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Fibromyalgia Action UK
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Staying Strong, My Story Fibromyalgia

Hi I’m Chris a male who’s aged 33 and now learning to adapt to life now finally after so many tests coming back clear hearing my doctor say I have Fibromyalgia and the tablets I’m on are the correct thing to help but there is no cure. Having that information given to me a month back or so I think I’m doing rather well. I had to remind myself a lot of times it could of been a worse outcome! Also I had to stop thinking about all the things I couldn’t do anymore and focus on what I can.

I have read a stupid amount of information on the condition and still have much to read and learn, but by all accounts so does the medical sector! I still struggle to understand how this all happened. You see for me I was working full time and going to the gym for a good while and starting to get my life in a better place when all of a sudden I kept being hit with, what seemed like bug after bug, then after a horrific 2 weeks off sick with the worse flu (I guess I’ll call it) I started to wake up feeling super weak and stiff like I’ve never felt before! I actually remember I started to sleep on the floor! Felt like something I needed to do and I remember the next day being more energetic for it and was like what the hell is this! After two weeks I was feeling weak but miles better. I returned to work thinking my god what was that (real flu?) This is where it went horribly wrong! I returned to work on normal hours and did normal duties and few days later I went back to the gym with the mindset I’ll slowly build myself back up,,, ohh how wrong I was! The session actually went great and I returned home feeling tired but great! Later that evening though I was hit hard and went to bed early. Next day I returned to work feeling so bad with headaches like never before and super weak in the legs and burning up (sweating even just standing) I later left work due to it and was off 6 weeks! I never sadly returned to full health and it’s been a up and down battle (in most cases) even daily to this day. I do have my feeling good moments but with stiffness always there (mostly in my right arm, neck on off and lower back (hips) always.

After those 6 dreadful weeks off sick (longest time ever being sick) I returned to work on reduced hours and did a few more hours over few weeks but never returned to full time as just wasn’t possible. I kept doing that from November 5th until last week. For whatever reason my limits to work doing what I was (standing 6 hours a day on the shop floor) was no longer possible. I have up and down energy levels for sure but for whatever reason the last month had me in and out of work as couldn’t simply stand that many hours anymore.

Now to focus on myself plain and simple and adapt to this life long condition. I’ve left my job after many years as put simply standing 6 hours a day isn’t fibromyalgia friendly! I am having some time out to work out what foods help best and what to avoid and getting small walks done daily to keep me as active as possible without pushing myself too far! I over did it today with too much walking and been written off for the day basically as a result. It’s all about the small wins now and fully adapting my lifestyle and getting a new job part time to start with in a much more suitable job role.

Sorry for the long post, I guess I needed to get this all said out and with the hope it helps other people with my horrible condition understand and relate to me.

Kind Regards

Chris

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Chris,

Welcome along.

You sound very well organised and determind to do the best for yourself,,, really we have to inform ourselves as best we can as the attitude with most Dr's is in my opinion bordering on neglect if not grounded in ignorance most of the time.

Do look at grains, dairy, soy, sugar and even worse in my opinion is the sweeteners,, especialy Aspartame as it is neurotoxic.

Work on all forms of stress and reducing them, Phisical, Mental and Systemic as they all have the same effects on the body. The mental is the most difficult but it just takes more time lookng at what gets your going,, becoming aware of your reaction and starting to pull yourself up by saying I am not going to react,,, it's takes practice but you get better with time. The diet is a big part of systemic stress in my opinion.

One book I would recomend and you will be able to pick up a copy for a few pounds on one of the online auction sites is: The Fibromyalgia Advocate,, Devin Starlanyl MD. She is an american Dr with fibro herself.

Best Wishes, Ray

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Thank you very much for your reply! :) I’m very much in a focused mindset now of doing what’s needed to get me to live a better quality of life and doing all I can to stay active as possible but to not overdo things as the end result is never a good one.

