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/

Yes moods are very intricately linked to physical symptoms IME! I can get very tearful when tired and in pain. Recently I have felt like I am permanently PMSing.

Found out I have a UTI today, bit nervewracking as that's what seemed to start the CFS initially. Also got referred for an ultrasound as I've had a few odd gynae symptoms :(

I've started to realise I can actually tell how fatigued I am by my thoughts even if my body is trying to keep going....irritable means I need a lie down soon, teary means I needed a lie down yesterday.

Definitely know what you all mean with emotions and fatigue/pain levels. Yesterday evening I sobbed, a deep hard cry for an hour. The pain was too much and I felt beside myself with tiredness but couldn't sleep. I also can't shake the feeling that I'm letting everyone down. dMIL has been fantastic (thankfully only live 2 roads away) but dFIL has M.E too so she has her hands full there and although she wants to help I know she feels torn.

Today ds1 went to after school care (he's been begging to go as his best friend goes) at the same nursery that ds2 is in this week. It's virtually at the end if our road. My friends then took the boys until dh got home. They had a fab day and ds1 is loving nursery so so much I am missing him like crazy but I know after this emergency care is finished that I will look at booking him in their part time for my own physical health.

Fuzzpig I hope that your UTI goes soon. It's horrible and emotional links to how everything started is hard to deal with

I now have a referral to OT and physio and we are looking personal payments. Does anyone get these? Do any if you have a PA?

My dad moved in after my mum died as he was incredibly lonely. He has a part time job but he has ended up becoming a part time carer to me. He can't claim carers allowance though unless I am awarded DLA! It's the amount of energy needed to even apply is energy sapping

Ds1 has had a bad week health wise and has fallen asleep after school every day at about 5pm. His pain levels have increased and he has needed more dihydrocodeine. I know in going to need more energy to help him fight. I want to take his pain, he is 6, it's just not fair that he has to have these worries

Do many of you get tachycardic? I have been tachycardic since I was a child, which is when they think my fibromyalgia started. The drs keep doing ECG's but just say I'm weird they try and link it to my higher blood pressure at the moment, but that's only been an issue since ds2 was born!

I've been away for a few days.

I have a job interview today, for a full time job, much nearer to home. At the moment I'm commuting 8 hours a week, so I'm hoping that even though the job is more hours, I'll be able to manage better, as I can walk to the office in minutes.

I'm a bit worried about my sick record being brought up at interview though. I apparently have to pass a health check to get the job, so I'm not going back to the gp yet, so I don't have a chronic health condition on my record.

Korma, what time do you take it at the moment? I take mine (50mg at the moment, moving it up to 75mg this week) at 7pm and that let's me get the boys up for school by 8am the next morning without feeling too "drugged"

Altogether that's great, hope the job interview goes really well

I got the job!

So now I need to fill in a health form, but I think that should be ok. I hope so.

ME/CFS people, here are the Christmas card photo competition finalists, vote by Sunday midnight which ones should be sold in aid of ME research.

Yay altogether! Congratulations!

Korma I am glad you have a firmer dx now. I take my ami, 40Mg at 5pm. Earlier than that means I get no evening!

Mega achy this eve, muscles have tightened so much I can't straighten my legs!

I was going to say bringing it forward to 5 or 6pm would still arouse you from your "coma" at about 8 or 9am.

I can't remember if you said what dosage you take? I know the GP said that its like walking a tight rope, finding a dose that helps with the pain but doesn't comatose you :)

Altogether, huge congratulations on the job

I take my amitriptyline at 8. I find if I have to get up early for work (5.30 ) I'm ok but if not I can't seem to get up until 10 or I feel hung over. I'm lucky that dh has taken over the role of getting kiddies ready and off to school that I can stay in bed.

oh and well done about the job.

Oh korma, you have my every sympathy. I have psa but not fibro and I struggle with fatigue etc. I'm currently on methotrexate but on antibiotics for an infection so had to skip it this wk. There's so many times I've sat down with the kids just to relax and I've started drifting off! My pain is ok at the minute so I can manage ok. Is amtiriptyline a fibro drug?

I was asleep before nine on the sofa last night so much for a nice evening with DH eh! Did a lot yesterday, both school runs and work in the middle and took the DCs to the park (taxing, but better than them going stir crazy stuck indoors) and I'm in a lot of pain this morning. A shame as we were all going to go out (to a bus depot open day... DCs very excited) but I'm crying off to rest.

Icant - amitryptiline isn't specifically a fibro drug, it is actually an older type of antidepressant (tricyclic IIRC). However due to its effects on the brain, it has proved every useful as a painkiller in lower doses, and is often used for that purpose instead, especially for chronic pain/ME/fibro, and also migraines. (so it does not mean you are depressed if you are prescribed it)

Korma, good to see you have a further diagnosis (although obv not good that you have to have it!) we were both diagnosed at pretty much the same time i think? I'm waiting for another rheum appt to discuss my possible hyoermobility (as i said on a pnothe thread, but cant remember whihc one, told the gp and she siad its already in my notes!) and yesteday i had a call that they need go redo my blood tests for my sulfasalazine check, so now worrying whats up!

I'm on an oldy tricyclic too, lofepramine for me though. Dr did say when i was given it thet it can help long term pain, but also have had depression for years anyway. But then is that actually because of the pain or a seperate problem? Who knows, lol!

Kids have been up at 5 last two mornings, so i fell asleep on sofa yesterday. Early mornings kill me, even if I've had the same amount of sleep at night I just cant do them.

Psoriasis is flaring now too, having been quite calm all summer. So am extra specially attractive now on top of not being able to move!

And i am rather irritable, probably not helped by being massively overtired. And I grt very "woe is me" then, hugely annoyed any time anyone mentions any sort of minor health issue and feeling sorry for myslef that I'm so bad, and mad at them for being so whingey when they have no right to whinge

Sorry about particularly shit typing btw, swollen fingerrs plus changed keyboard for ipad update equals nonsense

I've randomly fainted since i was a teenager, no proper diagnosis after oodles of tests and years of it happening. Until i was investigating hypermobility recently and saw POTS, which i am 100% positive is what it is? Although That could also then point to cfs too, which people have joked about me having for years ( not funny!) but can cfs even be diagnosed after psa? Cause surely all cfs problems would just be attributed to the psa?

Hypochondria (along with actual diagnosed problems already) is not good whencyou also add a bit of medical knowledge!

Beyond According to a top neuropsychiatrist (whose name I cannot recall), CFS/ME should not be diagnosed alongside other conditions that cause fatigue such as; depression and inflammatory autoimmune conditions. However, the reality is that many doctors will diagnose CFS/ME when the fatigue is very likely caused by a different condition. I was diagnosed with CFS and refuted it and eventually, it was undiagnosed and my rheumatologist agreed that the fatigue was caused by uncontrolled inflammatory arthritis. To prove my point, I am on an anti-TNF that is already easing my joint symptoms and guess what, my fatigue has eased too!

korma I am on amytriptiline and started on 10 mgs with a view to gradually increasing to 50mgs. I've never got beyond 20mgs! But, it does help with night pain and whilst I do sleep very heavily I do sleep...I am fine in the mornings now, though do have to drag myself awake. So do give it time, the morning hangover feeling really does improve.

Another one on amitriptyline, I started on 10mg and GP told me to take it 12hrs before I get up so I take it at 7pm, however 10mg is too much for me as I turn into a total zombie.. I now only take 5mg at 7pm and that helps me sleep but I'm able to get up with the children at 7am. Korma -try taking it earlier and see if that helps but if still struggling then ask if you can reduce the dose - everyone is different and you need to find what works for you.