You are asking the million dollar question here as all of us will have different answers. Mine started with RA then 4 more autoimmune , then heart and lung issues due to steroids and diabetes threw themselves at me BUT I kept saying something is not right and low and behold they added fibro when they did a few touch tests and discussions on triggers etc.
For me and many others Winter is misery as high winds and rain seem to set me off so this bleep bleep weather for the past 2 months has meant I have just slowly declined. I find i have to do mind work, even if it can only do it in small batches ie write or blog or anything to keep me mentally challenged.
I also have this thing with all the other conditions in pacing BUT also pushing myself to achieve one goal a day. It helps me mentally even if just standing is hard going.
Medication the only one that sort of touches me a little is pregabalin but I take enough meds to take a horse down and my sleep is still fractured and now under a sleep clinic but when fibro bad the sleep is worse.
If still working think how you can manage your day and make sure people know incl HR.
I had to give up work 4 years ago and took almost 3 yrs to grieve over it as I felt I was too young and not ready to give it up BUT I also knew I could not work as too much going on and my body a wrecking ball.
I found the Wren Project helped me mentally when I hit a low point which is a free self referral system but again its finding what works for you.
The bad days can be awful but I try hard to find a positive even if what I call the Bitchy Sister of Ra ie FIbro tries hard to keep me down.
Ahh indeed how do we manage? PMA (positive mental attitude) helps, as hard as it is when dealing with the fibro sprite sitting on your shoulder.
Firstly time to grieve for the person you were and getting to know the person you are now. For me, getting the diagnosis was scary. Never heard of fibro, the consultant wrote fibromyalgia on a piece of paper, handed it to me and said "go research, I haven't got time to discuss it with you, and I am discharging you back to your GP" I sat in the hospital car park and cried. That was it, alone and having to navigate myself through the maze.
What works, again as fibro is different for all of us, it's a trial and error game. Some can take prescription drugs and some can't. I can't, but know many gain relief from them. I rely on diet, no processed foods, no refined sugars. Sure sometimes I fall off the wagon but I certainly pay for it when I do. Heatpads, hot water bottles, tens machine, biofreeze gel all have their place. I visit the chiropractor and hypnotherapist, take gentle exercise and try to practice mindfulness. CBT helps some as does Tai Chi.
The art of pacing - now this is the one I struggle with. On those better days try not to go like a bull in a china shop, trying to get all the things done that have been ignored because if you do you leave yourself wide open to the dreaded flare. Five minutes doing whatever and then rest.
Meaningful help - ask for a referral to one of the fibro clinics. The Guys and St Thomas's one helped me. One stop shop - seeing several specialists on the same day, they then put together a plan of action and forward it to your GP. Alternatively referral to a pain clinic may help.
Employment, if employed and not self employed - remember the Equality Act 2010 protects us. I had an occupational health assessment many years ago and that, although I hated going through it, has enabled me to stay in employment. Reasonable adjustments were put in place to help me and are reviewed periodically.
I'm sure others will be along shortly to give their help.
I was self-employed as a Personal and Leadership Development Coach - which itself was a stepdown from being an international Management Consultant, flying all over the world, but I had already started with the symptoms of Fibro, which I thought was simply over-work and jet lag. Eventually, I had to stop the coaching when my brain shut down and one of my clients said "I can see the pain in your eyes". I had to sell my home in Wales and move somewhere smaller - so I no longer had to pay a mortgage - and away from my beloved Welsh Hills - as I can't cope with the cold. That was 12 years ago, and I'm still grieving the me I was and the life I had.
This is a great forum for having a good moan in. People here understand us. Although it hurts me to say this, I look forward to seeing you here again.
I felt your words viscerally… I had the same type of life but now I’m wondering where she is!
I’m a bit scared (not the me I know!) but I’m resilient and pragmatic… just currently feeling overwhelmed… but I’m hoping I’ll emerge…phoenix-like… soon!
Take care and thanks again for taking the time to be so kind and thoughtful in your response x
Hey there, pop onto my page, hopefully the info will help!
I used to cry all the time, or be asleep for 18 hours the rest of the time…
So…
Keep a notepad by your bed, and diary, and write a to do list before bed, and in your diary, let it all out so you might relax for sleep.
