CFS/ME/Fibro/spoony support thread 2

[LivingInMidnight]

Old thread here

My BP was very high to begin with but came down slowly in hospital and was ok at the GP. I haven't been tested for POTS (was thinking about asking the consultant in hospital at my next appointment about it - will definitely mention the palpitations and dizzy spells and headaches). Not going to mention anything more to the GP as she's already formed her own opinion of me which is unfair but I don't think I'm going to get her to change it :(

She did say though that she wants to do a 24 Hour ECG test to see what my heart is up to. Today I haven't had any palpitations, yet, but the headache still hasn't shifted despite having four ibuprofen and two paracetamol. I really wish I was still with my old GP surgery as they seemed a lot more switched on about things. This GP is more old school and a bit set in her ways.

POTS is generally associated with low BP.

It's quite common for high BP to occur with palpitations, dizziness and headache, I don't know why your GP was so unhelpful.

I'd ditch them, it's no use having a crap GP when you have a chronic health condition.

Unfortunately we live in a small town with only one surgery. No choice but to stay with them :(

How near is your nearest town?

Or is there more than one GP at the practice?

There are several gps at the practice. It's more pot luck though if there's only one on duty and you have to see them, and that's how I've ended up with her - twice. I have heard that the two male doctors are younger and more up together with stuff and will run tests for everything rather than dismiss you out of hand.

I've not been with this practice long and can't move anywhere else. I'm hoping the consultant at the hospital takes it all on board and looks at all the symptoms. Feeling very exhausted today, sitting on sofa with mug of tea, wrapped in blankets (cold). Headache finally shifted yesterday early evening, leaving me feeling dizzy and nauseated, tail end of that today.

Can someone help me with pacing please? I understand the principle of it (start small, gradually work up), but I looked on the NHS website, and it gave an example of if you can walk for three minutes without pain, then start at three minutes then add 30 seconds more at a time.

But, what do you do when you have low-ish level pain all the time, and it's not the pain as such that's the problem, it's the thinking and concentrating I struggle most with. I can't really do thinking for three minutes at a time, and increase that gradually . I know what things wipe me out, but it's the general day to day stuff (I've mostly given up work - I do one day a week at a client, then maybe an hour or two a day from home), the asking DD to help with eg the dishwasher, reminding her to do the dishwasher, asking her again to do the dishwasher, dealing with the tears when I do the bloody dishwasher and she starts with "oh, I was just about to do that, i'm so sorry, i'm trying to help, I feel so bad" teenage dramatics. How do I pace that kind of thing?

Splitinfinitive - for PoTS, try the "poor mans tilt test" - take heart rate lying down, then after sitting up, then after standing up. A rise of more than 30bpm within 10 minutes of standing is indicative of PoTS.

Also re palpitations - Dd2 (who has PoTS) saw a respiratory physio today, turns out she overbreathes, which triggers palpitations, which increases the overbreathing, and so on round and round. If you breathe in and out more than 20 times a minute; if you can hear yourself breathing when not doing anything strenuous; if you can't breathe in, breathe out normally through your nose, then pinch your nose and hold it for 30 seconds, you're probably overbreathing. Means too much oxygen and too little carbon dioxide in your bloodstream, leading to palpitations. And then if you worry about the palpitations, the stress makes it worse. Something to think about?

I have been here before (possibly under a different user name) - I have been stable for almost 6 months! - working 20 hours (officially, probably about 28 in practice) a week, very carefully, an absolute minimum of 11 hours in bed a night, and I've even coped with my DH leaving almost 4 months ago.
The last month I have been struggling. I also have Crohn's and it is flaring. I caught a mild enough cold on Sunday and even today I have only managed 4- 5 hours even upright, I finally got into the shower today. I haven't seen a human being since Saturday. I am already on a first warning because of the time I have had off and I am scared. I have spoken to a couple of friends but I think it's so hard for people to get. I can't stop sobbing tonight. I know it won't be helping but I just can't stop crying. I think I need to be understood. I know we are all struggling but I just want to feel less alone.

