My fibro has been playing up so much this past year to the point where every day I’m in agony and cannot move or it nearly kills me when I do,
I’ve been told we have periods of time where it improves..... my problem is that i don’t seem to have these! I’m always in pain no matter what🤦🏽♀️
Someone close to me went one about a woman at her work also has fibro and she can go to work and you wouldn’t even know unless she told you. My own daughter says the same and I get “the looks” from them as if I’m not trying or I’m just lazy or can’t be bothered , this is getting to me so much I’m avoiding going out because of the looks I get and the comments .
Am I doing something wrong? I can’t understand why I’m not having the mild pain days
I feel useless and just pathetic at the moment
Edenstar x
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Thankyou xx as for my medication I’m on venlafaxine, pregabalin and a low dose of diazepam for my anxiety and naproxen, codine and paracetamol for the fibro 🤦🏽♀️ and yup half of me worries how much pain I would be in if I wasn’t on these???.....
Thankyou xx I just hate the way it seems to affect me😔 xx a few years ago I was running around with my kids and decorating rooms, working my backside off but now I’m lucky if I can move from my bed to the sofa or the sofa to the toilet😔 it’s almost as if I’m grieving for the life I had...... I’m not 40 for another two months and I see 80yr+ people overtaking me in the street I seriously feel heartbroken...
Absolutely agree with everyone, we are all different & there is no "standard" fibromyalgia.
Download some fibromyalgia information for the next time any judgemental comments are made, save you having to explain it to them.
I do think you may benefit from a medication review though, from my own personal experience Naproxen gave me very little to no pain relief at all.
You are certainly not useless or pathetic, just someone having a really hard time right now dealing with pain most people will never know and couldn't imagine 🥴
Even I have to admit if you asked me a few years ago I would have not been able to even guess on this pain, the amount it just drains you and takes so much just to even get out of bed in the morning xx
Heartbreaking to hear your story. I have found some family and friends never ever came round to understanding and I’ve had to build my own self belief up. These sites are so helpful. Take very very good care of yourself and keep believing in yourself. Xx
Hi Edenstar.Please don’t feel useless or pathetic because people around you aren’t going to understand the illness like you do unless they were to experience just a day in your shoes.I know because I’ve been there, but there are things you can do to improve your situation.
I first contracted full blown Fibromyalgia in 1993 and spent the next 8 years in bed on 24 hour care provided by my ex wife.When she eventually got fed up of caring for me the Doctors gave my parents a choice.Cut his medication by half and get him rehabilitated or put him in a home until the medications kill him.My parents chose the former so I went through physical and prescription drug rehabilitation.I won’t pretend it’s easy, be cause it’s not.
First of all you have to find the right medications which will give you times when your almost pain free.For me it’s a cocktail of Morphine MST,Ibuprofen,DF118,(Dihydrocodeine) and Chloroldiazapoxide .
Once you have the right medications you need a gentle exercise program that’s going to stretch all of your muscles.I won’t pretend that these don’t hurt but you only need to do them once a day.
Take your time and slowly you will claw your life back I promise.You will always have some pain and tiredness but if you try to live a balanced, stress free life, things will get easier I promise!
I’ve not become bedridden and I push myself so I don’t but there really is only so much I can do that.
I used to do yoga , I loved it I felt amazing and would love to do it again!!!
I’m on venlafaxine, naproxen, pregabalin, codine and paracetamol but I feel that the codine and paracetamol barely takes any of the pain away 😔 xx
I swear if the doctors told me that “eating a diet of daffodils and daisies” would ease the pain I would try it 😂 that is the way I’ve become .... I would try anything to just have a couple of normal days a month xx
I know what you mean. My friends & family don't really understand & my daughter says you have to push through it. Not give into it! I get low moods & feel I am being lazy but I am being unkind to myself then. When I feel better I do more, but my Fibro pain has flares where it is bad, but my pain on the whole is moderate & not as severe as some people's. Like everything there are different degrees of severity & how it affects each person. I get fed up with people saying "you look well though"! If only they could feel my pain at times, experience my depression/anxiety, fatigue, IBS, gastric probs & demotivation I get at times! I am not just a weak person just because I have fibromyalgia. Fellow fibromyalgia sufferers are STRONG, because of the pain & symptoms we have to endure! Have these judgmental people ever lived our lives or in our bodies? NO! Have they not heard of the saying "don't judge a book by its cover!" Obviously not.
