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Spoons! Support thread for CFS, ME & Lupus sufferers

(938 Posts)
Grockle Mon 24-Dec-12 23:30:26

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.


Spoon Theory here

icepole Wed 13-Feb-13 07:26:04

Thanks Magso, yes it is my glands that are sore. I could probably run for a bus but I wouldn't feel well afterwards! There is a long weekend here, will wait till afterwards before I decide. I actually don't think I am ready but I feel everyone thinks I should go back.

fuzzpig Wed 13-Feb-13 08:02:23

Hey magso, welcome to the OI club grin FWIW, my specialist did mention both the tachycardia and the low BP when he told me I had POTS, so I assumed both are equally important. The sudden standing was the only test I did for it though. I've actually been wondering about asking to be referred to a specialist for the POTS as well (I know of a good one as I had a PM from a MNer) - it may be related to the CFS, but it is an illness in its own right. Some days it's far worse than the CFS symptoms.

It's funny I was just thinking about running for the bus yesterday, I wouldn't do it now. On my long work days, there is a bus at 7.07 that I can occasionally get - I did on Monday as we got out early but I had to walk really fast and it hurt. But if I miss it I don't get home til nearly 8 and that's bad too of course. It confirmed though that I'm doing the right thing by pacing my journey through Victoria on hospital days - it's just not worth rushing and I get to visit the Krispy Kreme stall grin

Just wanted to say WRT feeling like you've failed by being single parents... NO!!! Honestly, being in an unhealthy, even toxic relationship, is much much worse on the DCs in the long run.

fuzzpig Wed 13-Feb-13 08:18:52

TBH icepole if you go back too soon and then go off sick again - which you will, if this is happening too soon - then it will show them that they are rushing you. It is abysmal that your employers aren't taking occ health reccomendations seriously. angry My manager actually said the opposite - that if she felt they were too harsh (eg not agreeing that I should reduce my hours) she could still decide to be more lenient. Maybe that's just as bad as she would still be ignoring OH but at least it understands how bad my illness is.

I don't get sore throats all the time but I am very prone to tonsillitis and chest infections. Unfortunately it seems like my 3yo DS is going the same way already sad

ArbitraryUsername Wed 13-Feb-13 09:51:12

Ice pole: it sounds horribly difficult. I can absolutely sympathise with the problem of people seeing you and thinking you're ok, but they don't see you when you're not. This is the really big problem with our kind of condition. People see that you can (sometimes) go to the supermarket, take the kids to the park, commute to work and teach brilliantly, but they don't see all the pain killers and effort that it took to do it (or how much of a happy face you had to paint on) and they certainly don't see you when you collapse at home and can't do anything for hours/days afterwards (depending on how bad it is/what you've done).

It would be much better if the school could phase you in and then let you come bak properly after the holidays. My line manager seems to think this could be something that might work for me. She said it was ok for me to have this semester off and come back for a fresh start in the next academic year.

Fizz pig: you are absolutely right. It is not a failure. I absolutely know it's not. It just feels like one. But I'll get over that.

Grockle Wed 13-Feb-13 11:13:32

Icepole, occ health (atos) said the same to me & then the local authority said the same as your school.

I have frequent sore throats - about 10 per year but no problems with glands, I dont think.

I'm at home again! I'm kind of proud of myself for actually saying I am too sick to work. I will go in tomorrow but the thought of it is making me will. My lead suit is heavier than ever and I'm so bloody tired.

What is the different between CFS & fibro? I'm just wondering how the decide you have one not the other.

icepole Wed 13-Feb-13 11:30:16

The pain in my throat is my main symptom, or my first one anyway. I get pain in my glands and then I feel nauseous and tired. I have seen a throat specialist but they couldn't see anything.

Everyone around me is fed up. I could probably manage the first week, it's after that I am worried about.

icepole Wed 13-Feb-13 11:55:28

Grockle how did you find the four week return? Did it seem fast to you? I have some difficult classes, terrified of being unwell and having to deal with them.

Grockle Wed 13-Feb-13 12:13:17

4 week return was ok for me at the time... I felt that the only way to see what I could do was to try it. I could have spent 8 weeks building up to it to find that I couldn't manage but I wanted to do it quickly so that I knew one way or another. And I did manage for a while but my quality of life is crap... we get up, I drop DS at childminder's, go to work., pick DS up, take him to his activity, feed him then we both go to bed. I don't plan properly or anything - I have told work that but they just care if I'm in school or not.

It helps that I have a small class (so less paperwork) and a lot of good TAs to help me during the day.

