It is so good to read messages on this site about peoples experiences and realise that i am not alone, not just some crazy person/hypochondriac. I have recently been diagnosed with Fibromyalgia, in fact 4 times so far. My Dr at first said it sounded like it, then a Neurologist after an hour on the phone, then a Consultant Neurologist in a face to face appointment and finally a Rheumatologist, again face to face. All this has ended up with me just being given a booklet about it and then discharged?. I get the feeling that i am on my own with it. I lost my job due to the pandemic and haven’t felt well enough to look for another job, so I have been on Universal credit for 20 months now. I am still classed as looking for work, still called and threatened regularly, I filled in a lengthy health assessment 10 page form over a year ago and still haven’t heard anything, they apparently have no appointments. So I will have to carry on feeling like they don’t believe me, but this is something I keep getting from people. In fact I fell out with a friend recently who told me that what I needed was a kick up the backside. So like I read in someone’s message, I too just tell people I am fine or just avoid answering the question altogether, in fact I hardly see anyone now, becoming quite a hermit. I plan to get on top of this and manage it all, but it’s early days and I just feel overwhelmed right now and struggling to make sense of it and everything that goes with it. I was wondering what it was about me that made people disbelieve me, but I see on this site that this has happened to so many others, it seems to be a common experience, which is weirdly reassuring.. Any advice on how to begin to understand and cope with it would be helpful. Thanks…
I'm new to this site: It is so good to... - Fibromyalgia Acti...
I'm new to this site
Hi and a warm welcome. You can find general information on fibromyalgia at our website fmauk.org and our patient information booklets at fmauk.org/publications
Thank you, it’s a really good site and I’m sure I’ll be using a lot..
Hi there and welcomeYou should not be feeling that you're left to just get on with it ... revisit with your GP when you feel ready and have had the time to absorb the diagnosis
We are all individuals and how we react to the diagnosis is specific to each one of us
Ask questions of this site too as there is a lot of help on here
Take care 💕😊
Thank you for your warm welcome, it’s good to know that there are others out there who understand. I will return to my Doctor at some point, but I always react to medications so I’m nervous about going down this road, it’s interesting to read here about others experiences of the available medications. Mostly though it’s getting used to such a different life, I was always so busy and active and that has all changed. I’m so glad I found this site, I think it will be really helpful. Thanks again for your reply to my rambling… x
You're very welcome 💕
No one should be treated the way chronically ill people are treated by the DWP. That stress alone causes flares. And - if you don't mind my saying so - your friend could do with taking his/her own advice. This is a horrible illness - and unfortunately it's a very real, physical and debilitating condition. There are no 'one size fits all' solutions. It's only by trial and error that we find what works for us. Sometimes small changes - like a strategically timed hot bath - or big changes like anti inflammatory diet. I wish you well and send you strength and solidarity. One step at a time and you will surely get back in your stride. Take good care of yourself.
Hi and welcomeI am also quite new to this site. In the last few days I have not felt so alone with it.I have also realised that some of my friends are to put it bluntly useless!
It isn't nice but if you try not to beat it and live alongside it you may find it easier.
I find that when you feel you can, go for walk. Also one of the good guys told me about a Web site "Insight Timer" It is free with loads of relaxation tapes to listen to. Some are a bit peace and brown rice but others really help. I find time once a day to escape for 30 mins with headphones on. Afterwards the fybro hasn't magically disappeared but I feel able to carry on. I also do daily physio exercises in the morning that get me going. Pain management courses through the Drs help. Talking also gets it off your chest. The Samaritans are also a great help especially in the early hours when you may not be able to sleep. If you do wake up don't lie there ruminating get up have a cuppa and use a distraction technique. Often I then go back to bed and it is not so bad (Apart from my snoring husband!)
