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/

Ugh what a day! Someone at work (who's not known for his tact) asked me why I used crutches "when there isn't anything wrong with your legs"! I wanted to tell him to Foxtrot Oscar and then pat him on the back for being so clever for having x-ray vision and perhaps he'd like to correct my rheumatologist on her diagnosis of Rheumatoid Arthritis with associated joint damage.

I can't put my finger on why but it really upset me, perhaps because I feel like a fraud most of the time anyway.

Candy that would have upset me too - for the same reason - that irrational fear of being a fraud!! It took a friend who at the time did not know me very well to tell me I was ill not lazy, and the ME team said much the same. I wish I could come out with a joke - the way chaps do - in that sort of situation.
I struggle to maintain friendships too. I don't know the answer.

hello everyone

I haven't posted on here for ages as since getting a diagnosis I've had a pretty good few months but I'm struggling at the moment and thought I'd have a moan to people who will understand and not tell me to just keep going

I just can't stay awake, I had 2.5 weeks off of work and was fine before and during but since coming back I've been completely exhausted, my body aches and everything seems like hard work...... it doesn't help that I'd got out of the habit of being resigned to being tired all the time and am now getting frustrated with myself.

Hi Smiling. Moan away! Sorry you are feeling so tired. I am back to work (only very pt) after a break so expect it will be me struggling to stay awake and tomorrow. I've been going through a better patch so find the not so good days harder to cope with also. Hope your general trend is generally good. Are you on any treatment at last?

Hi smiling, sometimes you have to just stop or at least slow down and take it easy. Ploughing on through can lead to burn out. Sometimes keeping going is needed but only when you must. Us chronically ill people cannot function in the same way as others, we need to find our own pace.

I was diagnosed with liver failure I'm on a special boring diet and meds and since having a coil fitted have stopped having fainting spells, is just harder to cope with after feeling well for a few months

hi smiling, in exact same posisition, felt a littler better last week so back to work this week............why didn't it occur to me that I ws ok cos I wasn't doing anything, im back in work with a bang,today I sent an email to some onewhis a constant critic , to my work, we have had tiffs in the past, this morning I just wanted to as what is your fucking problem, but I was professional ad asked it in a professional manner, this isn't me!!! I don't make fuss, but I am tired work kills me, but I have to work I have 2 kids to support and my job is good, but im struggling, tonight I haven't even got the energy to cry

I really haven't managed to catch up but thought I'd post anyway. Will try to catch up properly.

A few weeks ago, I saw a private dr who said my liver & kidney function are not good & I have 'functional' heart failure... no permanent damage but my heart is struggling to manage. Which explains the tachycardia & chest pains.

He has put me on a strict diet which he is sure will help my liver & kidneys recover. It's horrible though: no dairy, no sugar, no fruit, no refined carbs, no yeast, no vinegar. So, I'm living on potatoes & veg & salad with no dressing. I am sick of it. I haven't even lost any weight. It's miserable.

Thank you for the dog link, building. I will check it out.

Sending love & spoons to you all.

Smiling the diet sounds hard. I hope the diet helps Grockle, although it sounds rather shocking ( chest pain and functional heart failure - sounds terrifying!) I am still trying to sort out my tachycardia. Still waiting for more tests. 24 hr BP is next. With appointments 4+ months apart (and its always more) it is taking quite a while. But then its years already so whats the hurry? Would you be allowed D-Ribose on your diet, I am convinced it has helped me. I came off my diet for the holidays and have put the weight back on again. Still now ds is back at school I can go back to dieting.
Spoons to you.

Just thought I'd check in. I've been having acupuncture and I'm absolutely sure it is helping. I had about two weeks where higher levels of activity (I.e. housework, not exercise!) did not exhaust me. Yay. I feel more normal-ish.

Spoons to everyone.

Can I join your thread?
After years of increasing sacro-iliac pain, I've suddenly developed multiple joint pain and debilitating fatigue and breathlessness. I've been given a diagnosis of Lupus and sacroilitis, plus herniated lumbar discs.

