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Flare Up Pattern

Bloop45 profile image
24 Replies

Good morning everyone!

Times are stressful, I’m frontline NHS so I knew I was going to be stressed out recently, alas, I couldn’t stop the fibro flare!

Just wondering if this is just me or everyone? When I flare, I get different symptoms or “flare flags” as I call them spread out over a few days. So Monday-banging headache almost migraine, Tuesday-Wednesday-PAIN! Levels high! Sensitivity high! Thursday night into today-Hello IBS! All week-blasted twitching. Bad twitch in neck led to trapped nerve pain, so every twitch thereon made it worse 🤦🏼‍♀️

It would be a rough day, but it would be so much more convenient to have all my flare symptoms on one day!! I’m quite new at recognising my flares, but this one constant! Over Christmas it did the same. Sorry to rant! Just feeling a bit fed up today and hoping it all settles down for work tomorrow!

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Bloop45 profile image
Bloop45
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24 Replies
Nanie75 profile image
Nanie75

That you are continuing to work with all these symptoms under the stress of the NHS is truly heroic. I’m full of admiration and gratitude. But you will STOP won’t you, when the pain takes over completely? Don’t be a Saint! We need good people like you to last a long time! It’s no weakness to need time for yourself. Most people in the ‘caring professions’ aren’t very good at caring for themselves!

Cherish yourself just a bit! It is allowed.

Strength and courage to you.

Bloop45 profile image
Bloop45 in reply toNanie75

Awwww thank you! I’m lucky at the moment as our workload has gone down and lots of staff, so if I’m struggling I’ve got lots of people around to help, unfortunately I can’t take time off as even with occy health’s recommendation, managers won’t let me have a set amount of days as kind of free sick leave due to fibro (going to appeal once this is all over). Luckily my days are a bit longer so I’m having more time off to chill out....not like I can do anything else!

Cat00 profile image
Cat00 in reply toNanie75

I usually get my symptoms like you, often one day after another. It always seems particularly cruel to just get over one pain and then to be dealt another. Plus it makes people think you're a hypochondriac even more. Ive just been fairly inmobilized by pulled muscles in my back, now after 5 days it's got a lot better but I've know been crippled by a fairly intense migraine not doubt the IBS will come after that. Plus masses of insomnia inbetween. It's seems to be the nature of the beast that all these conditions are connected.

Nanie75 profile image
Nanie75 in reply toCat00

Dear Cat 00

Don’t personalise the pain😘 it’s the nature of the &!?@ing beast as you do rightly say.

It is a syndrome- not a person who’s out to get you!

We don’t think you’re a hypochondriac. We know what it’s like. No rhyme or reason to the s****ing thing

I just had a week of crippling headaches waking up each morning with a ‘oh no!’

They went and I’ve had 5 days of IBS and shooting pains in my hands .

In a flare up -which what you’ve just been through sounds like-Escape on your own to a room where you are comfortable and can have peace and quiet and get those doubters to leave you alone. I can’t bear music when Im bad; sounds hit my head like a hammer.

Get a GP diagnosis printed out and leave it for them to see?

I’m relatively new at this game. Others will have more details of prescriptions/ etc

I only take paracetamol,

E45 itch relief cream

No man made fibres next to the skin

Or biological detergent.

Natural hair shampoo/ etc

Dermol shower lotion

Limited (real) coffee - instant is poisonous/ no cola drinks of any description.

Extreme weather changes can affect you.

Cotton sheets.

Hope some of this really mundane stuff helps.

Hang in there. You’ve just come through a lot and are worn down. Give yourself a break and some permitted treats.

Strength and courage to you.😘

Bloop45 profile image
Bloop45 in reply toNanie75

I hope you’re feeling better soon!! I’m on day 3 of my IBS, although the main erm action? Has stopped haha because I took loperamide yesterday (I was at my wits end!), my god the cramps as I got to work this morning. Lots and lots of peppermint tea has been consumed! Feel bloated as a whale today, my tummy just feels super delicate. Plus the horrible sharp shooting pains all across my stomach 😩 It’s an absolute b**tard! Was explaining fibro to my friend this morning and all I could think of was “basically, it’s like you’re a snowflake, but with your nervous system. You’re ridiculously sensitive to all sorts”

Cat00 profile image
Cat00 in reply toBloop45

Oh peppermint tea! I had a friend that always drinks it and I can't even stand the smell of it because I associate so heavily with IBS cramps.

I had a brief time working in Tesco's (which I hated for a multitude of reasons) but I used to have IBS so bad that I used to tie a pair of tights really tight around my waist bc the pain meant I had trouble standing up straight and the tight band helped. With that and sweating bc of pain i must looked a right sight!

Cat00 profile image
Cat00 in reply toNanie75

You're kind! You know I once asked a doctor how I was supposed to know if I was a hyperchondriac or not given the ridiculous litany of things wrong with me. She said that I didn't need to worry about bc she had patients that came to see her everyday and she new I had an aversion to doctors!

Bloop45 profile image
Bloop45 in reply toCat00

I worry about it with my GP too! But he’s super lovely and so understanding and always tells me I’m not bothering him!

Bloop45 profile image
Bloop45 in reply toCat00

I totally get the hypochondriac thing! People I work with and even my mum say “oh what now?” Or “you’re ill AGAIN?!” Thankfully my mum is a lot more understanding and I think it answered a lot of questions for her (I was always that kid that always hurt or had something wrong so we wonder how long have I really had this!) Luckily my work colleagues who I work with most days now understand as they’re the ones that have seen me at my worst and broken, and they’re the ones who have comforted me (and sent me home!), they’ll jokingly say “oh what now!” And instantly regret it from the death stare!!

