Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Hi everyone, sorry I haven't posted on here for a while.

I have been to the GP again today but saw a rather nice new young Dr, he has changed my cocodamol to tramadol and we had a chat about amitriptyline and that a smaller dose is better for pain, a larger dose is antidepressant territory. So upping it from 20mg to 30mg probably isn't making much difference to my pain. I also asked him about pregabalin and gabapentin and he was willing to try in the future. I have been getting a really painful burning sensation in my right leg which he thought was coming from my back injury hence the tramadol. If that doesn't stop it then he said to go back and he can give me something else.

Love and lots of spoons to all xx

Hi all, I'm new to this thread. I've read a few times about the spoon theory and understood it but last wk I totally used all my spoons in one morning and paid for it the rest of the day!
I've got psoriaric arthritis and have my appointment with a rheumatologist next wk for X-rays, ultrasounds etc and omg I'm desperate for them to help me! My hands, feet and upper back/neck are so sore and painful it knocks me sick alot of the time. I also feel like noone understands how much it affects me. I'm sick of myself at the minute so not surprised others are too!
Fingers crossed they sort me out!

Welcome Icantstopeatinglol I LOVE your username!

Are you on any treatment for your arthritis yet? I have Rheumatoid, so not totally dissimilar and also feel like people are fed up of me, although I'm sure it's not really true.

I don't know if the weather affects you too but the humidity is making my swelling much worse. Ice packs have helped, although some people swear by heat.

Hi crashdoll, I'm only taking etodolac at the minute and it was helping loads to start off with but I feel like the arthritis is starting to creep back in so I'm terrified of forgetting to take it one night! Not sure I'd be able to move without it!
Heat does usually help me but not too much. I hate the cold so ice packs don't appeal to me but I really should try them on my feet.
I resorted to codeine a few nights back as I was in so much pain. It's scary how quickly it can get bad.
Yea treatments for rheumatoid and psoriatic arthritis look very similar. I think they're going to try me on methotrexate but I'm getting X-rays etc done first.
It's physically and emotionally draining :(

To be honest, I'm not surprised that the anti-inflammatories aren't doing much. Don't be afraid to take prescribed pain relief, it can be a very painful condition. Fingers crossed that methotrexate gets things under control for you. The early days are such a shock and whirlwind of emotions. Some people say feet in warm water then cool water helps but I didn't like it.

It's definately a shock, it came on slowly but now feels like its getting worse daily. Though some days are worse than others.
I feel like its messing with my menstrual cycle too? Does that sound odd?
I've just taken some codeine so hopefully I'll feel a little bit better for tonight :)

Hi all and welcome to newbies

Gallifrey sorry I forget if you've mentioned this already but have you had a scan for your back injury recently and do you know what injury it is? The burning sensation is exactly what DH felt, he couldn't bear anything touching his leg, could barely tolerate trousers. It didn't happen when he first got injured, but was because his prolapse had basically worsened and both the sciatic and femoral nerve were trapped by the disc. The leg pain was actually much worse than the back pain.

Smiling - liver damage is not something I'd expected them to diagnose you with! Are they saying this explains all your symptoms, ie it's not CFS and/or gynae issues as well? (sorry, memory like a sieve lately). Anyway I hope Wednesday goes well.

I am very frustrated at the moment, seems like every time I feel settled I get ill again, it hasn't got serious this time but I am just so pissed off that I am missing work again. I keep missing stuff at school too, DH can't go as he's training 3x a week now, and I hate letting DCs down. If I could just go to sleep for the next three weeks I would be very happy.

Nan still in hospital, managed quite well on chemo but is very weak and they aren't letting her home, they will send her to a nursing home if she doesn't manage to walk soon :(

the last time I had an mri was in 2010, I have a copy of that scan and the report and it is herniated discs at l5 and s1 also some higher up and some stenosis in my neck too. I have decided to go back to the doctor again and try and get some answers rather than just throw painkillers at me.

Hi fuzz sorry about your nan

The gynea issues are separate and seem to have been sorted by the mirena coil for now.

I think it came as a shock to everyone including the drs, I had a kidney infection that wouldn't clear so was sent for a scan, my kidneys are fine but my liver is very enlarged, more tests have shown its not functioning properly, I'm now waiting to find out how damaged it is and what we can do next.

Apparently it explains the tiredness, memory lapses, random swelling, pain in joints and about 99% of my symptoms.

Hi ladies, apologies for the quick post, I need some help or rather a crash course in my employment rights, I've got a meeting with HR (boss just told me) and I'm not 100% sure what its about.

I've asked to reduce my hours at work and have mentioned how unhappy I am & that I bullied etc so it could be either of those things or it could be to do with my time off sick.

Any websites or resources or advice would be appreciated.

Hi ladies, apologies for the quick post, I need some help or rather a crash course in my employment rights, I've got a meeting with HR (boss just told me) and I'm not 100% sure what its about.

