I am 30 years old in the UK, recently diagnosed with fibromyalgia.
struggling with it for about 1-2 years.
Doctors are upping my painkillers etc but I’m in constant agony, I have flare up minimum for every 2 weeks, for 3/4 days at a time.
work have redeployed me to a desk based job and put me to part time hours but I’m still hurting. 3 days and I’m exhausted by the 3rd day.
I swear my husband thinks I just play on it but there’s days I am trying to prove to him that I can keep on top of the house, work and the rest, then he gets in a mood because I don’t want to socialise or do things but I’m so tired and in agony. I spend days crying.
Has anyone got any advice to help me keep on top of things and manage my pain/exhaustion??
Thank you
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NewToFibrox
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hi and a warm welcome to the forum. You can find general information on our website fmauk.org and our information booklets are fmauk.org/publications
It sounds very much like you are in a 'boom & bust' cycle where you are pushing yourself to do everything and then flaring up your symptoms. Have you heard the term 'pacing' - this is where you 'pace' your activities by taking regular rests, breaking up larger jobs into smaller ones and not pushing yourself or overdoing things to the point you push yourself into a flare up.
You are using all your energy reserves to manage work and household tasks - therefore it is no wonder that you have no energy left for social activities. There are articles such as the Spoon Theory and Letter to Normals that you can google, and maybe let your husband read; there is also a section for partners in the FMA UK patient booklet.
Medication does not work for everyone, and even high doses of pain medication can leave you in severe pain. Have you been referred to pain management - it sounds like a pain managment course to help you to understand living with chronic pain and ways to manage it may be useful for you.
My own personal self-management toolbox includes using medication, cbd, heat, mindfulness, meditation, relaxation, distraction, keeping active, holistic therapies etc. What works one day does not work another; and medication does not take pain away but helps to reduce it to a manageable level.
Thank you for all your advice. I will certainly follow the links.
Unfortunately, my GP is reluctant to do anything but keep upping my dosage of gabapentin. I do however, try my own relaxations etc.
I do admit if I have a small bit of energy I burn it to the ground to get everything done.
I suppose we as a couple are both struggling to adapt to life. He helps me around the house when he can however, he has so much energy and has lots of activities, i then feel bad that I’m just laid in bed or the sofa.
it's an adjustment for both of you - and having his support and help where it's needed, we'll make life better for you both in the longer term, because by pacing activities you can allow for things you enjoy
I talk about the 3Ps - pacing, planning and prioritising
Pacing activities allows you to get more done without triggering a flare, planning ahead so you can pace tasks, and deciding your priorities for each day - that may be work, housework or social /hobbies etc. For example, leaving a housework task for another day (or get hubby to do it) could allow you to have the energy to do something with hubby xxx
I never thought about leaving an option out, I guess I really am trying to adjust myself. New job, new hours, new priorities. It’s so difficult for me to understand that one day, I might be able to hoover and the next day, I simply can’t sit myself up in bed. How do you adjust to such agonising pain daily?
We’ve come up with a number system of 1-10 so my hubby knows what sort of day I’m having but on work days I can start at a 4 and end with a 10 by 3pm.
Hopefully, I will be able to find a routine or something that I can adjust too xxx
Hello and welcome, I would ask him to read here a few posts he might get more of an understanding about this condition we have been landed with, does he help with any household chores? , I know he might be working full time but a nudge in the right direction as trying too work part time and run the house is an awful lot on a person , so delegate would be good. Keep in touch with your doc as he/she can monitor how pain killers are helping or even if a different type can be tried as we always say trial and error here getting something that suits. When you come back from work run yourself a bath and have a soak and hopefully on work days you and hubbie can have a simple meal as you need to rest after a shift, not easy switching off from pain is it🙁days when I’m struggling I just tick essential boxes ie main meal and a lot lot of pacing in between, I even do an online food shop and get hubbie to pick up mostly as takes out the stress of heavy bags, queuing . People here are amazing and we get too chat , read posts, I never realised how many thousands have fibro and it does vary from person too person, but a friendly reply can lift your spirits sometimes xx
I guess I best myself up when I can’t do the “normal” well, I guess my old normal.
