Hi, I'm new to any Fibro Groups but definitely not new to the condition! I've been going to the doctors about widespread pain and fatigue since I was 9yrs old and now am finally in the midst of a formal diagnosis at 24!
I can't help but notice the contrasting difference between talking to someone who understands first-hand the pain, the fatigue and the obstacles we have in our day to day life (E.g Getting out of bed and even carrying a loaf of bread home from the shops can be a task in and of itself!) And between that and talking to someone who doesn't suffer the way we do- tends to be met with a pitiful head tilt or an air of non-belief. How do you get someone to understand the agony of daily life? To see through the seemingly "fine" state you may be presenting them on a really good day?
I am only 24 and I am finding it such a struggle to work even a part time job! 16 hours is too much for me! I used to work full days and weeks but I find it hard to concentrate and focus on one task unless I have a lot of interest or creative inspiration and the pain is intolerable! As a result I've hopped from job to job since leaving school never finding the right support or balance between stationary and physical work and have never been able to settle down!
If I go for a walk- for one, I'm usually slower than the wee snails trailing beside me! (Which I'm convinced annoys my partner but bless him he's too kind and caring to ever admit it!) And for two, I take my stick to relieve some pain in my lower back, hips, knees, ankles... you get it 😅 and in the process of it- (Sods law!) My Wrist, Elbow, Shoulder and Neck etc. hurts from it!
I feel like I can't win and I have had quite dark and suicidal moments because I know its not curable and can't get any better and a result I feel increasingly useless because I can't work anymore- I'm terrified of having children because of the effect it will have on my body and just generally not looking forward to my future a whole lot because I see all of these boundaries! I wanted to travel the world, backpack through Thailand or Europe and go to hostels, hike through mountains and go rock climbing etc but that seems like an IMPOSSIBLE feat the older I get, the more pain I'm in and the more it sets in just how f**ked I am 😓
Has anyone else struggled with this? How have you improved your quality of life? Is there a way for my dreams and my condition to live in harmony? I don't want to give up on being able to travel the world- any adjustments you think I could make it easier?
Thank you in advance if you took the time to read my ramblings- I appreciate any advice on future endeavours such as travelling and chilbirth, pain management, Suicidal/Negative Thoughts as a result of the condition but mostly any advice on the working world, how those of you still working cope/what you do for a living and also those that can't work as a result- how do you keep your sanity? What do you do in your spare time?
You're awesome, thank you for reading this far 🥰
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hippieatheart
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Hi and no probs reading your post - love the name by the way! I’m old enough (just) to have been a hippie in the late sixties and now that I’m coming to terms with my “condition “ I realise that I have been struggling with this throughout! I completely understand what you are experiencing and it is most certainly real. My first piece of advice has been said often on here and that is to be kind to yourself. If you can learn to see yourself as the amazing person that you really are you can start to rise above all those that don’t believe the pain you are in. I know it’s hard, sometimes I fall down too (both for real and metaphorically!!!!). The dark times give you an opportunity to lean on those around you and, as I’ve learnt from my wife, it gives them the opportunity to show their love for you. Keep in touch on here, I’ve found loads of help and support. Lots of people really do care. Peace and love x
Thank you, my fellow Hippie ✌ for your kind words, I am incredibly lucky to have my partner who is so patient with me and although I see the sadness in his eyes that he cannot take my pain away, I see the little glimmer in his eyes when he can do something to ease it (Bless him, he got me my first adjustable stick!)
I wish you the best of luck in your journey too and I hope we can all help each other on here because this feels like a safe place to just BE 🥰
Oh my heart goes out to you. I'm 67 and suffer like you do on a daily basis, but I have lived most of my life, and although I may have a good few years left yet, I have managed to fulfil most of my dreams before I was struck down with this terrible condition.
