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

(188 Posts)
Grockle Thu 10-Apr-14 21:47:55

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

Grockle Wed 30-Apr-14 11:13:19

Hello

I've been quite ill for 5 weeks now - GP has just signed me off for another 2 weeks and will keep doing so as needed. But this is the beginning of the end for me at work now - I;ve had so much time off, it's dismissal time sad

I need to reapply for PIP (I get DLA low rate care) but don't know where to start- any ideas? Dr also suggested contacting social services but I'm a bit wary of that. Has anyone had them involved?

Welcome, Face. I'm so glad the scooter helped. I'm debating buying one now but I feel very silly. I can't manage my manual wheelchair.

Yes, miscellaneous, life gets in the way of pacing.

Glad your pain has been better, Korma

Beyond, sorry methotrexate makes you so ill.. I can't tell about DS's knees, I'm afraid.

MN campaign re invisible illnesses is a very good idea.
So glad the mobility scooter helped

magso Wed 30-Apr-14 15:25:52

Sorry you are having a bad time Grockle, and that it may lead to dismissal. Do you have a union that could help you? I don't know anything that could help but as you are sick there should be some sort of protection from dismissal. Bumping for you.

murmuration Wed 30-Apr-14 15:47:13

Sorry things aren't going well, grockle sad I'm afraid this is all beyond my experience, so I can't offer anything other than virtual support.

Yes, I also find life gets in the way of pacing massively. I eventually decided not to go out last weekend, but then it gets to feel like I have no life. Can you still call someone a friend if you haven't seen each other in over a year? I hope so, otherwise I have almost no friends...

fuzzpig Wed 30-Apr-14 15:48:57

Hi all!

Dizzy day today. Needless to say having POTS I am dizzy every morning but normally I can sort of walk it off and by the time I've done the school run I feel better. Not today though. Work was not easy hmm feel like I achieved bugger all, every time I reached for a low shelf (quite a lot due to the tasks I had) I felt worse. My colleague - whose DD was also recently dxd with POTS - offered to swap with me but I said no. We have to get permission from senior staff to do that though and I hate drawing attention to myself in that way sad

DH is having a very very rare evening out (going to his eldest's house to watch the football) and I am really dreading this evening as there's loads to do. Argh.

Sorry for rant blush

fuzzpig Wed 30-Apr-14 15:57:50

Argh grockle that sounds horrible sad is there a part of you that's relieved at the prospect of stopping work? It may well be best although it's scary.

Agree about a union, also make sure you get all their relevant policies to read (or ask someone else to read for you) so you know your rights.

Grockle Wed 30-Apr-14 16:07:18

Thank you. I have had support from my union in the past. I will make sure they know I'm off again.

I just ordered my own mobility scooter shock

Thank you for your support. I missed this thread when I went AWOL!

magso Wed 30-Apr-14 23:26:31

Ooh exciting getting a mobility scooter! Can you choose the colour? I've been tempted to try one out a couple of times in a shopping centre near by, but they said only registered disabled could hire one.

BeyondTheVirtualActivist Thu 01-May-14 14:54:51
CFSKate Thu 01-May-14 19:53:58

video about CBT and ME/CFS I haven't been able to watch more than a couple of minutes but I hear it's good.

candycoatedwaterdrops Thu 01-May-14 20:01:44

magos I am shock. There is no such thing as 'registered disabled' anymore, well there is....but you do not have to register to be legally considered disabled. I refuse to register on principle.

Ahh, i forgot cfskate is queen of the links grin

I am "registered", but as candy said, its not essential. My anxiety likes to try to remind me every so often how easily i could be rounded up now I'm "in the system".

MiscellaneousAssortment Thu 01-May-14 20:24:33

Scooters are great smile

I have experience of adult ss involvement if you want to ask me anything is be happy to help flowers

I'm knackered. And moving house tomorrow sad its going to be hideous. I don't have family support and no trained up carers yet, so I can't just hand some of it over to someone and expect it to go right. I have professional movers who are packing and moving everything, but won't be unpacking so at the end of tomorrow I'll have a place sky high with boxes to unpack.

I find it painful to watch/ have to stand by and know people are making work for me by their actions and being unable to stop it. Its not their fault, but its horrible all the same. Just things like packing stuff in the wrong box / mis-labeling a box / losing things / putting things in front of stuff that i need like my crutches etc, all stuff that just happens unless you stand over someone like a dictator. And then I could cry that I know it will become a problem I'll have to deal with over the next few weeks and I haven't got the physical ability to deal with it, or the physical ability to stop it happening in the first place.

