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!).

[notsurewhatshappening]

KittyB52 I did sleep in the end thanks. Kids wanted pancakes for breakfast but the standing at the hob really tired me out so DH took them to school luckily. I did too much this afternoon and now legs are really achey and sore. All I did was walk 10 mins to take kids for a much needed haircut then made dinner. I need to plan my activity better.

Hope everyone is feeling OK x

[KittyB52]

Morning! I hope everyone is OK.

I am struggling at the moment as my back is sore, on top of feeling generally ‘wrung out’. DD is just starting the ‘terrible twos’ and is into everything. I feel exhausted after each nappy change or putting her in her high chair, let alone trying to stop her trashing the house (which is too small and full of too much crap!).

I already feel bad that we don’t go out as much as I would like because I am too tired or my back is too sore to deal with lifting her in and out of the car seat or getting the pushchair out.

We go to baby signing (well, toddler signing) which we both love, but she doesn’t seem to like other classes we’ve tried and is very clingy at the moment.

Any advice please?

[notsurewhatshappening]

Hi Kitty. Do you have any traditional toddler groups near you? I mean the ones run by kind old ladies in a church hall. They were fab when mine were little- granted I wasn't ill then but still. I'd rock up, pay £1, be given a nice cup of tea and a biscult and DCS would bumble around with the other children or just play around me if clingy.

Soft play was a nightmare at that age as I had to go into the play centre with them and climb over everything

Library could be nice? Or taking a bus ride somewhere- to a cafe maybe? Feeding ducks?

Now mine are at school thank God. Sympathies x

[notsurewhatshappening]

Also meant to add - don't feel bad for putting on the telly for a while. Big pot of a fiddly snack like cheerios or raisins keeps them busy. Indoor picnic with teddies = instant novelty, sit on a blanket while she feeds her bears. I lie down on the kids' beds sometimes while they play in their rooms.

[KittyB52]

I wrote a big reply to this, but it’s vanished. Thanks for your ideas, I will have a look for local groups.

I am also looking for ways to clear space in our tiny house, as there are toys and things everywhere and it’s also getting me down.

[Zoflorabore]

Hello all :) I'm Zoflo and I have fibromyalgia and chronic fatigue.

My pain started in 2005 when I was 27 and was diagnosed as sciatica as the pain seemed to be the only issue.
After a traumatic life event in 2014 I developed loads of further symptoms and I was finally diagnosed in November 2017 and cried like a baby when the specialist told me. It was just a relief that someone believed me!

To add to this I am also diagnosed with OCD, anxiety and depression so with all of the above I have a nice cocktail of drugs to make life a bit easier. I said to my dad recently that " im sick and tired of feeling sick and tired " as when he phones me he always says " and today's illness is?...... " which is hugely upsetting and insulting, almost insinuates that I'm making it up.

Anyway, I am a stay at home mum, am not able to work but don't claim sickness benefits but am considering applying for pip as I could really use extra help.
I have chronic insomnia which isn't even helped by sleeping tablets so am able to fall asleep but I can't stay asleep. Average wake up is 3am.
I have ds (16) who has Aspergers and is sitting his GCSE's in a few months and dd (8) and they're brilliant kids who cause no bother and understand that I have to pace myself.

I'm sorry there are so many of us suffering. I'm also sorry about my super long post
Glad to find my people.

[GinGinGinGinGin]

Hi everyone,

Thank you for starting this thread OP.

I’m newly diagnosed with ME and Fybro though I have suffered since I was late teens (now 32).

I have a 2 year old DD and the symptoms got much worse after she was born.
DH is away a lot with work at the moment and I’m finding it so tiring on my own.

I’ve had a really rough month so I spoke to the doctor again today. I have a new prescription for Pregabalin at the pharmacy to collect tomorrow. I’ve also been signed off work again so I’m feeling particularly sorry for myself tonight. I only work part time and even that seems an impossible task.

Hope you are all ok and have a restful sleep.

[notsurewhatshappening]

Welcome Zoflorabore and GinGinGinGin

Two friends visited me separately yesterday and brought flowers, magazines, cakes and cookies. It was so nice to see them and they both understand I can't talk for long. When the second had left I had a really big cry. Just felt so useless and missing work etc. Was also so grateful to them for their kindness. Today I feel even worse than usual, I'm wondering if intense emotions have an impact on energy levels?

[Voila212]

Do you ever feel like a fraud because doctors and specialist can't physically see anything? I was in hospital during the week and was told test came back clear. Despite the fact the doctors told me I looked awful and could visibly see me suffer with the spasms. I was given a clean bill of health and told take cod liver oil.I began to doubt myself, am I doing this to myself, is it even real? I tried to ignore the pain and symptoms for the last few days until a shooting pain in my foot made me nearly vomit. I also beginning to feel guilty that the years of anxiety and stress I put myself through has caused this. I'm tired of struggling and been in pain. I think I'm just feeling sorry for myself too, as ludicrous as it sounds i had hoped something would show up in the tests so that I could prove how painful this condition is.