As for going out for a walk, I used to use a stick and like you suffered with pain in my wrist, elbow, shoulder and my one hip etc etc, so I decided that I would try a rollator, (I really didn't want to, and was a little embarrassed at the thought of going outside with it). I bought a 3 wheeled one first, and it helped immensely, I did find at first that my arms would ache the next day after using it, but that went away, and now no pain in my arms from using the rollator, of course the Fibro pain is always thereabout. I have since bought a 4 wheeled model that has a seat, so now I walk at a slow pace, and I can rest whenever I need to. And I don't care now what anyone thinks of me when I'm out and about!
I'm sorry I can't really help on the work front, I am happily retired and can pace myself, although sometimes I do forget myself and overdo things and pay for it for days afterwards.
As for travelling, my holidays nowadays are very laid back, with little or no 'exploring'. Hopefully someone younger in the group will be able to help you out with that.
Yes it is difficult to get others to understand how you are feeling and how this condition effects you every single minute, hour and day. So mostly I keep how I am feeling to myself, apart from my husband, who does understand because he sees how I suffer every day. He has his health problems too, so we mostly laugh and joke about how we feel, that seems to be the only way I can stop myself falling to the depths of depression.
I do hope that you will be able to get some answers from this group and with that help will be able to start living the life you want.
Thank you Welshcatlady, you have truly helped and I am currently looking into rollators with a seat because I hadn't thought of that before and it definitely seems like a step in the right direction! 💛Gentle Hugs 💛
Glad I could be of some help. I always found when using my stick, I would twist my body, and that would result in pain. Hope the rollator will be of help to you. x
Your worries were the same as mine. I kept putting off having children in the hope I would get better but I just kept getting worse. So I had my first child at 38 and my second at 41. It's completely exhausting and when people tell you about pacing is key to managing fibro that always makes me laugh bc there's no pacing with kids. I'm so glad I had them though. I have chronic migraines amongst other things, I figured even without children I'm in constant pain anyway, if I don't have them I'm still in constant pain. We put measures in place to manage things. We agreed before hand once the baby was born my then boyfriend, now husband, moved into my parents to help for the first few months. Social services were particularly happy with this and because they saw how much support I had they took me off the high risk register. We did this when my son was born too. I still find day to day tiring and bc of the pandemic I'm now on my own with it all but I've never regretted it. You do have to make sure you are being a decent parent though and that means looking after yourself often falls by the wayside.
In regards to travel, I lived abroad and moved a lot as a child, I loved scuba diving and was desperate to travel the world and this was a constant source of sadness in me. Sadness being an understatement. It took a long to for me to realize I could scuba dive but I couldn't just stay in cheap hotels and travel far to particular dive sites. I had to pay a lot more so that I could actually sleep in the nights, it had to be really quiet. I have to dive in really warm water so I have to travel further. Basically I have to pay a lot more but it is at least possible this way. And you have to except you're going to feel a bit awful half the time, if you don't except this it won't go well!
Thank you cat00 that makes a lot of sense! I basically have to accept that the suffering is non-negotiable... BUT what is do with my life is my perogative to have a fulfilling life where I can! That has definitely opened my eyes up a little bit 😁 thank you so much 💛
Hi Hippieatheart, I'm sorry this is affecting you so very young! Like you I'm a snails pace walker, my husband isn't as patient as your partner, but with having fibro, hydrocephalus and needing 2 new knees i dont get anywhere fast.
I to have had awful thoughts due to depression. I idea of spends 10/20years more in this mind of pain is terrifying to even imagine. I keep thinking of how I need to be here for hopefully future grandchildren etc. But then think that I wont even be able to cope with holding them, never mind playing with them.
But for you I've read of younger people going into a remission state while pregnant. Your brain is amazing and can shut off pain when its under so much pressure. I've experienced a similar situation when my hydrocephalus was at its worst.
If you need a chat you can message me. Its hard coping on your own even when you aren't alone...if you know what I mean haha. Sorry for all the typo's I really should read it through before I press send 🤣
HiI am suffering from fibro myself and have to use the wheelchair. This has caused me severe depression and anxiety. I will tell you first my experience and then I will give tell you how I overcame these hurdles. I was myself active b4 I had this car accident that triggers fibro.