Label all the things on your list with u if it’s urgent, and i if it’s important. And prioritise everything that has a u and an i next to it, and if you get those done, move on to the u, urgent (not labelled i) stuff. That way, if the other stuff doesn’t get done, it doesn’t really matter. Then do the i, important (not labelled u) stuff if you have time.
Include a midday seista, and all your self care (like feeding yourself) into the list, so you make sure you don’t forget it. Routine helps. Exercise realises happy hormones (stretching exercises, not arduous ones).
And find something you love, and make sure you do it for 5min every few hours. Just to relax.
Hi, I was only told recently I had it. So I'm still new to it all as well. I had to give up work because of the brain fog, I thought I was going nuts, I had loads of different things wrong with me. Putting them all together = FIBRO.
With no sign of any cure to this illness etc does make the future feel dark and bleak.Fibromyalgia is a cruel and relentless thing and the pain is beyond words.
It does not matter who you are in life fibromyalgia knows no boundaries.
I've trialled all known drugs and nothing works but everyone is different although we are all human.
Have been through the private sector and the NHS and all say very little is known about this condition apart from it totally screws up the central nervous system in the body.
For my story, a point came when the drugs I was put on only allowed me to be awake for 6hrs per day. I couldn’t take alternatives as they either didn’t work, or I was allergic to them or something. However, that meant not only was I stuck in bed, but I woke up weak, unable to lift myself from the bed even though I was bursting for the toilet. My body, too weak and exhausted, shut me down and I felt Paralysed. Unable to even get up to go to the toilet. I cried my eyes out, and spent those 6 hours in a state, because 18hours were too much strain on my bladder and I wasn’t getting enough nutrition. I also had a husband to feed and I couldn’t cope with the food he liked and I used to eat, as my body couldn’t bare the intensity of spices. Leaving me too weak to prepare anything for myself on many occasions, I was living on fruit and salad and meds and painkillers. Then also I would pray - my only link to sanity. I won’t even mention details of the stress!
It was a very difficult time and fibromyalgia is an immense struggle. But I decided I couldn’t live like that. That such a life was slowly killing me. I was dying whilst alive. Literally deteriorating. So I took myself off the fibromyalgia meds, and realised that they hadn’t really made that significant a difference. It made a difference, yes, but being awake, and able to go to the toilet was more important. It was almost unbearably painful, but I realised I had no choice. I had to do this to survive and I eventually learnt exercises to untrap the nerves that prevented me from getting up, eventually.
I started eating more and tried to bare the pain, using the painkillers only when it was extreme. (I know, it always feels extreme).
I did some online courses and stretching exercises. The courses were a good distraction, and boosted my moral and I didn’t feel completely broken. The stretching exercises, agony, yes, but made my body and mind stronger. It also gave me a social aspect amongst others who suffered. Even if the condition wasn’t fibromyalgia that they endured.
Eventually, I was able to try working again.
My point in writing this is this. The only way to conquer illness, any illness is by belief. God doesn’t want us to suffer, but sometimes the suffering makes us learn and keeps us away from greater harms. I know what greater harms I was protected now, or some of them anyway. You need to learn your own body; it’s needs, it’s complaints. Keep and food and symptom diary. And focus on self care. Your body has a right upon you. Do what you can to look after it and don’t push it via stress, but by exercising, meditation and learn your dietary triggers. Go closer to Allah and He will help you. Insha’Allah.
Hi Artful_BodgerYour post really connected with me,
I could hear the effort and determination that you have put into a business and perhaps relationships too?
Does your identity include things that you do as well as who you are? Mine did! I could no longer feel like me because I couldn't problem solve for those around me. Charge in and rescue. My health was so bad because I had been running at a wall and hit it. Not enough pacing and a focus on what needed doing rather than what was possible.
I noticed I was actually responsible for making myself extremely ill about every three years because if I don't look after myself my body will bring me to a halt,usually in hospital.
Having nearly missed going to my sons wedding and begging to leave hospital to attend I have given much thought to my identity.
I am a human being not a human doing and my body will bring me down if I don't pace.