Cat00 profile image
Cat00 in reply toBloop45

Yes I was always in pain as a child, plus had broke my arm and ankle when I was at school bc of my hypermobility, so It answered many questions about my youth. I went to boarding school when I was young where I was punnished a lot for being ill, they thought I was making it up. Which leaves scars obviously but my mother has always tried to understand and been sympathetic. Now, however she has developed a condition called Polymyalgia which is chronically painful too she is has even more ability to empathize .I'm lucky my husband is very understanding too, he's seen me at very worst when I got to 5.5 stone.

Purplebluebell profile image
Purplebluebell

Hi I had to go part time several years ago but now I feel so anxious have had to take time off from front line services. I now feel I've lost mental as well as physical health. Don't be like me! Listen to your body. I'm 60 and have done 40 yrs. Just realised with fybro I can't continue to do everything. Its so hard when people don't understand that. Good luck.

Blue1927 profile image
Blue1927

Yes my flare ups are different each day, not sure if I am coming or going most days! Look after youself, you and all the NHS frontline staff are doing an amazing job and I am proud of our NHS workers, but for you to have fibro as well and carrying on just takes so much courage and strength. Please though, look after yourself and learn to rest. That is something I am still coming to terms with x

Bloop45 profile image
Bloop45 in reply toBlue1927

Thank you ❤️❤️ today was quite tough so I’m going to relax and play animal crossing tonight and dose up. I’m on call tomorrow so I’m hoping I don’t get called in and I can rest! I was diagnosed in November and I’m still learning so much about it xx

Blue1927 profile image
Blue1927 in reply toBloop45

I was diagnosed last May and still getting my head around it all. I am so lucky to have an understanding Husband and he has been so supportive, especially when I had to make the worst decision of giving up my job. Relax, I have never played animal crossing but like my sugar crush games. Hope your not called in tomorrow so you can rest xx

Bloop45 profile image
Bloop45 in reply toBlue1927

Animal crossing is so relaxing!! I’ve got some course work to do too. Just called up and so far nothings been booked for me, so hopefully it stays that way all day! Good job really as I had such a bad night with IBS I’ve not long been up and I feel crappy today xx

Blue1927 profile image
Blue1927 in reply toBloop45

Oh i’m so sorry you have had a bad night. Try and relax as much as you can xx

Julesubu profile image
Julesubu

I had to give up my full time acute work a few years ago due to Oa on top of fibro. Now just part time advisory role but still a struggle. Was hit by menopause which has launched my flares into orbit.

Try and rest when you get the headaches and see if that helps at all .

vampbat profile image
vampbat

Hello Bloop45 sorry to hear about your flares...... i am going daft here as not able to get outside only to meet hubby from work and as i live in a one bedroom flat i can only do so much *cleaning* and find i am staring out the window and thinking of my home in Ireland and all the space i used to take for granted a big garden and fields all around us there, now live in Dundee in Scotland and i do Love it here and all the beauty that surrounds us here, i love to walk and it is the one way i can really chill in my head so that helps with the flares i am having at the moment, i know its stress about how things are at the moment, i am waiting for a start date to work in the local hospital as a domestic, my hubby is a porter there so that is something to look forward to whenever it starts for me. my flares are so bad at the moment, my back and shoulders and neck feel like i have fire running up and down all over and shooting into my skull and it hurts just to blink sometimes, hubby is so understanding and loving and caring i am so lucky ^_^ . anyway enough about me...... i do hope your flares ease up a little for you but i know its always there in the background just waiting for an excuse to jump up and say here i am...... my thoughts and Prayers are with Everyone here <3 stay safe and healthy x

Bloop45 profile image
Bloop45 in reply tovampbat

Good luck with the new job! What a time to start as well! Domestics and porters are the unsung heroes, we have our own porters so they’re part of our family, but we also have the same domestics visit our department so we all chat away! Yesterday was a busy day (because we don’t have a porter for the CT scanner on a weekend, and we only do urgent inpatients and A&E patients.....so we’re the porters and I don’t know how they do it! I went to the top floor back to ground floor and back with a bed in full PPE yesterday and it destroyed me!) but my fibro was behaving apart from some effects from the IBS flare. Last night I was pooped, I got into bed and rolled over and all of a sudden my stomach was killing me 😩 really sharp pains and I kept feeling like I was going to be sick. No idea what was going on but ended up sleeping upright, so now I’m sore today!

HippoChick888 profile image
HippoChick888

Yes, yes, yes!

FM flares do present differently each time and sometimes each hour in a day. That's so much of my frustration. I'm retired from nursing and I think I had FM prior to diagnosis

10 years ago. Flares seem to be a surprise each time they occur. I am so sorry for the misery you are experiencing, while so many others need you right now!

These are just words, I know, but I hope you can take heart knowing other people do care.

Better days ahead🕯

Bloop45 profile image
Bloop45 in reply toHippoChick888

Thank you ❤️

concesoeu profile image
concesoeu

First of all I want to thank you from the whole of my family, I think you are amazing. My flare ups are of a similar pattern, I never know how long they are going to last Or to what degree, it has been from a few days to six months. I have learnt that during this time I have to go without and try to not fight it. If I need to sleep during the day I do . But in your job it must be so hard to do that. When you do get any time off be kind to yourself and rest as much as possible I am sending all my love ❤️💕 to you and your brave colleague s and pray that you stay safe. THANK YOUXxx

Bloop45 profile image
Bloop45 in reply toconcesoeu

Awww thank you so much for your kind words!! I’m still learning so much about my fibro and when I’m actually having a flare. I’ve just started to realise when I’m exhausted, I need to rest xx

concesoeu profile image
concesoeu

Sorry I meant go with it not without lol x

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