I try my best and so does hubby but I feel resentment towards me always saying “no” but, I exhaust myself just do my daily stuff.
I need help to get in and out of the bath most days which hubby is amazing with but I do think he thinks I’m being lazy when I don’t want to socialise.
Thank you for your support, I never realised I wasn’t alone xx
I am trying my best to not allowing myself to over do it, I’m finding things really difficult.
I feel like I’m in a circle of terror. Killing myself to prove to everyone that this won’t beat me.. then suffering.
Thank you for all your advice.
I need to look up this spoon theory.
I can’t help but feel lost, pained & exhausted.
It’s a very lonely place as no one seems to understand that “oh, can you just cook tea tonight, I’ve been working all day” is pure hell on earth and physically excruciating.
I completely understand, I can relate to everything you say. I am 38 had a car accident 7 years ago, what started as whiplash, thoracic outlet syndrome, mysofascial pain syndrome, to fibro! It’s been unrelenting and exhausting! A couple of surgeries later, stomach ulcers with pain meds and I’m still in pain. Mother of two children and it’s hard …. My partner hasn’t got it so many times…. I understand his frustrations because I feel it too…. I want so deeply to have a life outside of existing but I have to chose carefully!
I have tried so many things over the years, spent a fortune, but rest is definitely best! I can’t always stick to plans I have to listen to my body! If I go to watch my son play sports I always take a chair (it helps)! If I have a special occasion (wedding/birthday) I free the days before and after so I can prep relax fully and recover afterwards! It’s all trial and error!
Stress and other Illnesses definitely exacerbate my symptoms! And work doing too much or too little! Heat so nice warm baths, electric blanket, heat pads definitely my best friends! The Cold is the devil!!!!!
Support is essential I met a great group of ladies in the pain management course and we have an informal support group, we try to meet once a month but it’s not always possible. This forum is helpful…. You can have loads of people around you and still feel isolated in your own painful world but talking to others who just “get it” can really make you feel less lonely!
having a good GP matters , one that will listen to you and have some understanding , i personally have come off the fibro meds as i felt they did nothing for pain all they did was add to my brain fog , now im on Magnesium which i swear by , Tramadol paracetmol and naproxin , this combanation help for a short period but thats enough to give me a little restbite from being in agony all day. Hope this helps , i would also suggest get as much information as possible and leave it for your husband to read.
Having a diagnosis can also be a shock. I wonder if you and your husband both find it scary. " where is this taking us" and grieve for the day to day life you expected to have. He may be in denial.
If you can have conversations and keep your relationship strong as you both adjust.
Can work give you spaced days? I worked every other day.
Fibro is a very individual condition. Explore pacing and what works for you.
No one ever looks back and says I should have cleaned more floors.
Talk to hubby about what you spend your limited energy on that supports your relationship. Share your concerns about not doing everything. It is hard to be vulnerable.
Dear NewtoFibrox Just woke up after another un refreshing disturbed sleep and felt like crying when I read your title line , I feel that every day. I am now in my late 60s. Crying as thinking oh dear I have felt like this now for decades this dear person will have to get used to it and what advice can I offer. However seems on reading others there is much very good advice given already and I will save repeating it with my foggy brain and difficulty typing. All these years made me realise that strong painkillers didnt work for me at all . A daily swim in WARM water helps me start moving. I have learnt to leave household chores and do something with the little energy I may have . Hoping you will find everyone s advice helpful and manage to find a way of coping , sorry I can not write more I am better at speaking than writing things . Take care x
This illness is hard to accept ive had it for over 3 years now and still trying to get my head round it i have stopped working i worked part time for a bit , but unfortunately couldn't cope . My husband was very supportive so very lucky ❤️ I cannot say it is gets easier because unfortunately it doesn't but you wil have good days and bad.
