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Spoons! Support for those with chronic pain & fatiguing illnesses

(932 Posts)
Grockle Wed 03-Apr-13 13:48:24

Spoon Theory here

ArbitraryUsername Thu 04-Apr-13 09:50:37

Oh, getting verification of the modules you've completed would be no problem. It would be up to the university you wanted to attend to decide whether or not to accept them towards the particular degree you wanted to do. Mostly that decision would be based on how closely they mirrored the content of the compulsory modules in the degree (although anythng would count in place of open choice modules).

The 'restricted status' only applies to the OU. It's an internal policy. You'd be eligible for normal student funding like everyone else in the country as you don't already have a degree. It would be loans but you may be entitled to bursaries etc because of your disabilities and low family income. The loans aren't necessarily as scary as they sound, as you'd have to be earning far more than you do now to have to pay them back. You can get funding for PT study now too, so that might be a route to explore given your health issues. Universities are much more disability friendly now and can provide all sorts of support (and help you access funding for this).

Grockle: I have no idea if I've been tested for lupus. Probably not. They took loads of bloods at rheumatology (they always take bloods) but I think they were testing for the stuff that indicates ankylosing spondylitis. Maybe I'll ask about lupus. The rash is more subtle than in most of the photos online, but it is annoying (and more annoyingly the rosy cheeked look makes me look far healthier than I am, so long as you ignore my eyes). I certainly have symptoms (but so many AI conditions share symptoms): plenty of fatigue, joint pain (but no damage), rashes, muscle aches, fevers, memory and thinking issues, chest pain/difficulty breathing (but no wheezing), mouth ulcers, some dizziness, etc. So it might be worth checking out.

CouthySaysEatChoccyEggs Thu 04-Apr-13 09:52:15

Can I gatecrash. Slowly?

(Took DC's to London yesterday. Alone. Am paying for it now. Used up all week's spoons doing so...)

CouthySaysEatChoccyEggs Thu 04-Apr-13 09:58:33

Epilepsy, Hypermobility and arthritis (type as yet unconfirmed but it's in almost every joint).

Am on stonking amounts of Gabapentin for the epilepsy (1200mg/day), which also dulls nerve pain, so god knows how much MORE pain I'd be in if I didn't take that.

And it IS the tiredness that is worst.

I tried to describe it to my Ex (he helps with the DC's when I'm bad), and all I could come up with was that it was like every cell in my body had been torn apart from each other, and then put back together badly and wrongly.

CouthySaysEatChoccyEggs Thu 04-Apr-13 09:59:43

An now on naproxen from the GP for the pain, but it doesn't take away the pain, merely dulls it.

CouthySaysEatChoccyEggs Thu 04-Apr-13 10:00:37

God, the cold!

ArbitraryUsername Thu 04-Apr-13 10:02:18

Hi couthy. Sorry you're out of spoons. Did you have a nice time with the DC in London?

Badvoc Thu 04-Apr-13 10:12:28

I found naproxen made me very nauseous couthy.
I am also paying for yesterday's trip with the dc!
It's so sad that we can't just plan things like "normal" people isn't it?
We always have to do damage limitation and it makes me sad
I manage with paracetamol, ibuprofen and co codamol.
For now.

Badvoc Thu 04-Apr-13 10:13:06

My mum just rang.
She wants me to take her to ikea.
It's soooo cold!

Fab41 Thu 04-Apr-13 10:13:19

Was planning a day in London at a craft show today but DS had drama over going to his football club, so I cancelled. In the end he went, thank god, so I can snuggle up on the sofa with a hot water bottle. Seem to have developed a streaming cold as well so feeling sorry for myself.

Even though I would have been wiped out by London, I am gutted not to be there.

About pain meds, I don't normally take anything after too many side effects in the past, and use the pain as a signal to pace myself and rest. However, I fell downstairs and cracked a rib a month ago and have been on naproxen since. It does seem to help some pains but I think I have been overdoing life as a result. I can feel a crash coming up.

CouthySaysEatChoccyEggs Thu 04-Apr-13 10:19:39

I took some naproxen last night before I fell asleep, as the pain was keeping me awake.

Only problem with that is that I didn't wake at sparrows fart when DS3 did, and he's trashed our bedroom - an entire box of tissues pulled out over the floor, books thrown off bookshelf, clothes pulled out of drawers, craft stuff pulled out of drawers.

So now I know I need to tidy that up. Which I CBA to do, as I actually need to go and buy food. Which I also CBA to do...

ArbitraryUsername Thu 04-Apr-13 10:19:52

I take naproxen, paracetamol and acupan. And I have emergency tramadol for those days when vomiting and being out of it feels preferable to pain, which don't come often. I have to take omeprazole with the naproxen or my stomach protests.

