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/

Stop getting on to you!

Hello, raggedy. Several of us on this thread have found acceptance to be key to improving our quality of life. This means accepting (rubbishly low) limits on activity, accepting many trips to doctors and specialists, accepting help from others and being sometimes pathetically grateful to have it.

Some posters on this thread have virtually no help, no partner, no family nearby, etc so I am always mindful that although it SUCKS to ask another mum to walk the kids to school for me, sometimes that is how it is and thank god.

It also means accepting that some people won't get it, won' t want to get it, and will say the wrong thing. Doesn't mean I have to like it, but I have to let it wash over me as I am too busy managing my illness! I'm a good person who is ill, not a malingerer...and I avoid anyone who thinks otherwise.

It does NOT mean believing life will be like this forever.

Hi all, so after another barrage of blood tests, there is still nothing except inflammation marks been slightly out..........so WFT is causing there horrific day and night sweats ( and its not the weather is been going on for a long time!!) oh and any advice on weight loss..i have put 3 lb over the weekend.........if I had piggedout great, but I haven't!!!!!!!! imnot happy :(

Yes, I did pony trekking & it nearly killed me! Combination of riding & a psycho pony but I won't be jumping on a horse any time soon. Welcome to your new home, Gallifrey.

Raggedy, I am phone-phobic too. I HATE speaking on them & I minimize symptoms too. Bonkers!

Belle, I've had awful day & night sweats. No idea why. I have photos pf me in a bikini on the beach in 30 degree weather with goosebumps. I have put on 1/2 a stone in the past 2 weeks

I took DS to CHessington today. I'd not have managed it without the Fast pass tickets I bought but we had a fab time! The drive was hard (almost 200 miles round trip) & I am shattered. Not asleep though, despite zopiclone

Matilda "Candy, love your new name. Hope your new treatment helps, can you say what it is? Please don't if you don't want to. I'm just nosey and am a relative newcomer!"

Thank you. :) It's fine. It's an anti-TNF treatment for inflammatory types of arthritis called Cimzia. My clinic have told me it had positive results, so I am feeling cautiously optimistic.

Belle I also pile on weight like there's no tomorrow. I'm very inactive which I think is part of the reason. Do you drink enough fluids? If I don't drink enough, I retain huge amounts of water.

Thanks again, you're all so nice :)

DH and I talked again last night about registering. I think we may do it soon; I'm afraid I haven't asked him outright yet to phone for me, but I might soon. He doesn't like phones either, but not to the extent I don't. Another thing that is holding us back is that there are 4 different surgeries to chose from, and I don't know which to pick. I found some contact info for an ME support group near me -- would it be too weird to email that person and ask for recommendations as to what surgery or GP would be the best for pursuing fatigue issues?

belle, I don't know your backstory, but I also used to have awful sweats! Night and day -- I used to bring a change of clothes with me to work and wipe down in the bathroom with damp paper towels when I came in, because my clothes were soaked with sweat just from the morning commute, even in the winter. It turned out to be part of a dysautonomia which is now controlled with medication.

It's only recently that I've learned dysautonomia is often comorbid with ME, although my fatigue issues have only been for the last 4 years and I've had dysautonomia for 15, so I don't quite know what that means for me.

Raggedy, my back story is ME, was diagnosied about 5 years ago, but probably had it 11-12 years, the GP thinks it might be medication based, but I have messed about so much with my medicines im scared to change again, I have taken tramadol today instead of co-codamol, but I just don't think it works, I will persevere for a few days, I have also stopped my duloxetine. I cant take extra clothes into work unfortunately so i spend my whole shift hot and sticky, which makes matters worse im sure...

I don't think I drink enough at all, i feel it swishing inside me...... i am also inactive ( id love to walk like i used to) thanks to ME and the fear of a week in bed i don't do much other than my daily needs......... it makes me so sad, 2 years ago i weighed just under 10 stone, i worked so hard to get there now im just over 12 stone!!! i don't think i eat that unhealthly, and often go for healthier option in everything.........i hate ME!

funnily enough I decided to take a cocodamol this morning instead of tramadol, I was in agony I could really tell the difference :( I took some tramadol at lunchtime but it's not really made that much difference. Wonder what else I can take that is stronger than tramadol if I'm still in pain after taking it. Morphine next I suppose. Or just put up with it!

Belle - duloxetine made my sweats a million times worse & I had to stop taking it.

We've had a home day today - am shattered & fell asleep on the sofa.

