ME / CFS / Fibro spoony thread

[notsurewhatshappening]

Safe space here for support and understanding- all welcome. I'm quite new to this so would be nice to chat (low energy levels permitting!).

Hi,

I’m sorry to hear you’re all struggling too. You’re so right sweet, coping with every day life is tough when you feel so ill all the time.

palaver I also had a meeting last week to discuss my return to work. Miraculously, I still have a job..for now. By the time I got home I felt so ill and just so sick of feeling sick. I then spent most of the weekend sleeping and making DH sit in the dark to stop my head hurting.

How do you feel about potentially giving up work notsure? I’ve had the same discussion with my DH. Whilst I’m sure we’d cope financially, I just feel I’d be giving up on another piece of the old “healthier” me.
zoflo I’m also trying naproxen again as I was finding codeine etc was making me feel so tired and groggy in the mornings. I’m glad it’s helping you too.
I also have the pregabalin here which I haven’t taken.
Does anyone have any experience of taking it? Good or bad?

X

Hi Gin

I take Dihydrocodeine which is a bit stronger than codeine but it doesn't tend to affect me negatively, Tramadol had that effect on me and also made me feel really sick.
I've tried Pregablin. First I was prescribed Gabapentin which is in the same "family" of drugs and was desperate for it to be a miracle worker, having heard such good things about it. I didn't really notice any reduction in pain but I was constantly hungry and subsequently put weight on.
Doctor then switched me to Pregablin and I was happy as this is often seen as much more difficult to obtain due to cost.
It had zero effect on my pain levels. Doctor said that can happen and certain drugs are life changing for some and have no effect on others.
The one that is newest to me ( started in January this year ) is Nortryptline which is bloody amazing and is a painkiller and sedative which I take at night.
Says me up again before 2am.......

It's definitely trial and error when it comes to meds and sometimes takes bit of tweaking and chopping and changing to find the right combination for you.

Lying awake with painful joints tonight. Feels like Chinese burn on my wrists and ankles. Rarrgh.

I'm on a fixed term contract and I don't think it will be renewed. My employer said thee may be opportunities the following academic year. I think we can afford for me to have a year off work but I'd need to get something in writing to confirm when I'd start work again for mortgage etc. Emotionally I would struggle quite a bit not working ever again. I'm a 'doer' and was always busy and active before this happened. I need to learn to slow everything down to try to recover but teaching is really fast paced and full on. Making a decision every 3 seconds. Being responsible in locus parentis for 32 very different children. The noise and relentlessness of the marking etc.

I'm going to phone my head tomorrow and ask if I could do a couple of afternoons a week after my contract ends, or if not, if they can find something for me the next academic year. I'm not ready to give it up completely and rely on DH.

dropping in to placemark, was diagnosed with fibro a couple of years ago, after a diagnosis of balance problems after having had labyrinthitis, after lots of investigations into shoulder and neck pain/pins and needles, which were messed up by a rubbish GP.

Current medication is pregablin and amitryptiline (sp?),I also take a highish dose of Vit D (not prescribed) and magnesium malate. Pregablin for me is great (apart from the weight gain, which is the main thing stopping me from asking for an increase in dosage) - I'm currently missing my lunchtime tablet every other day in order to build up a small stockpile in preparation for switching to 28 day prescriptions/Brexit/pharmacy being rubbish - having to beg in public for a couple of tablets to get me through to the pharmacy restock isn't really a good look - and I really notice the difference on my full dose.

Will go back and read everyone's posts now

Hi all, can I pop in to say hello?

I went to the rheumatologist last week and she says I don't have fibromyalgia. This should make me feel elated shouldn't it? In stead I feel guilty for wasting her time and feel like a fraud for complaining about my aches and pains. She asked me which joint hurts and I told her all of them, not all together but randomly. I told her that my muscles and joint hurt and it was like I was making it up.

Anyway, you lot inspired me to get copies of my many many blood test in the past 13 years so I can see levels for myself and not be fobbed off with 'slightly raised' and 'it's high cos you have sinusitis.'

Have no idea why I feel like an old woman and I'm getting no where. DH does not understand when I tell him I'm sooo tired it makes me feel
ill.

Can you lot please list symptoms of ME CFS for me, even random ones (heartburn and sinus has been mentioned - are they connected?)

Bump

Thanks zoflora and myvisioncomesfromsoup. I still haven’t taken it yet but think I’ll give it a try.
I’ve read a lot about magnesium malate and fibro too.

Hi orenisthenewblack, how are you feeling today? It’s hard when you’re getting nowhere and everything comes back “normal”.
It’s hard to write an exhaustive list of symptoms, because like you said, there is always something hurting or not quite right.

The main symptoms for me currently are;

A lot of pain in my joints, particularly my jaw, neck and shoulders.
Pain and swelling in hands.
Vision problems. Blurry eyesight and light sensitivity.
Random stabbing pains.
Low energy levels
Fatigue but also periods of insomnia.
All over body pain when waking that takes an hour or so to fade.
Cluster headaches for weeks at a time.
Muscle pain after a busy day.
Tinnitus
Brain fog and struggling to articulate myself properly.
Depression
I have actually been suffering from heartburn a lot this week, so it’s funny you mention that too.

My DH is the same. He tries to understand but he doesn’t get just how bad I feel ALL the time. And he’s always sure to let me know when he has a headache!
Please don’t feel like a fraud. I think we’ve all been made to feel like that at times.