I’ve grabbed a book off amazon about food to eat and avoid and it’s been super helpful indeed. I basically live off blueberries and chicken now haha. But no I’m having a lot more homemade food and drastically changed my diet by cutting out all the old rubbish and getting as many good foods into me as possible. Still a lot of trial and error to come but I’ll get there in the end :)

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healthunlocked.com/fibromya... hello there and welcome, I am glad to see a male member come along, we do seem to have more females but I really feel that men should let it out in the same way howcthey are feeling, great to see RayB reply to you. You have your experience so well, it does change our lives but we can only but try and work with the condition on a daily basis. I cannot work due to fibro/cfs, trying to run my household and help with my grandboys now as best I can, I would not be reliable to work especially when you go to get up and it’s a flare day and bed rest on a bad one is all you can do, not the fact I don’t want to work just not able too anymore. Small walks are good Chris I will be attempting mine this morning go to the bank few errands in a little town near where I live, I always stop for a drink and a snack and have a chat to the people in the cafe, the Sun is out and alittle warmth is an added bonus. Take care hope to see you post again band read members experiences and helpful tips. If you would like to lock your posts I’ve put a link above it generates more privacy and only our community can see. Never worry about a lengthy post I would rather read someone letting out the way they feel good to share x

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Thank you very much for your reply :) I was massively over worrying about the job thing. It was a horrible feeling each time I couldn’t go in because I was too weak to physically do it. As with anything you deal with some people understand and others didn’t but overall it’s all about feeling good about yourself and to constantly on off call in sick was not only making me feel miserable it was screwing the team over each time as made them a member of staff down and these were people I knew years and are good friends with most. So it was be realistic time and give that loop of doom and end and time to focus on getting myself in the best way I could then looking and new job options that will hopefully allow me to be more consistent.

I think the biggest thing with this condition is the need to try this that and the other to see where our limits end and to also swap out meds, foods and so on to see what works best! And I really couldn’t test the water (so to speak) because I feared trying something and being worse so couldn’t go to work so it’s time to focus on me fully and work out a routine that works the best.

Aww yes definitely continue to get out as much as you can but never push to hard! I am back home now as had to leave my flat due to the costs being over what I could afford in the end and with that I’m back with our family dog Toby (Labrador retriever) who does not think much about my condition so demands early walks and at lunchtime so he keeps me out daily and I love that! It’s giving me a get up and go feeling each morning and I love that (mostly haha) But yes as we all know some days are easier then others but let’s focus on the good days and that lovely fresh air and room to think time we get when we all can :)

Ohh look another big post! I guess I have a lot to say haha! X

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No worries good to chat, lovely I see stevejj has replied to you he is a really nice member, I’m glad uve gone home you really don’t need that worry on top , your post is very positive, ahh envious we have no dog but my daughter has a one year old chocolate lab , she jumps up at me bless but I go through the roof but she is pleased to see me. Well I’ve done 14,808 steps that’s a lot for me, stopped after teatime, Epsom salts bath, hot water bottle, chilling with the tv and laptop that’s where I’m staying lol till morning . If uve a bath try the Epsom salts they say a soak is good the magnesium In the salts is good for fibro s x

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Hi Chris wow sounds like I could have wrote that post. I couldn’t believe I got this after like a flu illness struck me in December a good few years ago now. The little things we can do as we go along our fibro journey all contribute to help further along the line. For me keeping active with daily walks even when I feel bad helps. I’ve been to numerous alternative therapies and found acupuncture helped my energy levels. I only take low level sertraline for mood as the illness can get you down. Don’t take and regular pain killers but alternate with muscle balms like deep heat. Nice to see another younger chap on here. I hope you keep well best wishes Steve

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Thanks for your reply. I feel a lot of us out there probably had some sort of virus to start with but I guess will never know truly what happens to trigger this thing. I definitely remember at the start it was very odd as would wake with a normal throat cold sort of bug but it would go away by the middle of the day! and was like that was odd, then one day was walking with a friend and got a full on cough like a nasty chest infection and yet again cleared up a few hours later,, I did go see the doctor back then and say ohh I seem to keep getting bugs then few days after it goes away it’s back again, even back then it was the same old,, ohh seems you’ve been unlucky and just caught another virus! I just said fair enough and got on with it then some time later it hit hard and never left. In reflection I strongly believe that on off sickness was my body clearly fighting something very nasty and this all is a end result of damage to the nervous system but that’s just my view.