Have you had an occupational health assessment for work. It's not as scary as it seems. I resisted having one but my employer insisted. Result is that I stayed in work with reasonable adjustments and have remained in the job since the report was made in 2014. I work 3 days in a row then have 4 off. It works for me as I need 2 days to recover and 2 days to do everything else. Not saying that everything else ever gets done though🤭 I work different hours summer and winter as I can't drive in the dark.
As for dealing with the pain. I can't take prescription meds so for me it's a case of heatpads, tens machine, epsom salt baths, biofreeze gel, hypnotherapy and chiropractor - the last two when I can afford it! I also use a weighted blanket. Again as fibro is different for all of us, what works for one may not work for another and it is very much a case of trial and error. Gentle exercise will help, even if it is just a stroll down the garden path.
It may help, if you haven't already read it, to google Fibro a letter to the well. It's explains all the things we need others to know.
Good luck in your quest for finding what works for you.
I have had an occupational health review as I work for the NHS, I have been redeployed into another job to help but I do need a review.
I am battling with PIP & blue badge to make things easier but that seems so stressful.
Heat seems to really help me, I have looked at then Tens machine but didn’t know if they was any good.
I am wiped for 2 days after my 3 days but I think I find this easier to rest. As this is my 1st of 3days, I am already struggling with a flare up.
I have all intentions of exercising however, I’m so scared of being in agony in the aftermath or, embarrassing myself only being able to do a few lengths in a pool etc xxx
Hi NewToFibrox. I’m really sad to say this to you dear - but get used to the wonderful world of fibro. You just have to learn to cope with the trials and tribulations of this condition because it just ain’t going away!
Same goes for your hubby - you have to learn to work as a team or you both suffer.
My only useful piece of advice that has worked for me is to clean up your diet. Cut out all the alcohol, junk food, sugar and additives (as best you can). Try to eat natural healthy food, keep hydrated. And when you are tired - stop. If you keep pushing yourself into exhaustion you will suffer the consequences. As will hubby!!
Hi, I am so sorry you are struggling with your condition. It is extremely debilatating and very hard to adjust to the realisation of your limitations. This takes time. Before I was diagnosed with Fibromyaligia I had servere Endometriosis accompanied with Chronic Fatigue Syndrome at 39 years old. I am now 59 years. 20 years of trying to get use to what I had to give up. I had a very active life working as an NHS Nurse in Paediatrics, I had lots of ambitions to work abroad as a nurse, I went to study Social Antropology and Development studies. But my health stopped me from proceeding. I did have a very supportive partner and his family at the time, which helps in trying to cope with the realities. I now live alone and have done for a long time. But what I have to do in order to have a fulfilling life is realise the limitations to the amount of energy I can use in a day. And prioritise what I wish to do that will make me feel happy. I love socialising, and I am now an Artist as this fulfils me in so many ways. I can choose how much or little I can do. I do not work. If I did do. It could on be half a day 3 times a week. Now the one thing I had to let go of, is always having a clean tidy home. Luckily I live on my own. When I do housework the pain in my muscles are phenomenal and experience fatigue +++ I then will have to rest for the rest of the day and the next. My suggestion for you would be to pay for a cleaner or your husband does the housework. Your husband needs read about fibromyligia to understand the hidden disability you are experiencing. Happy to support you more if you want to DM me. Take care
Hi NewTo Fibro , well you have mentioned adapting to your ‘new normal ‘ that is a good step in the right direction ! Also I have read that you have been trying to ‘fight it & prove that it won’t beat you’ ~ I think this is something many of us have tried, but we eventually learn that this approach unfortunately doesn’t work. Learning to work with in the restrictions of this condition and learning to listen to your body are a good way to make life a little easier to manage.