Hope everyone’s had a good weekend.

Thanks for coming back!

I have been positive today and proactive. I have bought some multi vits and evening primrose oil.

Am prescribed fluoxetine and vit b12 tablets, and have previously been given vitD, and folic acid.

I just want confirmation or acknowledgement that it's real even if there's nothing they can do to help!

I just need a hand hold - that’s all.
Don’t know what the heck is wrong with me. I’m worried it’s something serious and I feel awful.

Problem I have found is that my symptoms could be one of many things. Vit B12 deficiency, peri menopause, Vit D deficiency, fibromyalgia could all explain my vast list. It's a case of ruling things out I suppose.
Go back to swimming twice a week they say. With what energy I ask!

Hand holding 💐

waves I’m new here. I saw this thread the other day and started reading but I proper wiped today so inspired to introduce myself. I’ve got a fibromyalgiaa diagnosis as of last summer but had it for some years I think (following glandular fever) and it’s got much worse since the birth of DD2 3yrs ago.

It’s one of my days off work today (not that I’m working as much as I used to dye to the fibro) but I’m tired, everything aches and I’ve got a stomach ache which has seemingly come out of nowhere. I dragged myself to get the 5yo to school and now I’m back in bed and my 3yo has got a Disney film on while I lay with my hot water bottle and have taken my painkillers. Miserable!! So easy to get down on days like this.

Hello, not diagnosed but I'm currently in talks with my Dr who thinks CFS is a possibility - can I join?

I'm finding the lack of concrete diagnosis tough; am I just tired, is it stress, or my depression. Reading about CFS I see lots of people sharing how they were bedridden for months. I'm not, it's more peaks and trough - so that cements the "am I actually ill?" mentality.

DH isn't particularly supportive either atm, which isn't helping.

I'm with you NW. Thankfully mild symptoms that have been coming and going for over 14 years. Flare ups much more often now and my body scan (something I do to entertain myself in bed - lets see where's hurting now) is a random map.
Feels like someone 's holding a voodoo doll of me and sticking pins all over the place just for a laugh.

Does anyone take any supplements to help? I think I could do with a good calcium/magnesium/zinc combo. Anyone have any recommendations?

Just this week started a boots multi vit with vit b12; vit D , zinc and magnesium includes which I hear could benefit. Also Evening primrose oil and a pro biotic drink. I'm hoping it will make a difference to energy levels, ibs symptoms and aches and pains. 🤞🏼🤞🏼🤞🏼

Yeah I already take a probiotic turmeric thingy, it does genuinely seem to help my ibs. I've had a borderline blood test result for bone profile from gp so it's being repeated in one month, hence me thinking I'll be needing calcium etc. I think I'll have to get down to boots or Holland and Barrett!

👋 15 year sufferer here. In the most agonising pain the past while. Lying in bed begging for sleep currently.

Hi I'm the OP but name changed. Rough day today. ME symptoms worse than normal so have been in bed all day. I also have strange sharp pain on one ear but not sure what that's all about! No appetite and slurring my speech.

Welcome PotterHead, maybe you can share some wisdom with us.

Supplements - I take a multi vitamin with iron, chewable vitamin D and sertraline every morning. Not sure what else could help.

Orenisthenewblack funnily enough I had the same thought the other day about being a voodoo doll. I had pins in my toes.

Can't remember if I've said here yet but I was properly diagnosed a few days ago.

I'm a bit 😱 reading this. I've been starting to wonder if I have an underlying condition as I feel rubbish. GP has tested everything- no inflammation markers, not addisons. I've addressed low Vit D and iron. I'm on thyroxine. He's looking into hypermobility syndromes.

I've two last things to rule out- I'm reducing sertraline in case that is the problem, and then starting HRT patches.

Reading your posts though, so much resonates. I'd assumed I was just old overweight and unfit, and blamed myself. But I've been tired for years, slept more than anyone else I know, have stiff achey muscles if I do anything strenuous, and am stiff as a board every morning regardless of activity levels.

Hi everyone,
I was on another support thread under a different name I don't know if this thread is a follow on from that.

I feel at the end of my tether at the moment my doctors are so so useless and not helping me at all.

I've had really bad pain all over my joints flare up for the past week which is a bugger as the weather has been so nice.

My toddler is teething so badly so hasn't been wanting to nap which means I haven't been able to rest !

I've got to phone up ESA with a complaint which I'm very anxious about as I think I am owed a years worth of money.

Sorry everyone to be so negative but I really did need to get that off my chest as don't have much support .

Hi ivegotalpen. That sounds rubbish. I'm lucky that my kids are at school now so I get time to myself during the day. I used to drive my son around in the car after lunch until he fell asleep, parked up in the shade with a window half open and had a nap myself.

Alpen, I hope you get it sorted!

When I posted just now I realised I hadn't mentioned the things that resonated so strongly. It's the light and the noise. I've got totally noise averse, and always wear sunglasses to go outside. I can't manage at all without them. Also, IBS flares. This last year I've had random cramps and explosions. Not the usual build up, just out of the blue.

I'm glad you got your diagnosis, Chocoalte. Car naps are the best- there's something really relaxing about dozing in the car.

My neighbour used to hint I was lazy when she saw me sleeping in my car. Now she knows why (she knows I have ME) and is being really nice and kind.

Pickle I think you should go back to the GP and ask to be referred to a specialist. Your symptoms sound very familiar to me.