As for now and what I do. As far as pills from the doctor I’m on 2 a evening of Amitriptyline 10mg and though it doesn’t restore me the way I’d love it too I do definitely see the improvement it’s made daily. I sleep a lot better and my up and down symptoms are far reduced since taking these, however it sadly doesn’t stop the stiffness or give me back the ability to stand long periods of time and ohh yes my lifting abilities. I’ve read so much on fibromyalgia but nobody seems to say anything about being able to lift stuff!? At the start during the virus bit I had days I could barley stand and even getting a plate from the cupboard was like doing weights, it was crazy! However now I can definitely get about and strength waivers daily but definitely (I know for sure) my lifting days are over. Even pushing the vacuum around these days is a workout for me. To think before this I was the go to guy to help move furniture and the like and doing more she more stuff at the gym. Ohh how time has changed! It’s hard to not look back and think god if I only stopped doing this that and the other could I of prevented this all happening. Truth being probably nothing I did could of helped or prevented this thing and unless we all work together to create a Time Machine I guess will never know haha. But yes we can’t change the outcome and simply need to now do all we can to be in the best possible lifestyle we want for ourselves and (not to mean to be selfish) but sod others it’s us with this and us that have to adapt ourselves massively to this huge change we now have!

Anyways I could go on all day haha. Let’s all do what we all do and keep on fighting the never ending battle (because basically) that’s what we do daily! We are far from weak! We are stronger then most as we have to be!

Oops missed out I take a lot of other pills too, vitamins I’ve read help and CBD tables and so on to help be more normal basically but still a lot of trial and error to come!

Kind Regards

Chris

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Chris yes we could go on all day it’s a roller coaster too. I’ve just fingers crossed just come out a bad spell where felt my shoulders were collapsed. Loads of things to try and it’s all trial and error as what suits one won’t suit another.

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Chris,

I have had fibro for about 17 or 18 years now.

I will likely never stop looking for things to make me feel better or an easier way to manage things.

What I can say is if I push myself I get hit back and in that slapback there has always been a long term a price I have had to pay,,, I almost look at it almost like a bank ballance and while I always seem to get the saving again I never quite get back up to the amount I once had.

I used to keep trying to get myself to a state where I could slowly do a little bit more but finaly accepted it was not for me, it is a difficult thing to become familiar with your limitations live within their boundrys.

Best Wishes, Ray

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It’s hard to read but I know what you’re saying definitely. I just try to keep as mobile as possible with walks each day as I fear I’ll get worse if I just sit back. I definitely won’t go crazy with it though, because as you say it’s not worth the slap back we all get. It’s not something to overcome more something to work around is the best way to describe it I guess! Tomorrow is another day and resting today I hope to feel a little brighter tomorrow :)

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Hi StayingStrong85, Fibromyalgia will take you on a roller coaster emotionally. I found mindfulness techniques a godsend. It will take time and lots of patience to accept your new way of life. Stay Strong and when you feel weak remember it will pass. 😊

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Thank you so much for your reply! :) I will definitely look into that then! Anything I can do to improve quality of life and I’ll give it a go for sure :)

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Hi Chris

I have just recently joined after what seems an eternity of suffering from rheumatoid arthritis as a teenager and then fibromyalgia on top of this about 5 years ago.

Still managing to work as I sit in front of a computer all day. I know exactly what you mean buy having to adapt work and lifestyle to deal with this horrible "condition".

Think this have actually been on the go for many more years since medical people have been calling it fibromyalgia. Had family members who had similar condition and that was over 30 years ago :(

Don't normally hear about many men suffering from fibromyalgia but there is even a well know movie actor who suffers from this.

Hope you manage your days and evenings quite well x

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Thank you very much for your reply. Today happens to be a very bad day so resting is all I can do as barley can stand today. I’m hoping tomorrow brings me some more energy. Definitely not been this bad in a while and trying to think is there something that is making it worse, or could just be the weather. My diet is constantly changing to find the best fit for me. I sometimes feel caffeine helps but other times I wonder if it actually makes my symptoms worse, I fear it’s make it worse. Given up so much food and drinks I used to like but it’s all needed change!

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Definitely could relate to your post. Have had Fibro, AKA, THE BEAST, for well iver 50 years. There were 3 stages. The stage I'm currently in is the worst last 10 years of this illness. I made the decision about 6 months ago to cease taking pain meds. I didn't get any worse, but my overall mood, if you will, improved. Because there weren't anymore side effects from pain meds. I'm impressed with your positive approach in dealing with this illness. What has helped me was bio feedback, via computer generated software, and one book in particular named Unlearn Your Pain. Can't write more at the moment, but if anyone wants more information please email me privately or if there's enough interest I'll post in the forum for everyone to read and possibly help someone. This is a great forum with some of the most decent Inernet friends I've ever come across.

