Chronic Fatigue Syndrome/ME/Fibromyalgia - for support

[Katymac]

Hi all,

I've had a combination of these for a while; I have good days & bad days

The World Health Organisation (WHO) had re-designated CFS/ME as a neurological illness and CFSKate has loads of info about new research going on

I thought we needed a fluffy supportive and lovely thread - join in

NO NEGATIVITY (apart from whinging about how crap you feel or how rotten people we encounter can be or how unfair it is that you have it)

I've never taken gabapentin kinky so I don't know if that's normal. What does the meds leaflet say? Or maybe ask for a phone appt with the Dr and ask?
I've been on meds before that made me feel zombie like in the mornings (amitriptyline) but I didn't have to drive so it wasn't an issue.
I feel a fool today.
A fool for thinking I could cope with dh working away so much. A fool for thinking I could go back to work (it's only 1.5 hours a day!)
A fool for thinking I could be normal.

I have physio starting next week for yet another disc issue in my back
I have a nasty virus atm which seems to be morphing into stomach cramps and diahorrea
My fil has dropped youngest at school for me
I need to decide if I'm going into work at some point....I'm just useless.

Badders try to be kind to yourself. If you can't work atm, ring in. It's so hard when you feel poorly. I'm only doing a couple of hours tomorrow, but, atm, wouldn't be able to do it.

I've only been there 6 weeks and a colleague put her back out yesterday so am thinking she won't be in today....
Sigh.
I've taken some buscopan and will see how I go.
It's rubbish isn't it?
This too shall pass x

I don't think I've posted on this thread yet though I've posted in various others. I have Fibro with Chronic Fatigue and have had this 'bout' for 6 years having had what is thought to be a remission period after a approx 4-5 year bout following Glandular Fever when I was 17. I have to say it's way worse this time around and doesn't look as if it will go away.

One thing I'm learning - and by no means do I remember this but have to keep being reminded! - is that you have to look after yourself first, there is no point feeling guilty (& boy do I feel guilty at times about not being able to work!) if you can't work or need time to rest etc. I go through phases of "lowness" - I wouldn't say depression as it doesn't last more than a few weeks but I feel incredibly low and guilty that I don't work, I struggle to keep the house clean or do something with the kids etc. I also find lack of understanding from others hard too. I regularly get told 'you could do.... insert job title' and I realise they haven't got a clue, they don't see the struggle I go through just to get through the day or the amount of time I need to rest before and after I see them. So if you need to rest then rest, look after yourself.

King I don't react like that to gabapentin - just a weird sensation in my mouth and head just after I take it - so I don't know if it's normal. It might be and it might take a while to settle but could you phone GP/Pharmacist and ask advice?

Can I ask does everyone here have a poor immune system response to illnesses - colds, viruses etc? Is this a 'normal' effect of Fibro and/or CFS? The reason I ask is I have various symptoms and related conditions to Fibro and CFS but I rarely I get "ill" if that makes sense. I don't seem to have all these colds, viruses etc that others have and, it sounds daft, it's niggling away that might be what I have isn't actually what I have been diagnosed with. I'm trying not to jump a bandwagon of I've got something else as maybe some people with Fibro/CFS are similar to me?

I do yes Daisy I have always had a weak chest for example (that sounds so Victorian!) - my mum and grandma is the same. I really suffer when I do get colds.

But I do think it can depend on circumstances too. For example I was getting frequent colds and bugs, until we took the DCs out of school (they are now home ed) - now I hardly get any. I think because they aren't bringing home endless bugs from the classroom IYSWIM and also because I'm not dragging them to school in torrential rain etc (had to walk as no car).

Erm, just wanted to clarify that wasn't the reason we took the DCs out of school :o (it's just luck that it's better on my health)

I think CFS/Fibro are that type of illness where there are a huge number of symptoms and people present differently, endless combinations are possible I guess. It's the same with ASD (which I also have :o) - there are loads of different issues that different people will have/not have even though the diagnosis is the same.

That's not to say you shouldn't pursue further assessment of course, if you think it might be something else!

Yes, circumstances affect it all I agree - my kids are older (11/14) and rarely get ill themselves plus I'm home alone a lot most days so I know that plays a huge role in it.

I've had various tests very recently as I'm a textbook case of under active thyroid or Hashimoto's - on paper it's clear that is what I have but every test and you name it, I had it, shows that my thyroid is fine. In fact, I'm perfectly healthy [insert roll eye emoticon!] My GP even got me in as a textbook case for her students to show that they couldn't just go by what is on paper, what the symptoms show as I very clearly have Fibromyalgia and chronic fatigue.

