Spoons! Support for those with chronic pain & fatiguing illnesses

[Grockle]

Spoon Theory here

Thanks magso I will look that up :)

I am sooo tired today, I did 3 days in a row (4hr shifts). The last day was ok as we had meetings so much less actual work! I went to the cinema with a new friend after work on Friday which was great. It turns out she also has a fatiguing illness so we really understand each other :)

Yesterday DH had to go back to tesco after doing the shopping to return something and he suggested we all go if I was up to it. I said yes as I would have today to rest. It was a bus ride then 10mins walk, it was really nice to go out and spend time with DS (DD was at a friend's house) but I fell asleep at about 8pm on the sofa and slept through til 5.30! It really wore me out.

I hate that I can't go on anything bigger than a trip to the shops. DH noticed a new offer on cheap bus trips to Brighton - we love it there (we got married at the hotel by the pier so it is very special to us) but my instant thought was "I can't do that." Fear is ruling my life.

Hello. Could I join? I've been lurking on these threads from the outset but have never posted... for the past few months I've mostly been managing to keep on going through the fatigue and pain.

Today I'm struggling to get around the house, and my hips and knees and ankles are killing me. All I want to do is lie here.

Hello

Hi AFabLatte and welcome although sorry you are suffering.

Smiling how are you since your op?

Fuzzpig wedone at surviving 3 consecutive days at work and an evening out. Its good to have a freind who understands!

Grockle how are you?

I am slowly reading my new book (from fatigued to fantastic) which says liquorice is good for the ?hypothalamus gland - (the one that controls all the other glands and gets dodgy in CFS I may have mixed up the names)so I am pleased as it gives me excuse to eat liquorice even though I would like to loose weight. Sunshine and liquorice all in one day! The other thing I splashed out on was a bag of D-ribose - a sugar (for making? RNA again I may be mixing words up -it made sense when I read it - lieing down) which has arrived and I have been putting it my (caffeinefree)tea . Has anyone else used this and more importantly has it helped you feel better? I survived an extra long day at work.

This thread is suddenly quiet so I hope its because the warmer weather is helping the missing posters accesss some extra spoons of energy.

Oh magso let me know how you get on with your alternative thingy ma bobs!! im tired today and back to work tomorrow for 5 in a row!!! i need to get used to it its my contracted hours, but its tough...

is anyone else cold even though its sunny ive got heating and fire on DP has had to go for a walk he said he felt sick he was so warm.brrrrrrrrr bot me

Fuzz i have the same fear as you, although its the fear of the next day or week....... after i have done something... it was my mums 60th yesterday and we had a little afternoon surprise party, as it got closer to the day i was panicking about how i would cope... how crap is that, it was only 3 hours with family and mums few friends....

we are going abraod in a few weeks, and again i am dreading it, last years holiday put me in bed for a month!!! so now i feel bloody miserable cos im spoiling it for everyone else, and we havent even gone, the kids are so excited!!!

Hello Grockle if your lurking..xx

spoon to you all
xx

Tiredness definitely makes me feel cold, almost irrespective of how warm it is outside.

Thanks for the welcome.

Welcome breast milk :) sorry you're having a hard time at the moment (not that there's really any easy times with these types of illness but you know what I mean!). Hips and knees are my worst bits at the moment too, along with wrists and elbows.

Magso - can't say I know anything about those foody things! I did get a book at the library though as it caught my eye, all about 'superfoods' - it's a bit OTT I think, but it does have info about the various elements in different foods and their effects. I figured as I am having a really odd time with my appetite lately - so much that I even wondered if I was pregnant! - focusing on including some of them (and I do really like most of the foods listed) might lift me a bit.

I got a letter from the endocrinologist I saw last week. I must have completely switched off because I don't recall him saying most of what he said in the 2 page letter. As I have a goitre, low T4 and 2 autoimmune disorders, I have a tendency to autoimmune thyroid disease so I should be monitored which to be fair to my GP, is what they said but I wanted reviewing by a specialist.

I have to have a load of bloods including a test that I googled for Addison's disease. I thought Addison's was serious, so I'm not sure. I do recall him whittering on about cortisol etc. Does anyone know about this please?