Anyway stay strong. Take Care PS Thanks to other members. We are definitely not alone!x
Hi.. Thank you for your message. What you said about not trying to beat it but to learn to live alongside it struck a chord with me. I have been getting more depressed thinking about how I can get better, pull myself together, get back to how I used to be etc.. etc… partly due to other peoples expectations of me, to always be the strong person and the carer but mostly down to me and my own expectations of myself and my ability to beat myself up if I’m not this person. Some of this is down to this awful journey starting 3 years ago when I was knocked off my bike, I had some injuries, but all in theory recoverable from. Unfortunately I haven’t recovered and have over time developed a list of problems, now finally diagnosed as Fibromyalgia, Migraines, Arthritis and other things, probably triggered by the accident. In a way my head is still telling me I should have recovered by now.. it’s a crazy journey and it’s good to know others are going through it too, not that I’d wish this on anyone. I do agree with you about relaxation music, when you find the right music it’s wonderful, definitely not the peace and brown rice variety though 😀In my previous life I was a Yoga instructor and I have a good collection, eventually I would like to return to this, maybe gentle exercise and relaxation classes for those with this condition and other similar conditions, but I’m far from being able to do this yet, maybe one day. Once again thank you for your message you have definitely got me thinking and rambling….. x x
Hi.. Thank you so much for your message. I am rather emotional at the moment, even crying at every sad advert!.. but your message brought tears to my eyes. I really appreciate your message of strength & solidarity, when you don’t know me at all & are suffering yourself. I only signed on this site 2 days ago but already I feel less alone. As time passes I know I will find a way through this, I am a strong person, I just need to find that strength again, but as you say one step at a time. I will print off your picture and put it on my wall to remind me to do just that. x x
Hi Collager, welcome. I’m sorry to hear about what your experiences. Please have faith, it is a rollercoaster, but, in time you will adjust. Don’t worry about others, they are just ignorant, selfish
Apologies, sent previous reply to soon… trigger finger 😂. As I was saying, those individuals lack empathy. Just concentrate on yourself and do as much research into fibro. In time, you will find yourself a new career that is suited fir you 🥰
Hi Anita.. Thank you for your message, firstly it made me laugh. So many of the messages I send are in two parts because I press wrong buttons or press too soon, I thought it was just me.. It is early days for me with this diagnosis but now I have it I feel I can start to move forward. It has been a difficult 3 years, I had a bad bike accident and have simply not recovered from it, I’ve just got worse. I was a busy and active person before, so it’s been hard accepting that the accident has changed my life so completely. Until recently I didn’t know how, why etc.. and neither did the Doctors, they mostly dismissed me. I struggled on for some time but ended up having to go back feeling desperate, now with this diagnosis I can begin to understand and accept it. It’s lovely getting such positive messages of support on this site and being able to read other peoples stories and experiences. Thanks again for your message. x x
Just a thought. - To send a copy of this email to your unkind friend. It may help them to grow as people because you are speaking your truth to those you know who will listen and understand. - It is a long journey and long battle you are on but you will find ways to cope and uncover some helpful remedies if you read what other sufferers here have discovered works for them. Good luck.
Hi.. Thank you for your message. I have been friends with this person for 26 years, which makes it even worse as he knows me and had no reason to say it, except I think he doesn’t want to accept that I’m ill and that its changed me this much. He just tends to open his mouth before thinking, not a good thing in anyone. It is good to be able to communicate on this site, so many kind and understanding people, I think it will be really helpful.This journey is daunting and I’m still struggling to get my head round it, but I’m a strong person and I know I’ll find ways to cope and move forward and there’s some good ideas and inspiring stories on here. Good luck to you too on your journey. x x
Wow what a bi@@h your friend is. Who needs friends like that. I only surround myself with people who bring something to my life and who I want to be with. Unfortunately I am someone whose life has changed significantly though Illness and when others see what you are going through as in friends, they don’t understand how you feel and why you have to sometimes cancel meeting up. You will get lots of support on here ❤️
Hi.. Thank you for your message, so many kind people on here it’s wonderful. I think you are right about my friend. We’ve been friends for about 26 years now and although his words have been hurtful and damaging, I suspect he just doesn’t understand and doesn’t want to accept that I’m ill and that it has changed me this much. Which is what I’m really struggling with, once being a busy active person to now, not working, barely going out and hardly seeing anyone when I used to be surrounded by people. It’s all hard to accept, especially when they then add that there’s no cure and that’s it. There seems to be so many strong and inspiring people on here, reading their stories is so helpful. Thank you again. x x
Hi I am new to the chat too but I have had Fibromyalgia since 1994 diagnosed in 1996. I read that they gave you a leaflet . I feel sad that they are still doing that as it's not the best way to find out you have a condition that is not curable. I would say you need to apply for PIP as it is now a recognized disability. It will allow you to have days off from work when you are not able to go.
