CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

Oh yay, poo talk I swing between constipation and diarrhoea (sludge!) I can't remember the last time I had a normal bowel movement. Most days as soon as I eat I am off to the toilet, and pooing up to 5 or 6 times a day. The pain clinic guy said I definitely sounded like I had IBS symptoms but gave me no idea about what to actually do about it.
It was a friend's 40th last night so me and the kids didn't get home until about 11. I took the car so we could make an escape as soon as we needed to. I am dead today

Hmmm
Still got cramps and runs
So that's all my bank hol plans cancelled
Sigh
No idea if it's hormonal or ibs...had a colonoscopy in Jan..all normal. Ditto gynae scans
Very frustrating to know that this is it...I just have to put up with it

I'll catch up with previous posts in a wee bit .

Hi to everyone .

I wanted to ask if anyone else experiences this :

I was playing with my 4 year old twins and as they were shrieking and laughing really loud , I felt more disorientated, sick and dizzy .

The more they shrieked , the worse I felt

I'm still feeling awful now with weird faint ringing in my ears .

CFS or coincidence?

It's entirely possible. Sensory issues are definitely a thing with fibro and i think cfs. I can't handle loud noises, lots of people talking or if you can hear eg radio in one room and tv in another. Also have issues with other stimuli, especially lights and heat. It makes me feel sick and disorientated. There's some info here about a study into this:
www.prohealth.com/library/showarticle.cfm?libid=19373

I'm just like you, velvet - sensory overload can be really debilitating for me, causing dizziness, fatigue, confusion & more. It's more severe when I'm particularly tired to begin with.
(Causes marital disharmony cos DH is always flippin loud, he's either working on the phone at home in telecons or he's just got off a flight back from home- or he'said come back from a shout you footy match!)

Midnight (sorry, don't know how to do bold on my phone) how are you?
Do you have a diagnosis? (Sorry if you do & I'very missed it with my foggy brain.)
I had to retire because of I'll health so am not very up to date, but apparently some chronic disease can be classed as a disability, which means that your employer has to take appropriate measures to accommodate you in the workplace.
Your Union will definitely be able to advise you on this. Please don't feel bad about telling them about your condition, it is nothing to be ashamed of - not your fault!
And does your Union have any views on the job changes, whilst you're at it?
Don't worry too much about it, but please seek the advice you deserve xx

No I'm the same noise drives me mad, always feels like it's hurting at the cinema. DH and the DCS are so loud too especially DH!!

I've been trying to paint my kitchen it's taken about 2 weeks so far as I've only been doing a bit when I feel up to it 😟 Did done this morning and crashed this afternoon feel terrible now.

Oh fgs
Now I've got a bad sore throat again
Back to work tomorrow

Hi monkey
I do have a diagnosis of fibro and hypermobility and a few other things. My employers do know about it and I have some adjustments in place (mostly from access to work) and the union have always been good at helping me when problems come up. Thinking about it logically I know you're right. I think I'm going to take my chances with occupational health and see if there's anything else they can do to help me.

I don't think the union know about the changes yet (to be honest they are kept really busy because my employer can be awful for things like this) but I've been trying to get things in writing so can send them on if I manage it.

Thanks so much for your message xxxx

Went to the GP today as am really struggling, and have to put up my Tramadol again I'd worked so hard a while back to bring it down to 250mg per day. Doctor said that's fine, but when I need to be taking 400mg, then I should take it. I know she's right

I also got a letter from Clinical Genetics, to call and make an appointment.

Kitty I get the same thing, people comment and assume I'm drunk or deliberately holding them up with stairs / narrow pavements / doorways. It's really dispiriting, and of course I feel about 100, I don't need reminding that I look it! I was actually pushed aside while struggling to the taxi queue a few days ago.

And please - push for the painkillers if you need them. My Dr won't prescribe, and some days are like torture. Take whatever help you can get.

Striker if that feeling gets stronger, please seek more help. It is all too easy to have a terrible day and realise it is too much. I'm only still here because I physically wasn't strong enough do myself the required amount of damage. Hence the sertraline...

I'm currently thinking that I shouldn't have (much desired) children. What if I was too tired to be a mum, will I pass on problems to them, could I forgive myself if I got worse and my dc had to care for me? My heart may be a wee bit broken. Yet another thing to miss out on.

to all those undergoing investigation. It's so, so difficult to push for these things when you feel helpless.

Sorry, not been on for a while. Not doing so good at the moment, I am sleeping very badly, horrid nightmares and waking up all the time and DH says that I snore!

I have a question, can joints hurt with fibro or is it only muscles? Both my wrists have started really aching and my right knee keeps collapsing under me especially when I walk up or down stairs? This is a new thing for me.

I am still dizzy and not well from the inner ear thing that has been going on since March, although I feel it is better than it was. I will have to go back to Drs at some point although i am trying to wait until after my holiday, as if I get referred somewhere, it will void my travel insurance! .