split you're far better off with a diagnosis from a rheumatologist. Someone I worked with was diagnosed by a GP and had loads of problems getting people to take her seriously. I felt really bad for her. Various HCPs ask who diagnosed you. It shouldn't matter but it seems to. When you make an appointment can you ask to see a specific GP? That's how I get round the dismissive ones.

visions pacing is a LOT of trial and error. I agree about the thinking thing. I try and schedule stuff that needs a lot of thinking for days/times when I know there's a fair chance I'll be reasonably OK (basically mid morning early in the week). Obviously this is not always practical in real life.

It's mostly about learning your limits and how much (or little) you can push them. It's a slow process. You can only do what you can do. I would honestly leave the dishwasher!

Eliza have they changed your absence triggers because of your illness? If they haven't, you need to ask for an occupational health referral. Are you in a union? They will help fight your corner if you need them to. It sounds like your mental health has taken a battering lately. Have you spoken to your GP about It? Chronic illness is difficult enough without added problems.

I'm not really convinced I have POTS, having read up about it. It's probably more likely that the palpitations are associated with the fibromyalgia or CFS. And dizziness is one of the CFS symptoms.

Today has, however, been a bad day. I've barely left the sofa all day. I have slept and off a lot of the time, barely having the energy to pick up a book and read. It's left me feeling completely wiped out. Hoping to feel a bit better tomorrow.

And, yes, I will try and avoid that GP if at all possible. There are, I think, three more there to choose from. There was one at our old GPs that I used to avoid too - ruder than Doc Martin (if you've ever seen that on tv). And he had quite a reputation for female patients avoiding him because he was so dismissive and rude

Thanks living - you made me feel heard at abut my lowest point yesterday.
I'm resigned to having a full week off now. Work have been talking about changing the triggers but my HR have claimed they "don't know how" - mind you, these were the people who when I came back to work 6 weeks postop from an emergency bowel op and with a new and totally unexpected stoma - said they didn't think it was a big enough deal to refer to occupational health. So I will ask again about it.

My GP is brilliant, and we've decided not to increase my antidepressants because this is mostly a normal reaction to marriage breakdown however horrible it feels, with occasional bad crisis point type dips, like last night. I am relieved that she doesn't just throw more drugs at me - it would be easy to.

I will try and participate and be of help to others more once I am past this current dip.

Eliza I work in the civil service and they seem very pro occupational health (was badgered into going last year and they were actually very helpful compared to previous referrals). If you say 'reasonable adjustments' somewhere in the question they might pay more attention. It's for their benefit as much as yours to get it sorted.

Glad your GP is good, that makes a huge difference!

Don't worry about the participation and help on here too much. You'll notice we all vanish for long periods of time! You can tell a spoony thread from the amount of tumbleweed

Eliza I'm so sorry to hear about your situation.

It's great you've been stable for 6 months, what you're experiencing is inevitable at some point. A week is not a disaster. Don't beat yourself up about it.

Split - as I said POTS is usually associated with low BP - that's what causes the heart-rate to rise - the body is trying to pump blood up to the brain.

What you describe sounds more like attendant symptoms of CFS and/or high BP.

(Not a doctor btw, just been ill a long time).

I'd agree that my symptoms sound more in line with CFS as my blood pressure is normal. After having had a reasonable day yesterday, back to really exhausted today (slept badly last night). Horrible elbow pain as well. I long for a day without pain

Nancy and Living thank you for helping me be a bit more realistic.
I've had a worse day today. It's just a day tho.
I will address things re Occ Health with them when I get back and they should know better, I'm a hospital doctor, we are so bloody awful at taking care of our own

Eliza sorry you've had a bad day. Things will turn a corner again soon. I'm actually really impressed that you're managing this well with such a demanding job! Honestly, that's amazing.

