One of those days!

Sleepless night, dosed 8 til ten, body locked up, forgot morning Meds. Luckily in bedside draw and have water. Full flare I think, lots of stress at moment which is my biggest trigger. Have let it build up and not practiced Mindfulness, stretching, pacing or reaching out. Going to try and sleep for a couple of hours then Re start the day!

Hope everyone is well as can be and gearing up for upcoming school holidays!


53 Replies

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  • Aww Patrick I'm sorry you're having a day like that. Sending big hugs. H xx

  • Thanks H, I know it will pass. Just coming on here helps.

    Hugs felt, appreciated and back atchya!

    Patrick xxx

  • No worries โ˜บ๏ธ That's true, need to stay positive knowing it won't last forever. I've literally just posted my first thing on here today and it's great! Wish I did it sooner.

    Thanks! Lovely lovely hugs.

    Happy days. H xx

  • Hi H, I've been here for a few years now and many people are friends and some feel like family.

    It is the most safe, caring community I have ever known. Hope you stay now you have found it๐Ÿ˜Š

    You get the real deal here, honesty from fellow sufferers who simply want to help and support each other.

    Patrick ( hug specialist!) lol xoxo

  • Aww really? That's so good that you've came across so many wonderful people that have become so close to you ๐Ÿ’š

    Don't you worry, I'm not going anywhere- you'll be sick of me soon!

    That's the most important part for me, the honesty. If I ask a question or something I would rather someone tell me straight rather than try and sugarcoat anything. Plus it's better coming from someone who knows what you're going through.

    Ha! Love it! Patrick the hug specialist!

    H. Xx

  • That's great, your now fully on board! ๐Ÿ˜Š I shall follow you so I can see all your future posts๐Ÿ˜Š

    Hugs are great and free. I believe they swap positive energy between us. Quick ones are great but if you can share a three minute hug then that apparently is the optimum hug duration ๐Ÿ˜Š

    Enjoy the day, your outlook can change much of it

    Patrick x

  • I certainly am!! Thank you, I've followed you too โ˜บ๏ธ

    Yey! You're my first fibro friend ๐Ÿ˜

    Oh really? I'm learning lots on here today.

    Thanks Patrick, I hope you manage to get some rest.

    *sending three minute hug*

    H. Xx

  • That's great, just found your first post and commented too. I learn new things on here and sister sites as well. I have RLS so there is a sister group just for that.

    Priveledged to be firestorm fibro friend๐Ÿ˜ I'm sure many will follow.

    Caught your big hug and going to use it to help sleep. So signing off for now.

    Thanks H.

    Patrick xxx

  • Can I follow u too I'm new & need help & support

  • You can follow me to , soon have you with lots of friends . You can ask anything I have had fibro since a little girl xxx๐Ÿ˜‡

  • I'm 39 year old mum of 3. In the early days of Fibro. Still waiting for diagnosis as I have felt like this for a well.

    I went to see GP who said I need to be managed by specialist & when I saw Neurologist he said it should be GP.

    I'm stuck in pain constantly tired what do I do.

    Advice welcome please.

  • Hi hunny ,I had three children with fibro it's tough I know .Try and get you're dr to get you to a pain clinic .BeforeI went I met with the consultant And he diagnosed me with all 18 tender points .Gps unless you get a rare one and that's rare .It soundsto me as if you have it along with Chronic fatiguesyndrome which the consultant told me is the same as ME .Im going to follow you xx

  • Thank you, my mum suffers ME & Fibro x

  • I'm sure my dad had it ,he was always hurting.I have seen signs in one of my kids but I don't put that thought in their mind .xx๐Ÿ˜‡

  • I recently saw Stroke Neuro who would not manage me & referred me bk to GP.

    I have had bloods & scans which are all clear.

    What can I do next.

    Do anything have to be picked up in scans or bloods for Fibro diagnosis

    I'm at end of tether with no help

  • Go back to you're drs and ask to be refere to a pain clinic .xx๐Ÿ˜‡I know how awful you feel now but I promise you once you have grievedover the loss of the things you can no longer do and get some support ,you can get to a place of acceptance.My biggestadvice is get a hobby just for you it's a disgracing tool and it really works .Im a crafter and I love to create and except for flare ups it works for loads of people .xx๐Ÿ˜‡

  • Thanks x

  • Welcome x๐Ÿ˜‡

  • GPS can,but rarely do, diagnose Fibromygelia. The usual route is to be referred to a Rhumetologist at your local hospital who will conduct tests and rule out other things such as Sleep Apnea. As Matrix has said they conduct an 18 trigger point examination on your body including neck, elbows, wrists and knees. From this they will decide on a fibro diagnosis. There is no scan or blood test to diagnose it unfortunately. So perhaps firstly ask for teferal to Rhumetologist.