I'm back to being in a lot of pain, exhaustion & confusion... I know I pushed myself too far and my body couldn't handle it and I'm now paying for it. I want to work tomorrow so that
a) people see me & realise that I look shit & am not skiving
b) I have done a day before half-term which hopefully will mean I won't get too used to being at home (where I function much better)
c) to see if I can actually manage
d) so that senior management see that I am trying very hard to be at work

fuzzpig Wed 13-Feb-13 13:59:55

WRT the difference between CFS and FM - I am certainly no expert but as I understand it a lot of people think they are actually the same, but with emphasis on slightly different symptoms. With CFS the main symptom is fatigue (some of the diagnostic criteria I mentioned earlier also say you can't be diagnosed with CFS if you say the worst symptom is pain) but with FM the main one is pain. It's a certain type of tissue (wiki will explain it better than me!) and you also have sensitivity in various places on the body.

I have a diagnosis of 'arthralgia' as well as CFS and POTS so I guess the specialist felt the huge amount of joint pain I have is actually not entirely due to CFS. It's not FM either (although I have wondered if I have that as well due to other pain) as the pain in FM is not in the joints. Or something. confused

ArbitraryUsername Wed 13-Feb-13 15:28:30

My GP tends to call what I have 'polyarthralgia' when he can't think of anything better. The consultant's letters have a diagnosis of undifferentiated spondyloarthritis but say that it's early days in the investigation. I think that's because undifferentiated spondyloarthritis is what they call ankylosing spondylitis until it meets certain criteria (they need evidence of inflammation and possibly joint damage on imaging tests). I doubt they'll find this evidence. I've had joint problems since I was about 13, so there'd probably be damage or inflammation to see by now). Of course, I can find plenty of evidence of inflammation in the form of pain and red hot joints. It doesn't seem to count though. There'd be more treatment options (not a cure, but more than just symptom/pain management) if they found the right kind of evidence. But I doubt they ever will.

I don't carry the gene markers that are usually associated with AS either (although, as with all these things, some people just don't and many of those with the marker don't have the condition). At least that means that it's far less likely that the boys will develop the condition. Because of the generic link, it does tend to run in families (and is more common in men, which means there of loads of advice on maintaining a sex life with the condition, written from the point of view of men with the condition. Obviously this shows how to have sex in such a way as to utterly cripple women with the condition).

Grockle Wed 13-Feb-13 20:09:40

I've had various things on my sick notes...arthralgia, fibromyalgia etc. They don't really cover the pain (joint, muscle) & fatigue. I slept this afternoon and thankfully set an alarm to fetch DS from school. I neatened myself up before I left the house & was met by another mum who said, 'oh, you look awful, so tired...' Um, thanks.

Dreading work tomorrow.

Does anyone get really cold extremities? My hands and feet and nose are always freezing, even when bundled up. My fingers go white & hurt even if I've only been outside for a few minutes - I find feeding the chickens really difficult or anything that involves using my fingers in the cold. Ouch.

fuzzpig Wed 13-Feb-13 20:47:24

I find my hands fingers get incredibly cold sometimes and it really makes the pain in my knuckles very bad. I've even been known to wear fingerless gloves at work.

My sick notes have usually had the 'real' illness (IYSWIM) so chest infection, gastro etc, although the times when I've been off longer I've also had 'post viral fatigue' until I got my official dx.

I'm lucky to have a couple of colleagues with whom I can be completely honest - the rest are very nice but I tend to gloss over things a bit (or else I say too much and then feel uncomfortable). Anyway, one of my closest work friends said yesterday that I am very brave. I told her today she was wrong... if I was truly brave I would just phone in sick and get my doctor to sign me off for a month. Because that is what I need, but I'm too scared to stand up for myself. That's why I wait for a 'real' illness so I feel justified in being off sad

Grockle Wed 13-Feb-13 20:57:47

Oh fuzz, it's horrible, isn't it? Last year, when I was really ill & had a bit of a breakdown, I was desperately trying to think of ways to have a 'proper illness' DP refused to run me over with the car & I so I was always thinking 'if I fell in front of that bus, I'd get hurt & could legitimately have a break'

It's never good to have to wait for a more 'legitimate' reason.

icepole Wed 13-Feb-13 21:12:21

How horrible to have to think like that. I kept wishing they would find something concrete.

I don't really get my work. OH said I would need timetable modification until the summer but they expect me to be sorted in 4 weeks confused

fuzzpig Wed 13-Feb-13 21:23:07

Thankfully (!) I never have to wait long as my immune system is so useless right now that I pick up every bloody thing going. But then perhaps if I had some proper time off to really recover I wouldn't get so many bugs.

It is bad that I do it like this though because now people expect me to be ok if I 'just' have CFS and not another temporary illness as well. But I just don't have the strength to fight it right now.