B4 I I ended up in the wheelchair I had the same issue as u had with the society. I was criticised and was even labelled as lazy. This has caused a strain in my marriage and my relative were giving me negative remarks. Worst thing is when the council that should protect you abused me as well as harassed me. During my pregnancy I was told that I should have not “had intimate relationship” with my partner and got pregnant. There was a time I wanted to kill myself.
As you can see living with fibro is not easy in this society. What I did is that I told people what condition I have and wrote them the name if the condition to look up. If these people still criticise me I then ignore them and do not entertain them.
It is not worth to make your condition worse with those peoples critics. We must understand that fibro is not known and there is not many awareness about it. I know very well from my experience that it is easier said than done. Especially when u feel isolated.
My relatives accepted this as I took my husband and Aunty to my doctors to get my fibro checked. They both understand the effect and are now protecting me from critics from my relatives.
For the abuse from the council I did simply reported them as well as raised a complaint. I even have involved my local mp.
I am doing therapy now and it has helped me with my mental well-being.
You have the right to feel the way you feel about it. But at the same time you can overcome these feeling with the right adaptation and mindset.
Hi RBanu, I am so sorry to hear the terrible injustice that you have had to endure! I know first hand how it is to be seen as lazy or "feeling sorry for myself" because those around me unfortunately don't understand the effect of mental health or hidden disabilities such a fibro. By the sounds of things you seem to be on the road to recovery 🤞 sending good vibes and energies your way 💛
Can I suggest that first you don't think so far ahead, it seems to be overwhelming you.
It's more than likely that some of the good things you want will come to you, and who knows? if they don't then something even better may happen.
We can't plan our lives in the future; we can only act now. Anything can happen tomorrow. Brooding on the 'might have beens' without giving them the chance to manifest, is not the best way.
Lets start with those who don't understand the problems of Fibro. Look up The Spoon Theory on the Net. It will help to explain the way that fibro works in us; we get a certain amount of energy each day, but we can borrow more from tomorrow. But then we have to pay it back. So, by the third day we are flat out, in pain, stiff and just want the world to end.
The Spoon Theory shows how you use your 'spoons' to manage your day. It can also help to explain to your friends that you can't go clubbing tonight because you'll use the last of your spoons getting a shower and trying to get ready.
I know exactly what you mean by walking slowly; a few years ago I could outwalk my friends, now I stagger around with a rollator!
What sort of job did you have? is it one where you were in your feet all the time, or put a great deal in physically? Is there something you could do which is less physical?
We all need to keep doing some exercise, but it needs to be gentle, and on your own terms. I'm not thinking 10,000 meters before breakfast each day! There is a way to do things; do a little, till you begin to ache, then stop and sit for a while, then go again.
Some Fibro folk do have children, usually with help from relatives or friends, but it is a choice you need to make between yourself and your partner. There are compromises to be made there. Your partner sounds like a good person, don't lock them out, cooperate.
I get the feeling you are really fighting the fibro, try cooperating with it, and see if it makes a difference. It sounds mad, I know, but it works for me. This might help you fulfil your Travel dreams.
When fibro kicks you up the ass, stops you doing what you want to do or leaves you in pain it does take you to a dark place (or at least it does to me). So, what I need is to find light, not when I'm in the dark place as I don't have the ability to do anything then but beforehand so that when I need it, I can draw on it. So, last week, I sat in the garden, listening to the birds, watching the clouds, drinking a cup of tea with a piece of cake and just being in the moment, being grateful I have a garden, can have these moments. Then I planned something I would like to do, which for me was getting my back room papered (exciting I know). Needed lots of help and more time than I would like but wrote it all down. Last two days I spent them on the floor with a cervical collar, hot water bottle, filled with pain meds cos the pain in my head and face is horrific so I practice my mindfulness and draw on those moments I'd 'saved' from last week. I also have a plan cos when I'm feeling dark I don't trust my decision making so I go find someone, in the house, on the phone, whoever and if I really feel unsafe, I go to the GP or A&E and tell someone.Ref doing things/going places, I suppose what I'm saying is that most things are achievable just more piecemeal and generally take longer with greater planning and support. This applies too for work, perhaps you could consider if splitting up work into different chunks (ie not 3 days or 2 days back to back) might help or whether the type of work isn't good for your fibro (I have a management job and unfortunately sitting at desk typing is what does me in so I'm thinking about what else could I do - one of the things is using dictation software so I don't have to type quite so much but I hear your frustration as I've spent 20 yrs climbing the career ladder to now find my body wont let me hold the rungs anymore).So what am I trying to say in this long, rambling post?