Am on an activity holiday. What in the name of all things green and lovely did I book this for? I thought my new meds would help give me the energy I needed, but have woken just as tired and frazzled as I as last night and meds have not touched it. Have kayaking booked for me and DCs in a couple of hours.

[http://www.mumsnet.com/Talk/_chat/1815602-Do-you-get-fed-up-with-people-saying-they-are-in-chronic-pain?msgid=40619940#40619940 Lovely thread here]] about dealing with people (us!) with chronic pain.

Ooh hello! Didn't realise you were all over here, thank you Grockle for putting the link up.

Lisad I can't really help but had similar findings myself. CRP is I think found when there is active inflammation but is not specific to the cause - so it could be anything that the body is dealing with (ie infection/injury/ inflammatory illnesses). The ANA test - used to recognise Lupus can also be slightly positive with inflammation without nessesarily being caused by Lupus. At least that was what I was told. So I think positive results are often taken with a pinch of salt by specialists looking for particular syndromes. Hopefully they will investigate further.
Sorry you are feeling so poorly. It took me a long time to recover from my long stay in hospital with pneumonitis.

Hello Lisa, welcome! Sorry, I can't help with the question about CRP levels.

I can empathise about feeling crappy, though, as I am also feeling crappy today too.

How did you get on at Legoland, if you don't mind me asking? I always found it hard just to walk around there watching DCs and DH doing things. Exhausting, and well beyond tired at the end of the day. Hope you have the chance to recharge today (and tomorrow if needed).

Hello murderofgoths how are you? Hope you are having a relatively good day today.

Bit of a mixed one today, think I slept funny and aggravated everything. How are you?

Signing in again

I was on one of the other threads, but lack of MNing means I've dropped off, but Grockle has reminded me you are here

Mixed connective tissue disease with symptoms of mainly lupus but also myositis and scleroderma. I'm sun sensitive, so the recent hot weather is killing me and have just had a horrible flare up which was nipped in the bud with depo-medrol. Struggling a bit with the holidays as I want to do stuff with the kids to alleviate the boredom, but if I do too much and then go to work in the evenings, I am totally wiped out.

So, are pain management courses any good? Our GP surgery runs a short course for people living with chronic pain, which they mentioned when I was diagnosed two years ago, but my pain levels are normally not too bad and I have been trying to be in denial about the whole chronic illness thing. However, that last flare up has been the worst from a pain point of view (normally I have skin issues in the main) and my pain levels are getting progressively more pronounced and the GP mentioned the course again...

LisaD, have they tested for anti-RNP? I have high ESR and CRP but Anti-Sm (specific for lupus) is negative but I am positive for the anti-RNP which led them to the mixed connective tissue disease dx which is an overlap of lupus/scleroderma/myositis. I'm being treated for sero-negative lupus though as my symptoms are mainly lupey. They are certain it will progress to sero-positive lupus in time, but said that as I got my dx quite early on in the rheumy journey, I'm still in the very early stages of my disease.

Lupus apparently improves after menopause though. Never thought I'd welcome menopause, but bring it on

I woke up cold and depressed and meds had no effect.

Eventually worked out that am feeling this way due to illness and it might not all be completely DH's fault, and divorce (or whatever) not likely to improve my day. (I can joke now, but it is hellish to be feeling it). I am slowly warming up and beginning to feel like I can risk a shower and getting dressed.

Managed to convince DH to take my kayaking slot and I am hoping to summon the energy to buy warm clothes. I feel whatever I do today, I may be borrowing spoons from tomorrow. DH does not understand this idea. He seems to want to take each day as it goes and needs a new explanation and discussion every day.

Can't stop crying, but at least I am not having unwanted negative thoughts.

All this for some walking around, a swim 2 days ago and sitting in a rowing boat for a bit yesterday.

korma, have you tried low dose amitryptiline? I was prescribed 20mg at night and it does help enormously, but it makes me very sleepy and a bit zonked out the next morning. I'm fine if I take it at about 8.30pm and in bed before 10, but I work evenings until 10.30 so if I take it when I get home, I can't get out of bed when DH goes to work next day and the kids wreck the house if not directly supervised! So I don't take it.

yegods, I would just do a couple of days of relaxing and let DH and the DC do the mad activities! I'm much happier on the sidelines these days. Sorry you are feeling so grim; it is such hard work

for those with ME, CFS

www.investinme.org/Rituximab%20news-July13%2001.htm

we need this drug trial to happen. I don't want to spend the rest of my life ill.