It is interesting in a science-y kind of way to see the symptoms we all have and how they differ and yes, we all need to remember that we are all different, will have different symptoms and react differently to the medications available.

daisychicken - "Can I ask does everyone here have a poor immune system response to illnesses - colds, viruses etc? Is this a 'normal' effect of Fibro and/or CFS? The reason I ask is I have various symptoms and related conditions to Fibro and CFS but I rarely I get "ill" if that makes sense. I don't seem to have all these colds, viruses etc that others have"

Yes, this is often discussed on CFS forums. google
cfs colds anymore

I still haven't heard anything from the neurologist since my lumbar puncture at the end of January. The Dr says there's no appointment in the system for me and I should think about chasing it up.
My mum thinks that means the initial 3-4 week results came back fine, and she wants to wait for the full 8 week results to rule everything out, but I would have imagined she'd want to put me at ease if that was the case. I can't help thinking something has flagged up and she wants the full results so we can see the whole picture

CFS Kate thank for suggesting the google search.. I'm kind of gobsmacked at the results! I've never seen it mentioned on any of the forums or other Fibro/CFS pages that sometimes people with CFS/Fibro (and Hashimoto's was mentioned too) just don't get 'ill' That it's not just me is kind of reassuring!

Alice there's no harm in chasing it up is there? It might be the results are there and a little push will get you that appt or they might say the results are not totally back yet. If I was you, I'd ring and ask.

daisy I think I have been am hiding my head in the sand. I was using the excuse of chasing up medical stuff for my DC2, but that's finally been dealt with (well, I managed to speak to the right person finally), so really I ought to just go ahead and do it.

Glad you asked that daisy because I didn't know that either! Thanks CFSKate

Took amitriptyline yesterday. I feel completely numb today. Headache has gone, but I have been wiped out, dizzy and disorientated since I got up. I took 10mg at 6pm.

Does this settle down or do you stay disorientated? I feel not of this world today!

Kinky could you cut the pill in half and take 5mg for a while?

I found I reacted very strongly to amitryptiline and even 5mg made me feel zombie and hungover like.. but, it wasn't as bad as 10mg. I did get used to it but it took years and I'm now on 10mg and the side effects are not quite as strong.

So might be worth trying? You can get pill splitters in chemists, pound-shops or on eBay.

kinky...i do think you get used to dosage of amitriptyline in time...but yes the first few days it knocked me out it and I was on 25mg. It gave me a dry mouth which is a very common side effect.I made sure I had a glass of water by my bed each night.
It really worked for me though for my pain and sleep issues.
I am at the physio on Monday (so the Dr was serious when she said it was urgent!!)
Feeling bit better in that my nose has stopped running but still fighting off whatever this virus is.
Will be very glad when dh is back on Saturday!!

I'm not sure it's worth it. I hate this feeling more than I hate having headache. I've felt out of it and really low all day.

So sick of this.

It's the first day.
Try and last the week at least - I know this is easier said than done when you feel so poorly :(
It was the only drug that really helped me tbh...and I was on it for quite a while.

I'm signed off until Monday but really worried I will manage to drive to work on Monday morning.

I took it at 6pm.

You have a few more days to get used to the dose then...
I would suggest getting up slightly earlier than usual to make sure you are fully awake. Drink plenty
I never had any issues after the first week ur so.
It will make you more groggy in the mornings but you will get used to it
I was in a terrible state when I first went on it and it enabled me to sleep and be (mostly) pain free

Badders.

Thing is I fought my gp for months about going on it as it was an ad and I didn't want it on my notes that I was depressed...as far as I was concerned my issues were physiological not psychological iyswim?
I could kick my younger self!!!

It's definitely worth carrying on kinky, the side effects will get better. I agree with badders getting up earlier is a good idea. It might be a good idea to have a backup plan for Monday if you can't drive. Can you get a lift or the bus? Or a combination of the two? Lift to bus stop?

badders it doesn't help that some people will always say it's all in our heads, makes you feel like you're agreeing with them when you agree to try it!

Kinky how are you feeling?

I finally called the neurology department and they were lovely. Going to check out the system for results as they should be in by now, and chase up my doctor for a follow up appointment.

I'm not sure whether the sick feeling in my stomach is fear of it being MS, or not being MS

Alice I totally get that feeling. I ended up crying when they told me I hadn't got MS. The neurologist was and I had to explain that, while I was obviously pleased it wasn't MS, I was no further forward in finding out what it actually was and was still just as disabled by the symptoms.

Interestingly, I have recently read a paper that said those of us that suffer from migraine and orthostatic intolerance are at a greater risk of white matter lesions and another that I can't seem to find at the moment that said people with POTs are more likely to present with vascular-type lesions of the white matter. So I reckon I probably have my answer there - although, as yet, they still don't know why this is the case.

The description of brain lesions described on Hummingbirds - if you scroll down to 'MRI scans of the brain', is almost word for word what came back on my MRIs, yet I have been told by multiple doctors that those lesions are just normal ageing - despite having them on my first MRI when I was 36.

Kinky I started some beta blockers two weeks ago that knocked me for six. I take them at 7.00 pm and for the first week I was totally unable to get out of bed in the morning, then had the worst exhaustion, literally feeling like I was made of lead all day every day. I also had severe shortness of breath on even light exertion, a headache, nausea and spinning room sensations.

I've now been on them for just over two weeks and while I do feel a little slower than usual (given that my usual is already mega-slow that's not a good thing) I am at least functional and can get up in the morning.

I was told two weeks is the usual amount of time for our bodies to adapt and side effects to reduce.