Hi. Thank you so much for your message. I could probably ask you a million questions about this as you have been dealing with it for so long, my heart goes out to you. The Rheumatologist I saw at the beginning of February diagnosed me with one eyebrow raised, he was dismissive and made no secret of the fact that he didn’t believe in it. He answered no questions, then seemed to get excited when he noticed I have painful swollen finger joints and enthusiastically diagnosed me with Osteoarthritis in my hands. I asked more questions about fibromyalgia, but he just gave me this little booklet and told me I was discharged and my time was up… I was in a daze afterwards, to be diagnosed with this, told its incurable, then discharged and told to go away. I’m guessing not much has changed. As for benefits I am on Universal credit due to losing my job because of the pandemic, but I’m still awaiting an appointment for their health assessment, 20 months now and still they have none. Until then I’m still classed as looking for work and not entitled to claim any disability benefits, not until THEY decide whether I’m ill or not and I’ve no idea when this will be. Please excuse my ramblings, my head is all over the place at the moment. Thanks again for your message. x x
Put in for PIP and phone ESA application as you are experiencing a flare up due to the stress of the Pandemic. If you get no joy go to your local MP and complain. Tell them you are experiencing metal health problems too. Change your doctors if they are not sympathetic and ask for a referral to a therapist as it will help.
Hi. I need to look into PIP & ESA, I don’t know anything about them. I have been passed from one person to another with Universal credit every two weeks. Often ending up with some over keen individual whose decided that it’s their personal mission to make me get a job, whether I’m ill or not. On a bad day I have literally begged them to investigate me for fraud, as they clearly don’t believe me and have threatened me so often now. I just get told that the health assessment people have a backlog so they can’t say when I’ll get an appointment. I’m compiling a list of all the battles I’ve yet to fight, but it’ll have to be on a good day. Thanks for your advice and understanding. x x
I am sure you will be completely exhausted by now with all this, but I am thinking you have a right to complain. I am just not sure who to. This Rheumatologist did not help you in the least and you are certainly within your rights to ask for a second opinion, perhaps from a different hospital. I was really so lucky with the lady I saw for my diagnosis. It does not seem as if you were. I hope you have a decent doctor who would support your complaint. If you get no help, I suggest you ring the Samaritans and see what help they can give. They saved my mum's life once when she had a bee sting in the night, was swelling up and the doctor would not come out. You need to be given the right support you need to live with this affliction and it sounds like you've just been dumped. You deserve better than the response you got and who knows, the Rheumatologist concerned may not even have been in their right mind due to their own stress.
Hi… Thank you for your reply.. It is so true I do feel completely exhausted by all this, it has been relentless. I do want to complain, I feel so angry, not just with the Rheumatologist but with everything and everybody. I do want to rage and shout about how unfair it all is, I want my life back… then there’s the crazy crying at the slightest thing.. but it’s early days, only 3 weeks. I’m guessing most people feel like this at first. Right now I’m just trying to go easy on myself, not beat myself up. It’s hard to get your head around just having this condition and then there’s the disbelief and stigma to deal with, that is really hard to understand. Thank you for your understanding, this site is so helpful, I feel a little bit saner when I read other peoples experiences and I realise I’m not the only one. Take care x x
Thanks for your reply. It certainly is early days but it's a hard reality to face and I feel that you are already facing up to it. - I was very lucky that my husband generally supported me even if he didn't really understand all the symptoms. I think it must be extraordinarily hard if you have to work when you have fibro when young and also are bringing up kids. Any work or childcare I did was long before I had the diagnosis post sixty but I always used to wonder why I always felt so tired and depressed and all the other things like why all the pain? I believed everyone had degrees of pain in their body until I asked my husband if he had pain all the time and was surprised when he said he didn't! - Fibro seems to me to be a whole raft of different symptoms that crowd in and out while the body discomfort can get worse, but as some people I've read on this site say - encouragingly for me too - some times are easier than others so there is like - remission! Live in hopes!- It's when you set yourself up for a flare by doing too much or trying to please others it gets more uncomfortable, but it will pass and change. So, all I can say is, yes, be gentle with yourself. You are so entitled to go easy on yourself! - Look into your own eyes in a mirror. Know that you are not a shadow or the wraith you may feel like! Grieve for now, that's healthy. You will perhaps do things with your future life that are more deep and meaningful than you imagined possible for you. - We are going into Spring now. Longer daylight hours. It all helps. Also, for me, it is fellow septuagenarian friends who are also now less fit and suffering from other things, and who share with me their own empathy and kindness that makes life more pleasant again. Friends chosen wisely emit support vibes like no other and there are still times when you can all share the prosecco and laugh ... or cry!
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