    Then as mentioned each hospital has a Pain management team comprising specialist nurses, doctors, anethetists, physics and pain psychologists. These guys take over on the pain management when beyond normal GP levels. They can offer physio, opiate medicines, acupuncture, hydrotherapy, CBT counciling, patches, Meds and trigger point injections. They know their stuff and can offer advise on medication and techniques to avoid or keep Meds to a minimum such as Practacing Mindfulness, an excellent tool, meditation and Tai Chi. Most offer a Pain Management course. Mine was four hours each week for eight weeks solely on dealing with fibro and pain. It covered how pain occored what different Meds do, pacing yourself, expectations, where to get help, your key problem areas, follow up physio and one on one CBT. It was a priceless intro to managing my fibro symptoms and I got to meet eight others with fibro. I wasn't mad, ok a bit, but it did exsist and others had it. Another important accpect is that they will give you details of a local fibro group, who usually meet up once a month. This is a great source of information and a way to build a support system in real life. Like the online one we have here. Learn to manage your illness yourself, find the people and facilities available to you and utilise them. If your Dr is unhelpful or a dud then change them!

    Hope that makes some sense!

    Patrick. X

  • Hi Smckntsh3 of course! Follow me and send me a message how you are doing today. I will get back to you after my snooze!

    The admins on here are a lovely bunch, they are all volunteers and fibro fighters like us. Don't hesitate to ask them for help, they are always lurking around! Lol

    Your in the right place for help and support my friend. Just post an issue try to be specific. Perhaps one or two issues per post so people can give specific advise back. You can post as many times you like and there are no stupid questions, remember that. There are newbies to those who have had fibro for decades and everything inbetween. The vast majority of us have other health issues too!


    Patrick x

  • Thanks

    I recently saw Stroke Neuro who would not manage me & referred me bk to GP.

    I have had bloods & scans which are all clear.

    What can I do next.

    Do anything have to be picked up in scans or bloods for Fibro diagnosis

    I'm at end of tether with no help

  • Fibro does not show in bloods xx

  • Welcome H-ferguson hope it's one of many .Good group nice and safe and we all know what and how you feel x๐Ÿ˜‡

  • Hi my friend so sorry to hear of your flare up i hope you are relieved of this pain soon.

    Hope you manage to get some rest.

    Good luck my friend

  • Thank you for your kind words. So glad I came on before trying to sleep. I feel calmer and more likely to sleep.

    Hope the day goes well for you

    Patrick x

  • I recently saw Stroke Neuro who would not manage me & referred me bk to GP.

    I have had bloods & scans which are all clear.

    What can I do next.

    Do anything have to be picked up in scans or bloods for Fibro diagnosis

    I'm at end of tether with no help

  • I'm 39 year old mum of 3. In the early days of Fibro. Still waiting for diagnosis as I have felt like this for a well.

    I went to see GP who said I need to be managed by specialist & when I saw Neurologist he said it should be GP.

    I'm stuck in pain constantly tired what do I do.

    I'm a serving police officer currently on sick & worried I will be sacked,

    I suffer bad brain fog & heavy burning legs & neck today. So so tired

    What is the best medication to get rid of pain & give me energy

    Advice welcome please.

  • Plus Patrick you have been diverting you're stress which is a lot by doing to much . Take care sweetie and take care of yourself . Everything can wait for now xxx๐Ÿ˜

  • Thanks sweetie!

    Today is a duvet day. Not avoidance but recharging batteries! xxx๐Ÿ˜˜

  • Well patrick I'm very pleased to hear it , watch a good film , nap if you can and just do you and be a bit selfish ,because you give give give . Take care sweetie sending love and hugs ๐Ÿค—๐Ÿค—๐Ÿค—๐Ÿค—๐Ÿ˜‡xxx

  • Earphones in, gentle music going for zzzzs! Can't believe you can fit four earplugs in your little ears! ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

    Your the best๐Ÿ˜˜ xxxxx

  • Well lol I have to admit the last two do keep popping out and you no I persevere.No Patrick you're the best lol sleep sweetly dear friend for so we have become .xxx๐Ÿ˜‡

  • Aw it's horrid when you feel so rough I'm finding I'm feeling like this on a daily basis, no energy to do anything but have s home to look after and my 12 year old, his broke up from school now, his Asperger's very high functioning and you end up feeling so guilty as can't do nothing with him, really hope you start to feel a bit better and things start to ease xx

  • I'm so sorry your son has special needs.