I now have part time self employment . I have returned to the elements of my identity I liked,I am often funny,clever caring and loving. When I look after myself and sometimes say no I can function the best I can.
I am having to do less and be more.
I am myself still. Day to day is sometimes hard but I can laugh again.
oh my! I resonated so much with your post. I’m also female, same age & even 10 yrs of symptoms (from teenage yrs I’ve possibly had”something” different going on with me compared with my friends & family members. All symptoms non-specific but general malaise, feeling like I am walking with lead boots through wet mud while everyone else has a sail & the wind behind them. Lots of small issues such an allergies to metals/chemicals/feeling feint/ but after having children (Premature twins born at 31 weeks) everything's intensified. I’m now nearly 20 yrs in and im bedridden off on long term sickness from work (again!) and so many variables of multi-systemic symptoms. No cute I’m afraid. My experience is your just left to get on with “existing” in your own unique way. Most medical professionals I see now often start appointments with noting/mentioning the Fibromyalgia & sometimes I’m written off as that being the reason for all symptoms/issues! It’s poorly understood & EASY from med professionals to hide behind. Now, what I will say from personal experience is that on reflection I accepted the FMS diagnosis by the Rheumatologist to easily (I felt relieved to have a named diagnosis for all my stupid symptoms & generally”unremarkable” blood tests. I was in & out of that appt in 15 mins tops. No additional tests/no antibodies testing for disease/auto-immune disease etc. If I had the wisdom at the time of knowing I’d be put out to pasture once labelled with Fibromyalgia, I would have demanded tests before running with the Fibromyalgia diagnosis. So, if I can give any lived advice it would be ensure your tested for autoimmune diseases/endocrine disease/24 hour sleep monitoring to rule out Sleep Apnea. Once you take your foot off the gas on tests to rule out alternatives to FMS it’s hard to back to full throttle. I personally think Fibromyalgia is a last resort diagnosis of a syndrome of symptoms where any other disease is unknown to be causing the patient’s symptoms & that you suffered for years and it’s not progressed into any life threatening conditions & GP has run out of time/expense ordering tests/referal to consultations etc. I’ve even had one GP say I couldn’t book to see her anymore because she didn’t know what else she could suggest/do for me. Simply try booking another GP in the practice next time for a different pair of eyes. I felt terrible and cried (I’m not an easy crier) in the car due to the frustration of it all and feeling so unwell! Please don’t stop asking for investigations from GP & specialist consultants. My rocks are my partner, daughters & our little furry baby who all make me feel life’s still worth the effort. 👍
I certainly understand the frustration you’re kind reply projects.
I was “treated” for sero-negative lupus 24 years ago when I had a whole bunch of symptoms. This was considered wrong by the current rheumatologist who had diagnosed FMS recently, and they did repeat the autoimmune screening which, again, hasn’t yielded anything positive (thankfully, but equally, frustratingly!🥴)
It certainly feels like they look at me like I’m a crank and have a bad case of “hypochondriac-itis”… and that is tough for me.
I have a high-level knowledge of all-things clinical, and how to sift through the dregs to find good quality clinical narrative, so I’m in a better place than most in that regard.
Thanks for taking the time to reply.. it really was useful
I was diagnosed 3 years ago after suffering symptoms of pain, exhaustion and acute insomnia for many years. I used to work full time as a Chartered Surveyor managing and valuing commercial properties. I was barely functioning and finally accepted 20 yrs ago that I could no longer handle all the driving, long days and stress. We sold our house and moved to North Devon. Since then I have held a series of part time jobs. I have acknowledged that full time stressful work is beyond me. I now do a bit of gardening and cleaning for a handful of lovely appreciative clients.
I do some gentle yoga/pilates most mornings which helps to get reduce my stiffness and pain levels. I work a maximum of 4 hours a day. I have been open with a my clients and they understand that I need to pace myself. I am still very tired by the end of the week but the exercises plus physical work have increased my stamina.
Do you suffer from insomnia? If so you might want to look at the Sleep Station. They offer an online course which has helped me a lot over the last few months. You may be able to get the course on the NHS. Sleep Station will apply to your doctor for approval provided your doctor is aware that you have insomnia.