CouthySaysEatChoccyEggs Thu 04-Apr-13 10:22:01

And even when I brought DS3 downstairs, I STILL nodded off. Good job the stairgates make my house like Fort Knox.

Naproxen knocks me out, so I try to manage on paracetamol, ibuprofen & co-codamol as much as poss, but co-codamol does the same thing to me anyway.

Also, does anyone find their pain and tiredness gets worse when they are about to have a period? Mine shoots through the roof then.

CouthySaysEatChoccyEggs Thu 04-Apr-13 10:24:48

Arb - your DH sounds just like my Ex. If I have to hear once more how hard my illnesses are for HIM to cope with, I may be forced to use my frying pan in a way it wasn't intended to be used...

I knew that doing London yesterday would mean 3-4 days of feeling like shit, but I hadn't done ANYTHING with the DC's for 3 years (that sounds awful!) because of it, so I had to do it.

And they DID all enjoy it.

Fab41 Thu 04-Apr-13 10:31:20

Agree couthy, sometimes you just have to grit your teeth to get through something with the dcs. I went to a gig on Saturday night with DH for the firs time in years. I was in agony by the end, standing for four hours on a stone floor, but we had a great time together, it was worth the pain (which lasted till Weds)

I take omeprazole too, I have got emergency tramadol, but it really knocks me out and I feel hungover and dizzy the next day. If I take cocodamol, I have to take lactulose with it for constipation. Joys. Our GP surgery only has locums just now and I can't be bothered to go in and give my life story again, so will stick with what I have.

I love my hot water bottle.

gallifrey Thu 04-Apr-13 10:38:36

Hi everyone, is it ok to join in?

I have fibro, and back and neck problems (stenosis) had GBS 3 years ago which I haven't really fully recovered from.

gallifrey Thu 04-Apr-13 11:09:42

I am also on naproxen can't say it really makes a difference although I have nearly run out so I might see what happens if I don't take it!
Also on cocodamol 30/500 and amitriptyline.
Still in a massive amount of pain. I went to a farm Park on Tuesday and still paying for it now.

Grockle Thu 04-Apr-13 11:11:49

Welcome gallifrey & Couthy. Last time we went to London, we stayed over so I could go back to the hotel at lunchtime & sleep for a couple of hours. It was still exhausting though.

My heated throw arrived this morning. It is heavenly!

What do people take if Tramadol doesn't help with pain?

fuzzpig Thu 04-Apr-13 11:14:50

Hello all, welcome to new people smile <hands out cake>

You are very brave for going to London Couthy, I'm really glad your DCs enjoyed it though. What did you do there?

I haven't been to London for fun for a while, I miss it, especially when I hear about art exhibits etc that I really want to see. Yes, it really sucks not to be doing all the trips we want to. It doesn't help that we live in a wealthy area and most of DD's friends are always going on holidays, clubs and trips etc. Not that DD minds yet (she's only 5 and not got to the peer pressure stage yet thankfully!) but it really shows up how little we do. A trip to the park, a cinema visit and a game of bowling are as exciting as it gets this Easter (DH doing all of them) and a friend is visiting later which will be good. They enjoy it all but I hate feeling like I'm not providing all the experiences I want to, IYSWIM. I had a dream of what my DCs childhood would look like, and this ain't it sad

Sorry for rant, first world problem etc etc blush

Arb, thanks so much for all that info, it's made me feel a bit more relaxed. I know I'm not ready for study yet but I don't want to give up on it all together. If I end up not working (which is looking increasingly likely TBH) I will look into it.

ArbitraryUsername Thu 04-Apr-13 11:18:41

If you can tolerate tramadol but it isn't giving pain relief, there are stronger painkillers they can prescribe. Oramorph for example. I think you become more tolerant to tramadol over time so it's less effective. That's a bit of a problem with having to rely on painkillers generally. sad

Waves to the new people. grin

ArbitraryUsername Thu 04-Apr-13 11:25:00

You are providing a good childhood fuzz. Good childhoods are measured in love, care and attention not foreign holidays and expensive days out. Trips to the park, cinema and bowling all figure highly on most DC's lists of things they like to do. Even at much older than 5. DS1's dad (who has more money than sense) takes him on all kinds of fancy holidays to places more interesting than anywhere I ever go, but he's just as happy with a trip to the cinema and a bag of pick and mix. Or a free swim in the local swimming pool during the time they get the inflatables out.

I can count on one hand the number of times I've ever been in London. Even when I lived in SE England, I almost never went to London. It always seemed such a faff. I think I must be the provincial type!

Grockle Thu 04-Apr-13 11:27:34

Thanks Arbitrary, I didn't know that. I take Tramadol still but it does nothing when the pain is bad. I can tolerate it no problem but it doesn't help so is a bit pointless. I don't know whether to see my GP or rheumatologist.