Oh split I completely forgot to mention the elbow thing! I have elbow pain too, but everyone thought it was ulnar nerve compression. Tests didn't confirm it so I've been told to wait until it's really bad and then do the tests again. It's really horrible pain and the way you've mentioned it made me wonder if it could be something similar. It comes for a few months and then goes (usually comes back at this time of year now I think about it). Not sure why.

Another one going round........

petition.parliament.uk/petitions/190618

I know it's very quiet on here again. Hopefully everyone is having some relief from their symptoms and is out enjoying a little bit of normal life? I do hope so

Parking this new thread here. Hoping to collect opinions and experiences of The Lightning Process.

www.mumsnet.com/Talk/_chat/2896076-THE-LIGHTNING-PROCESS-Calling-all-ME-CFS-people-to-help

I'm still here :) Symptoms are not too bad this week. Last week was awful but this week I've just been sleeping a lot. Which has been annoying but nowhere near as bad as the palpitations, dizzy spells and headaches.

DH and I had started watching a series on Amazon Prime but I haven't managed to watch any episodes at all this week :( I think that's the thing I find the most frustrating, that my evenings don't exist - I'm asleep just after DS goes to bed and don't even make it as far as as DD's bedtime.

hi everyone.
i just need to vent. have had me/cfs a good few years now. I'm a single parent with a very demanding /lively/ extroverted 5 year old. i have to go to bed at like 7pm. today i had really bad symptoms - flu like, brain fog, could hardly move, and i took her out and needed to rest after. but i didn't get that rest, and it pushed me into a really hard place. i started crying and couldn't stop for an hour, and just can't wait for bedtime so i can just cry and let my emotions out. i have no solutions to parenting with me/cfs. i hate being a drain on my family and friends, but i need so much help . i get help pretty much everyday. it breaks my heart to be dependent. and i can't seem to get any better because I'm always over doing it with my child...theres no way to get the rest i need, even with help.
thanks for listening, i just seem to be in a really hard place atm . i have people to talk to about it but tbh they don't really get it, unless you have been here you don't understand, and they also have their own problems to deal with so i don't want to burden them. i would get on to ads if they would help, but any kind of drugs in my system makes my symptoms a lot worse.
I hope the weather is good things are a bit easier for us over easter.

That sounds so tough, especially in the holidays. I know what you mean - especially about feeling so dependent and also that the people helping you don't quite get it. No fixes just standing with you in that.
I'm going to try and go back to work tomorrow, as this will be a lighter week to go back. It's really borderline as to whether I'm well enough. I feel like I'm back to being permanently on the very edge of not coping... hoping things do pick up over the next few weeks. Always hoping! I partly wish I would be sure one way or the other rather than this permanent just-about-barely-fit-to-work thing. Anyway, I shouldn't whinge as it could be a lot worse.

Hi Eliza i appreciate your understanding. i get the feeling of just struggling through and never feeling well enough to properly manage. i really hope going back to work goes better than you thought. you aren't whinging, its good to get it off your chest. x

Hi, I haven't posted before. But I'm having a really hard time/feel craps. I have had this week off with the kids and thought I would get enough rest to feel ok and/or we could do some fun stuff

I've felt I'll the whole week, I don't know if it is the CFS or an actual virus. Really bad headache, feel really fluffy headed, and a bit dizzy/nauseous. I have a bit of a cough, which makes me think it might be a virus

The time is just flashing by. I'm desperate to sleep, but feel so guilty about the kids, down stairs entertaining themselves

We have done some fun stuff, bike rides, fun walks, visiting family/friends, meals out, horse riding etc. Got up and hid eggs for an Easter hunt. But ALOT of lying on the sofa watching TV. My house is an absolute state with piles of laundry that need putting away.

I just can't pull it together to get up again

www.scoop.co.nz/stories/GE1705/S00067/distinguishing-chronic-fatigue-syndrome.htm " “Our study also showed that some individuals with CFS/ME took up to four weeks to recover following the two exercise tests, which was not apparent in the healthy individuals who were back to normal the following day.”"