It makes perfect sense to me as I have a history of miscarriages and had numerous other symptoms creeping up on me for years. This last three weeks it feels like my body has just shut down though. I'm still finding it hard to accept, I don't want Lupus. I've always been an incredibly bouncy person, hyperactive some would say, so the fatigue is really frightening. I live in the south of France, which is fantastic but I think the summer and bronchitis last month has triggered off my first Lupus flare.

I have a son with ASD and hyperactivity which is an added challenge. Plus we are still trying for another baby and are on an assisted fertility programme. We are putting that to one side for the time being though, until the flare has passed.
Reading through some of the thread I can see I got my diagnosis relatively easily. French medicine is very proactive and they diagnose and treat quickly although they are not as up to date as the UK and they don't share information or educate the patients.

Can I ask some advice? How long do Lupus flares last and am I likely to feel back to my normal self once the flare has passed? Does anyone else get very breathless in the mornings? My GP is confused by it but I wonder if she is inexperienced in Lupus.

Welcome Accidental, but I am so sorry you are ill. I do not have a diagnosis of lupus so cannot answer you questions. I do have debilitating breathlessness (and back and joint pain) so can empathise. My breathlessness is worse in the mornings. I don't know why. It seems I have postural hypotension and tachycardia so drink loads on waking to try to help. I have no idea if that would help you. I think the best person to ask is your specialist. Could you ask for lung function tests? Hope your flare up is soon under control. (Hug)

Hello, can I join and maybe get some advice?

Back at the beginning of January, I caught a virus, with flu like symptoms, but also a huge amount of pain, so intense that I ended up at a and e in the middle of the night. However after a few days I felt quite a bit better and went back to work. I managed three days, before the most extreme exhaustion hit me. I couldn't even hold up a book, or walk up the stairs. I was off work for nearly 5 months. The doctors tested everything, said everything was fine, and diagnosed post viral fatigue. No suggestions for treatment, no medication other than codine, as I was still in a lot of pain. No indication of how long it would last.

So I went back to work in May, it was difficult at first, but soon felt ok. Forgot I had been ill. Life went back to normal. But then about 5 weeks ago, I cleaned the kitchen at the weekend, and it came back. More time off work. Although I'm back now. But work is all I can manage some days. I'm sore, all the time. The pain moves about, some days it's my back, often it's my arms. Typing this is leaving me with a burning pain, like the type you would get after a too strenuous workout. Pain killers don't seem to make a difference. My legs and back spasm at night, particularly after a long day. I also often seem to get really painful bowels.

I stupidly googled, and found that these are the symptoms of chronic fatigue symptom, and that it could be permanent. I got really really upset, and stepped away from the computer.

So how do I manage this? I'm only in my 30s, I have two young children, and I am the main earner in the house. I'm already in attendance management at my work, and I really can't afford to lose my job. DH works, but doesn't have a permanent contract, so we can't live off his wages. The spoons theory was really helpful in thinking about how I spend my energy, but when things are bad, work uses up every single spoon I have, and then i come home to a clingy 3 year old, and can't just climb into bed.

Sorry for the essay. God, my arms are killing me now!

Thank you Magso kind words mean so much at the moment when I'm reeling with the suddenness of it all.
I've managed to get someone to take my son to school in the mornings so at least I can stay in bed until the worst of the breathlessness passes. I'll try drinking loads of water and see if that helps. I have had tests looking for blood clots but they've come back clear, as I expected them to. I know the breathlessness is part of the fatigue for me.

As is often the way, we don't know how bad something is unless we experience it ourselves. I'm sorry that anyone finds themselves on a chronic pain and fatigue thread. I'm sure it will become a much relied on support for me in the future.

Hi altogetherAndrews your situation sounds frightening, especially as you have an active family life and job. I can't help with the answers except to say keep going back to your GP, or perhaps see a rheumatologist? I've found the more I see the GP the more they are inclined to take it seriously.
Do you have an HR department at work or occupational health that you could see. Sending you unmumsnetty hugs.

Hi everyone! Could I join the thread? My cat walked across the iPad and it popped up. Fate really as I am so low at the moment.