Hi Breastmilk I remember you from a previous one of these threads.

Hi crashdoll Yes, I've been tested for Addison's, though thank God was clear. It's essentially low cortisol caused by adrenal failure... and whilst serious it is relatively manageable with steroids etc. From my googling there seem to be a lot of people out there though who dont fit the medical criteria for a diagnosis but regard themselves as having 'adrenal fatigue' and using a lot of alternative ways to alleviate it. I should find a job as a google consultant..

Crashdoll I have heard of it, but that is about as far as it goes. Its when the adrenal glands are not producing enough ?cortisol, so it is given in tablets (cortisone) instead. Its good it is being checked. There is a theory that CFS/FMS and other fatiguing illnesses have a subclinical (milder non critical) reduction in adrenal function. Sounds as well you asked to see a specialist.
What I am waiting for is someone to discover that chocolate (or something equally decadent) is a cure for all our ills!

Actually magso dark chocolate, over 70% cocoa is suppose to be good for M.E./CFS so feel free to eat away.

Interesting about the liquorice, I love that stuff anyway.

So I can eat liquorice and dark chocolate! Nothing but the best! The liquorice has to have proper liquorice root in it.Actually I rather like liquorice tea (magso adds that to her little list).

Don't go OTT on the liquorice - in large amounts it is a laxative and can also be hallucinogenic (so I hear anyway, I don't actually like it)

I am annoyed at being awake. I fell asleep early on the sofa again and just couldn't face dragging myself upstairs.

I am getting a cold so I'm pissed off. Lots of people at work have colds ATM which means I will look really bad if I go off sick, but people don't get that a cold for us is so much worse as it aggravates other CFS symptoms.

Weird question time - when you get a cold do you get a pain in the roof of your mouth? (Sorry if I've asked before.) I do at nighttime, it's like somebody pushing a blunt instrument up into my soft palate. It has me reaching for painkillers instantly and it really messes up my sleep.

Crash I was also tested for ad disowns and was all clear.
I think it's just another one of those ruling out tests

Can I ask a question? Do any of you sometimes feel like or worry your just being lazy?
I've woken up this morning feeling really restless like I have lots and lots of energy, yet I'm led in bed because I ache and am tired. What if the consultant was wrong? What if its just laziness? :(

Hi crashdoll I'm being tested for Addisons on Thursday, my gp has been pushing the endocrinologist to arrange it for a year, I think he's only doing it to shut her up as he isn't interested in finding out what's wrong from the very first appointment I had with him he's been saying it's cfs, he's never even examined me!!! Because my non functioning thyroid seemed to fix itself he just says there's nothing he can do

Beebies I think the fear of being thought lazy and not saying no when I should have done is half the reason I got ill! Accepting that I am not lazy but ill has been a turning point for me.
Thanks for the warning about too much liquorice Fuzzpig. It is not something one could eat a lot of -unlike chocolate. I didn't get pain in the roof of my mouth with a cold, but I now have nerve pain there since my sinus/septum op irritated the nerve, (which is worse in the cold) so I suppose the nerve must run through the nose, so is perhaps irritated by a cold.
Breastmilk sorry I crossposted with you (never remember to update). Hope you are not in so much pain today.

Ah, that's really interesting about the nerve pain due to sinuses. Nobody else I know gets the same pain during a cold. My sinuses do seem to get blocked very often. I am also wondering if getting sinuses/tonsils fixed would help my snoring I think I end up with sore throats so often because my nose is blocked therefore I sleep with my mouth open. I do have a steroid spray from the GP as he said my nostrils were inflamed, it did help the snoring a bit but when my nose is at all blocked it doesn't work.

Dreading today. Got to cancel my GP appt because DS has speech therapy, so that's a 4 bus round trip to the hospital and back, then drop DS at nursery and walk back (less than a mile but uphill), brief rest at home then off to work for 2.30-6.45.

I'm not sure if I've been tested for addisons. I know my consultant was happy that everything that needed to be ruled out had been tested for though. I got tested for cushings which is another hormonal disease because an endocrinologist noticed my horrendous stretch marks (I did tell her it was just because DS was a huge baby!)