I've asked to reduce my hours at work and have mentioned how unhappy I am & that I bullied etc so it could be either of those things or it could be to do with my time off sick.

Any websites or resources or advice would be appreciated.

Sorry i haven't been on for a while...uber shitty stuff to deal with irl.
Off to gp tomorrow finally about me...what do I say?
Exhaustion - tick
Fatigue - tick
Muscle pain- tick
Mood swings - tick
Gynae issues - tick
And now introducing....
Heart problems - tick
What on earth do I ask for? Right now I am desperate.i will take may meds, do anything.
I don't want to feel like this anymore :(

Neriberi I can't help but it might be worth looking at your employers equality and diversity policy if it has one. You have a right to be safe (as far as is practical) at work. You also have rights not to be discriminated at work because of age/ gender/ religion/disability/ sexuality/pregnancy and 3 others I have forgotten (we have compulsory training where I work and honest I was awake!). I know that disability is a grounds for requesting reduced hours since I did that - but due to my child's disability not mine. They have a duty to consider your request but no more than that. They can duly consider and decide part time hours would not work for them.
I hope the meeting is to discuss your request for shorter hours. Can you ask what specifically the meeting is about? If you are being bullied about your health issues and needing time off then perhaps you need the support of occupational health if you have that where you work.
Fuzz glad you are not getting worse but I understand your frustration> I have the beginnings of a ?cold too. Hope you shrug this one offquicker than usual.
Smiling so sorry to hear you liver is struggling. I hope it is something they can stabilise and get you feeling better once they know the whys and wherefores. At least you have a better idea of what is making you ill.
Badvoc it does sound time to see your GP. What heart troubles are you having?

Badvoc that sounds like one hell of a load to deal with :(

Neri - not really up on the law side (maybe before or after your meeting you could post a thread on the employment issues board?) but I know that if you have a disability, your employer has to consider 'Reasonable Adjustments'. For me, that has been reduction in hours (obviously pay changes accordingly), a chair for tasks that usually involve standing, and never having to unpack deliveries on our busiest day. So they help me, but they do not have a huge impact on the service we provide IYSWIM.

I double posted! Sorry. Thank you Fuzz & Magso.

I've had a quick look at the employment and disability acts on direct gov and printed some info off. I'm going to ask my boss tomorrow if I need anything for the meeting and just see what happens. I work for a very odd company with a one rule for one and another rule for everyone else attitude, the only good thing about the meeting is a proper HR person is involved.

Badvoc, I have heart problems, I have left ventricular hypertrophy (enlarged left ventricle) and some of the veins and arteries that join my heart to the rest of me are round the wrong way so nothing really works properly, apparently if I ever needed a pace marker I would be stuffed because there isn't anywhere for it to go!

Neri...Blimey that sounds horrendous! I just have AF. Scary though.
Could you ask someone to go with you for moral support/take notes?
I simp,y don't know what to say to the gp...where do I start?

neri How did the meeting go? Have you had an occupational health input? Hope it went ok!

Woken up in pain and very low on spoons. I have a busy day at work and should be leaving in 7 minutes instead of sitting here. I just cannot summon the energy to move.

My meeting is on Friday, it got changed, I did manage to glean some info out of my boss as to the content of the meeting and its to do with my hours. Will keep you posted!

Well, I have been out on HRT! At the ripe old age of 40 :)
If it doesn't help she will be going down the lupus route :(
So I really hope it helps!

Friend "I'm sorry you had to cancel dinner tonight. I wish you back."
Me "Thank you. I'm sorry, next week?!"

I can't type - it was meant to say WISH YOU BETTER.

Ah crashdoll, sorry you're in pain. It's hard to explain to people that you're not going to ever be 'ok' but I think most people just don't know what to say to be honest.
I saw a friend tonight out running while I was driving home with my 2dc and I suddenly thought 'I'm never going to do that again!' Although we never know what future medications might do! I may get feet transplants soon lol!
Big hugs

BADVOC, how long have you had AF> are you on bisoprolol, and please tell me you are on or at least have been considered for warfarin...AF can be one of the most debilitating illness I have ever managed....

Neri hope meeting goes ok..

GrOCKLE IF YOUR LURKING hugs

HOPE ALL YOU PARENTS ARE GEARING UP FOR SCHOOL HOLS........YIKES!!!

TBH belle I'm really looking forward to the school holidays. These last few weeks are just feckin ridiculous, all sorts of extra things at school as well as DH's college classes, revision and exams.

Trying to work out how the hell I'm going to manage sports day tomorrow. Bad enough walking there/back and standing around, I also have to watch DS who is a complete nightmare in that kind of setting, and it seems his eczema has got infected again, it always happens after he gets a bug. Poor bunny.

Hugs n spoons to all. x