Fuzz, teaching is an amazing job but one that I can no longer do properly. I am still doing it but badly. If I had an alternative, I'd give up my career instantly. I only ever wanted to teach & I love it but the pain & exhaustion it causes now I am ill makes it more or less impossible. If I didn't have amazing TAs to support me, I would have had to stop by now. Also, it's really not family friendly. Yes, you get the school holidays but you still have to work during them & the amount of work that needs to be done outside of school hours is ridiculous. When I was well, I would 50 - 60+ hours a week.

LackaDAISYcal Thu 04-Apr-13 11:35:29

I take plaquenil for lupus symptoms, diclofenac for inflammation (generally one a day keeps things on an even keel) plus something to protect my stomach lining, and am on sertraline as well. Started off on this for PND, but then the lupus thing happened and I fall apart if I come off them. I also have co-codamol if required and 20mg amitryptaline which does help enormously with pain, but I can't take it on the nights I work as I need to take it at 7pm and go to bed or else it wipes me out the next day.

I've never "tested positive" for lupus as there is no AntiD or Anti Sm in my bloods, but these don't preclude lupus if there are other markers and symptoms. As I'm symptomatic with a few other things, they treat it as mixed connective tissue disorder. I've had problems with inflammation round my rib cartiledge (costocondritis?) and in the membranes round my femur on and off for years and a mysterious rash on my face that was put down to viral herpes initially, then assumed to be dermatitis herpetiformes when I was dxd with coeliac disease and now they think it is probalby lupus. It involves lots of tiny, incredibly itchy fluid filled blisters than can come up and dissapear in 24 hours or last for weeks. MAkes me look delughtful I can tell you! Then my feet started playing up causing problems with my knees and last time I was at the clinic to see the podiatrist, it said lupus on my notes and he mentioned that the toe joint inflammation that is causing my problems is typcial of scleroderma which gfoes hand in hand with lupus and MCTD. I have given up just wishing for a label and accepting that as long as I'm getting treatment and feeling better then that is OK. And if things flare up, I can get a depomedrol steroid injection which really does give me wings grin

When I first saw my rheumy, he explained that all the rheumy conditions are related and people are generally somewhere on a sliding scale with systemic conditions like RA, SLE and systemic scleroderma at one end and things like fibro, skin only conditions like discoid lupus and crest syndrome at the other but that where they are on that scale can change over time. And also that bloods can take a while to show what other symptoms are telling them already and they will always treat the symptoms. I'm under the team in Leeds and they seem to have a fairly holistic approach to it all, but I know that this is unusual from what I've read on various forums about people trying to get a dx.

It sucks though, not having a definitive dx.

ArbitraryUsername Thu 04-Apr-13 11:40:17

You might need a referral to the pain clinic to get stronger painkillers, and better pain management generally. I'd imagine GPs wouldn't be keen to prescribe them unless a consultant of some sort had recommended it as there are presumably significant downsides. The rheumy might prescribe something stronger though, as they see people with horrible pain every day.

gallifrey Thu 04-Apr-13 12:55:22

The last time I saw my rheumatologist he said something about my blood markers, I am ana positive which is one of the signs of SLE but when I asked my GP he wasn't that bothered.

I have been reading about Gabapentin which a lot of people with fibro take, I was thinking of asking my GP about going on that as what I take at the moment doesn't make any difference.

belleshell Thu 04-Apr-13 15:33:18

Hi everyone new and old flowers, its so sad to hear how everyone is struggling, yet in RL people think we are jsut a bit tired!!

The pain relief issue is interesting, i take amitriptyline 25mg each night then manage on co-codamol (30/500) if im not working or driving, if i am working or driving it tends to be paracetamol and brufen.

the trick with pain relief is to take it on a regular basis, ie every 6 hours, if you take it infrequently pain peaks and troughs, rather than evens out. co-codamol and tramadol are fairly strong and over a long period of time we become used it it therefore needing larger doses, it is therefore better to start with paracetamol on a regular basis eg every 4 hours ( no more than 8 in 24 hours) if that doesnt control pain then add in brufen ( if you can take it and arent asthmatic) i would then alternate 2 paracetamol with 400mg of brufen every 3 hours.... if this doesnt help then swap paracetaomol for co-codamol (starting with a lowish dose of 8/500) and continue with brufen (alternating every 3 hours), increase strength of co-codamol up to strongest 30/500. It pain persists then switch co-codamol for tramadol, but still take with brufen every 3 hours.

i hope this all makes sense, i think sometimes we are given all these tablets with no real explanation on how to take them effectively for chronic pain, if its taken on a regular basis, you can move up pain relief scale, then once settled move back down the scale, so that we are always taking the least amount of pain relief that controls pain without the horrible side effects....

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