Beebies I do sometimes wonder if I'm just unfit or lazy. I was never a really active person. The first 18 months of my illness I spent thinking I was just struggling to adjust to being a working mum, and that working more would make me fitter. But it didn't, and that's how I remind myself I am really ill - if I was just unfit, doing physical jobs at work would increase my fitness over a long period as I got used to it - but it hasn't. It causes a lot of pain that goes way beyond normal 'not very fit' muscle aches.

Thats interesting that others think they may just be lazy or unfit. I think this all the time although I was a very active person before I got ill. Part of me still thinks they are wrong and it isn't CFS/M.E. and there is something they are missing that can be fixed. I just don't really believe I am ill, even though I know I am because I feel like shit and I can't do half the things my friends can do, even the unfit ones! Its been 11 years and while I do know I am ill, I still struggle to really accept it and that this is my life.

I get mega sinus problems! I take beconase before bed each night, even missing one night is fatal and I get really bunged up. I snore badly (DH sleeps downstairs now and can still hear me sometimes) but I don't sleep on my back so thats not the cause, I am not over weight and I only drink alcohol about twice a year so its none of the usual causes.

Does anyone think it is worth asking my Dr to refer me? I was diagnosed 11 years ago, I get my bad sleeping managed by my GP (the GP I have isn't the one who diagnosed me, that was at a different surgery).

I have been looking on the net and it seems there may be a Dr at my hospital who specialises in M.E./CFS although I am not sure if he is still there, there are various dates but his profile is on the hospital website. There is also team based in my county that deals with it as well. I saw them before for a group thing that taught us more about the illness and managing it. I think they may do other things as well though but you have to referred to them through your GP. Would any of this be worthwhile or just a waste of time?

Hi everyone, I have been reading this thread every day but have been too exhausted to type anything until today :(

The similarities between us all is alarming? for want of a better word!
I also have sinus/nasal problems and at the moment I am producing a lot of really hard mucus which I have to blow out of my nose several times a day. I also snore really loudly sometimes I even wake myself up!
Also the Addison's things is quite worrying too, I've just googled and have a lot of the symptoms including the salt craving. Is it worth going to th GP and asking to be tested? I had very low BP while I was in hospital a few years ago with suspected GBS.

There is something before addisons called adrenal fatigue. It's actually not recognised in the uk, and comes under cfs. But it's the same as cfs in tha there is no cure. Try googling that and see what you think. If it sounds familia then yes I think you should try and get the stress test.

I didn't even fully realise my sinus problems are to do with cfs :( I have thick gunky mucus every morning that's horrible.

Crap bag I'm in the middle of chasing up a referral I was promised 9 months ago! Which is your local hospital maybe someone here could help with the might not still be there question?

Gallifrey, its worth asking your gp to refer to the CFS lead specialist to discuss with him/her. There might be new approaches that were not available 11 years ago that could help you. I did a mindfulness course which I think was helpful to the others on the course although perhaps not to me (awkward me). I think that while NHS and traditional doctors do not treat adrenal fatigue (as opposed to the more severe addisons) there are I've read things that can be done by holistic practitioners to support the adrenals.
It is strange that so many of us have similar symptoms.

It's a long complicated story which I won't bore anyone with again, but after spending 3 weeks in a neurological unit 3 years ago I was sent home undiagnosed and in a wheelchair. Guillain-Barre was mentioned along with MS and Cauda Equina syndrome. The neurologist saw me for about 2 minutes and said I was depressed! I had been for a ride on my horse who rather than walk through a puddle had ducked under a spiky bush and I had big scratches all along my left arm which I suppose he thought I had self harmed (even though I said what had happened!) In the end I was sent to a rheumatologist who diagnosed fibromyalgia, I had 13 trigger points. I don't think fibro comes on with such severity that you are riding your horse one day and the next you are in hospital paralysed from the chest down and incontinent :(
I started seeing a chiropractor a few months ago who sent off my MRI scans and was shocked at how much damage there is to my lower back (L5 and S1) and said the herniated discs are pressing on my spinal cord and I need to be very careful. However that doesn't explain the fatigue and nerve pains and incontinence. I would love to get to the bottom of this, I was so active before and now can't even walk to the end of the road.