Sorry for whining, it's just so f*cking hard and I find it impossible to keep equanimity about it all. I wish I could be more relaxed about it and content or accepting, but when you physically are so vulnerable and know you are having to do everything that is bad for you just to get by... I find it hard to be ok with it.

magso Thu 01-May-14 23:04:20

Miscellaneous best wishes for a relatively smooth and hassle free move, tomorrow. I cannot imagine moving.
OJ, how are you getting on? You have had an absolutely horrible time. I am afraid I can't help with the medical decisions. It took me a long time to recover from respiratory failure etc and I was not as ill as you. I can only say take life as gently as you can which I know is not very helpful!

2kidsintow Thu 01-May-14 23:14:26

Hi. Wondered where the chronic pain thread I was on (briefly) before had gone, found you!

I've got TN, so it's just (just!) a pain condition. Horrendous when not controlled. I'm on gabapentin to control it and it's doing a wonderful job of keeping on top of 95% of the pain. Only a few niggles when I'm due my next dose etc.

I have a bit of a twitch, hopefully just a side effect of the meds.

I've had my MRI results and have been told they have seen an artery pressing on the nerve, so a likely cause for the pain. They also report 'several high signal areas in the white matter on both sides of my brain' so I'm now being sent in to Walton for a day for blood tests and a lumbar puncture (eek) to rule out MS among other things.

NotCitrus Thu 01-May-14 23:59:19

Hello, I've not posted since the start of the previous thread. Stuff happened over the last couple months and I finally sent in a PIP application and best friend sat with me writing down all the stuff for the second form(she happens to be a disability adviser with similar more severe medical conditions to me).

I'm doing an exercise course at the hospital atm which Ithink is helping my overall stamina but last session managed to strain the joints that were a problem in the first place. I'm seeing a pain clinic next week to see if they have any ideas about how to relax some muscles, seeing as the rheumatologist has run out of them. I could really do without being an 'interesting' case!

MiscellaneousAssortment Fri 02-May-14 02:12:47

Thanks, I'm a bit calmer now smile it's the pain + frustration + panic that gets me every time.

I have this weird thing of not knowing when I'm in pain until afterwards/ I completely break down, does anyone else have this or am I totally odd?

I am learning to recognise other signals like rapid heart rate, sweating, talking faster, getting cross, and trying to speed everything up so I can get out of the situation asap. But then looking back, even 30 mins after I know I was in paralysing agony, and can't work out how I missed it

Not the elephant in the room, more like the elephant charging straight for me and trampling me underfoot, whilst I can't work out why it's do confounded hard to keep the conversation going. Crazily British - the empire was founded on fools like me smile

I think it's because I have been in pain ever since birth / early childhood but wasn't 'allowed' to be, and was punished if I did try and put it into words, so I didn't learn to link up my physical sensations with what people call pain. Then it became a coping mechanism, deny deny deny, ignore ignore ignore.

It sounds nuts doesn't it?

FaceDirectionOfTravel Fri 02-May-14 09:33:35

Misc I used to have this with hunger and anger. Couldn't. tell I was angry until I snapped, couldn't tell I was hungry til I was very hungry and quite cross! CBT techniques helped. I have to check in with myself, rate my feelings on a scale of 1 to 10, learn to take steps at 6 or 7 rather than waiting til 10.

I have issues with pain misc. Its either "maybe it hurts? Dunno, but I'm fine" or "oh my god I am dying, please kill me". Weird perceptions of pain is on the list of things that are pointing me towards thinking I'm undiagnosed ASD. For eg, labour did not hurt. It was hugely uncomfortable, but there was no pain. But then I was another one not 'allowed' to be ill, so could also be related to that smile

2kids, is TN similar-ish to TMJD? Its late (haha, its 9pm!) and google is spinning me out, but I spotted TMJD mentioned on a page about TN?

fuzzpig Sun 04-May-14 22:09:43

Ugh I have a cold. Trying to do what I can to keep it as low level as possible (antiseptic gargle etc) but the muscle pain set in earlier. It's been a while (I'm lucky I can say that really)

Hi all

candy I've just took my second shot of humira last Sunday. Should have been Friday but I totally freaked out, had a major panic attack, followed by an asthma attack and was a wreck for a few days. Really had to psyche myself up for it Sunday. It isn't terrible is it ? I do my stomach, I don't have much fat on my legs, they are very muscular so I don't fancy trying to inject them. I do however have loads angry of fat on my stomach so that's where I inject. Oh and I can't do it myself, no matter how much I try I can't get my finger to press that button I have to get dh to do it.

