 3 years ago was diagnosed with a gliablastoma in Sep and died the next June, and wonder what will happen if they find something like that. That's quite silly, as there is no reason to suspect that and it would be better to know anyway, as having an MRI won't cause it. But fear doesn't listen to reason... And, I'm getting a little worried about dementia. My grandmother and great grandmother had something -- never specifically diagnosed, but probably Alzheimer's. My cognitive function, especially memory, has decreased dramatically in the last year. It was brought home by a series of presentations I gave recently: last year, I forgot a common word during one of them, and I noticed and remarked on how uncomfortable that made me feel. This year I forgot 4-5 words during each one. And I'm actually a bit more rested and less stressed this year than I was the same time last year. Although I suppose knowing would be better than not, there too. Oh well, most likely it will just be more of nothing, and I shouldn't stress...

Struggling a bit today. In lots of pain and exhausted. I had to cancel one appointment for tomorrow in order to attend another more important one. It always seems a juggling act with all my medical appointments. Just wondering how everyone copes with all the medical stuff. At the moment it feels a bit like it is overtaking me life, but also feel that I need the help medically.

Misc, thinking of you, hope you are feeling better soon.

Murmuration, I would say try not to worry, but I know that is easier said than done. Sending hugs!!

Ds coming to visit NOW :)

How are things misc?

I have my last driving lesson this afternoon before my test on Monday. I'm so nervous. This would change our lives

Good luck w last lesson, amazing respect for taking the plunge!

I'm a bit better, last night was the first night the 'nurses' allowed me to have all the drugs I've been prescribed, so I didn't spend the night in screaming agony. First time simce i moved hospital on sunday night that is.

Couldn't write about it before as was in too much pain but it's been awful, on top of everything, I'd had a massive amount of unpleasantness around the pain relief the specialist pain team have got me on.

From thurs-sun was just all about my body & the difficulty treating it, then sunday night i was transferred hosp and has become all about the ignorance cruelty of nursing & surgical staff.

Thurs- sun: was pure hell as literally nothing worked, and the pain team (who span both hospitals), spent hours each day coming up w solutions (oramorph, iv morphine, intra muscular morph, fentanyl patient administered pump, ketamine...) and finally on Sunday morning they found a combination of massive doses of oxynom with iv paracetamol actually addressed the stomach pain, but left all the back/ neck/ head pain v much present from all the soft tissue damage done whilst spasming & tensing & writhing

Then Sunday - today: diff kind of hell
they've lied to me about what's been prescribed and how often, and told me they can't contact anyone who can check the dosage etc etc etc

Sorry I know the last half of that post went ranty & confused. So much happening & v hard to type not a good combo.

Good news is I've had input from some amazing anaesthetists & nurses in the pain team who have helped in a truly awful situation and also have really helpful advice for the future too, and are writing to my gp to ask them to refer me to their pain clinic. Bad news is getting other teams to follow the advice. Nursing teams withholding drugs which partially stopped when I reported it but still alot is 'misunderstood' or somehow becomes unprescribed in the middle of the night.

They doing it cos they are scared as I'm taking massive doses of strong drugs that would kill other people. But its been explained to them by multiple people on multiple occasions so its not hust that. They are also being rather arrogant and cruel, watching me scream (well whimper and moan, many times been reduced to an animal by this vicious thing I have it's been a v humiliating experience for me who prides herself on stoic never showing pain etc), and then to lie to that person and shout at them when you know you should be giving them pain relief as ordered by doctors, anaesthetists and sisters... Well, that takes a special type of person.

Then the other issue have been the surgical doctors themselves but that's another story.

Does anyone else have massive tolerance for opioids and other pain meds?

Hope you all are as well as can be

Misc just lending my support.

Stupid obstructive nurses can fuck the fuck off to the far side of fuck. Does that help?

Thinking of you MA. Hope you can see some light at the end of this awful tunnel.

How are things now misc? How is your DS coping?

Well, I sat my driving test for the first time yesterday afternoon, and......

I PASSED!!!

Two minors! (Though my instructor, who came with us, said one of them he wouldn't have counted but the other would have been a serious fault, and a fail from him! Oops!)

Totally over the moon though! Went out for the first time on my own yesterday afterwards. Felt great

Kinky, Well done at passing your test. Being able to drive - and having access to a car is so helpful when illness/ disability makes walking and carrying stuff such hard work. Sorry the test results leave you in limbo still, but good your nerves seem to be functioning normally.
I had the ignominy of falling flat on my face - well wrist and knees yesterday (poor balance and autistic son do not mix well at times), so have a few extra sore bits today.
Fuzz interesting that you wonder if your diagnosis is correct - I too have wondered. When I was first ill, the fatigue side was all encompassing, whilst the pain secondary -it was fatigue that stopped me doing things (like sitting up, getting out), pain just made it all harder. Now I have more energy and pain is the thing as often as not slowing me down, although I do still have both. I did an online questionnaire that gave me a very high probability of FMS. I wonder if it matters, since treatment is so limited?
Murmation, hope your MRI goes well. I have difficulties with word retrieval, and have no doubt my cognitive function, tires later in the day. I really only have a few better hours a day at best. Its a real nuisance at work. My colleagues seem to cope and the younger staff are helpful in supplying words as needed. Something happened at work last week that seriously made me wonder if I should retire completely (I only work one day a week so am not exactly working a lot!). Only a week ago I was wondering about taking on an extra day!! Its hard not to worry I know.
MiscA is there anything any of us can do to help? IIRC you have HMS or EDS (amongst other things), which I know can cause difficulty with analgesia. I vaguely recall that opiates are less effective for some people with HMS/EDS. I hope your anaesthetists are taking that into account. I hope you have lovely staff (if you are still in hospital) or family taking care of you now. I've heard nurses shout at distressed patients (whilst an in patient) and its shocking.

Thinking of you, misc. I wouldn't know if I'm resistant to opiates, as I can't take them at all -- I get massively ill. Once, they did give a large amount during a colonoscopy and reports are it did little for the pain, although it made me forget the whole experience, and I vomited for 3 days afterwards. This is how I found out I shouldn't take them, but even small amounts (they gave me the lowest cocodamil for my SPD) make me quite ill.

Hurray on passing your driving test, kinky!

MRI went okay. Wasn't nearly as scary as I'd feared I mostly kept my eyes closed, but the one time I peeked, I couldn't really tell what was going on because my eyesight is so poor everything was just a big blur. Could've been the ceiling, could've been the coil couldn't tell! Although I think the adrenaline of the experience really wore me out. Went to bed early last night, and struggling a lot at work today (which is bad, as I have loads to do this week).

Glad the MRI was not too taxing, Murmuration. Tests are always exhausting for me too!