Spoons! Support thread for CFS, ME & Lupus sufferers

[Grockle]

Merry Christmas to you all.

Wishing you a happy, spoon-filled day.

Spoon Theory here

Glad your line manager is supportive though, even if senior management and your staff are useless. It helps to have someone on side.

Grockle I agree -I could consider a gentle walk or housework to be cardio since either push up my heart rate very high. I simply cannot do anything more (and stay upright and compis mentis). I don't think I can self refer to physio, I see a chiropractor privately but its rather costly. I could ask my GP. My back is very stiff (and sore of course), and all my other joints play up - I think they must have a secret rotor!

marking spot brb!!

Today DS2 has a lovely sickness bug. It involves copious amounts of projectile vomit. Poor thing. DH has take DS1 out to play videogames in an arcade and have lunch and maybe go bowling and maybe buy a videogame. I hope it goes well. I'm spending the day holding the sick bowl for a very grumpy 3 year old. Fun.

Mind if I wander in?

I've been directed here again, and this time I feel like I should actually make the effort to actually post instead of lurk and posting may prompt me into staying on a long running thread this time

I have fibro. I know I have fibro because I tick every sodding box possible and the fatigue takes the passenger seat to the pain in the drivers seat. I've just started the diagnostic process, saw a doctor in January/February time, then had to 'join' the surgery and have had to wait to see the nurse to be assessed, which is finally happening on Tuesday, and then I can book to see a doctor with the nice long list about what's actually wrong with me to hand the doctor. I'm also going to go down alternative routes alongside the NHS.
Any suggestions about which specialists to see privately? My parents have said that they'll help put the money forward to speed up seeing some private specialists to avoid the NHS specialists waiting lists.

I'm 24 this year and I've decided that I will get a sodding diagnosis that makes sense before I'm 26. I absolutely won't be fobbed off with "Oh your knees are growing pains/chrodomalacia patella/absolutely nothing wrong with them." or "Your chest is Tietzes, nothing to do with the joint pain you've started experiencing elsewhere." or "Your bladder problems are in your head."

How does the process go too? What will (ideally) happen after I go with a list?

You probably want to see a rheumatologist. You'll get lots of blood taken. They might get some imaging tests too (X-rays, ultrasounds, MRIs etc). You should get some decent painkillers.

I can understand your frustration at still not having a diagnosis. My mum first took me to the doctors with joint/leg pains when I was a toddler. I spent my teenage years visiting all kinds of specialists and wearing wrist splints. I finally got at diagnosis at 30. By that time the rheumy knew what it was pretty much straight away.

Okay, rheumatologist. One of the ones I always forget about. I'll write that down though this time.

Admittedly, I gave up seeing doctors when I was 19/20 and just kept getting told it was all in my head. I decided that once I'd settled in one area of the country I'd start trying again but I've been in Brighton for 18 months now and I've only just got around to it Partly because even now my family don't believe that there is anything wrong with me, so I wonder why a doctor would believe me when they haven't seen what it's been like for the past 13/14 years! But things have got a lot worse over the past two years.

I'm managing without painkillers at the moment for 75% of the time and up until recently it was 90% of the time. The pain isn't too severe most of the time, just constant. It's the fatigue that bugs me. I am used to the pain but the fatigue is a relatively 'new' thing and I'm still trying to get used to it.

Don't like blood tests

Thank you though, I'm having a bit of a downer today so it's good to be on here and working things out.

Hello CP, glad you came back! I wasn't sure if on the other thread I was inviting people who had already been - I'm rubbish with names

And honestly don't worry about drifting in and out, lots of people do, we wouldn't judge anyone who isn't always able to post or read everyone else's posts. It can take a surprising amount of energy!

Interesting about the driver/passenger seat analogy - when I was dxd (incidentally, it was shortly before turning 26!) I found out that under a different set of criteria I wouldn't have been dxd with CFS because I classed my pain as worse than the fatigue. I wonder if then I would've been considered for fibro instead. Unfortunately a lot of people hear the name CFS and assume it just means tiredness, it does no justice to the severe debilitating pain. I get pain in joints and muscles, but it varies in location.

I've never seen a rheumatologist but I think I was very lucky to be referred straight to a CFS specialist.

