CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

"Then when they put ME/CFS cells into healthy people’s serum, they turned into healthy cells. Something in the serum of ME/CFS patients is knocking the heck out of their cells."

rosarainbows.wordpress.com/2016/11/25/keeping-hope-when-you-feel-broken/

Dr Øystein Fluge to Give Public Talk in Norwich on 26th January 2017

Naviaux doesn’t believe that the kind of structural damage that occurs in say, multiple sclerosis, has occurred in most cases of chronic fatigue syndrome. Nor has any intrinsic damage occurred to the mitochondria of most people with ME/CFS – a good thing. ME/CFS, he believes, constitutes more of a “signaling” problem than anything else; the mitochondria in ME/CFS patients’ cells have gotten the message to hunker down, to last out the storm. That’s left them stuck in a state in which their energy production is turned mostly toward cellular defense – leaving little energy available for other functions needed to heal and thrive. The net result is a state of low energy reserves and slow recovery after either physical or mental exertion.

Dr Naviaux is funded by the OMF. He is also studying autism.

Hi Badders I keep seeing your name about the place and I'm sorry you're having a tough time. I've been crashed out again. Completely forgot about this thread. Yes I believe massage is extremely useful, but then I don't have fibro. Luckily my DH loves massage and it does help to alleviate the migratory pain. Sometime though, my body is too sore to be massaged and needs to be adjusted appropriately.

My ME/CFS physio advocates it too and says it's important to be grounded/connected to something/someone when you're in pain and resting up.

I do hope your new drugs are helping

Thank you CFSKate for all these links. Will be passing them on. When I have the energy

Hello wood
I've got some sort of chest infection
Physio did help but I'm too ill to do the exercises ATM
It's my hips - they are twisted!
On Day 5 of no sleep so feeling rough
Love to all x

Badders I'm so sorry It's always a nightmare, but this is a shit time of year to be ill. I always feel like I'm letting everyone down by not getting up and getting stuff done.

Do you take anything for sleep, I can't recall? Could you up the dose -temporarily- to put yourself into a deeper healing sleep, or is that a stupid idea? You've probably tried it all before. Very wise not to attempt physio during this phase.

Please be gentle with yourself and scale Christmas back if you can. It's not worth risking worse health for. I think I spent 3 months recovering from Christmas one year because I overdid it. It's taken a while, but people are a bit more accepting now.

Hope there will be some bright spots ahead with your loved ones.

Love and light [hug]

Gawd I wish I could stop coughing
I'm going to end up with costochondritis again aren't I!?
Bugger bugger bugger
I did consider taking a double dose of norteiptyline last night but with ds2 ill too I couldn't chance it
I'm missing taking ds1 to see the new Star Wars film too later I am ridiculously upset by this I've been waiting a year to see it
I am sat in bed watching an old Peter sellers film to try and cheer myself up
Thanks for the good wishes
Dh has been out for more calpol for ds2
I've taken some pain meds and am going to try and have a nap

Hi.

I've not been here in an age as I find it difficult to keep up with things/people, but wanted to catch up.

A recent appointment at the pain clinic revealed it is not thought that I have fibromyalgia after all. The consultant confirmed my diagnoses stand as:
Ehlers Danlos Syndrome Type 3 (Joint Hypermobility Syndrome)
Chronic Fatigue Syndrome
Pain Syndrome (unspecified)
The pain consultant thinks it's highly likely that I already have or will develop osteoarthritis in most of my joints . I have been prescribed lidocaine patches for my knees, and am being referred to a specialist pain physiotherapist, and for a pain management programme.
I am also being screen by the psych for ASD next month.

Hello Alice
Sounds like progress? Fibro is one of those dx isn't it? I'm not convinced that's what I have tbh
Been to dr this morning - got a chest infection so am on abx all over Xmas
Missed a party and taking ds to a film on Saturday and will miss my brothers 40th celebrations tomorrow
I get quite down about it sometimes.

undark.org/2016/12/19/british-chronic-fatigue-syndrome-study-faces-yet-debunking/

Hello can I crawl quietly in been officially diagnosed with fibro for 6 months but it's been longer than that. Horrific pain in my pelvis and lower back as long with the usual trigger points/migraines etc.

The new one is a sore jaw on my right hand side I've heard of TMJ pain is this it? Sometimes it's so sore I can't eat.

I'm feeling so tired just now too and get frustrated with wasted days when I have so much to do. Putting on weight too which isn't helping me but I can't stop eating. Currently on
Tramadol and paracetamol
Pregabalin 150mg x2
Citalopram 20mg
Pzifotifen for migraine prevention and I take
Multivit
Ribose
Calcium
VitD

Oh, sweet kitty
It's so hard isn't it? You are on a lot of meds - are they helping?
My hips are really bad and my new physio has said it's because they are twisted and have been since I was pg with ds2 (8 years ago!!)
I currently have a chest infection and am on abx which are making me feel rubbish😷
I coughed so hard yesterday I put my back out!! 😳

The tramadol really help with the pelvic pain I'm not sure the pregabalin does anything apart from make me eat. I had 4 DC in less than 6 years and had SPD whilst pregnant I don't think my pelvis has recovered, a physiotherapist told me it was unstable SI joints, an osteopath said it was just a strain in my lower back.

Badders - hope you feel better soon xx

Morning everyone. Can I sneak in here please? I have no official diagnosis as yet, but just been referred to pain clinic and physio.