[KingHenrysCodpiece]

Hi to everyone who has recently joined the thread, just catching up again!

Zoflorabore, GinGinGinGin, Voila12

Voila12 What on earth were you told to take cod liver oil for??!

Mind you my first appointment with Rheumatology 3+ years ago was dire, I just sat with rising shock and embarrasment as the consultant reeled off all these tests results which were all clear.

No lupus,
No arthritis
No Sjorgrens
No hashimotos (though this was wrong. But they did not test all antibodies, but I knew nothing about anything at this time)

No Lymes disease
C-reactive protein well within range
B12 levels good
Liver working great
Electolytes balanced
MRI scan good
No antibodies for glandular fever

Diagnosis: It's all in your mind. But you do have sinus issues.

Of course the GP was when I kept complaining after that. So I gave up and suffered for another 3 years.

[Zoflorabore]

Thanks for the lovely welcome :)

It's disgusting that so many of us are made to feel like we're making this up. I wouldn't wish this on my worst enemy.
When my dad said something again recently ( he's the type that won't even take an aspirin for a headache ) I told him that I wish he could experience just one day with my pain and symptoms, just one day to see how utterly draining it is. He hasn't mentioned it since.....

I also think you need to find a good "fit" with your G.P as I've finally found one at my surgery ( there are others but he's the best ) who totally believer it's a real condition as should be the case anyway and he listens to me when I suggest different meds etc.
For example, last month I read on here about Nortryptline and asked if I could try it as both a painkiller and a sedative to help with sleeping and he agreed. He knows I am well read on this and if something isn't working for me will tell him- prime example of this were Gabapentin and Pregablin. Didn't do a thing for me except make me ravenous!

So yes there are times when we may come across as well when we're anything but.
I've started to pace too and have accepted the conditions for what they are. The support of others on here is invaluable.

[Whatcouldpossiblygowrong]

I’m currently feeling totally exhausted. My glands are up , throat sore and legs and knees aching like hell. It’s because I worked on a uni assignment until 11pm and my son woke me up at 6.30- but I have been in discomfort all day and now feel horrendous. Nearly went to dr as felt so bad but no point as no new symptoms- just same but a worse patch and I’ve already got an appointment for next wed. It’s posisble I’ve caught a cold my sons have both got but since I’m already wiped out and aching I’m not sure what’s what any more only that I feel terrible . To make matters worse I’ve got a uni deadline Monday morning so more work to do at the weekend and I can’t muster up the energy to every think about starting it

[notsurewhatshappening]

I'm having a pity party because we have tickets to Legoland tomorrow and I'm not well enough. There's no way I could cope but I really want to go. DH is taking kids on his own. Also missed out on a theatre trip last week. So bored but have no strength, energy or attention span so can't do anything. Waaaaaaaah

[KingHenrysCodpiece]

My uni assignment will have to be late. I can't get out of bed today.

[notsurewhatshappening]

KingHenrysCodpiece that must be so frustrating but I think you have to put your health first. Hope you are ok.

[Zoflorabore]

Health comes first- you are more important than an assignment though I would be exactly the same as you.

Tmi warning but I'm having the period from hell. Came on early hours as expected ( 27 day cycle on the dot ) and have been flooded. Didnt help myself by going into Liverpool shopping and carrying 7 bags around. I'm destroyed and going to bed. Only waited up as ds has been to Newcastle to watch the football and wanted to see him before I go up.
I have done way too much today :(

[OhWhatAPalaver]

Hi everyone, I have been told by two different consultants (a rheumatologist and a neurologist) that I most likely have fibro. I didn't believe the rhumy two years ago, I thought it was basically 'we don't know what's wrong so it's fibro' but I saw the neurologist yesterday and he said the same thing 🤦‍♀️ I was initially prescribed pregabalin which I refused to take (I research everything!) and now the nuero wants me to try amytriptaline.
I have so many symptoms there's too many to list but my main issues at the moment are not being able to empty my bladder/bowels properly, indigestion/heartburn, bloating, wind, pelvic pain, sciatica, fatigue, neuropathy, issues with lights and noise and on top of that I have Menieres disease (hearing loss, balance issues, brain fog, vertigo, etc) and wear hearing aids.
I have 2 dd's aged 7 and 2 feel the same as some others in that I feel guilty for not being able to do much with them. Things have been much harder since dd2 as her sleep was awful as she has allergies. It's a bit better now but still not great. We co sleep and I was woken up by her wriggling around at 5am and then I was desperate for the loo and spent ages in the bathroom! So that was me awake so pretty knackered this morning.
Sorry if all that sounded a bit moany! Thanks ever so much for starting this thread as I am still coming to terms with the fact I might actually have this thing and it's reassuring to hear of others who are in similar situations.
Has anyone else tried amytriptaline? I do worry about meds, I'm even worried about starting the omeprazole that the gp has given me for the heartburn stuff! I understand that might sound daft, I annoy myself sometimes!