Otherwise ìts a case of being gentle and kind to yourself. It took me a while to come to terms with my diagnosis particularly as I had seen my Mum struggle with Fibro for many years.
Bless u, thats how i felt when i first got it, it took 15 months almost, i had hydrotherapy which was lovely but expensive at the oaddock pool in thurleigh, had physio but it was too spread out but okay, take vitamin b complex and vitamin d, still have pains in my legs and miss my job at cranfield and yes i still cry too x😊
Bless you , its very hard and I don't think you ever get your head round it because its a living nightmare every day and there's nothing you can do bout it and no one can help you just have to live in a bubble of pain and mixed up emotions, I try lots of different things like hot bath with few drops olbas in every night that gets you lil comfortable always got my hot water bottle with me and I also rub olbas oil in the worse pain spots its amazing yes you smell minty but my god it helps , it's a lovely deep warm feeling penetrates in your skin xxx
Hi AB, the answer is with great difficulty, we have to force ourselves daily to get up and function, it is debilitating but all we can do is try and live as normal a life as we can xx
Welcome to the club no-one wants to join! On this site, you will find the same words over and again: Pace yourself. If you do not give yourself some slack, you will suffer. You will have relatively good days. On those days, do not try and get everything done. If you can get help, even once a week, do so. If you can get PIP that will help you pay for it. Don't tell yourself you are lazy and don't listen to anyone who says that. You are now in the slow lane of life. You will find lots of tips here, but I think this is the most important. Take frequent breaks and let things go.😊
Your words are scary but I certainly understand the points you make.
I have an awful lot to learn… I’ve been a doer and an achiever; the proactive deliverer… I’m finding this hard already but I have to relearn if I’m going to have any kind of a life (I write this from bed, having crashed so hard last night…)
Thanks for your time and reply. I’m very grateful x
I understand totally. You are just the sort of person Fibromyalgia seems to target, because you are driven. There are drugs available and you will just have to talk to your GP about that. Apart from that, bed rest and good sleep (whenever you need it) seem to be what you need most, along with ear plugs, warmth, any kind of massage if you can tolerate it, and I would recommend myofacscial therapy. It is so gentle and makes so much sense. It definitely helped me. I don't really suffer from FM anymore; I have compression fractures instead. I am so sorry if I scared you, but what can be more scary than what you are going through. From now on you have to make sure you are treated with kindness, even if you are the one being kind.😊
My pleasure. We don't always know what it is that works, and what works for one may not work for another, but I have to say Myofascial Release feels good as well as doing good.
Hi, I am still trying to get my head around.I am sure like many Fibro sufferers I sometimes want to curl up and die.
I feel its robbed me of my life. Every day is a bad day. I am still working, but I work part-time and I'm sat at a desk, I don't do any work that involves lifting heavy items. I also only work afternoons as I need the whole morning to get myself ready.
I also suffer from arthritis and anxiety.
I would not wish Fibro on my worst enemy.
I think the key is to accept it and try to pace yourself each day. Some days will be worse than others.
I hope this hasn't depressed you anymore, but unfortunately there is no simple fix and no miracle cure.
I've replied to Bodger as well, but it suddenly ocurred to me that back in the day when I was suffering from FM, I had what I considered to be more than enough Chinese medicine, including massage, cups, acupuncture, etc. I didn't think any of it really worked to be honest, but now - well - I don't really suffer from it, and I'm thinking you don't always get immediate relief from a treatment, and maybe it could happen years later. It's worth a try, but I really believe in Myofascial Release. You don't need so many treatments and you learn to listen to what your body is telling you.
I was struck by your post AB. I too was misdiagnosed with SLE around 20years ago. My fibro diagnosis arrived 3years ago after struggling with many symptoms, the worst being pain & fatigue & poor temperature control which led me to be unable to work. However, having my underactive thyroid treated has helped in addition to supplementing all vitamins including B12 which made the biggest difference. I was unable to work for many many months and like you had to use previous savings but now manage part time employment. Please don't give up, I would never have believed I would work again. I was dizzy/sick for months even lying down! I'm unsure if you've been tested for thyroid/vitamin levels but if not it may be worth a try. Can I also mention that a strict gluten/alcohol/sulphite free diet made a huge difference, making me clear headed again. I wish you all the best in your return to health x
Thanks for your time and lovely words. I won’t be giving up, I’m just a bit overwhelmed at the moment and just need to deal with that… I’ll find the best way for me and I’m a good researcher of evidence based material so that should help (even though there isn’t any nor any in the pipeline!)