Icepole TBH if they make you fit with their ridiculous time frame then they will regret it as you are bound to need more time off sick. A shame it has to come to that, but maybe it will make them realise how serious the illness is.

fuzzpig Wed 13-Feb-13 21:28:20

Also I am really struggling with mornings just recently. I have had trouble getting up for ages but I keep getting all shaky mid morning. I can almost set my watch by it! But then after a break I feel better and get through the rest of the day... until of course the next day when I feel like shit again. It's weird.

ArbitraryUsername Wed 13-Feb-13 22:03:31

Grockle: the white painful fingers in the cold is probably Raynaud's disease. It's commonly associated with lupus.

My fingers get very cold and painful sometimes, but not in the same way. They also swell up and get very red, hot, painful and itchy if I get too hot or due to temperature changes. My feet/toes do it too. It's definitely not chilblains (I've had chilblains before and this is very different). I have no idea what it is but it's not pleasant.

I also get ludicrously itchy skin from time to time, for no apparent reason. I end up with loads of scabby scratch marks all over my back and sometimes on my face from scratching in my sleep. And my cheeks get very red and hot for no reason sometimes (the skin goes a bit scaly too). It doesn't seem to be related to anything I eat or put on my face. It just happens. Neither the scabs nor the red cheeks are enormously attractive.

I also get the bumps on my scalp and the back of my head that you mentioned down thread, grockle. And I tend to scratch and pick at the bumps too. I think they're probably spots. I wish I would grow out of that.

magso Wed 13-Feb-13 23:22:14

Fuzzpig I also am more likely to get wobbly in the morning. I do wonder if the OI is worse then -perhaps BP varies with the circadian rhythm I don't know.

fuzzpig Thu 14-Feb-13 06:51:21

Magso I have to get out of bed really slowly, I think because I've been lying down for several hours it's more of a shock to the body. I've read that it's good to sleep at an angle, eg putting some breeze blocks under the head end of the bed.

I think I may have actually had POTS for most of my life because I've always had problems with standing/dizziness/racing heart etc.

smilingthroughgrittedteeth Thu 14-Feb-13 08:30:50

I get really cold hands and feet, lately the whole of me is cold I just can't seem to get warm.

I struggle to get out of bed in the morning and this morning I cried the whole time I was getting up and dressed it was such hard work, I think I must have used most of my spoons just doing that. DP kept telling me to phone in sick but I can't it leaves my bosses without childcare.

My throat hurts all the time but I don't have painful glands.

I seem to have permanently blocked sinuses.

I get the shakey sick feeling at 3pm every day, doesn't matter if I've eaten/slept/drank I still get it, it passes if I lie down for awhile but if I'm working its right over school pickup time so not possible to just rest and ride it out.

I have also considered throwing myself down the stairs or in front of a bus, when I was very unwell last year I remember begging DP to push me down the stairs so that I could have a real reason to feel so awful.

DP has been signed off work for another 4 weeks with his back and starts physio on the 8th of march.

My poor friend who's staying with us has been brilliant and really helped. Im so glad she's around to help but Im looking forward to having my house to myself again, with her staying and DP being home all the time I'm starting to feel a bit suffocated.

magso Thu 14-Feb-13 08:35:33

Yes I too have a long history of keeling over since adolescence, it never occurred to me it was not normal. Before illness it was running upstairs on a cold morning or getting up in night for the loo that knocked me down, now ( running up stairs is not even possible) I get up slowly. The tachycardia is only since I was ill. I get a low around mid afternoon also when my legs get extra wobbly and I just want to lie down. Just in time for after school -poor ds! I wonder if the PoTS makes us more prone to CFS?

magso Thu 14-Feb-13 08:43:41

Cross posted smiling! Sorry you are feeling so low today. Interesting you too get low at 3pm too. Hope the physio helps your dh. It is awful to feel you have to get up even when exhausted. I,ve got yet another sinus infection, but since my surgery at least the gunk can drain -oh joy!

fuzzpig Thu 14-Feb-13 10:55:23

Yes I get really bad when getting up in the night too. Thankfully the amitriptyline knocks me out enough that I now only get up to pee once or twice a night rather than several times (which is how I've been since first pregnancy in 2007!). I always check on my DCs before going to the loo and if I get up too fast, by the time I've got to their room it is spinning around me.

magso Thu 14-Feb-13 11:09:38

I wonder why sleeping with a slightly raised top end helps. Could it be it forces the body to see this as listing flat so increases blood volume slightly?

fuzzpig Thu 14-Feb-13 13:11:15

I assumed maybe it's because it's less of a shock to the body but I am crap at science so I don't really know. I was also told (by a lovely MNer who sent me a PM with info about her DD's treatment regime for POTS) about drinking a sports drink (I have lucozade sport) for all the electrolyte replacement etc. I also try and eat more salt and have more water (to increase blood volume) - that was recommended by my CFS specialist.

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