Oh, I'm sorry your family aren't supportive. That is horrible :(

You might find that sorting the pain reduces the fatigue a bit. Being in constant pain (even if it's not unbearable) drains your energy.

There will be plenty of blood tests, unfortunately. There are always blood tests. But they do help the diagnosis process. If they suspect fibro they'll also prod you in various places. And they may check your flexibility in various ways. There may also be questionnaires to fill in. (And they check your height and weight, and often ask you to bring a urine sample).

I found that the doctors took me much more seriously as an adult than they ever did when I was younger.

fuzz: I'm also rubbish with names! I recognise a few, but they are the ones that make me laugh, I couldn't tell you anythign about the poster themselves

The passenger/driver is the only thing I can think of really, because having thought about it, the fatigue isn't in a backseat to the pain. Other problems, like my bladder issues, joint weakness/giving out, mild mild food reactions would be in the back seat (or even sat in the boot regarding the food! ), but the fatigue is major like the pain is, it's just not as major.

Arbitrary: I never thought about that. I've heard it but usually brush it off, but actually, being in pain is tiring. I guess I'm just scared of becoming reliant on pain killers really, I was when I was a teen and when I realised what I was doing to myself I said no more. That and painkillers used to stop the pain but also mask the weakness, and I wasn't very good at realising when my knees were taking too much and they'd give out on me.

I can put up with blood tests really, I grumble and moan about them but I'm usually fine in front of the nurse administering them

Fuzz: I've just learnt not to talk about it to them really. My Mum makes all the right noises when I do complain to her, but then tells my sisters (and extended family I found out last week) that I'm fine. Though quite frequently I have the following conversation with my sisters:
Sister: You should wear heels.
Me: I can't, it causes unnecessary pain.
Sister: You just need to get used to them.
Me: Yes, because my knees won't give out when I wear them after 'getting used' to my legs being forced into an uncomfortable and unnatural position.

That conversation gets repetitive in their attempts to girly me up!

I've long since resigned myself to existing on painkillers. It is much better than the alternative. I still get significant pain despite them, but it really would be unbearable without them.

You might find some physio really useful if you have knee weakness and worry about them giving out.

I can't wear heels either. They utterly destroy my lower back. There really is no getting used to it.

I haven't worn heels since secondary school! I live in trainers wherever possible, and Skechers at work (ballet flat style but more supportive). I couldn't give a flying fox about being girly. Although I am a bit about how long it is since I shaved my legs - thank goodness it's winter! :o

In terms of painkillers I just use my prescribed amitryptiline daily, I think it helps a little. I take ibuprofen if I have a really bad headache but nothing really works that well. Painkillers can have nasty long term effects on the stomach apparently but it's hard not to rely on them sometimes isn't it. :( I think one thing that helps me stay off them is having seen DH on them long term for his back - the dependence and side effects are not pretty. He was on 28 pills a day (on a good day) until his operation and then had to withdraw very slowly.

I also was never taken seriously as a teen - I am pretty sure I have had postural orthostatic tachycardia syndrome (POTS) since at least my early teens, but I was fobbed off by the GP saying it was just a normal 'head rush'. So I went through years of feeling inferior and unfit. In hindsight though it was also the same doctor who, when I was dragged to see them after my parents found out I was self harming, told me "I know you're just doing it for attention". Arse.

Feeling a bit guilty today as I couldn't go to a little concert DD was in - a local council schools choir thing. DSDs took her which was lovely though, and they recorded it - DD was brilliant! Her teacher mentioned at parents evening that she should join the after-school 'glee club' to increase her confidence. I want to do it but even the thought of an extra school run (let alone the money!) is scary as I'm not sure I could handle more walking. I hate having to consider stuff like that, healthy people can take it for granted.

I take about 20 pills a day. none of them are habit forming though, and there are no withdrawal symptoms in the unlikely event that I don't take them. I couldn't get on with anything habit forming! I do have to take stomach protectors though. But not taking pain killers really isn't an option. I'd just shut down completely. I had hideous withdrawal from amitriptyline. It was no fun whatsoever.

Does your school charge for after-school clubs, fuzz? It is hard trying to balance everything, especially where you have so little leeway.