    I used to be a SEN TA so do understand what you must go through day to day.

    Gentle hugs Lu xx

  • Aw thank you for your kind words xx

  • Hello my friend โ˜บ

    I'm so sorry you're struggling so much today.

    I hope you have a better day tomorrow.

    Gentle hugs

    Lu xx

  • Oi! Just seen your comment about Admin lurking ๐Ÿ˜…

    I like to think that we hovver rather than lurk ๐Ÿ˜‰

    3 minute hug on its way.

    Lu xx

  • Hi Lu, better this evening have rested and made healthy risotto for dinner.

    I always like the word lurking, its mysterious and edgy but perhaps hovering or on stand by is more appropriate!๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

    Hope things are well with you

    Patrick xxx

  • Lol ๐Ÿ˜… I'll go with mysterious and edgy any time!

    Glad you're feeling a little better xx

  • Hi my friend

    I am so genuinely sorry to read that you are suffering and struggling and I sincerely hope that your pain eases soon for you and that you managed to get some sleep. I want to sincerely wish you all the best of luck and please take care of yourself my friend.

    All my hopes and dreams for you


  • No sleep Ken but spirits lifted houseful of half drowned teenagers and son stayed last night and are having breakfast. I fear they may move in if displayed any more hospitality! Lol


  • I truly hope that you manage some sleep tonight my friend :) I used to get eaten out of house and home when my children were teenagers? lol! :)

  • Hi Ken! My teen son is not normal! He doesn't eat, crisps, fizzy drinks, sweet, chocolate, and has been vege since birth. He only eats food from scratch and reads the sides of any jars to check ingredients and country of origin! I'm very proud if him but think back to when I was fifteen and the junk I ate! ๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚

  • That is very admirable my friend! I was the same as you then as a teenager as I ate junk all the time. My favourite was a sausage butty! :)

  • I know exactly what you mean about the lack of sleep. Most nights I am awake between 12 and 4 , I can sleep when it's time get up. Last night I slept from 10 till 11.30 and I have been awake till 5 and just had a couple of hours. I have fm and R L S plus trigeminal neuropathy and Ramsay hunt syndrome so the pain is awful. Take care and try and sleep when you can

  • Hi George like you know is one of the times I would sleep after being awake all night, but not today! I read recently that if you can establish a good sleeping pattern the RLS will decrease by itself. At the moment I am trying a gluten free diet to see if that helps the RLS. Also going to buy some tonic water for the quinine which I read helps RLS. Anything to improve is worth a go!

    I hope you enjoy your weekend


  • I hope you have a good weekend as well. I have tried tonic water but it didn't help me, but it may help you as we all benefit from different things

  • Very true. I find spraying magnesium oil on my calves and above my knees two or three times a day very helpful. You can make your own daily at a fraction of the shop price.

  • I will certainly give that a try -may sound daft but how do you make your own.

  • No it's not daft the salts and oil sound like two different things but there not. It's not really an oil but magnesium in a water solution.

    Get a pan, boil the kettle. Tip a kilo bag of magnesium flakes/salts into pan, add boiling water over medium heat. Stir until completely dissolved, cool and put in spray bottle. I add a few drops of essential lavender oil because I like the smell.

    A 1kg bag costs ยฃ5 in Boots normally but has been on offer for a while at ยฃ2.50. T K Max are doing the same bag at ยฃ2.50 as well. I stocked up on a dozen! A tiny bottle costs ยฃ12:00 one kg will make abou eight of those small bottles so you can see the ridiculous financial saving for a little work. I'm thinking of going into business๐Ÿ˜‚๐Ÿ˜‚๐Ÿ˜‚. Obviously soaking in salts in bath is good too but somedays I struggle so have kitchen bowl to do a foot soak instead!๐Ÿ˜Š It has been something that has greatly helped me and feedback from others has confirmed it. Hope it works for you.

  • Thank you so much, I will be giving this a try. Greatly appreciate your reply. Take care.

  • Healing thoughts coming your way Patrick for your flare to ease quickly x

  • Your a sweetie! Thank you. Didn't sleep last night but feel 100% better today, almost human๐Ÿ˜‚

    Patrick x

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