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My god 50 years! You are one hell of a fighter but it’s what we must do! Today is a terrible day for me and I’m reading and replying to these posts in bed. Going to have a nap and hopefully later I feel stronger again. Thank you for your reply! It’s so good to hear from others that understand this horrible reality..

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When they say it's life long, that's what happens. One day, if you can count, you suddenly say Heck! Thats a lot of years. And we did it. Even on the days we didn't think we could. Worth remembering that on those tough days.

Some Folks will like to say we are weedy, too sensitive, low pain threshold. I say, pooh to that. We are tough where it counts. And most of us brave and good at pain. Just pain can be jolly hard work when it wont quit.

I would just say one thing about all the positive changes you are doing. Beware of the blaming? I ate a bun? or did a forbidden thing? Too soon you will be saying I did X and I'm suffering, My fault! I walked a few yards too far. And all you are trying to do, is live your life. We haven't done anything wrong. Fibro is going to bite your bum some days, just for fun.

Have a great diet, it's good to eat clean. Enjoy your walks and exercise, meditate, and destress as needed. But don't obsess over it. I've spent years trying to get it right. forgetting the 'lifelong' bit? Try to be as well as you can be. Look after yourself. Keep healthy. You don't need to be getting diabetes or some such, as well your fibro. Try not to stress, and overdo. But most of all, be happy. Fibro can go into remission. Can recede.

But when another flare comes, don't get caught up with it, just say, it'll pass. All those horrid naggy symptoms, let them pass. Something new and scary, wont shift, get it checked, but don't get get attached, let it pass. You will surprise yourself how many times, they will pass. (eventually) Sometimes, it's gonna pass the day you eventually get your drs appt to get it checked!

Fibro is very varied. Lots of people manage fine. For others it is more disabling. But that isn't inevitable. We are all different. Fibro will be different for each of us.

Think things are getting better for fibros. Diagnosis seems to be happening quicker. Drs are waking up some to the damage meds can do. (maybe not fast enough), people are talking about it. You mention Fibro and people have heard of it. Have a friend with it There is more awareness now and it's not just in our heads anymore. And... men are talking about it too.

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Nice hearing back. Have you tried a tens machine ? This can occasionally help. As do baths - problem is getting in and out. Swimming pools are very relaxing but not during school holidays. It's just a horrible thought of having to change so many things in life (as you said) to deal with some that will never go away......

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No I haven’t but will look into this thanks! Yep having moved home now I can bath not shower again and my god it does help. I’m just a weak mess today though so resting for a few hours then I’ll have a nice healthy dinner and 3000 litres of water and hopefully feel stronger again haha. It’s so crazy this up and down thing though. It’s literally always like a few better days and you stupidly feel ohhh this isn’t too bad and it’s manageable then maybe later that same day or day after flat out tired, stiff as wood and needing to rest as too weak for much else. It’s funny how at the start I had a lot of people say ohh not too bad you can just rest and watch tv and so on,,, strange thing is (and I’m sure I’m not alone in this) but at my very bad moments I can’t stand tv or use my phone as my eyes get tired too... Lucky it’s just weakness and muscle spasms today so can at least speak to people online or watch uplifting video on YouTube of people claiming they have a cure and it’s just one magic tablet and it will fix you no problems! If only that was true we’d all be much happier people and I’d guess the NHS no matter how badly they lack knowledge of fibromyalgia they’d probably know about these pills over some random YouTube person posting lies for views. Oops sorry went a bit dark and off track there haha. Anyways keep on fighting!