I must say I felt great after the first injection but nothing to note after the second, no change in either direction. I have also informed my nurse and consultant that I've stopped my methotrexate. They weren't too pleased but it was making me extremely ill and I have enough to contend with.

I just really hope the humira works because quite frankly I am terrified of my future. I've also upped my amitriptyline and am managing to get some sleep for the first time in 2 years and that is helping.

I'm still utterly exhausted and in quite a bit of pain but I have my head round it now so am coping much better.

How are you ? And everyone else ?

grockle I'm sorry to hear of the work situation :-(
Afraid I can't offer any advice but (((hugs)))

murmuration Mon 05-May-14 03:17:08

Welcome back, 2kids and notcitrus, I remember you!

Miscellaneous, for me, it's that I seem to forget I can do something about discomfort or pain. For example, I'll be sitting in the house in winter all cold, and it never occurs to me to either put on a sweater or turn up the heat. If I'm in pain, it almost never occurs to me to take pain medication. Someone has to remind me. DH has a weird thing where he feels he doesn't deserve to feel better, so doesn't take meds, but for me I honestly don't even think about the fact that I can. I don't quite know why this is.

Sorry to hear about your cold fuzz. I'm currently fighting one off. Had a bad sore throat on Wed night, and have been skirting the edges of it ever since. I'm really scared it's going to break through.

I've also come to the realisation that what I call 'fighting off a cold' might actually be what other people call 'having a cold'. I never understood how people went into work, etc, and yet said they had a cold. When I have a cold (to my definition), I can barely get out of bed and I'll be that ill for at least a week or more, and it will take weeks more to recover. Yet other people will say blithely, "Oh, I've got a little cold", seem for all the world reasonably normal to me (not constantly hacking away at a cough or blowing their nose every 3 mins, for example -- sometimes I won't even see one such event in the hour meeting I spend with them), be able to work, and report they are better a few days later. So I've usually felt quite like a wimp, since I could never be at work and do the stuff people do when I have a cold. But it's occurred to me that how they appear is a bit more like me 'fighting' a cold -- I'll have a few scattered symptoms but they haven't 'broken through' to be constant and completely knock me out.

NotCitrus Mon 05-May-14 04:55:38

Hope the move went OK misc. Pain is such an odd concept - some pain I'm quite happy with, other types of pain are pure nightmare, and doesn't relate to anyone else's experience. I remember when the hospital cocked up getting me codeine for my SPD after my first birth, and every time I asked where it was, they started askingabout my vagina. Eventually I screamed at MrNC, " why does everyone keep asking about my bloody vagina?" He pointed out I'd given birth through it less than 24 hours ago.
"But that's all fine now! It's my pelvis that hurts!" Cue boggling nurses actually getting me codeine within the hour.
murmur are you being kept awake by pain too?

I've just realised that I've been writing my congestion of as 'a cold coming' for weeks, so think its actually sinusitis. Used to suffer a lot with it, but normally more pain. Wonder if painkillers for artritis have made me not notice the pain? Does anyone happen to know if I can use nasal sprays etc on methotrexate?

Oh go beyond, stop googling! shock

"Acute episodes of sinusitis can also result from fungal invasion. These infections are typically seen in patients with diabetes or other immune deficiencies (such as AIDS or transplant patients on immunosuppressive anti-rejection medications) and can be life threatening"

2kidsintow Mon 05-May-14 11:50:29

Beyond , TN and TMJ can both cause nasty face pain, so they can be confused in the early stages when they are trying to work out what the hell is going on. smile I initially went to the dentists and even had a tooth out thinking it was a dental issue before realising that it wasn't my teeth.

Yesterday was an annoying day. Despite my medication keeping me almost pain free, I had lots of aches and niggles. Out for a walk in the lovely fresh air - then my face gets cold and I keep having to hold my face to warm it up to stop the ache.

Could be worse though! Before the medication it was like having labour in my face and it would stop me dead in my tracks. I couldn't move or speak and sometimes even breathe until the pain passed.

Hurrah for modern medication

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