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!).

[MEwhatnow]

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

[bestsquirrelinthewholehole]

@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.

[picklemepopcorn]

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.

[bestsquirrelinthewholehole]

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!

[PlanBea]

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!

[gotmychocolateimgood]

@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.

[orenisthenewblack]

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.....

[gotmychocolateimgood]

Bumping...

[gotmychocolateimgood]

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.

[IveGotAlpen]

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 ?

[orenisthenewblack]

I am lucky in the sense that my symptoms are mild - I do work full time, but have given up after work activities. I feel bad enough so do not envy you having to stay in bed.

After a three hour meeting this week, I took myself to my car, and slept for 30minutes over my lunch period. Such fun.

On a positive, my aches and pains are better this week. Because of vitamin pills, evening primrose and Actimel? Or has this flare up cleared? Wait and see I suppose.

Has anyone tried a hot tub to ease things? 😜 Thinking of ways to persuade DH to buy me one!

[KingHenrysCodpiece]

Just popping in to say thank you for all your good will messages earlier in the thread. I really aporeciated it. Sorry I didn't come back, it all became a bit too much because I have been really really bad over the past few weeks. I'm in horrific pain. The problem is every time I find a coping mechanism my body seems to adapt and up the ante. I took Amitripyline, then some more Amitripyline but its gradually adapted.

Some days all I have done is sit in bed and internet surf posting elsewhere on MN, whilst simultaneously crying on and off. Yesterday, I achieved exactly zero and felt like shit for it, all I managed was a trip to the local Tesco Metro, cooked a chicken with some mash and veg. That was all in the entire flipping day, and I can tell you that took real effort. Afterwards I crawled back into bed. Woke up this morning and burst into tears straight away as my neck, shoulders, jaw and even my brain felt like they were on fire. Brain has no pain sensors so go figure. Now dosed up with maximum dose paracetamol. I'm not taking anything else or I won't be able to think as the Amitrip is bad enough on my memory.

I didn't want to be negative on the thread, and I didn't want to concentrate on it. My heart goes out to anyone experiencing even half these issues. I will say please don't let medical professionals fob you off as they can do very little for you once you reach crisis point. Push for a referral and list all symptoms. Doctors know very little about central nervous system sensitisation often the precursor to these things.

Take care all x

[gotmychocolateimgood]

I feel like a bit of a fraud as I'm going on holiday next week. Just a cottage by the sea, it was booked months ago. But I feel like I shouldn't be going away as I'm off work sick. In reality I'll be sitting in the garden or lying on the sofa most of the time. Relatives are coming to entertain the children. Hoping to get onto the beach on a camping chair.

My head is a bit less buzzy today and I haven't felt cold which is good. No pain either just no energy.

[OverwateredCheeseplant]

@ktyoupigeon yes, fexofenadine. And I have eye wash, false tears and hydrocortisone for my eyelids.

[KTyoupigeon]

overwatered are you taking a daily antihistamine?

[OverwateredCheeseplant]

Yy to the freezing hands and itchy sore eyes.

[picklemepopcorn]

Ah, is that it? I'm wrapped up on the sofa feeling exhausted. It's either the weather or the fact I was very busy on Friday.

Itchy sore eyes, anyone?

[gotmychocolateimgood]

Is anyone else finding the changing temperature difficult to cope with? Yesterday it was really warm and I sat in the garden in rolled up jeans and t shirt. Today I'm fully clothed with an extra jumper and dressing gown on top, in a sleeping bag under my duvet. Even with wrist warmers my hands are freezing.

[MidnightBlue28]

Thanks, I’m hoping it does too. Good luck with your year off

[gotmychocolateimgood]

Midnightblue28 I hope your time off helps you feel better. I'm taking a year off teaching in September. Money wise we will just have to cope.

[MidnightBlue28]

I’m off work on a week’s annual leave so that I 1) don’t have to request time off for the scans and 2) have totally overdone it recently and my body is protesting very loudly about it

[OverwateredCheeseplant]

Hi all

Was diagnosed with fibro a few years ago. Life is limited now. I can’t bend down, can’t walk or drive very far. Can’t do my garden. Can’t get down to the ground. And now a lovely new symptom, numbness and pain and pins and needles in my hands and fingers. Awesome! It’s the gift that keeps on giving. Often I can think positively about it but the hand pains are doing my head in today. Pregabalin hasn’t worked, my body is too used to cocodamol.

[Pawtrayt]

@gotmychocolateimgood after I had been following a gluten free diet for about 6 months I spoke to one GP about testing for ceoliac disease. She said I would need to eat gluten again for 6 weeks for the test to work and the blood test isn't always accurate - it's possible to get a false negative result. I couldn't face the thought of feeling so ill again to take a test that may not give me any answers.

So I don't know if it's ceoliac disease or non-ceoliac gluten intolerance. It's a bit frustrating not knowing but the most important thing is I'm pain free, can drive again and I now work full-time and don't feel wiped-out on my days off.

[Zoflorabore]

wanting to be believed was such a huge issue with me. Family have not understood the severity of this condition and more importantly, how it affects me.
I was seen as the flaky one, the one who was always sick with "something" and I think that even with my various diagnoses I still am to be honest.

My local authority ended up sending me to The Spire hospital in Liverpool which is a
private hospital as they had no appointments at NHS hospitals.
The consultant there told me within the first five minutes of my appointment that I do have a diagnosis of fibromyalgia and I just burst into tears. It wasn't because I was sad, it was that someone had believed me.
He said that was a very common reaction.

I was weeks away from being 40. Looked good i suppose, life was good "on paper" but the reality was very different.

I know that's lots of my family dismiss this condition and that hurts.
My friends are brilliant though and understand my limitations and what I have discovered over the last year is that if I do too much one day, example, full day shopping in town, meal, walking around shops all day etc then I pay for it dearly ten next day especially.
I have found the "spoons" theory is very true.

As an aside, has anyone experienced lower back pain that goes deep round into the pelvic area? This is a new one for me and is ridiculously painful.
Really don't want to go back to doctors today ( ours is a ring up at 8 for appt system
) as I'm fed up of going but I really don't like this at all.

[gotmychocolateimgood]

@Pawtrayt thank you for sharing your story. Can I ask whether you had a test for coeliac disease? Mine was normal so I'm wondering if cutting out gluten could help me. Thanks again.