Spooning into summer - life 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.

theory here www.butyoudontlooksick.com/wpress/articles/written-by-christine/the-spoon-theory/

Thanks everyone.

Feel disgusting. I've got a huge backlog of work, but I'm really struggling this evening so I think I need to get an early night in the hope that I will feel more able to tackle some of it. I've only just stopped working for this evening, but could do with doing another couple of hours. There is never enough time in the day, and certainly not time to be ill .

Hope you got your early night, Kinky. And plenty of rest.

hi all, I've only read the first few posts and the spoon theory (love the spoon theory)

Hope I can join in
I've just been diagnosed with CFS today

the gp says I have had it for years and years and cant understand why nobody has diagnosed me

feeling a little wobbly but also relieved
maybe I'm not just crap

Sorry but really need to winge.

Diagnosed with FMS over 10 years ago. Tried trigger point injections, lignocaine infusions, tramadol, morphine, amitryptyline, gapapentin, baclofen and much more. Currently on co-codamol, venlafaxine (for depression) and tegretol.

Having really bad flare up, to be honest it's been over 6 months. I work full time but just want to give it all up really and it's getting harder and harder every day. I don't get work sick pay, just SSP and anyway I don't want to let my boss down, and I do enjoy my job when I'm not feeling like death warmed over.

Started prednisolone steroids last week, had the dosage raised today, review next week.

Very fed up. I worked so hard to get myself to this point (went from housebound to working full time) and I WANT MY LIFE BACK! I want to be able to go out with my husband at weekends instead of sleeping. I know it's upsetting him, we've been married for 3 years, together for 5, and he's never seen me this bad.

Sorry for complaining so much, thank you for letting me vent

Welcome trinity and crazy

Not really sure what else to say as I'm not feeling very wordy today. But I'm sorry you are going through so much, both of you :(

I am 2 days in to doing the school runs and it's caught up with me a little. I have managed better than I thought though -

The good thing is it's forcing me to do all the looking-after-myself type stuff that I've learned in therapy and not really put into practise - and I am pleased to be contributing more to the household - but the real test will be next week as I'm back to work and I've no idea how I will manage three shifts (job can be quite physical depending on what timetable I'm given) as well as the rest of it. I know that sounds stupid as lots of you already do all that.

Has anyone has soft tissue therapy? I had a session last week and it was a fortune but amazing! I did feel like I'd been hit by a bus the next day but it passed.

Hi trinity and crazycat!

I'm in a similar position to you, trinity. Just been diagnosed with CFS with autumn. I first went to the GP 5 years ago, and after several rounds of blood tests which showed nothing wrong, she told me 'some people are more tired than others'. So I tried to live my life, believing I was normal, but there kept being hints that it wasn't so. It just seemed like other people could do so much more than me. No one else seemed to talk about getting ill on Wednesday afternoon if they did activities both Sat and Sun, for example. Looking back at evidence of my activities, though, the problems really started two years before I first went to the GP, with a prolonged bout of the flu.

It's been a bit disheartening to realise just how much of my life has fallen away, a realisation I am still working on. But it also helps a bit, as I can see that with evidence of how much I did before, I am sick now, and not just lazy.

Sorry for everyone suffering set backs and relapses. I think we all want our lives back!! So sorry for all of you trying to work FT. It took a few years for me to be diagnosed with CFS too. I have a reasonable balance now, -working very PT, functioning somewhere around the 40% (was nearer 10- 20% for so long 40 feels great) some respite for autistic ds (14-he needs to be busy and active), some help in the home but every now and then it gets to me too! The ill not lazy mantra has taken a bit of reinforcement! I had a busy half term and am now struggling to do the basics, but ds is back at school now so I can rest up now. Dh is away as he often is but we are managing. Ds had cooking at school today - very unusual moussaka, smelt divinely like hotcross buns! Flavour was unusual..
Fuzzpig well done at managing the school run. Hope Dh new job goes well, and his back holds out. Kinky, hope you got your early night and could rest properly. Perhaps have a pen and paper (or smartphone) to write down any of the million things that pop into your head and keep you awake for fear of forgetting to do them!
Trinity and Raggedy, sorry have a new diagnosis to cope with. it takes a while to adjust. Is your GP sympathetic and helpful? Some areas have a CFS/FMS or chronic pain team that can help with counselling and pacing advice. I thought I was good at pacing but their advice was to do even less than I was (trying) to do and eventually I did start to improve.
CrazyCat I hope the pred helps with your symptoms. It is hard for our partners. DH is better at noticing when I need to stop than I am now, but it took a while for him to understand the boom and bust cycle. 2Kids fingers crossed for your change of meds.

Grockle (())- how are you?

Ok - I'm new to this chronic pain business and need some tips from those who are in the know.