We can choose to believe our truth & not feel we have to justify ourselves by paying attention to others petty assumptions & ignorance of this condition.
I have anxiety also and the comments definitely make it worse xx
I’ve been told to push through it but i can never seem to do that😔
At least when you are giving birth there is an end to it and you know it will stop hurting so much but this??!!? It’s never ending, never easing, never forgiving .......
It’s like a monster that continues to eat through your life, your body, endurance, patience, sleep, humour and everything that makes you... you! Never getting full, never letting up just continually eating and eating until all that’s left is a shell of who you were😭
Hi, please don't worry about getting too deep, we all need to let our feelings out at times & that is why this forum is so good. Fibromyalgia can be very debilitating. X
Just had another thought - the fact that you were very active before fibromyalgia, proves you are not being pathetic - some people never do exercise, but you used to be able to, just like me.
I used to do adult ballet, contemporary, tap & jazz dance classes & line dancing, salsa, Zumba & Pilates but now i cannot due to fibromyalgia. I am overweight because I cannot do the exercise anymore. Too much pain on twisting hips & feet & bad cramp over different areas of my body if I do Pilates, even if hydrated!
I stopped because of too much pain & fatigue, not because I became lazy! I admit I eat on my emotions & that is not good, as I eat unhealthy & healthy food. I have to accept MYSELF as I am now, that I cannot do dancing anymore or long walks. I have to grieve over the "old" me & adjust to eating less than I used to because I can't do the levels of exercise I used to do anymore. That is hard as I still have a good appetite. I know I have to make the right choice over what I eat, but it is sooo hard!
Hi Edenstar.....I am so sorry at the rotten pickle you are in!!! Next time you have a Dr's appointment ask one of them to go with you. Don't tell them the real reason why, just tell them you need them to be there and ask your Dr. to explain fibro to you.....if that doesn't work print off all the info on Fibro and ask them to read it.
Don't get blown away today.....Storm Ciara has arrived. xx
Good luck with that. I took my daughter, two years ago and when she asked, he said it is muscle pain. End of. So now I think she thinks I am a hypochondriac,
Let's hope so. That Dr has now been retired a while, so hopefully attitudes have improved. Having said that, my Dr. does listen to me rambling on, because I think she is out of suggestions!
You aren't wrong; there are sufferers who are almost totally bedbound to those who can run half marathons!
I'm one of the luckier ones, My pain is controllable with the meds I'm on, although I struggle to walk, using mostly a rollator with a backup wheelchair for particularly bad days, and I have little energy.
I don't let the Fibro depress me; I treat it as the Enemy!
OK, you're probly not gonna like my reply but I reckon, in life
You gets, what ya gets, and make the best!
The sooner you learn that and suck up the unfairness, the easier life will be on you.
I'm afraid, whether you chose or whether it was foisted on ya. As a dear old lady once said.
'You got the Rocky Row ta hoe, now didn't ya?'
At a glance it looks the same. Didn't we all trust, life was gonna be a level pitch?
So here it comes, Edenstar. Here's the truth.
There is no level pitch.
We sign up to play. Maybe imagining, we are gonna be good at this game. And each of us get given our own set of talents and handicaps, so we can play. The Queen moves this way and the Rook, that way? Did some benign entity look into our eyes and say, OK This is your life! Go live it (sucker)! I bet you missed that bit. I know I did. Like me, you thought we were all gonna be the same maybe? But we're not. It's;
Your Life; Your talents; Your gifts; Your burdens.
