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)

Sorry you're in so much pain Badders. Good news about the xray results.

Apparently it's the iodine contrast that is an issue for people with seafood allergies. It's not totally contraindicated, but it seems there is a threefold risk of an adverse reaction if you are allergic, which is why they are supposed to ask beforehand and proceed with caution. Here.

My poor old mum is allergic to just about everything and always has the worst possible reactions and side-effects to drugs. There are only a couple of antibiotics that she's able to take these days. She also has to have all her orthopaedic ops done under a spinal, as she responds badly to GAs, post-op is a nightmare too as she swelled up and was covered in itchy hives in reaction to the pain relief she was given after her first knee replacement. She's now had two new knees and one new hip, but is refusing to have the other hip done due to all the reactions to meds. Her Ortho Surgeon also said her tissues/fibres over-reacted massively to the op and he thought that suggested some sort of connective tissue disorder and/or fibro. She has all the symptoms of fibro, but no diagnosis.

My elder sister is similar, as is my younger half-sister (same Mum) whereas I don't appear to be allergic to anything other than a historical report of me reacting to Penicillin as a baby and an bizarrely, a reaction in the form of swollen lips if I eat a pukka cheese pasty.

I'm allergic to penecillin and 2 other abx
It's a pain really
Also very sensitive to latex - took me ages to figure that one out!
I now have to buy sanitary pads from a Swedish company that are 100% natural (no plastic top cover)
That's ££££
I'm going to try and eat low carb again it really does help me but sadly there is so much stuff on low carb I can't/won't eat!
Must go to bed...dh off to states at 6am

Badders I find the cold makes things much worse for me, especially my hands.

Saw the wellbeing person at the GP the other day. They were nice. I talked about how the GP said I should just quit work and she agreed although she understands why that would be a ridiculous idea financially. She said I need to allow myself to grieve for it. Still finding it very hard to accept though. I am so very tempted to just quit because it's the limbo feeling I hate!

I've lost jobs through this damn illness fuzz.
It's grim
But I have to say in each case it was absolutely the right thing to do X

I'm the same fuzz

I've got a work mtg in a few weeks where I'm pretty sure they'll dismiss me under capability. I've said I could maybe do 10 hours a week but realistically I don't think I could manage - I've accepted I've got this damn illness and all the limitations that go with it but losing my job makes it feel so real and final.

I know that health is a priority but I feel like I've lost my identity and losing the job is another reminder of this.

The biggest mismake I made was not listening to my Dr and trying to carry on as "normal"
I really put back recovery by months....

Reported

That's the thing badders half of me thinks maybe I could manage a few hours a week but if I'm being honest I've only got a reasonable quality of life atm. I don't socialise and really leave the house so trying to work is probably just wishful thinking. I'm just so worried I'll relapse again - I've come on so far in the past two years and don't want to go back to where I was but there's always 'what if...' in the back of my mind.

I'm really terrified that I'll push myself too hard, but I feel rather trapped, as DH is more ill than me, and with much more classic CFS/ME, and we count on my salary. I have a bit of hope that maybe if all I have is POTS, that as long as I apply techniques for that I can keep on top of things.

And then, in the this-is-probably-a-counterexample-to-the-above category, I woke up with an eye infection this morning! WTF! I haven't had one of those since I was something like 8. I've been nearly constantly sick since the week before Xmas: stomach bug (which on me now lasts 1.5 weeks), cough, stomach bug, UTI, cough, UTI, cough, and I'm still in the very final stages of that last UTI, pretty much in the middle of the last cough, and now an eye infection? I feel like I can't get a break.

Oh you poor thing!
Stomach bugs wipe me out too now...wonder if it's a common thing with ME sufferers?
I catch whatever my kids bring home which is lovely

Tilt Table Test this morning. Have had a migraine since last Saturday, so wasn't in a good way to start with. Very poorly in the car on the way down to the hospital - dh had to pull off the motorway and stop while I recovered.

Result was BP stable, HR increased 60 bpm. I didn't pass out or get some of my more usual symptoms, but it was still horrible. Consultant did the test himself and confirmed the results mean I definitely have POTs.

I'm being sent an appointment for next week to see him again and talk treatment/meds.

Glad the test was 'successful' moose!

I'm still waiting for a tilt test.

I will join you in the migraine moose. LP today, horrendous. First attempt painful beyond belief. Ended up consulting more senior doctor, different positioning, bigger needle and 3 more shots of lidocaine. Now the post-lumbad headache has me floored. Even doctors were concerned about my response.

Thanks fuzzpig now just have to wait and see what his suggestions are for treatment.

I'm only just out of bed. Migraine still here but much weaker than it has been, that'll be day 6 now. I'm only up now because I was fast asleep when the doorbell rang, shot upright in a state of confusion, ran towards the stairs and collapsed - doh! Good job I wasn't actually at the stairs when I went down. I'm usually very sensible about getting up slowly and drinking a glass of water before standing up, but I don't think I was properly awake.

Alice if you have post LP headache, get onto the docs asap to get a blood patch done. It took 3 weeks to get over mine, laid flat the whole time - I wish they'd told me about the patch before, but they didn't and I only found out about it when it was too late.

