Mumsnet has not checked the qualifications, experience, or professional qualifications of anyone posting on Mumsnet Talk and cannot be held responsible for any advice given on the site. If you have any serious medical concerns we would urge you to consult your GP.

Spooning into summer - life with chronic pain & fatigue.

(1000 Posts)
Grockle Sun 14-Jul-13 07:58:50

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

jan2014 Mon 14-Apr-14 19:28:19

ah thanks! i am so glad you were persistent and were listened to. see you on new thread smile

murmuration Mon 14-Apr-14 18:00:58

Jan, there aren't many posts left on this thread, so do head over to the other thread (here) for more support!

Your story sounds a lot like mine -- I finally got listened to this autumn. I emphasised how it had been going on for years, and how much less I am capable of doing now than evidence shows I accomplished 6 years ago, and I talked about how I had a lowered quality of life. Be persistent! Good luck smile

jan2014 Mon 14-Apr-14 15:45:11

hi there. ive had awful fatigue for a long time now (a few years) and going to docs on wednesday. they always fobbed me off before by blaming it on other things, but those other things aren't an issue any more and its still there and getting worse. i am really hoping they take me seriously... if i exercise at all, or had a busy morning or whatever, i can barely function later. my heads sore. i get brain dead at night. i know what i am feeling can't just be normal stressors, i just want it sorted out, i know theres no cure but at least a diagnoses would take the pressure off.

candycoatedwaterdrops Fri 11-Apr-14 19:57:11

"Biologics do not raise cancer risk more than DMARDs in RA"

This will probably apply to all autoimmune diseases that use similar drugs e.g. Lupus and Psoriatic Arthritis

www.medscape.com/viewarticle/770848

Grockle Fri 11-Apr-14 18:55:28

Welcome candy and onlyjoking

Beyond... you have a point. I don't think of myself as disabled despite having a blue badge & registered disabled card from social services hmm

I have had a mini-breakthrough this week... I have a mobility scooter. I did this back in October but felt like such a fraud using it. I've been so ill, so fatigued & so bloody useless, I was dreading the Easter holidays. I hired a scooter so I could still 'walk' the dog etc. The first day, I took the dog out for an hour then slept for the rest of the day but as the week has gone on, I've done more. Even 1/2 a day at Longleat & half a day at Legoland. There is no way I could have done either of those without help and it was fabulous to be able to zoom about. I'm tempted to buy my own! I'm still resting a lot because I have no choice but I am pleased to have managed a few things.

Hope everyone else is ok.

BeyondIsBloodOfTheDragon Fri 11-Apr-14 12:45:13

Welcome onlyjoking

I'm owning the disabled label grin you know, like minorities claiming back insults? I am not ashamed that my body doesnt work, so will refer to myself as such (not that i mean those who dont identify as disabled are ashamed! Hope you dont think that!)

Off to placemark the new thread

candycoatedwaterdrops Thu 10-Apr-14 22:25:14

I'm not a parent yet but I'll try to remember to pop in.

Grockle Thu 10-Apr-14 21:49:15

New Thread Here

I put it in disabled parents but can as HQ if they'll put it back in general health if we prefer.... what do you all think? I wonder if we'll get found over here. And, for the mostpart I don't think of myself as disabled even though I am.

Welcome onlyjoking

onlyjoking Thu 10-Apr-14 20:55:14

Does anyone here mind me joining your long running thread?

BeyondIsBloodOfTheDragon Thu 10-Apr-14 20:39:43

Korma sad
Mtx is not agreeing with me either, just took my fourth dose and although its not as bad as last weeks one, i'm constantly dizzy. And sicky on waking - feels just like morning sickness! its not morning sickness not noticed any difference at all with my joints or my psoriasis though.

Have spotted a new fun side effect today though. Warts on my fingers. Attractive...

BeyondIsBloodOfTheDragon Thu 10-Apr-14 20:34:15

What does anyone think of putting the new thread in disabled parents? It has ridiculously low traffic, I thought we could help it out? Plus it'll be easier to find as it frequently drops off the first page in general health?

CFSKate Thu 10-Apr-14 19:20:56

Have a new thread ? This one is almost full

Hi candy thanks for replying

Yeah it's mainly the cancer risk that scares me, also the fact that they really don't know the long term projections for these meds. They are still so new and I'm scared in twenty years time there may be serious issues

It was healthcare at home. It just all happened so fast I didn't really get time to talk it through with anyone and the rheumy nurse just dismissed me.

However, a month of methotrexate and I am a mess. Pain is horrendous and the swelling is back with a vengeance

I'm thinking of just taking the first shot and calling healthcare at home to tell them and get me back up and running

candycoatedwaterdrops Tue 08-Apr-14 16:35:34

Oops, forgot to add the most important bit, for me - the risks of anti TNFs, on balance, were better than the risks of untreated and uncontrolled RA. Given that I'm only 25, I freaked out about the increased risk of cancer - it's actually only a very small risk and uncontrolled and untreated RA also has a slightly increased risk of cancer, so that sold it to me.

candycoatedwaterdrops Tue 08-Apr-14 16:23:02

Korma What is worrying you the most? We're all different but for me, I have sustained joint damage while 'failing' on every DMARD - including various combinations - for 4 years. I was in clinical remission on my first anti TNF cimzia and it was just unbelievable. People commented how I seemed a different person just because I wasn't in so much pain. Even though I was vomiting daily, even that was better than the constant grind of RA. Although eventually, it became obviously that it wasn't easing up and a gastroenterologist told me I had to come off cimzia. Was it Healthcare at Home who delivered them? Have you spoken to them about your worries?