- Save those nuggets of light as they are what you need when the corners get dark;
- Make sure you have a plan of who can help you stay safe;
- Think about what you want to achieve, what stops you and then plan around that to break down those barriers;
- Know you're not alone, ever. There will always be someone on here to help pick you up off the floor
Wow! I am in awe of you, you are the awesome one. To be able to put down your symptoms and feelings with such eloquence and honesty. I can relate to much of what you have written but could never put it into words. I was lucky and my symptoms started much later in life. My heart goes out to you, unfortunately there is no magic wand to help improve things and it takes time to find where our limits are. Take care and remember what a fantastic person you are, despite everything you have to fight against!😘XX
yes it is quite difficult. Especially with the age. I am not even 40 yet. But the key to the success is positive thought, lots of meditation and determination
Hello and welcome, I have just read your post and the lovely replies you have had from members. It really does help to talk and share our feelings as there is a great understanding among us how daily life is affected by this condition. We do have younger members who hopefully will chat about how they cope with working and yes for some they cannot. I think focusing about having children , traveling, is good to have goals in life however we get round it xx
Bless you. I read your post and have great empathy for you. I am middle aged,50 with this. I have recently retired because 15 hours became too much for me but my job was demanding. I changed shifts, had adjustments but it didn’t help. I was a nurse and gave it up after nearly 30 years. There is no one who understands your struggles like a fellow sufferer and my sister was a great help to me.I am not sure what advice to give you. You are creative so office work would probably bore you. However, what l would say is visit a functional doctor or a specialist in nutritionalist to look at your diet. I have read lots of positive results not necessarily in this group but outside,on how this has helped them. The second thing is look up mast cell activation syndrome as a doctor told my sister we are misdiagnosed. It makes interesting reading. Also my personal view is my sister and l spent our childhood in woods so we often believe we have Lyme disease.
I have had fibro for at least 10 years. My personal experience is the medical
Profession just want to push medications which have nasty side effects. Get an alternative view by really researching a good functionalist doctor. I am not against the medications but as you are young try something else first. Often our bodies adjust to the dosage and we require more and have nothing else to try.
It sounds like you have a lovely partner and children are a blessing in your life. Lots of fibro sufferers have children and cope. We are all used to adapting our lives and children are resilient. Mine are older ( late teens) but accept me and my limitations and l would not be without them. You would be a wonderful mother because from your post you have a good heart. Actually as a sufferer if chronic pain, childbirth pain will not be as difficult as you think. There are lots of options if you medically can have them,such as water birth. This can all be discussed at antenatal appointments.
For many of us but especially someone young, it’s adapting mentally to a chronic condition. Unless you can do this you can’t move forwards. Those dark thoughts are negative and you are a beautiful person with lots to offer and a fulfilling life to live x
Hi. I read your story and see myself in you. I really empathise with your situation. I feel your pain. I am a Fibromyalgia Warrior and fighting pain, fatigue, restlessness, brain fogs, reduce sex life🤔anxieties about life in the future. But will say, do not give up hoping. Have courage, hope and strength. Take each day at a time and speak out to your husband... he listens but don't know how to help💛. I am a mum of 3 kids. I found pregnancy okay but not too painful. Speak to your husband and you two decide your birthing plan.We are together in spirit. Stay blessed and safe🌺💜
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