Yes they charge, most things are about £5 per session I think. They have 'yoga bugs' too which sound good. We could afford to send her to one club I think, although we are going to wait until we know what is happening with my reduced wages, and if DH gets a job or if we have to go on income support etc. So far we have avoided extra clubs as DD is a summer baby (in yr1) and gets tired just from school.

I would actually really love to send both DD and DS(3) to either gym or dance, but even the thought of adding something extra to our week is exhausting. I feel guilty that they don't get to do anything fun.

£5 a session is very expensive. I take it the club isn't actually run by the school?

DS2 does yoga at nursery (one of the nursery nurses teaches it) and absolutely loves it. He's always getting out my yoga mat and showing me his moves. I'm glad it's included in the fees, as I suspect yoga classes for preschoolers would not be cheap. DS2 doesn't do any classes or anything as he's at nursery FT, but he'll probably want to when he goes to school. I had t put his name down for beavers already, as there's a huge waiting list (he wants to go because DS1 is a scout, and DS1 wants to be a youth leader for beavers once he's old enough).

Ah yes you've reminded me I need to put DD's name down for brownies (there isn't a rainbows here) - my colleague's mum runs it.

Yeah, the classes are privately run, they have all sorts round here (wealthy area so plenty of kids going to everything). However I just opened DD's book bag to find a letter about a 6 week course run by school for £3 all in! Hoping she gets a place.

There are also council-run play schemes in the holidays which we will definitely apply for but she has to turn 6 first!

My DCs really love doing this yoga book at bedtime, we also have this one

Considering sending it into nursery with DS as they might like trying it with all the children.

I seem to remember DD doing some yoga when she was at a private nursery - they also had a football coach.

ConfusedPixie - it seems in Brighton you could get a referral for fibromyalgia here.

Do any of you use wheelchairs? I've only recently found out that the mobility scheme covers electric wheelchairs as well, and have started looking into them, but having only had a self propelled one before, it's all new really. Any tips with choosing one?

CFS Thank you for the link, I will try getting them to refer me there ASAP

Hi confusedpixie... I think most of us have been down the long road of ruling out everything else before being diagnosed whatever. It is infuriating, upsetting & demoralising. I hope that going privately helps speed things up. I tried to go privately (my mum offered to pay) but my local nuffield hospital never returned phone calls & the nhs turned out to be more efficient. Who'd have thought it? Sorry your family aren't suportive. It's crap, being made to feel that you are imagining everything. I've sat in my wheelchair & wondered if I could possibly be imagining the fact that my legs just won't move properly. I still wonder if it's all psychgosomatic. Like arb, I am in constant pain but the level varies. Usually it is moderate & I think without the painkillers, it would be unbearable.

Interesting talk of passenger/ driver seat... my current problem is fatigue and lead legs. The pain isn't awful & has been manageable for a while but I'm so tired, I feel sick. I cried for no reason this morning while I was driving

Fuzz, DS does karate twice a week, swimming and stagecschool. So, 4 days a week we have to rush to one place or another. I hate it but DS loves his activities and is doing really well. I don't want him to miss out on things because I'm ill but I am fairly sure that if I didn't have those extra 8 journeys a week, on top of the school run & work commute, I'd feel better.

Arbitrary, I hope DS2 is feeling better & that DS1 had fun with his Dad. And that you survived the day.

hello everyone,
may I join pls as I've directed here... I've just been diagnosed with fibromyalgia, kind of have known this to be the case for past 3 year's myself, but, it took a referral to a neurologist to finally diagnose me. I've got other health issues aswell so I'm on numerous tablets a day :(

I'm mostly bed bound as I have no energy at all & pains all over the body (muscle stiffness and sore joints). most recently the left side of my body has completely given up, it hurts to even lift my arm.

anyway enough of my moaning (sorry) hope everyone has had an ok day :)

Hi PFL, glad you came to the thread :) do you think the other health issues are related to the fibro?

I'm supposed to go back to work tomorrow. At least that's when my sick note runs out. The doctor did say to phone up if I'm not better (from the tonsillitis).

I emailed my manager midweek about the current situation - and she also would have had the occ health report by now - but haven't had a reply yet.

Am in limbo!

Oh and there's absolutely no news to apologise for moaning BTW - tis the purpose of the thread :o