Take some time to think how you can make life a little easier for you & your husband. Simple things, like, perhaps it’s possible to employ a cleaner, even if it’s just for one hour a week, they could do the things you perhaps struggle with the most. It would possibly take a little pressure off. Meals, ~ possibly look at healthy meals that can be delivered to your home & put in the freezer. (Wiltshire farm foods) one example I can think of. It’s all about taking the pressure of the work load off. This will enable you to pace yourself & have more opportunities to rest. It’s a steep learning curve, but each time we find something small that helps, it’s a positive!
Learning about Fibromyalgia has helped me to understand it better & why things happen & how to alter my ways to avoid some pitfalls!
Yes hoovering has terrible consequences. For years I have sat on the floor with my Henry type hoover and just poked the nozzel part at dirt on the floor. Haven't been able to push the attachments for at least 30 years. There are so many things one has to find another way to do. I hope your pain eases as you find different ways to cope. Its the hyper sensitivity , IBS etc I struggle with so much now of which I hope you will not have to experience and endure x
I have a Henry hoover, it’s the easiest one I’ve come across due to the stand up ones kill my back. My husband would never hoover and we have a dog so I used to hoover atleast every day and now I’m lucky if I do it once a week because I know the after math.
I’ve just been on the phone to my GP last night and they’ve increased my medication (reluctantly due to my age) and suggested Yoga.
I had an arguement with my partner last night because I told him I was in so much pain and so tired, his response was “well, you know how to make yourself better; you need to exercise and eat properly” yes, I am slightly over weight, no long the size 8/10 I was when we got married 3 years ago and I am increasingly less active but I am at my whits end. Xxx
I literally say “I’m in agony” and I can see faces like “again?” Or “yeah, where hurts now?” Or the fact I sleep a lot or don’t want to exercise, I do want to exercise - I don’t want the agonising pain of the aftermath! Thank you for your support xxx
I find relaxing exercises good for muscle aches and tension. Start with your feet and tense hold then slowly relax. Work up your body tensing and holding. I am at my best in the morni gs I do what I have to do then take a break and do a little more later. By 4pm i'm done. Have a long rest then just have a little walk around or move around a little to stop getting too stiff. Find what suits you. They walking is the best exercise even if its just round the garden a few times.
Hi, you could speak to your GP, sometimes a small change in your medication can make a difference. Most people that use meds take a few, finding a 'cocktail' so to speak that works for you can take a bit of time, trial & error but worth the effort.
As everyone else has already said pacing is one of the hardest things to do but one of the most effective. Sometimes it takes me 3 or 4 goes just to hoover the living room when I used to blitz the whole house in less time!
And I so get you with the hair, actually cut my long hair short as it was just too much. You will find your own ways of coping that work best for you. Remember too that you are functioning every day with pain levels most people can't even imagine, You have nothing to prove to anyone. Take Care x
not sure where you are or whether you can get to London but I got a referral to Guys & St Thomas’s fibro clinic. One appointment but you would see several different people. I saw rheumatologist, physio, psychologist and one other I can’t remember- blooming fibro fog. They put together a plan of action/recommendations and sent it to my GP. Might be worth considering. When I saw thrm I actually burst into tears as it was the first time somebody actually understood and believed what I was saying.
I live in Yorkshire but I will travel the ends of the earth to get some help. Just been on the phone to my GP saying I’m at my whits end. “Well, I’ll increase your medication then check back in 2 weeks”
I would add I really had to fight for the referral. I have found that putting a request or a problem in writing and then following it up with a phone consult works wonders. That way any request forms part of your notes and they can’t ‘forget’ to add it to your records.
Hi NewToFibrox, Welcome to our sorry club. I see you already have many helpful replies and would like to add my own.