Add in the rigged deck, the less that level playing field and of course the rocky row, and here you are, feeling a bit sorry for yourself.
Stop thinking about fairness and start deciding whether you are up for the challenge of the game. Are you gonna sit this one out? Wait for a second deal of the pack maybe? Or are go gonna roll your sleeves, dig deep to find your grit and make the best?
When I was losing as a kid, I would want to give up. Wanted to cry, but couldn't. The lady used to say,
'What ya standin there for looking all unnecessary? Scareda losing? Don't wanta be last? of looking the fool? God aint impressed by no flim flam fancy! He don't give out places in Heaven just for winning, nor for quitters neither, for doesn't everyone one know, he loves a tryer? Don't you know, his blue Heaven is full of ornery Joes with big hearts? Mud on their boots, callouses on their hands and still love in their hearts at the end of each hard day. Folks what took their Rocky Row, no question, and hoed it clean. Made it flourish; Who turned up, rain, blow or snow to play. To support their mates.
I was a kid. It was mostly gibberish to me. I'd never ever picked up a hoe! It took time to figure but I got the gist.
Sorry Edenstar, reading your post, you took me back. I can feel my bloody knees smarting from the falling. My face mucky from wiping the few silent tears that had escaped my guard. Getting up and running to catch my mates. Coming in last; No glory. The lady would catch my eye and give me a wink, before walking back into her little terraced house. She wanted to teach a lesson. And she was one of many who had to go over and over it, because it is a hard one.
Life won't be fair. But regardless,
Never Give up. Never give in. Keeping trying.
Keep on hoeing your row clean; keep playing the game, no matter what.
Keep making the best. Keep love in your heart. Keep trying.
Fibro sure is a Rocky Row. A slow row. You can't see till you get up close and start working it. You want to complain? Say, look at the stones and rocks that keep chipping my hoe blade. I tell you, there's no-one want's to hear. Harsh isn't it?
Bill is working fast the centre of the field. Chop chop chop goes his hoe, taking out the big weeds that grow strongest in the best part of the field. The sun bakes the ground and Bills' red neck too. He's sweating, arms aching, just like you, only he's gonna take home a lot more money. It's a fast row. Rons' working the headland. It's still in shade and will be for a while yet. He's chilled and looking at Bill, wishing he were getting a bit of sun too. You cant see where you are with the headland. its just a mass of short rows that run into the next fellahs row. You find yourself arguing over where your row stops and where his starts. He'll make his money, but it makes Ron cross, seeing how his neighbour takes advantage...
If I were younger, likely I'd tell a tale you'd relate to. I'd tell about your Ipad and some such and it would all make sense. Doesn't it royally piddle you off that folks talk in riddles, when you just wanted a bit of comfort? Sorry about that, I have tried but, I still can't do squidgy hugs. Doesn't mean I don't care though.
I don’t like your reply as it implies that I’m not trying, that I’m giving up, that I’m sitting here feeling sorry for myself.
I’m sorry that you took my post as that because in truth my post was me allowing once to tell someone, ANYONE how I feel and how I’ve been made to feel! I work hard everyday trying to move to do any sort of exercise, to clean , to be a good partner , a good mother, daughter.
I just for once wanted to express how I felt deep inside
But thankyou for thinking I’m young enough to not understand your metaphors xx
Me say, another Fibro is not trying? Nah. Is that what you read?
It's that you're still hoping, even expecting that others will understand. (That is gonna hurt you until you stop it.)
Fibro is invisible. More so than a crooked pack, or a rocky row, or even a virus on your computer! Even your GP doesn't get it. Can't see it. Doesn't believe. (I know mine doesn't!)
I've never met a fibro that's not trying. It's how they get worn down with despair that saddens me.