I am still doing my voluntary work, although I didnt go on the bank holiday, I have not been out of the house for 10 days, I really need to start going for a walk again but its either raining, snowing or I feel dizzy, so I have not been!

Anyway, thats enough me moaning, my wrists are hurting typing this! arrggh

I have HMS and fibro so I'm not sure where one ends and another begins (if you get what I mean) but my joints are really painful. Was your fibro diagnosed by a rheumatologist? (sorry if you've already said before)

Yes, my fibro was diagnosed by a rheumatologist a couple of years ago. He did a load of blood tests which were normal and his letter to Gp stated classic fibro symptoms.

I am also feeling really weak, in my arms especially lately, more than usual, i seem to be getting worse over time, i think it is 2 years now since i left work and i have gotten a lot worse since then, i dont know how i managed for so long, i wouldnt even last 2 days now at work i dont think!

Ah then they'll have looked at your joints to see if there was anything else (hopefully, that's how I ended up with the HMS diagnosis). Like you, I seem to be getting worse over time, but I have no idea what to do about it! GPs seem to say exercise, which I do think would help if it wasn't for the fact that moving is painful and we're all exhausted.

I know, I was on my knees working fulltime and so exhausted all the time and one GP told me that I just needed to exercise when I finished work and I would feel and sleep better! ha, I could barely keep my eyes open past 7pm and went up to bed every night on my hands and knees, i was just too tired to walk upstairs and had blurred vision every evening through exhaustion. The thought of walking or jogging around the park would have just about finished me off!!! I just wish one medical person could live in my body for a month and then they would appreciate just how crap I really feel and that it is not normal to feel like this at my age. I am 46 and my 96 year old grandmother is more active than me, it shames me

Yes! That would be so helpful!

Stabby chests pains what are they? Between my boobs a little to the left, comes in waves, build up stabby pain, goes. Had them all day today, is it fibro/anxiety/what??!!!

Today was DSs birthday so busy day including party managed a half hours sleep in the afternoon well I lay down with DD3 for a cuddle and fell asleep in 30 seconds.

Hope everyone else is ok x

I get the stabby chest pains, Kitty. Gp thinks it's just part of my fibro. They scare me because my dm had breast cancer and my df has recently had a series of heart attacks, so while i don't think they are caused by anxiety (it doesn't seem to correlate), it certainly causes anxiety, which then exacerbates the symptoms - i get in a panic about anything chest related. I often get pain down my left arm at the same time.

I'm thinking it is most likely nerve and muscle pain around the rib cage - it feels like it is in the chest, but it does sometimes seem to shift around a bit, which makes me think it is less likely to be something heart or breast related.

One of the consequences of having so many symptoms and no diagnosis for such a long time (30 years!) is that i have developed terrible health anxiety - i have always been socially anxious, but now it affects everything. It restricts me more than my physical symptoms really.

If it is a new symptom for you do go and get it checked out though.

Just placemarking.

I have my ESA assessment this afternoon and I'm so wired I feel too well! Muscles are hurting as I haven't exactly been resting but the usual crashing fatigue that I get in the afternoons just isn't there. Congnitive function is slowing though. Typing this correctly was very hard work and many mistakes had to be corrected!

How did you assessment go, BeYourself? Did they give you any indication?

No indications. Said it would be about 4 weeks. Took 2 hours. I was shattered. She left the room twice for about 15 minutes to speak to someone. Then had to go over some points again about me getting my children to school, most of the assessment seemed to focus on that. I'm assuming an appeal is in my future. I just think they are going to take me sometimes walking the school run as a negative thing despite me saying I'm in pain and do it slowly.

Can I join the thread? No diagnosis as yet but if there's nothing wrong I really won't know what to do. I have somewhere important to be today, a family gathering I want to go to but I can't muster the energy to shower 😕

It makes me feel ridiculous and lazy, I barely do any house stuff, it exhausts me. I swear DH thinks I'm just a lazy arse.

Right, I HAVE to shower now!

Hugs, elsa. It's tough, especially at the beginning. I'm only 2.5 years into my own diagnosis journey, and it's hard to change the mindset you develop that you're just not as competent as other people, for some reason. But while I still have no official diagnosis, I've been offerred a diagnosis of CFS/ME (so I suppose that means I have it? He said he'd write a diagnosis letter to work if I needed it, but I didn't need it. Perhaps there actually is a diagnosis on my NHS records) and I have recently self-tested and fit the diagnositic criteria for POTS (and a physician friend has looked at my results and agrees). I'm currently being referred back to the 'fatigue team' who would diagnosis POTS; they discharged me two years ago with a diagnosis of depression and suggeting CBT My GP actually scoffed at that in my presence as he was reviewing the letter they sent, as we discussed sending me back. I am very glad I've found a supportive GP. Finding a HCP who listens to you and takes you seriously is key.

Showers - get a shower stool! This has made a major difference for me.

The virus that won't die appears to be back..throat, head and ears all hurt AGAIN
ugh