[Zoflorabore]

Hi Palaver, sorry you're here with us but I'm also glad you've found this thread. I've only been on it a few days but am so glad to have somewhere where people "get" me.

I take a lot of meds but I also have several
conditions. I remember hearing about Gabapentin and Pregablin and people saying how fantastic they were. Didn't work for me.
Lots of meds used to help us fibro sufferers can be trial and error. I read a lot about it, have several books and constantly keeping myself up to date with things and a few months ago I asked my GP if I could try Nortryptyline which is in the same family as Amitryptyline and it has been fantastic, especially for my sciatic pain.
I've tried so many things over the last 14 years of suffering ( was only diagnosed in 2017 ) and these are good.

[OhWhatAPalaver]

Thanks Zoflora I'm still kind of in doubt tbh as I have things that don't add up with fibro, like the bladder issues. I haven't seen any mention of bladder issues with fibro but if anyone wants to correct me please do. I think I may well have fibro but largely brought on by lack of sleep. But I think my bladder issues are something separate iyswim. This is my gut feeling anyway, I could of course be totally wrong.

[notsurewhatshappening]

Just bumping to keep the thread active. I've had to ring in sick again which causes me a little of anxiety but luckily my employer is extremely sympathetic. He just told me to take as much time as I need and not to worry as previous to this I was never a sickly person. I'm aware how lucky I am to have this!

This morning I cried as I just couldn't cope with getting myself showered and dressed after a sweaty night, the children breakfasted and ready for school. DH stepped in and took them for me as he's working from home today. I just kept crying as I feel so useless and then cried more as I know I'll crash later from the exertion of crying! How ridiculous.

How are you all today?

[sweetkitty]

Hey there glad you bumped the thread. I feel so low just now, in a lot of pain especially my sciatica. I take tramadol in the morning to get me up and moving.

I’m working three days a week but it isn’t going well (long story) and we’re having trouble with our 14yo DD.

Trying to cope with life on top of this is such a struggle.

[notsurewhatshappening]

Hi sweetkitty sorry you're having a rough time. I know a couple of people with sciatica who really struggle. Doestrogen the tramadol give you side effects eg nausea? I'm not in much pain luckily. Just weird pinchy pains in random places, headaches and general muscle aches. Also sometimes my toes feel like they are being pricked by a sharp link and my feet ache like I've been standing up all day. Main issue for me is fatigue and brain fog.

DH and I had a conversation yesterday about how we'd cope financially if I have to give up work. I really love my job and I'd be gutted rotor have to leave. Signed off sick at the moment so hoping I can make a recovery and have a phased return. Don't know what will happen.

[notsurewhatshappening]

In good news, I'm losing weight as I can't be bothered to make/ eat food and am just grazing. No appetite especially in the evening. I've been trying for ages to lose weight. Surprising as I hardly move to burn any calories.

[OhWhatAPalaver]

Hi notsure, and sweet, I feel your pain with the work issues. I've just had a stage 4 meeting with HR and a band 6 manager present, it was awful but thankfully they didn't sack me. They extended my monitoring period instead, largely due to management errors! They would have got rid of me if they could have I think. So I've got to try and have no more than one period of sickness between now and December (fat chance) otherwise I'll probably be dismissed. Here's hoping for a miracle for us all! Meanwhile I'll be looking for a new job...

[Zoflorabore]

Hi everyone, this thread had fell off my list.
I've had a hellish week with my back. My sciatica affects the left side but last Tuesday I dropped dd at school, went for breakfast with my best friend and then went to Lidl.
Normal pain levels. Got home from shopping and the most horrific pain started on the right hand side of my back and I was
in agony and pretty miserable all week, moaning like a wounded animal.
Went to doctors yesterday who gave me Naproxen which I've had before, years ago and wasn't hopeful.

The difference today is incredible!
Unfortunately my "today" started at 2am, had a terrible sleep and was up all night.

I'm a SAHM to school age dc and sometimes I moan about money but know full well that I'm not reliable enough due to insomnia and pain and just couldn't cope working. I don't want to be like this forever though.

Weather picking up a bit here which is good.