The spoon analogy is genius and I can't wait to use it to explain to others what my day/life is like. I have good and bad days - it seems as though this has been a bad week.
I was born with a hip defect that was undiagnosed for 2 years. I have said for years my lower back was "sore" we'll bloody painful really - I was constantly told it was transferred pain from my hip. Anyway a hip replacement nearly 3 yrs ago didn't address the back pain and the numbness in my leg. A chance meeting with my consultant sent me for an MRI which revealed spinal degeneration, bulging discs and pinched nerves. The day that letter arrived was great as I felt that I was not lying or imagining it. My STBex had to say sorry as he had always hinted that I was a lazy cow really when housework didn't get done and I reduced my hrs at work.

I teach in Early Years so its not ideal and I have gone on supply to cope with bad days a bit better though. Hopefully it will be ok but I feel very stressed about money. I am thinking of applying for DLA to help but when I see the papers they are full of stories with people much worse than I am who don't get awarded it.

Anyway although I wouldn't wish how any of us feel on my worse enemy it is nice that there are some people who will know how I am feeling

Hello all... Sorry I've been AWOL for a while. I'm not really sure why, I don't know maybe I just needed a break from thinking about the CFS stuff.

Going to catch up on everyone's posts now xx

Thanks for the answers about making friends! Sorry it took so long to get back, but I haven't had the energy for internet until the weekend. It's good to see others find it difficult too.

Hello accidental, altogether, and always. Sorry that you have the need to join the thread, but welcome anyway :) I completely relate with the sense someone said of feeling like you're making it all up. Sometimes I wonder if it's not like the GP said, and some people are just more tired. Than I hear about what other people can do, and don't have to be so careful of spoons (love the analogy, too!), and think my life just isn't normal.

So, we finally registered at the new GP! The process took longer than I expected a little beyond DD's patience! but it is done. We have appointments in early Oct to be able to get repeats on our prescriptions -- I'm not sure if I should go into everything then, or make a special appointment after I've got sorted that I can keep my meds.

Work has continued to be a nightmare, and it looks like I'm going to miss a major deadline :( Although that realisation has actually taken some of the pressure off -- I'll do the best I can, but I'm not going to go to extraordinary effort as it is unlikely to help anyway.

Raggedy, glad that you have registered with the new GP and hope that you can see them soon and that it goes smoothly there. Well done with not letting work take over the weekend or put pressure on you to do more than you should. Better that than over doing it.

Welcome newcomers, and please keep posting.

altogetherAndrews As others have said, do go back to the doctor and get to the bottom of this. They might have just done simple tests and not investigated fully.

Just popping my head around the corner to say hi to the newbies. I'm living in a haze of injection anxiety and vomit bowls. I'm not feeling well at all and so damn miserable.

Always, we are virtual twins!! I have almost exactly the same history of Undiagnosed hip dysphasia then back troubles later on. I got the knees, too! My back history is long and depressing. It's on here somewhere if you can be bothered to find it.

Anyway just wanted to say hi. I'm lying on my bed full of gabapentin and tramadol. Not the life I planned, frankly.

I no longer work and was able to claim contribution based ESA for a year. I've looked at DLA but wouldn't qualify even though I have Blue Badge etc. ESAwaseasy to get but as I say I wasn't working at all.i was actually dismissed from my midwifery post for ill health. I am in the process of applying for ill health retirement but that's a real old saga.

May I be rude enough to ask your age? I'm 47.

Great to meet you, hope you're ok.x

Love and best wishes to everyone else. I don't post that much on this thread but I do read and empathise. I don't really suffer with fatigue as such. It sounds vile. For newly diagnosed sufferers do read about pacing, it's very sensible.xx

Hi Matilda,
I have sat down with kids in pj's as I know I will fall asleep soon ( hopefully). I am waiting to take this evenings tramadol and amitripyline. I also have co-codamol to take as a backup but won't take it tonight. My eldest has gone on a sleepover but is a bit reluctant. Bless her she worries about me and if I'm ok. She is only 9 and I feel bad that I have had to ask her for help especially when they were younger. My mum died when I was 9 and I had to take on a more adult role in my house. I always promised myself if I had children that they would be kids and it hasn't turned out like that.
Anyway I am lucky that they are good kids even if they don't get out to the park or on bike rides as often as they (or I) would like.

I am 40 by the way.