You feel your bloody knees smarting, the tears falling. You look around and... There's no-one to care. Maybe folks are laughing even? Poking fun? That's doesn't feel fair. You get up to lose. Again and a gain. And the moment you take time out to share your pain, you get judgement and that hurts more than the grazes.
Yeah, I don't get it at all.
But I know that's life!
All I'm trying to say is, you gotta keep going anyway. Even though, no-ones cheering for you. You keep trying. Living your life. Inside there's grit. It'll get you there.
Likely, quietly, privately there are those who look, in admiration. They see your Rocky Row. And how you deal, day after day. But it isn't their gift to tell it. They don't know how to say, they understand. The noise is always from those with the least to say.
Me? I guess I've given up somethings. Given up expecting understanding. Given up hoping folks might care. I try to recognise kindness if it falls my way. I'm still hoeing my row. Not for others to judge, but for me. For satisfaction.
I know what is takes to hoe clean. I know when I'm short changing. Judge me all you like. Judge me bad. What do I care? I turned up today, played the game. I told you my heart. Crudely, ill fashioned perhaps? You don't understand the care? I can't change where your head's at, only you can do that. That's the truth and I shall try to be at peace with it.
I do understand that you were trying to offer advice in your own way xx
The first part of what you said before came across as if you were implying I wasn’t trying and that hit a nerve xx
I apologise if that wasn’t the case, but I am the type of person that always tries to believe that some people even if the don’t understand what you are going through they can still show a little compassion.
Like I said in an earlier post that I cannot believe my own daughter cannot show compassion as I raised her to at least be conscious of others feelings xx
It's really tough. I still find it so. Accepting people how they are. Where they are in their heads. How am I to know, what stuff you have in your head, that gets triggered when I answer you? I don't. None of us do. I dunno what your daughter has rattling around in her bonce, but it doesn't make her bad or mean. Just she's not yet grown her understanding. Don't wish it. Some understanding comes with so much pain. Pain you can't go back and unfeel. Be happy for her. See her thoughtlessness and be happy.
I remember a time when I thought I would be fit forever. Full of beans. Not yet hurt. I remember it cloudy. I know it was there, but the lightness? Not sure I completely remember that now.
I have stood like you and been judged wrong and harsh. Making it up. Wanting sympathy, when actually, I don't go well with squidgy hugs. Giving or receiving. But folks think it anyway. Attention seeking.
If we wanted Attention, don't folks realise there are better ill's to make up, than one no-one believes in? Seriously. Like I say, fibro is the rocky row. the slow row. No-one gets how hard. Except maybe another fibro?
But then there's levels of fibro. Mines worse than your's? Ooh and I'm still working a 60hr week.... Heard all those? Felt guilty about how you're doing? Felt put down?
I'm a nose in my own trough kinda girl. Generally. Hoeing my row. Sometimes I might try to help another out. Coz I'm close and their tiring, or the farmer wants us to get finished. Doesn't always go well. They think I'm putting them down. Making out I'm something. What can I do? Get caught up in their Drama. Make believe it's all about me? Well I see now, that's gonna make me sad so I try not to. I try to be kind. Maybe sometimes folks will feel it.
I look the picture of health, in fact if I looked as awful as I feel I would not leave the house. My point is we are all affected differently, I have several very painful conditions but I am able to get around (at a slow pace) others are stuck in bed, it doesn't make me "brave" and others weak. Your family need information, show them this forum xx
Dear Edenstar, I have your post and almost in tears. Fibromyalgia is a very complex diagnosis/condition and let’s face it even those of us who have it can be baffled by our symptoms on a daily basis. Even the medical establishments are not sure about what causes it and the symptoms vary WIDLY from person to person.
You are a young woman who quite rightly is heartbroken about this body that you are trapped in whilst other people you know are simply getting in with their lives. It’s so easy to say ‘keep positive’ ‘be strong’ ‘think of others less fortunate than yourself’ etc however we all know these things but it is ok to feel overwhelmed and sad sometimes.