Candy I've failed methotrexate too now and am supposed to start humira

I have the pens at home but have told them ive changed my mind. There is just too much unknown about it for me

However, I'm now in so much pain and my joints are so sore and swollen that im thinking "feck it"

It's a rock and a hard,place. No meds and pain and deformities or meds plus terrible side effects

magso Mon 07-Apr-14 19:49:48

Murmation, it took my home help a while to cach up on the cleaning and tidying I had not been able to do for some time. Now she is able to do the important rooms ( bathroom/loos/lounge/ds bedroom) and a bit of ironing ( which I struggle to do). It makes it more manageable. I can keep on top of things mostly in between.
Fuzzpig you sound as if you are making progress, which is good. I now do a 'body balance' class which is mostly yoga to music with a bit of taichai and pilates for 40 minutes with a relaxation session at the end. I feel I am making progress, although I have to be careful when upright .
Candycoated hope the anti TNF works for you, I presume the Drs don't want to change too much at once.
Beyond I think it can be difficult to have too much change at once - at least that's what my podiatrist said. I have orthotics, and it limits footwear a lot.
I am struggling a bit at the moment. I think I've got to a point where I can do rather more and can get away without several daily rests. As a result I can over do it- and haven't stabilised things yet. Ds is on school holiday. Had to take him for a medical appointment at the local hospital, followed by the usual trip to the toy shop for his reward for co-operating- and I am barely able to walk now. So easy to over do it. And its only Monday!

murmuration Mon 07-Apr-14 15:28:46

Oh, I forgot to mention we got a cleaner! smile He's come twice so far now. First visit did just the kitchen, last time did kitchen and bathrooms. I hope that he'll be able to get more of the house as he keeps going. So far it hasn't had a big impact yet, because I've still been cleaning and that we have is a cleaner house, but I hope that once he's gotten basic cleanliness down, it will take less effort for me to maintain a state that doesn't make me ill.

BeyondIsBloodOfTheDragon Mon 07-Apr-14 13:42:00

sad not good candy.

I'm just trying methotrexate for the first time, its making me sick and dizzy. Podiatrist who i saw last week said hes surprised I've been prescribed it as a bendy, as it makes arthritis patients bendier - so can be a negative thing if you are a bendy with arthritis. Would fit, if its actually making my pots worse rather than just making me dizzy? Hmm...
Podiatrist also said hes not giving me insoles unless i am already wearing trainers all of the time. So i tried wearing them for a day and my feet were worse. But everyone knows best apart from me, dont they.

Ds2 had a birthday party at a farm, no chairs, rain and two crutches was less than fun. I need a wheelchair.

candycoatedwaterdrops Mon 07-Apr-14 12:38:16

I'm remaining averagely well. I came off one drug, so have stopped vomiting (yay!) and I'm due to start another drug (anti TNF injections called adalimumab) this week. My rheumatoid symptoms haven't come back full force which I'm pleasantly surprised about.

I've been diagnosed with neuropathic pain and I'm meant to be undergoing investigations to see if it's RA related or due to something else. I'm not taking any meds for nerve pain yet.

Up and down, as always.

murmuration Mon 07-Apr-14 12:20:57

Oh dear, fuzz, that is worrying. Well more incentive for me to lose weight!

It's definitely not my weight that's the problem -- I've weighed considerably less and still had the fatigue problems. But it could distract them.

fuzzpig Mon 07-Apr-14 12:07:10

TBH murmur I think if I'd seen a different specialist I wouldn't have even got a diagnosis of CFS. I know some places use the rules where if you are over a certain BMI you can't be diagnosed with it.

It is going to take a little longer just to get to where I was when I first got sick, but I think I can go further than that and actually get fit and healthy although obviously I'll have to be very careful about overdoing it!

murmuration Mon 07-Apr-14 11:42:46

LineRunner - they just gave me a printout at the GP's when I asked for the blood tests they took. I don't know about the specialist ones yet. I hope I'll get to see the results when I go back in three months, and I'll try asking and see if they give it to me.

I've previously had a 24hr-ECG and I was unable to get anything other than a letter from the cardiologist -- I mostly just wanted to see what 24 hours of my heart looked like, and see if I could link it to anything I remembered of that day! But it had been ordered by a Dr at one hospital, performed at another, and the results analysed by a third. They said the results at the third hospital, and they'd ask for them, but no one ever got them to me.

Good to hear you're feeling a bit better, fuzz! I am trying to lose weight before my next specialist appointment, as we worked out I gained a massive amount (still not sure I believe it...) since last summer. I really hate being so overweight! But I have a date goal, and I want to lose weight so that they don't concentrate on that as the problem.

AreYouFeelingLucky Sun 06-Apr-14 21:53:50

Hi everyone smile

Just checking in because it's been a while.

Had to tell my new job about my fibro two weeks in. It's about a two hour commute, door to door, and it was killing me. I didn't want to appear lazy. We've negotiated on how much I need to travel, and I'm hoping that we keep the arrangement.

I'm looking visibly tired, though. The days are so long - I'm out of the house for twelve hours.

I guess I'm holding up as well as can be expected! I hope you are all doing well, too.

This thread is not accepting new messages.