My friends wanted me to go out tonight but I said no as I feel down. They will all get bladdered and I will get stressed about not having a seat. So one was trying to organise a meet up and suggested they come round next Friday to mine and bring a takeaway. Sounds ideal? Except my stress levels immediately went up as the house is such a mess. I was already counting up how long it would take me to make it presentable. I swallowed my pride and told my friend why. She is so good and said straightaway but we just want to see you we don't care about your house. She then offered to come around one day and help me tidy. And she does mean it. But I still said no .
The next time I speak to her I am going to explain about the spoons!

Hope you all have a peaceful weekend

Always my house is a mess at the moment. It always is but is extra bad because we have been on holiday (spoon shortage and lots of putting away) and the washing machine has gone on strike ( with wet washing trapped inside, and dirty washing piling up). Waiting in for the repair man means I will have to miss a regular meet up with friends, who suggested coming to mine!! I could not cope with that!!
Altogether Andrews I agree that investigations are needed. Perhaps ask for a referral to rheumatology (since you have joint and muscle pain). If after testing for all the other things that could give your symptoms you get a Dx of CFS or fibromyalgia (FMS) then if you are a techy type of person then the book from 'Fatigued to Fantastic' by Teitelbaum may help you. Its very medical and technical, and is really designed for drs to help their patients. There are ways forward for CFS. I am a lot better than when I was first ill - I guess I am 4 years ahead of you. Taking magnesium has been helpful to me- either as a supplement or across the skin via a regular bath with a cup of Epsom salts thrown in. (Hug)

Hi all!

I have finally caught up with the whole thread so am settling back in. Again, I'm sorry I just wandered off before. I think I just wanted to avoid dwelling on the CFS for a while. And then when I'd been away for a while it was harder to come back. I'm like that with keeping in touch with people IRL too.

I'm glad (well, as glad as I could be despite the reasons for people needing this thread) to see so many new people here for support.

By way of introduction (if you already know me feel free to ignore :o), I'm 26 with a 4yo and 6yo, and have been unwell since Jan 2011 with CFS. It was mild at first - I just kept putting it down to getting used to being a working mum. I had to start work PT as my DH got a back injury (prolapsed disc) and had to stop work. I eventually went FT at work (library, so can be fairly physical) and that's when I ended up with my first epic flare up, thanks to a chest infection that stayed for 7 weeks. I then finally started realising how my tiredness was actually beyond normal.

DH had his operation nearly a year ago now and I had another relapse, and was finally seen by specialists at St Barts Hospital in November (I was very lucky to be referred there given that I am in Sussex). As well as CFS I was dxd with POTS, which I think I had since my teens (but I always just thought I was pathetic/unfit). In the same week I was also seen by a psychiatrist in my town, who I saw because I have a lengthy history of MH problems (was abused in childhood as well and spent 4 months in a psychiatric unit for self harm as a teen). He provisionally diagnosed OCD and also said that the MH problems have hugely contributed to the physical burnout because my brain just won't stop. I was supposed to be referred to a psychologist but haven't actually heard anything - but I'm having psychological help from St Barts anyway so I'm not in too much of a hurry.

Anyway, I have tried working FT since then but it is just impossible, so I have now reduced to 3 lots of 4hrs, spread out over the week.

I've had a (mostly) good summer and have 4 sessions of individual treatment under my belt, I'll be back later to tell you all my news as my brain hurts now!

Spoonage to all xxx

Always, I'm with you on nights out. I just don't do it unless to a friend's house. But...social isolation is a terror and leads to depression, more pain and all spinning out of control. So please, please call your lovely friend and accept her offer. Do a bit of clearing up, have a natter, discuss Strictly. Whatever does it for you. Text or email your gang and tell them you feel crap, can't have a late night blah blah but yes please, come over with a takeaway and wine.

My friends and family have honestly saved my sanity. My social life is largely coffee dates and very gentle walks but it's good.

If you keep refusing any help your friends will begin to despair. Turn it around, you're fit and well, your mate is suffering but refuses sincerely offered help. Hard isn't it?

Sorry about your mum btw. I bet your kids are having a great childhood.x

I call friends on the phone while lying down.

I also make sure to text occasionally.

I plan in an hour long visit with nothing else that day if I'm bad.

Spirits must be kept up.