People who do not suffer from Fibromyalgia and other similar conditions have NO IDEA what it is like to live with this condition.
We hear other people with FM talking about ‘good days’ ‘better days’ ‘days when they feel they can manage to do tasks around the house - but then suffer for days afterwards.
We are all sufferers, but we also have to recognise that we are in a scale of FM. Some of us are not as advanced as others. I’m not sure if it gets worse with time or if it stays the same or even if it can get better ? I’ve heard from certain Drs that it may (?) be a virus and that certain people after flu, pregnancy or an operation can find that it disappears ? How wonderful for them xxxxx
However you sound as if you are very low and sad about where you are. I think that sometimes it’s easier (although painful and tough) to deal with the condition than to deal with the misunderstanding and wrong perceptions from those we love and have close friendships with.
They see us sometimes managing better than other days. They then witness a ‘flare up’ where we can be totally disabled (in my case it’s pain and weakness - I can’t lift the kettle or hold my mobile phone for any time without having to swop it between both hands during a call as it’s too heavy !!).
So it is confusing for them. They also hear stories about other people who have FM and are living active lives ? Obviously the people who are not as severely effected by it as we are.
Even on this WONDERFUL site where we are all trying to share and support one another with information about possible effective medicines and sending support, love and hugs - there can be a huge disparity on the levels of what we are dealing with.
My Fibro started at 40 - after having an operation. It then disappeared for many years when I was on an anti depressant called Ciprolex. When I came off that drug three years ago, suddenly my FM (which I hadn’t been diagnosed with in my 40s) reappeared with a vengeance !!! Certain days I am housebound but I make the most of my ‘good dsys’ Which I feel so blessed to have.
As I don’t fully know you and therefore am not in a ful position to give you advice on your mental health, the way you are trying to deal with this very complex condition, or the way in which those people around you react to you and your condition - the only advice I can give is that possibly you are needing to contact your Dr so that you can have someone (a support group, pain group or counsellor) to talk with. Try as many options of medicin that your Dr offers - maybe one will help. Be kind to yourself mentally as well as physically. Try not to fight the FM and go with it. Fighting makes you anxious, sore, and sadly gets you nowhere good. I know it’s easier said than achieved. Also try to always keep positive We don’t know when a breakthrough in medicine will appear, I also try to have a hope that it WILL get easier or even best decide to leave me one day !!! That would be fantastic !
As for your family and friends I suggest that they read up on your condition on the Internet and not listen to hearsay. We are all different and suffer in different ways and to different degrees - that’s how FM works.
I am sadly loosing a very close friend at the moment because she believes that I am causing this illness myself ! She believes it is in my head and that I’m not doing enough to sort it out. It is heartbreaking as I’m not married, have no children and no other family. My friends mean the world to me so my salvation has been this website - where I know that the people on hear believe me and I feel supported by knowing that others are going through this with me (sorry guys, I don’t wish this on anyone).
So in conclusion (sorry for the long reply, I’m stuck indoors today) all I can say is that we know you are trying your absolute best, we share your pain, and yes we do send you love and support.
The hardest part of fibro is accepting that you have the condition and getting others to accept it too. I can sometimes go to events so people think I'm ok but feel wiped out afterwards and my husband has finally realised that I need a period of rest afterwards. Get your GP to get you on a chronic pain management course if there is one in your area to learn how to pace yourself, coping mechanisms, gentle exercise like tai chi and relaxation. The one I attended was very good. You also have to accept you can't do what you used to do. Apply for PIP so you can get extra money for things like a cleaner, taxis etc and focus on things that you can do like knitting, painting etc that take your mind off your pain while your focusing on these. Above all talk to your family - you may appear ok but tell them how you really feel and what they can do to help you.
