Fibro

Hi I was diagnosed with Fibro earlier this year when I was in hospital for something totally unrelated, well I thought so anyway. My specialist was a rheumatologist and I was rushed in with Temporal Arteritis. While he was examining me he just told me quite calmly that I definitely had Fibromyalgia. I burst into tears but with hindsight it actually explains quite a lot. Not least of which is why my sleep patterns are all over the place and why from time to time I feel generally awful. There are other things wrong with me but I wont bore anyone who bothers to read this. Suffice to say " hello" and I shall be very interested to see how other people find living with this Fuffin awful illness.

12 Replies

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  • Hi I went into hospital with bacteria in my blood stream after a dentil treatment and came home with fibro ,just take it day to day ,try not to get stressed ask for a pain and fatigue clinic it helps talk again daughter nagging in the nicest possible way to motivate me to move. 😀

    Shadow.

  • First of all , you don't catch Fibro . Second and most important, educate your whole family just exactly what Fibro is and yes move ( push thru ) when you can . Google Fibro, print out symptoms, make , insist everyone read . Fibro is not a easy syndrome to live with but the last thing you need is someone nagging you!

  • Sorry you miss understood my response. I realise you can't catch fibro ,I have a number of auto immune desease brought on by septaciumia and fibro just came on as a direction to my body not being able to cope ,I did have an inviremental trigger , that has been confirmed by specialts in the field. I have been very unwell for the past 5 years. And my daughter was nagging me to eat a bacon sandwich ,my fibro syntems on a day to day basis are the most difficult generally to cope with but ,I still smile and have had a lovely afternoon pottering in garden.

    Shadow.

  • Hi

    Nice to meet you :)

    There are lots of wonderful, kind, compassionate people here who will be more than happy to share their experiences with you and help you along the way.

    When my Rheumatologist explained in detail to me the lack of sleep pattern it really helped me to understand why I wake up exhausted every morning. That and feeling like I have been run over by a Mac truck!

    Because the majority of us do not reach Stage 4 REM sleep our cells are not being renewed and the general healing process that happens in 'normal' peoples bodies, does not occur in ours. Apologies if that is not a brilliant explanation, but I'm not a doctor so can only explain in my own way :)

    Randomly this has really helped me to cope better with my lack of sleep and the way I try to manage it.

    As Shadow says being referred to a Pain Clinic can be a great help. You could also ask your GP to refer you for CBT (Cognitive Behavioural Therapy).

    Look forward to seeing you around and chatting again.

    Hugs

    Lu xx

  • Yes a lot of very kin people here. We all have good days and bad days. We support each other in whatever way we can. You may see us joke cry and rant all in one day oh Humm that's me! Ok so please feel free to ask anything. I am sure someone will try to help! I have made some very good friends here and hope you do too. Hugs

  • First, you accept it, now you google it and read everything you can find to educate yourself and friends and family about it. You print out the best ones and put somewhere in visible site so you and others can remind yourself of why you feel the way you do . Pace yourself is key to daily living.

  • Thank you for your responses.

    Redhots7 thank you but I am totally aware that you cannot "catch" fibro. I'm not quite sure how I gave you that impression. I have google'd it but still find it hard to get it through to others, my m.i.l. being one.

    I am already on morphine sulphate ( Sevredol) so not quite sure where I go from here !

    BlueMermaid1 what does C.B.T. do ? How do you benefit from it ?

    How do all of you explain to your nearest and dearest that there are times when you just want to collapse and sleep ?

    Again thank you for your replies.

  • Hi Lin-63

    Welcome to the forum. Unfortunately doctors have struggled to understand what Fibro is (many still do) so it's no wonder that we might find it difficult explaining the condition to other people. As has been suggested, you can Goggle the condition and find the best answers that might explain more easily how you feel. It's important that those closest to us have a proper understanding of the symptoms and how on some occasions you might just want to crawl under a rock or cannot actually go anywhere or do very much. Cognitive Behaviour Theraphy may help you to deal with the condition by providing some structure to how you might cope; identifying things you can consider doing to make things more positive and assisting you improving your overall approach to the condition. Often people have other medical conditions in addition to Fibro, which can often mean that one size does not fit all. I attended a Pain Management Course at my local pain clinic which helped me enormously, principally because it introduced me to fellow sufferers, who can provide an understanding support network, which would otherwise have not been there. Having an effective Pain Management Programme is, in my humble view, vital for this process, providing it is tailored to your specific conditions. I wish you every success.

  • Welcome to the forum and it is wonderful to make your acquaintance. I sincerely hope that you are feeling as well as you possibly can be today? And I genuinely hope that you find the forum useful, informative and loads of fun!

    I am so sorry to read that you are also suffering with Fibro and I sincerely hope that you can find some resolution and relief to your pain. I want to genuinely wish you all the best of luck.

    All my hopes and dreams for you

    Ken

  • Hi Lin,

    Sorry youve been diagnosed with Fibro, but at least now you know what you're dealing with! The devil you know.......etc! 😕. And now you can understand why you've been feeling awful and you'll be able cope better.

    Hi Lu,

    You're right about attending a pain clinic. I went to see a consultant about my ibuprofen use. I've had CFS for several years, but the consultant says I've also got fibro!

    I'm wondering about your info about lack of 'healing' sleep. I've recently had a hip replacement and I'm not recovering as quickly as I should be. Soo now I'm wondering if my awful sleep pattern is holding my healing up. It's something for me to think about anyway!

    All the best to all fibromites! 😁😁

    Anna x

  • Hi, welcome.

    Getting a diagnosis was a relief to me. But finding out about it wasn't. It scared me. Books turned out to be just tales of how people had survived. On line, people were in so much pain and distress. So much more than I was. I felt guilty too. Often I would have times of feeling okay so I would start to doubt the diagnosis and do something normal! You know, like walk the length of the garden! Only to push myself into a flare! Work didn't understand why I couldn't accept my limitations and not do things! Hello? I just wanted to be me again!

    Getting my husband and work to understand whilst learning myself was hard. After all, I still look the same! But I did find Fibromyalgia for Dummies a big help with this. I have also had help from my doctor and now a Pain Management Clinic. I use a TENs machine and meditation to relax tense muscles and reduce pain, the latter directed initially from a book and cd they recommended Mindfulness for Health that targets pain.

    You have been given the suggestion that you should 'push through it' but I have found that only causes further unnecessary pain. I tried Hydrotherapy, which was wonderful, but the therapist was focused on rehabilitation patients and maybe didn't fully understand FM. So it was very hard not to push myself. There was less pain and I could swim further being strong enough, so why shouldn't I? Two days of pain followed. But I did it again and again. To get myself there and not swim? In the end I had to stop or I would have lost my job. In hind sight I should have gone during work on a Friday with the weekend to recover, but I already needed the weekend, to cope with the week!

    Sorry. I've gone on a bit. Hope some is helpful to you?

  • Thanks Sarah-Jane, know just what you mean. On good days I push myself to do "normal stuff" like housework and then spend the next day wondering why the hell I did it ! I had until a few years ago lead a very active life, apart from various illnesses, which are now explained by my diagnosis of fribro. Its hard enough to get my head around the fact that I am over 60 let alone having to confront my limitations.

    Anyway thank you again for your in-put, and I am trying to find when my local fitness place does disabled swims, as I have mobility problems as well.

    Take care x

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