How do I deal with this? How can I distract myself from the pain?

Last night was the worst night of my life so far. My medication had to wear off before I could take the new stuff. Well, I can confirm that I do need the medication as I was in can't-sit-still-takes-your-breath-away agony from about 11 last night til.... now. And no sign of a let up. The new tablets I have are on a really low dose for the first week and they need to build up in your system to work so I don't know when I'll get any relief.

I have my 2 DDs at home and it's rubbish for them to see me in pain. But I can't hide it and until the new meds kick in there is nothing over the counter that I can take to help as it's nerve pain. The only stuff they did give me is co-codamol and that makes me sick.

I've been reading and have even dug out old DVDs to watch. The night is the worst when I'm lying in bed listening to DH sleep and still being awake when his alarm goes off at 5am.

What can I dooooooo? (sniff)

((2Kidsintow)). I am so sorry you are suffering. I don't think I can help but didn't like read and not post. Dvds and Cds are a good idea. Can someone get you some relaxation CDs from the library? I think it depends. Sometimes I pace (if my legs are willing) or use a counter irritant- which is what pacing is I presume. Other times the exact opposite (stillness) is more helpful. Sometimes mild warmth (a warm wheat bag, warm electric blanket or warm hot water bottle) will help (back pain for instance) - I think warmth can confuse nerves, as well as relax muscles that tense up when in pain. Are you familiar with mindfulness? Its a technique that can be useful with chronic day to day pain but I don't know if it would help with TN. It takes a bit of practice. Most of the pain in CFS/FMS is neuropathic too. I imagine TENS would be unsuitable for TN - perhaps check with the GP, but it might help for your hip pain? There are I can only say go back to the GP, especially if you are not getting any sleep! Fingers crossed the new medication is helpful and you have a better night tonight.

Thanks Magso.

I can pinpoint the second that the old meds must have cleared my system as that's when the pain started. And it didn't stop for 16 hours until I'd taken my first dose of the new tablets and felt them start to work. It was a VERY long night, but it's over.

I'm currently mostly rid of the constant pain and am just having niggles unless I trigger a full blown attack by doing something. Like eating, drinking, going out in the cold, doing too much talking.

I'm awaiting a call from the gp tomorrow to discuss whether I'm back in work on Monday or whether they are going to sign me off for a bit longer til the meds take better effect. Not sure what my class of 9 year olds would make of me stopping mid sentence and gasping in pain, then holding my face and wincing for ten minutes unable to speak to them until it passes. :)

How is everyone this weekend?

(((2kids))) hope you can get signed off longer and the mess kick in ASAP!

How are you Magso? I am doing surprisingly ok. I've had the first week of doing all school runs and I've survived - of course it has been slightly easier as I happened to be on leave.

I've struggled with the rest of what I should be doing, although have managed cooking quite well.

On Wednesday I had a mini I can't do this panic and was fighting years on the way home from school (had been late for picking up DD from dance club as well so was really embarrassed although the school were fine about it) but thankfully the walk has got easier. We've also found a childminder who'll have the DCs once a week when I do a late shift - we've really landed on our feet there as I was worried it'd take ages to find somebody.

Anyway yes the walking has got easier surprisingly fast, so I'm feeling cautiously optimistic that it means I'm getting fitter - but next week, when I'll be working 3 days, will be the real test.

I've been working really hard at improving my diet too. I know that's only really been possible since my symptoms improved a bit - back when I was working full time and constantly in pain there's no way I could think about it, but now things are a bit more steady I've been focusing on including a lot more nourishing food, especially good fats and protein, and it is really helping.

Erm, meds not mess sorry

Oh FFS and tears not years. Sodding iPod.

You sound like you are doing well Fuzzpig. Its a change for you. I get tearful when trying to do too much and failing. Sometimes there is no choice but to do too much. Good fats sound good.
2kids I suspect 9 year olds being old enough to notice you are in pain, might be upset so until your pain is manageable time off is better for you all.
I had a difficult day at work when there was a mix up and I assumed it was my tired fuzzy brain that was the reason something did not make sense, rather than picking up immediately what could have been a serious error. Fortunately another person inadvertently put me on the right track, but it made me feel very useless and slow. There is no doubt I am not as on the ball as I used to be - especially after a couple of hours at work! Dh has been away and ds always plays up more when DH is away. Its only since I've been ill and it makes me wonder if I've lost my touch at that too- although I know its probably just teenage boy mixing into the autism/LD mix. Still Dh is back, calm is restored, and I actually got a lay in this morning, which has helped me feel human again. Ds is happy to dh home too!
Perhaps we should all make a point of noticing what we are doing right (rather than worrying about the things we cannot do!