Hiya edenstar, it is my hubby who suffers with FM. After at least 3 years having tests after tests eliminating out other deseases we finally got an answer. I can only tell you that in those 3 years my hubby was in enormous pain, that pain killers didn't touch him. After trying many different types including morphine tab & liquid morphine, he is finally not complaining as much as he was, so I'm deducing that his pain is easing. Fingers crossed. I also have a daughter who suffers from it too. There might be a couple of days every so often that she is released from pain. I'm so sorry for you & anyone who suffers with it. I'm sending prayers to you all.x
Thankyou babes xxx your hubby sounds like what I’ve just gone through xxx here’s hoping for less pain days xxx I genuinely feel for our partners xxx I know the pain I’m in but I can’t imagine how it feel to feel helpless and have no idea what or how to ease it for us😔 xxx it must be awful also having your daughter go through the same xxx my thoughts are with you your partner and your daughter xxx
My daughter is disabled so I understand the stress you must be under xxx ❤️
Pop me a private message if you ever need to talk xxx im always around 😂
Just to put my two pennworth in. You are doing your best, that is all any of us can do. Some do it better than others. This site is brilliant, The support from fellow suffers is great. We all try to help each other. For the last ?two months they have listened, sympathised, advised and cared to all my offloading. And it has helped. I am having a particularly bad time as my husband is disabled and has dementia. Loads of appointments all over the place, I could well do without, as am barely functioning myself, what with all my problems including the brain fog. but there is no choice, I have no support. My two daughters think I am a hypochonriac. I know they have their own lives and problems, but we rarely see them, and as per..... I look OK, so it is their dad they ask about! Take care. x
It’s dreadful babes xxxx I’m so sorry for what you are having to go through xxx obviously your husbands illness can’t be helped but your daughters sound like my eldest daughter xxxx it would be nice if sometimes they could help xxx
Private message me if you ever want to talk, offload, or hell even scream lol xxx please know you are not alone and you are brilliant xxx
Thanks so much. And right back at you. I almost did that yesterday, broke down in tears, whilst in DH's dementia assesssment. All got too much. But I survived. Take care. xx
If peeps treat you like they are, choose to believe that you're not in pain (ie DON'T BELIEVE YOU - SAY YOU'RE LYING !), you should kick them out of your life and stop allowing them to upset you mentally as all of this will only aggravate any conditions that you have. Really, you have enough to contend with without their ***T, - so sorry to hear you are not receiving the compassion you rightly deserve. Believe me, one believer, is 100% better than all those other waste of spaces . Perhaps without the garbage you are experiencing, you WILL be able to learn to pace yourself in time. I wish you all the best and a cure to FM in our lifetime ! kind regards ann
Well the unbelievers choose not to believe. My son, who is now 31, first diagnosed fm when he was 15. He piled all my oooohs and arrrrrrrs and owwwwws etc into his pc and pushed a button. So why do peeps/family/etc choose not to believe ???
Does it somehow mean that we become less 'available' to them as it does to the state, or am I just cynical ??? ; ) .
The other good thing about joining a chronic pain group is to find other people like you that you can talk to and keep In contact with so you realise you are not alone, you can talk about your problems and you are not making this up! I believe you! And so do all of us on here with this horrid condition!
I totally understand. My 30 Yr old niece has fibro but still runs marathons so family think I'm a faker. FFS I'm 62 and unable to work, do housework or make a cup of tea some days. Couple this with anxiety /depression, I could scream. Gentle hugs to you ♥️
I’m pretty much the same I’m more inclined to be in pain all day n s as ll night long. I’m now finding even trying to walk my westie is almost impossible. Both my calves are so tight I can barely move them. Absolutely worn out all the time.
Oh babes 😔 xxx it’s horrid when it gets like this because you get to a point where you think “how much more can I cope with???” And life thinks it is a challenge!!!😊 xxx I know we can all get through this , I’m sure we can xxx
It's so complicated, we long for others to understand what we are going through and yet at the same time we wouldn't want anyone to go through the long term pain and confusion that we suffer it certainly is a vicious circle!
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in shock
Its all so new.
Just need to sleep.
PIP assessment. 