I've got degenerative disc disease, which has been getting progressively worse over the last few years, plus I had a head injury 3 years ago today which caused a haemorrhage and I've not been right since.

I hurt from head to toe and the exhaustion is unbearable :( I'm a single mum to a 10yo with ADHD and asd and I'm struggling to cope. I've just lost a new job during probation as I was having too much time off for appointments etc, but I wasn't coping working full time anyway. I can't sleep at night yet could fall asleep on a washing line during the day and I feel like I've got a permanent hangover. It's horrid :(

I've just had to ask ds to unload the dishwasher as I just couldn't reach the bottom rack and hadn't got the energy to bend down else there was a good chance I wouldn't get back up again. Ds looks at me like I'm crazy and doesn't understand at all, which frustrates me but he's only a kid.

I'm terrified that I won't be able to get another job - realistically who is going to want me? - but I'm also terrified of having to try and get through another 8 hour day at work as I just can't do it. I can barely even manage to get myself out of bed and showered most days.

Yesterday I changed the beds for the first time in a few weeks, as I just haven't had the energy, and I was literally crying with exhaustion by the time I'd remade them. I can't keep on top of the housework and there are piles of clean washing everywhere that I just can't summon up the energy to put away. I feel like we're living in a complete shit tip. I hosted Christmas dinner this year and it took me two days to clear up/wash up. The pots and pans are still sat on the worktop (clean) as I can't face having to bend down to put them away and. A week later, I still feel like I'm recovering from some huge exertion.

The GP keeps prescribing me different medications but I hate how they make me feel. Co-codamol makes me feel nauseous and constipated, ditto naproxen. Tramadol is just awful; I feel drunk and my heart races even more than normal. So I don't really take much at all apart from paracetamol and ibuprofen. Was prescribed antidepressants but they just made me feel more anxious.

I can't live like this. I've got 30 years until I can retire and that's a depressing thought. I'm a useless mum in this state.

JBJ hi! I changed bedding yesterday too. It really needed doing, it was somewhat ridiculous. I don't understand why it's so tiring but it really is! This may sound strange but if I were you I would go for a civil service job, they tend to be a bit more flexible with disability stuff.

I forgot about this thread. I had some time off work after surgery and, despite the pain from the surgery, it was lovely! However now going to work seems even tougher. Can't win.

Just wanted to wish everyone a better year this year.

Not a new article, but links between chronic stress, poor memory and brain inflammation.

sciencebulletin.org/archives/1327.html

Could explain triggering of some of the chronic illnesses we have?

Will come back and catch up on PP's.

Interesting!
I have had the most stressful time since May 2013 (multiple bereavements, both ds2 and I needing emergency surgery...)
I have finished my second lot of antibiotics for a nasty chest infection and feel rough as hell
Back to dr tomorrow to discuss my hrt and nortriptyline
I am also going for an overnight heart trace tomorrow too
I went back to work today and it was ok
I'm so tired of being tired

TV interview with the Norwegians, I think I've already posted about this research upthread, but here it is with English subtitles. I think the Rituximab trial results will probably be out in about 18 months.

The Norwegians will be speaking in Norwich on the 26th Jan.
www.investinme.org/ce-news-1611-04.shtml

www.bbc.co.uk/iplayer/episode/b08bbztq/look-east-late-news-26012017

This is about research in Norwich, Rituxan drug trial in UK.

www.mumsnet.com/Talk/_chat/2854321-Chronic-illness-surviving-the-relapses-Am-slowly-drowning-how-do-I-cope-All-handholds-welcome?watched=1&msgid=66971682#66971682

I know there aren't many on this thread & I have struggled to post on it in the past myself. Anyone got any practical or emotional advice to add to my thread over here in Chat?

All welcome

What an attention seeker! I'm back!

EDMR or Energy Therapies? Anyone had one of these for ME/CFS and could recommend it? No idea which one to choose.....

www.mumsnet.com/Talk/_chat/2855218-EMDR-OR-Energy-Therapies-for-ME-CFS-The-Body-Keeps-the-Score-Childhood-trauma?watched=1

Now off for a nap

This thread is great, I read back quite a way and finally people who get what this is like. I have been unwell off and on for 6 years now, had tests for everything. But I have been well at times too, now having had serious issues with back pain, I mean completely debilitating back pain have been tested for various forms of arthritis including Ankylosing Spondylitis. AS fits, the physio is convinced I have it but the MRI showed nothing other than some wear and tear in spine.

I felt up to that point relieved as even though my GP had diagnosed me with CFS, arthritis feels more quantifyable, i.e. you have this - so take this medication which will treat it. CFS/Fibro does not have that and my god its frustrating as hell! So I am back to square one in the midst of a huge crash probably triggered at my frustration of not being able to say to people why you are as ill as you are, because lets face it who actually gets CFS out there apart from those that have it?

Only thing the Rheumatologist did say was to suggest to my GP that I get referred to the pain clinic. That sounds helpful at least. I haven't had a formal diagnosis of Fibro but I need that now every day is a living hell of pain.

This is a total rant please forgive me just so fooking frustrated today. I have slept for 12 hours but am still so exhausted a simple walk down a flight of stairs has left in agony and shaking like a leaf.

Hi Sulusu - haven't been on here for ages as i find it hard to keep up, but just wanted to comment on the AS. You can have a blood test that determines whether or not you could have it - it is genetic so if you don't have the gene you won't have AS. Your gp should be able to easily sort that out. It's something i was tested for because of my back problems as it is in other members of my family, but i don't have it - just (just!) the fibro.