Yay! Got everything out of the house. But am so exhausted. Took Thu and Fri off work as I just couldn't manage to go in, and even after two naps Sat still feel half dead. :(

Good advice magso, and well-timed. I'm starting to quite worry about making it through work next week, but maybe I should concentrate on what I do manage instead of what I don't.

My referral to the fatigue specialist came through! End of March. I'm freaked out I might squander this opportunity by... well, I'm not sure, but just not taking the best advantage. Seeing the difference between me and DH during this move makes me wonder if I have CFS/ME or something else. I really didn't seem more bothered by carrying heavy things (except for knocking my pelvis out of alignment) than I did anything else, but DH was clearly far more exhausted by carrying.

I hope you got signed off for a little longer, 2kids.

Raggedy, well done at getting your house empty! Are you already in your new home? I wonder about moving sometimes, - our house is quite small (and ds needs a lot of space!) - but moving into this house ( from a tiny flat) was exhausting when we were both well and childfree - goodness knows how we would manage with Ds (strong but ASD and very much an mess maker/box tipper outer IYKWIM) and me with only a few hours work in me a day! Hope you recover well. Great to hear you have your fatigue specialist appointment come through.
Great news about the childminder Fuzzpig. One weight off your mind!

I love this thread. So supportive.

I am signed off longer. For the next 2 weeks, which gives me time to keep upping my meds to see if they help.

Have just finished squirming for a solid 15 minutes of pain that was set off by eating a cold sandwich. It's a nightmare. I love a cup of coffee and keep drinking them, knowing that they will have the same effect. I'm going to have to stop having hot drinks cos it just isn't worth it.

Magso - I think my class would be upset and confused to see me in pain, and as it comes from nowhere sometimes, I'm glad I've got a week or two more. I hate being off though! Glad you got some sleep. And what a good idea - appreciating what we can do and not dwelling on the things we can't.

I'm confused though, my sicknote says that I'm signed off until Monday 17th. I have a gp appt on that day and don't know whether that means I'm supposed to go back to school/work on the 17th or that I'm signed off on the 17th and go back on the 18th.

Doesn't take much to confuse me at the moment.

Fuzzpig, glad you had a good week. Pace yourself with those 3 days of work. :)

Raggedy - well done. And hurrah for a referral. Hope it brings you some help/ And it's not too far off either.

Glad to hear you got more time off, 2kids! Hopefully you'll be feeling more stable by the time you need to face a roomful of 9-year-olds again.

Yes, we've been in the new home for a bit over a year -- it was a move closer to work which made life tons easier (and to a house I really love), but made a big financial strain until the other house was sold. Might not have been the best decision, but we managed and it turned out okay, and I'm not sure I would have been able to work as I have for the last year if we hadn't moved (the old place was 1.5 hours more commuting per day). The old house still had quite a lot in it, as neither me nor DH really had any spare energy to bring things over (like, um, the stuff in the attic and shed), and thus it turns out we only got it out when absolutely necessary. Still shattered, which does not bode well for this week of work. But body is here and I'm slogging my way through.

Take care Raggedy, and hope you cope better than anticipated. Must be very hard working FT.
Glad you have been signed off for longer 2 kids - gives the new medications a chance to work and your body a chance to adapt to any side effects. Teacher is very full on and physically active.
I keep getting a strange cramp in my hip (at the front) - different to the sciatic pain. I don't know what it is, but it is very inconvenient! I presume it is back related, and is worse on sitting - but I can't stand too long either. What a wuss eh? Dh is due to go away soon for a bit longer. Ds Yr 9 annual review ( he has a statement - at SN school) falls during this time, but the school cannot change it to avoid DH absence, which is a bit problematic. But we tend not to get a chance to talk. I just hope I can be on the ball. Before I was ill, I attended everything alone, but its been such a fight to be heard at all at the new school that I feel 2 voices to advocate for ds is better than one.

Magso, can you call my GP and tell him that about the teaching? lol.

Ha! It's only since getting ill that I notice how physically demanding normal day to day stuff like standing and constantly getting up and down for a child can be! I didn't notice there is a very mild gradient on our seemingly flat road until I got sick.

Sorry to hear about the weird new pain, magso. I hope things go okay with DS and your school.

I have a question for you all -- how much do you tell about your issues to people at work, etc? I find I've been fielding a lot of casual "How are you?" questions lately. I typically smile and say "fine" or something. Recently I've had a ready answer with "Fine, except for this" and wiggle the walking stick and then I can tell that story. Some of these are people I work quite closely with, or see a lot. I don't quite like the idea of trying to 'hide' my problems, but I don't really want to set the rumour mill going about Raggedy's sick... I've told a couple superiors and 2 work-friends so far, and there's another work-friend I can imagine talking to, although all of those are people that I don't see on a daily basis. I wonder how other people handle it.