In answer to your questions:I’m 56, it isn’t easy and I feel your pain and share it. I’ve been a wreck…some days I’m still a wreck. You’ll get there…it may not seem like it but you will.
I’ve read all the responses to your post and it’s unbelievable how many I resonate with, including yourself.
Fibromyalgia seems to be something that the majority of us have been left to deal with on our own…almost as though it’s nothing. When in reality it is really, really difficult to deal with and seems to have limitless symptoms.
I have other autoimmune conditions and always thought my long list of symptoms were down to these as I’d more or less been told by my Gp and other consultants that Fibro was nothing. Until I went into remission with the others and Fibro kicked in. Now I realise how hellish it can be and how many awful symptoms there are that I thought were caused by something else. My body is currently encased in a lead suit, my legs and feet are buzzing horribly as I type this and I have zero energy, amongst other things.
I absolutely hate being reliant on medication ( as though it’s a weakness to take it…it all goes back to childhood ) when in reality there are some days when there is literally no choice and without it I would be totally incapacitated. It took a while to get my Gp to believe how much pain I am in and to get all my medications on repeat prescription…it was a fight. So now it’s Amitryptylline/Tramadol/Gabapentin. The relief is palpable.
I’ve been in a place similar to you…my career defined me, I loved my job and worked hard…probably too hard. The grief when I could no longer be that person literally floored me and I felt like a rudderless ship. I didn’t know who I was any more. It takes time to adjust to the new you.
So, rather than go on and on here is how I deal with it:
1.Be kind to myself. I am suffering but not every day will be a bad day.
2.Learn my limits. If I do too much one day recognise that tomorrow will probably not be the best day. Go with the flow.
3.Take the medication. There is absolutely no point in beating myself up about the fact I am no longer superhuman. Perhaps trying to be superhuman didn’t really help. The real strength comes in dealing with this illness.
4.Dont feel guilty about days when I can do nothing…learn to relax and do nothing. This is another of life’s lessons.
5.On my nothing days …read! Use it to my advantage as a research day..How To Run a Business From Bed was a good one and also How To Live With an Autoimmune Condition. Knowledge is power. It also helps to know you’re not alone and some great people have written some great books.
6.Allow myself a good cry. Get it all out. Grieve for the life lost but then also remember that I will rebuild. It’s what we do.
I’ve just got back home after a family funeral. I had a dreadful crash last week (pain I couldn’t justify with a plausible cause, keeping me awake and night and literally making me cry), but it lifted in time for me to be present today and a support to my dad (he lost his bestest friend of 60 years!). I got home to a hot bath and a catch up on stuff and here’s your reply to my post…
I’m grateful to you for taking the time to reply, but more so for recognising the deeper aspects of this condition which is so difficult to narrate, even with a doctor! It’s not just about pain and fatigue and brain food etc etc, although they’re enough!, it’s about the loss… and as much as I’m the type of person who never takes anything for granted or expects anything to be a given, I didn’t expect to lose me… the feisty, strong and capable one. This is what’s overwhelming me… and that there is a lot of medical (and non medical) narrative about fibro being a modern-day “yuppy-flu”… remember that time when nobody believed those poor souls who actually had ME but were being told it was all in their minds… I know this isn’t all in my mind but it sure feels like some people think that.
HiPacing is a useful thing to use. Plan out your week, build up gradually on a day to day basis. Take regular breaks. Build up activities and if you feel a flare coming on rest! Speak to your gp they should refer you to the right health care. Also try to find a support group locally. Best people to talk to are other fibro suffers, were best placed to support and advise. Try different things until you find what suits you. We all suffer differently so different combinations of treatment and support work differently for everyone. Get bloods done so you can check all your levels so you can adjust your diet accordingly also. Hope this helps
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