Kind Regards

Chris

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Hi 😊welcome to this group, wow everything you have written is exactly how I would describe daily there is something amazing when others say how you feel it does make you realise we are not on our own I have had fibro for about 18 years or so but it has deteriorated in the last 5 years so like you I am down to part time (working in front of a computer ) but this is becoming too much but mentally I need to stay at work I currently use cbd vape and capsules which I find helps relax the body more than the pain meds I take hope you are feeling a little better this afternoon x

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Thank you so much for replying. Yer it definitely helps to talk to people about this as others look at me very confused about it all! I don’t blame them this sickness is completely so random and the feeling today of basically like someone turning my sensitivity in my muscles to high and weakness in the legs making me able to stand only a few minutes this evening are mad. I know tomorrow I’ll probably be stronger again and able to do the morning walk with our family dog and such but yer it’s all completely random as hell, it truly is! But as always we just need to keep on fighting! Yer I hope after a month or so off I can go get a part time job but I’m not rushing anything at this time. Just got to try and adjust and try hard to get some more strength back! X

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Agree with you I'm learning to be kind to myself that's hard to do when your used to working parenting and running a household . Recently diagnosed and I felt humiliated I am a medical professional and it's def not recognised by many doctors or nurses even my youngest whose also a qualified nurse says it's not taught and his registra when he asked for advice says it's highly controversial I've read lots tried everything I have days when I can do aqua and Tia chi other days it's a pj day on sofa lol . Im lucky my youngest is my carer and is understanding and protective many haven't got that . Xxxxx

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Thank you so much for your reply. It’s crazy to think given how many people suffer with this it’s completely a so called “dirty word” in the health profession. At the end of the day I just guess that’s because no real tests for it. It’s off my blood tests have always been up and down but nothing consistent. I was thinking early on it was a liver problem but had ultrasound and all good! Next blood test liver was showing random readings then next again fine. The doctor even said had a been drinking round that time! Strangely as much as I used to love my whiskey these days I fear drinking as the after effects these days are sooooo not worth it! Happy we both have family to support us! Days like today my mums homemade food definitely help as I’ve been super weak today. Keep on fighting! It’s what we do! X

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Hello and welcome! Sorry to hear about your diagnosis, but pleased to hear that you are staying positive and strong and learning how to manage yourlife with this life changing condition. The most important words for me on my own personal journey are Acceptance and Pacing. It is so important for you to learn to put yourself first and learn how to say NO when others expect too much from you. (This may sound selfish, but it is about meeting your own needs!)

I find gentle exercise, walking, swimming, yoga are the best. But only for small periods of time. I plan my day carefully, taking regular breaks to sit down and read, knit, do puzzles to keep my brain active (fibrofog permitting!). I try to prepare all my meals from fresh and eat lots of fruit and vegetables.

I have also managed to return to work part-time, and have a job where I can work four 3 hours shifts per week. That is the most I can manage without feeling exhausted.

May I suggest that you look at a website that has been written by a gentleman living with chronic pain, that gives you a list of tools to help you manage your symptoms, paintoolkit.org I found it very helpful. The hardest part is putting it into practice every day!

May I wish you the very best on your journey of self management, take care x

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Had to respond another youngish male here 36 I totally empathise ..

I’m glad you have had some understanding doctors etc .. it’s hard not to push yourself and suffer for it - especially when we have so many outside influences like money work lack of benefits etc .. and I think it’s a condition where what works for one doesn’t work for others etc and it’s totally unpredictable. One thing for sure is none of us are weak or lazy etc and we have to overcome those feeling and be confident that you know what we’re doing the best we can.

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Thank you very much for your reply. It definitely is a nightmare of a thing to deal with as we are so up and down so hard to plan for anything as we simple have no clue how our day will go. I’ve had many days that started great then later been a real bad day, likewise I’ve had days I’ve woke feeling very bad and thinking today will be terrible only to feel better a few hours later.

A completely different job is in order for sure. I simple couldn’t stand that long anymore and my strength to carry things is either weak to no strength on days. I need to find a part time job now and try and find something that’s going to work best for me.

Yes this we are all different thing is a nightmare, not only because I get people saying “ohh I know someone with that, they are only effected when they have flair ups” but because when I was looking into fibromyalgia when I first got told by my doctor he thinks this is what it is you get anything from someone who’s wheelchair bound who can’t do anything to the over scale where they can work full time. Go dancing and only feel bad on flair ups! I like most over things in my life sit somewhere in the middle. I luckily am not in a chair but not able to stand for long before I wear myself out.

But yes for now I’m going to take some time out, do all thing things the doctor tells me to try, find the correct diet for me then in a few weeks I’ll look for a part time suitable job and see how I do :)

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