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!).

Hi again everyone.

For those who have young children below school age , what do you do in the day if you are having a flare up ?
Also
I am trying to loose weight at the moment but keep snacking for energy . Im not really sure what to do , any tips on managing weight with ME ?

I've lost a stone just by losing interest in food. I'll often skip dinner entirely as I have no appetite. I made a batch of veggie soup about a week ago which is in the freezer in portion pots. Seems nutritious and easy to reheat.

Bumping...

I have seen GP again and she wasn't convinced. So because I'm feeling rotten and have done for a while, I have opted to start on HRT. Cross fingers I will be a new woman soon.....

@orenisthenewblack that must be do frustrating. Luckily 2 GPS I've seen about ME were very sympathetic and understanding. The third was a bit rubbish tbh. Now I just see the two I know who get it. Could you ask to see another GP at your practice?

Today I made the mistake of chasing my pet rabbit around the garden as he had escaped from his run. I caught him and he's fine. I am not. Everything hurts 😭 arrgh.

Looking forward to the DCs going back to school tbh. We have managed OK with DH taking quite a bit of annual leave. I only had the children for 3 days on my own which was quite enough... They've had a great time with him, nice days out etc and a chilled time with me.

Hi all, I was wondering if there was a fibro thread around here as I need a good vent (sorry!)

I've been diagnosed with fibro following endometriosis diagnosis a few years ago. My life feels like it's been on hold for the past few years. I have had an "almost-cold" since August (maybe a blocked nose, maybe a scratchy throat, it'd be one of those symptoms where you'd say a cold was coming every day, but it never came to anything). I think today my cold has finally landed, and I'm just fed up that the glorious bank holiday weekend has been written off with what has now become a flare up. I've spent most of today asleep, or in pain, or trying to sleep. I have no energy to do anything. I am too breathless to go upstairs. I could cry but it takes too much energy. I'm on tapentadol and mefenamic acid, vitamin d and zinc. Tramadol did nothing for my pain, tapentadol makes me so itchy but at least does something.

DH is marvellous, he's so supportive which makes me feel worse for being so dependent on him when we should be having fun as newlyweds. We were hoping to have started trying for kids but I haven't ovulated in the nearly 5 months I've been off contraception. But then days like today make me question how you do it? Somebody please give me a bit of light at the end of the tunnel!

Hope you don't mind me tagging along.
I have recently been given the diagnosis of Fybromyalgia.
I haven't felt 'well' for many years always tired and every now and again getting the feeling I was 'coming down' with something. And then waking up the next day either feeling 'fine' or 'run down' it would really depend.
Anyway for the last year I have been getting more and more tired. And getting what I thought was the usual aches and pains of a mid 30 year old.
Then last May I started to get pain in my hip, and it kept waking me in the night. As you do you put it to the back of your mind. Then my thigh would feel as though I had pulled a muscle but I hadn't done anything to explain that. Again I just ignored it. Then in Oct I got chronic headaches/cluster migraines. Which lasted 7weeks. Without a break. Then pain in my back/neck lower back, nerve pain in my arms, numbness. Burning in my fingertips. Pain in my legs/feet. The feeling of shin splints in my forearms. Shin splint in my calf's. The feeling of weakness in my legs or arms. The inability to get my words out/ stuttering.
Anyway I then went to the drs. He gave me amitriptaline and did various tests. And never found anything. Blood tests only came up that I had low vit D. So started a supplement. Then went to a rheumatologist who diagnosed fybro. I had a good month since Oct. and I have just started work after a break raising my kids. I was only doing one day. But then have had to do two days and that has killed me. I am two days post my two work days and am in so much pain. Tired. The headaches have started again. During work days I am having to top up the nightly dose of amitriptaline with daily ibuprofen and paracetamol.
I am so emotional. And feel as though I can't keep moaning to my husband. And I have no one in RL who understands the pain. I mostly try to hide it to the outside world too.
How do you cope? What are your go to coping mechanisms if there are any!

Sorry to hear everyone's struggles. The more I read, the more I think I've got fibro. Due to see GP soon, and wondering when HRT will help (two/three weeks in).

Small 'nudge' to help me manage- I've got rid of the bigger shopping bags. If I overfill them I try and carry them and then injure myself. So, smaller bags, smaller chance of coming to grief.

Looking back, it's been ages since I've felt well. I've had life events going on which explained why I felt rough though. With hindsight something else was always going on.

@gotmychocolateimgood that is what I have struggled with too, I think the mix of starting a new job, and having the kids off over Easter. Plus dogs to walk and house to run. It's all so overwhelming. I am mostly a STAHM and the youngest is at nursery 5mornings so I can do things at my own pace and rest as and when needed. But as you know kids are go, go, go! So haven't had that let up for the past two weeks. Plus working 11 hour shifts at the weekend.
I thought going back to work would be good for me. My husband was against it (because of my health) but I hate the thought of being dependent on someone. And just generally not being able to do the stuff I used to do. I push myself, probably to my detriment. And, boy am I paying for it. I am worse, now than I have been in a month.
I'm not sure what is worse the constant migraines or the aching pain in my hand joints/wrists/arms. And I am just sooo fricken tired 😓 but I feel as though there is always just so much to do! It's a vicious circle.

Really struggling and GP has referred to a rheumatologist as all other tests are clear so nothing more they can do

Really worried about trying to go back to work / move around a lot as it seems to spark the agonising pain off again and completely wipe me out but for fibromyalgia you’re meant to exercise and for ME you’re meant to rest - when you don’t know which one you’re dealing with, what the hell do you do?

Thanks