Living with Fibromyalgia 🥴

[NadeKell]

Hi! I am new to this group, but was diagnosed about 8/9 years ago by a Rheumatologist. My story so far...

I have 2 boys, 9 and 11, a Husband and wider family. None of whom really truly recognise my Fibromyalgia. I have heard the term ‘mind over matter’ loosely used 😬 I suppose I just have to ‘get up and get on with it’ as I work during the week, and have kids’ football and ‘housewife jobs’ still to do at weekends in my free time. I ache ALL day! I always have something wrong with me, as again I often hear being said about me! 😂 As I lay in bed at night, it feels like my vertebrates are on fire, my neck always aches against my pillow, I have to lay a pillow between my knees and they are painful when they touch each other, my skin tingles and itches like mad, I sleep with layers of clothes on because I’m cold (even with socks on EVERY SINGLE NIGHT!) and then have to have a fan on 🥴 I wake up constantly in the night, feel drained in the morning, yawn constantly which makes my eyes watery and sore, but I could easily then sleep for 4 hours straight in the afternoon! 😴 I have terrible IBS, I’ve already had surgery on my jaw for TMJ, Median nerve and Carpel Tunnel surgery 2 years ago, and I take venavalaxine Twice daily. Oh, and I also had half of my thyroid removed and need to take thyroxine everyday, I’ve had surgery for a prolapsed bowel and suffer terrible ‘down there’ because of my IBS (I’m gluten free and lactose free now which helps) and I have low Iron and Vitamin D levels which I take tablets for everyday.

So.....there’s a day in my life...please tell me I’m not the only one?!

Reading this back it does sound quite horrific! 🤭 I didn’t realise how much I was falling apart, or maybe how much strength I have to get through each day! 🤷🏻‍♀️ I’m not even 40 yet!

I’d love to hear any similar stories of people’s lives with Fibromyalgia as it’s not really spoken about in mine, yet I am reminded of and am living (very silently!) with it everyday.

Sorry for the long winded post, and thank you for reading 😘😘

[Yassytina FMA UK Volunteer]

Morning and welcome, never worry about a long post, you are telling us about your daily live, so much going on for you working, family ,no wonder you are really drained and other health conditions as if Fibro isnt enough, I do hope some of our members around your age group pop on too have a chat, , my daughter is 34, two young boys ,works 3 full days has endometriosis as well as fibro , recently separated so I differently know how you feel. Family sometimes need a nudge and have more empathy and support you, if they read some of our posts what youngsters go through. Xxx

[Midori]

You are not on your own; I have brought up 2 kids with Fibro, (although I was not diagnosed at the time), yes, it is a struggle, especially when folk don't understand the pain and fatigue we experience on an everyday basis.

Have a look online for The Spoon Theory, it will help you to understand, also make it easier to explain to the rellies.

Too many folk, (including doctors, sadly) still don't believe this is real.

My kids are now, fortunately adults, and the eldest has her own family; she still doesn't really believe. My son, however, also has suspicious symptoms, and is my carer.

Cheers, Midori

[Sally444]

Hi. I can totally relate to what you're saying. I'm just over 40 but most days feel like I'm 90! 😂. I also work full time and look after the house (jobs shared with my lovely man) , itch, have itchy lumps come up on my face almost daily, have night sweats regularly regardless of the temperature, have had to cut out wheat, dairy, caffeine and alcohol (most of the time! 😊) have venlafaxin and vitamin D, have pain in my lower back, neck, shoulders, arms, legs, toes, very strange pin and needles in the night, can't stay asleep, feel jet lagged every day, my pillow sometimes feels like a brick, I suffer with really dry, itchy eyes which sometimes just blur over for an hour so yes.....I'd say we are quite similar. Lol. Please try to ignore people who are negative to you, it is so unhelpful. You know how you are feeling so trust yourself and try to educate people. I do find that a positive outlook is helpful but I also allow myself some days to be fed up. I hope you can get your family to understand a bit better. Best Wishes. x

[giraffe8]

Sorry to hear you are suffering so. Me too I have terrible IBS , very itchy skin , pins and needles gum and jaw problems ,tinnitus , blepharitis ,never feel rested amongst many other symptoms. I look back and wonder how I managed to cope for years with working and bringing up children in so much pain all the time. Then pension age raised to 66 with no notice. I learned what I had was fibromyalgia in my thirties now in my sixties it is not getting easier , feels harder to cope with everything. Try not to do over do things now if possible conserve some strength . I stay awake as long as possible as l just wake up on and off all night and can not get really comfortable. I also have SVT and ectopic heart beats all very unpleasant.