I no longer suffer so badly from fibro, or I believe I don't; I have other things that cause pain and so fibro has slipped into the background, and I haven't had a migraine for ages. Having said that, I am now in my seventies and battling pain and fatigue. So over the years I have learned to pace myself (something that I should have done when I was younger when I assumed I was just burning the midnight oil). Unfortunately, the days of working in order to have a long weekend are over. We are much better off working alternate days so that we can rest and recover in between. When I am feeling up to doing things, I have to put the brakes on, even now, and remind myself: do no more than one majorish chore per day. So on a day when you change the bed, do very little else. We all try to keep going when we are feeling good, and we think we can finish painting that wall or room in one day. Well, we might, but what have we achieved if the next day is spent recovering?
Ok, so things have to get done. How important is a clean floor to you, to your partner? A lot of men couldn't care less, so it is maybe all your own perfectionism. It still needs to be done from time to time and I have got rid of all the carpets in my house; it is too small for the encouragement of anybody entering to wipe their feet, so just not practical. I've got laminate downstairs. I now get Attendance Allowance - PIP to someone of your age, and it allows me to have a home help for an hour and a half per week, but even when she is on holiday, I can still manage. When you apply for PIP it helps to get someone in the know to help you fill out the form. The fact that you need help bathing is a useful qualifying point. List everything you need help with, even if you don't get help.
Some years ago, when I had despaired of getting any help from my partner, I invested in a robot vacuum cleaner. They may not look as if they can do a good job but they can and the price is coming down unless you go for the top of the range. You can get them these days that wash as well. Other things that I have acquired are an across-the-bath seat for the shower, and I have been given an inflatable cushion that allows me to lower myself into the bath when I want a good Epsom salts soak, and raise myself up again afterwards. It takes a bit of practice, and you need to plan ahead unless you leave the generator plugged in all the time. I also have a walking frame (it folds up) that helps me get from my bed to the bathroom when the pain is at 9/10; and a perching stool that gives me some relief from standing when I have to prepare meals. I don't necessarily use every item all the time: My fold-up walking stick lives in the car most of the time (not at the moment) I don't think I could manage the bath at the moment, even though it might help, but I do need the walking frame in the night or first thing in the morning. I no longer have a Dyson vaccuum cleaner. I now have a small, cordless, lightweight much cheaper sweeper. It does need to be emptied and cleaned out, as does the robot cleaner, but I think it's worth it as it is so manoeuvreable, and quite easy to just pick up whenever, and spot clean.
I am about to try and get blue badges for the second time but the first time was a nightmare. You have to let them see how you walk back to your car (and do it on a bad day - not a good one). I think I will leave off the painkillers if and when I get an appointment. Not good, but it might allow me to park closer to where I want to be when I am on my own. My partner has them, so when we're together, we both benefit as I am the driver. I nearly forgot - I didn't get all these "aids" at once. The first was the robot and the most recent was the shower seat, but they all make life much easier when chores and wellbeing need to be attended to. Wellbeing. Don't allow anyone to prevent your self-care, or to hurry you when you can't speed up. I hope that some of these practical ideas might appeal to you, and allow you to keep living somehow the way you always have. If you need help in accessing any of these items, do get in touch.
may i just ask if the inflatable cushion causes bubbles and some wind noise as lower down. have a shower stool sit on although would be nice to be in the water now and again, the bath tends to echo any noise.
The cushion is made of very thick rubbery fabric and folds up when not in use. The thickness makes it quite heavy so there is some noise when fitting it in the bath (it has four suckers that adhere to the bottom of the bath but which are very easy to pull up). There is no bubble noise. Once fitted in the bath, it is filled with air by a tube which attaches to the generator, which once charged up, is cordless (water and electricity don't mix) and works via a hand pump. It inflates quite quickly. If you need help getting in, inflate it as high as you need it, sit on it (it can come right up to the rim of the bath) and then deflate it so that you can cover yourself in warm water. When you want to get out, just reverse the process. So yes, there is some noise, but not windy noise!
thanks so much for the explanation, was worried may have to explain to neighbours. echo's is the bath. 🤭 will read more sounds wonderful to have a relaxing soak.