So sorry it was so a horrible experience for you. I didn't say before, as I didn't want to worry you, but I had similar issues. The registrar doing it hadn't a clue why things didn't go the way he wanted them to and told me it was because I was too tense. Local Anaesthetic didn't take - never does for me, so it was really painful, but he insisted I couldn't possibly feel it and refused more pain relief. It took forever to get it done and poor dh, who was there at the time, was horrified and positively green looking by the end of it. I was so relieved to get home - then the headaches that felt like being smacked over the head with a paving slab every time I moved.

Hope you can get the post l-p headaches sorted asap and someone is looking after you so you can get plenty of rest.

Thanks moose I'm home alone. Ex just popped round before picking kids up from school and made me a coffee. I've managed some water and crisps. I can't move my head an inch, my skull feels like it is going to burst. I don't think this is right. My friend is calling the ward

Definitely post l-p headache by the sounds of it. Hope the ward listen to your friend and get you in for a blood patch asap.

Do you have hypermobility/EDS by any chance? Us stretchy/bendy folks are known for not healing well after l-ps and many/most us end up with the headaches.

Ward advise to up water intake and caffeine. Difficult to drink anymore when I'm struggling to get up for the toilet though. I honestly expected that I'd just have to take it easy and lie down every so often when needed, but I literally can't do anything but lie as still as possible. Can't even lie on my side to see the TV.
They've said if I feel it gts worse I could call doctor out but they think it sounds normal.
Yes, I have JHS/EDS

Sounds awful Alice I hope it improves ASAP. Interesting about caffeine. Hopefully you aren't prone to tachycardia though (sorry I am crap at remembering who has what!) as caffeine makes mine far worse annoyingly

Really regret dragging myself out yesterday. Achy now and full of cold. I hate having to cancel things due to 'a cold' because people don't tend to understand that for people with illnesses like we have, a cold really is not 'just' a cold

Oh Alice it's not normal, not everyone that has an lp gets the headaches and if your procedure was difficult too, that should give them some idea that they need to act. It's not like it's 'just a headache' it's truly awful and I say that as someone that's has severe migraine.

Can you get someone to keep phoning and badger them? The patch really is like a miracle cure and they've no excuse for denying you it. I have heard of people just turning up at A&E and getting a patch done there. Maybe that would be an option if you can get someone to drive you?

fuzzpig sorry to hear you've developed a cold. These bugs always seem to be waiting for the second we've done too much to get a hold don't they? Hope you can rest and feel better soon. You're absolutely right, not many people understand that when we get a cold it's bad news not just for the initial bug, but the aftermath as well. (that's a Lemsip, not tea, by the way)

www.telegraph.co.uk/wellbeing/graham-nortons-advice/dear-graham-norton-i-have-me-and-cant-stop-being-jealous-of-frie/

Didi1960 www.tymestrust.org/

hope you're ok Alice :(

Thanks for the lemsip, moose :o

Still feel like shit today, had to take DD to dancing (she's just started ballroom and is loving it!) and go into town to pay my cheque in. It's freezing and I did my usual trick of not actually thinking about the weather so I was dressed totally stupidly! I swear I am a reasonably intelligent person (brain fog aside obviously) but I have zero common sense. I'm blaming my Asperger's :o

I'm relieved as I didn't start wheezing overnight (colds often go to my chest, and that's what triggered my first big flare up of the CFS) - normally it would've happened by 2 days in, so I think [touch wood] I've avoided that this time :) I gargled with dilute Corsodyl (the proper stuff not the 'everyday' version) at bedtime which seems to help - I do that for a few days every time I get a sore or scratchy throat, and actually I haven't had tonsillitis at all since I started doing that, must be a couple of years now (whereas I used to get it at least twice a year before).

alice, how are you doing? That sounds terrible :(

I had no idea Graham Norton did an advice column! That was reasonably sensible.

Sympathies, fuzz, I'm sick too. The cough I thought I was recovering from has worsened and my eye infection has triggered my psoriasis. I have waiting to 'get better' for nearly 2.5 months now, as there things I'd like to do (like get a driver's lisence) and I barely have the energy for life right now much less anything else.

Oh, that reminds me, does anyone else have psoriasis? Mine was diagnosed this summer. The dermotologists have been really surprised that I have no family history of it all. But they did say that it was due to 'an overactive immune system'. That made me think of CFS. I wonder if they could be connected?

Hi all - feel free to send me to another thread if you like - I don't have CFS but my husband does - diagnosed three years ago.

Essentially I feel like I'm breaking - our son was born three years ago, my husband got sick three months before that and essentially didn't speak to me (or anyone!) for those months because he was so exhausted and unwell. So it was a very lonely pregnancy and birth - especially because it was near the start and he hadn't really been diagnosed, and we didn't know what was going on.

I started a PhD (I'm a doctor) before I had our son - so I work full time, look after our son, and try to keep our lives together.

Sometimes it's great, and he has good days and weeks, and it's like our honeymoon again. Other times, like this week, if he gets a cold or flu it completely knocks our lives out of sync. I have a busy job, which involves a bit of travel, and our son also has yet to sleep through the night (please don't give me sleep tips, I've heard them!)

A close friend has just told me she's expecting, and instead of being happy I'm madly jealous.

I haven't had counselling, although came close when I returned from maternity leave to unreasonable expectations in my job. I had a single session, but just didn't feel I had time for it.

I'm honestly not sure what I'm asking - is there any one else who has experience of trying to keep their lives together when their spouse isn't well?