Just want to say that because the cushion is thick - it needs to be - it won't feel the same as it used - being in contact with the surface of the bath (at the sitting end) but if you fill the bath enough, it is the next best thing. It is also a cushion for your back.
hi, its alot to get your head around isnt it, you think once you've got a name for all the things you've had for along time, finally a name, a reason for it all, what a break through, a sigh of relief that your not going mad, think again hey, things now seem to get worse for a while, appointments, physio, consultants, scans, medications, with an end result of pace yourself, keep moving, and after trying different meds, finding one that suits you can take up to 2 years or more, and boy oh boy trying to explain to others who you think might take it upon themselves to read or research or ask, show an interest, taking an extra dose of pain meds just to be able to do an activity with friends, loved ones, putting on that fake front just so they can enjoy your company cus lets face it, who wants im too tired, i can't do that anymore, it hurts to do that, planning our timings becomes a must, making sure there are seats around where your going, setting the alarm at 3am to take pain relief because in 4 hours you can take another at 7am and hopefully by 8am you feel well enough to take a shower in order to be out the door by 9.30am all this and no one knows we do this but by 3pm the last dose your officially allowed, thinking god i hope theres nothing planned for this evening because youve taken all you can and the medication has made you very tired & youve run out of excuses, god forbid were truthful because we dont want them to think we're washed up and worn out, those who have understanding, caring people around them are very very lucky.
Sorry my post sounds so negative, in time you'll find your own way of coping & being happy again.
As much as my husband supports me, he’s not getting it. He’s not interested in research. He’s not interested in what I need to do.
We had a disagreement last night. I told him how I’m feeling. His response was “well you know how to make yourself better, exercise and eat better” - yes, I know exercise will help but I need the right exercise and after work and house work I’m dead. Xxxx
It's totally rubbish! You feel so alone and suffer in silence. I do, however, am starting to get my wife realising that I am suffering. I don't know what kind of relationship you have with your husband, but he needs to understand. Share the info on fibro and maybe take him along to the doctor? My doctors won't even entertain fibro. Be strong, stay strong, there are many of us out here, if you need support carry on reaching out. Stay strong you will figure it out and if you are not getting the support you need go elsewhere to find it! Best of luck.
thank you for understanding. I just feel so lost and I swear people look at me like “you don’t look in pain or look poorly” yeah, but you don’t see me before taking tablets to function or the sleepless nights, the getting stuck in the bath etc etc xxx
Yup! The invisible illness. There are to ways to go with it. Go down the depression route or learning to live with it route. I turn in to work when I do within reason and stay later if necessary. Working is far better than sitting at home dwelling. Good luck!
I much prefer to work, I was having an off day the other day and feeling sorry for myself. I find some days harder and just needed some advice, helping without just giving up xx
I used to have to rest/potter around home the day before going out shopping/running errands/working and then have to recover the next day at home resting/pottering.
The last few months fatigue/brain fog/pain has worsened and I now have to recover for two days afterwards.
I've found it is important to accept these times (otherwise, I'm mentally drained by the subconscious nagging that I should be doing this, should be doing that). This, then aides my recovery by relaxing more instead of fighting to find motivation to do something.
Mentally, I deal with the feelings of failure by reminding myself of the couple of minor jobs I may have done that day.
Even if it is one job, such as a bit of handwashing of clothes. Or just the washing up. I've found that it is important for me to remind myself of that one achievement. Otherwise, I can spiral into feeling absolutely useless and that then adds mental complications to the physical.
Sometimes, by doing one little job, it can lead to another one but don't get carried away.
Vacuuming AND mopping. -Not any more.
Vacuum OR mop. Maybe sweep up spots with a long-handled dustpan before mopping.
At this point, I'm not vacuuming at all, just mopping. Luckily I don't have carpets or pets.
And perhaps luckiest of all, I don't have a partner to complicate matters.
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