In May 2019, which was International Fibromyalgia Awareness Month, I did a series of posts on my Facebook page, one for each day. In each one, I outlined a negative effect or symptom of this chronic illness and a positive way in which I was trying to deal with it. This was not to garner sympathy, but simply to raise awareness of the many and varied symptoms of fibromyalgia and to keep myself positive and looking forward. Somebody suggested that I should collect them all into a blog post (which could then be shared more widely) so here goes:
- Negative: I have lost my short term memory. I can’t remember anything. I used to have a really good memory so this is endlessly frustrating. I write things down and admit I’ve forgotten things as often as I can and explain why. Sometimes it’s quite good, as I can’t remember films or TV I’ve watched and get to watch them all over again as if for the first time!
Positive: I have to read much more slowly than I used to if I want to remember what I’m reading. So I get to savour books much more than I used to. I love to read, but can’t read for long without getting tired, so I get through fewer books but enjoy them much more.
2. Negative: I often lose my temper and politeness: this is not so much a problem I have generally, but more with Dee (my wife). Because I’m so tired all the time, I can often be irritable and/or fly off the handle. I also tend not to say please or thank you to her some of the time (usually on a bad day), which really upsets her. This was not normal behaviour for me before this condition came into my life, and Dee has found it very hard to deal with.
Positive: this has forced us to communicate more thoroughly even than we did before (and we were pretty good before). It’s made me feel terrible about myself, but it’s also forced me to look at this side of my personality (I am a control freak and can be very bossy) and try my best to notice what I’m doing and change it. This doesn’t mean it will never happen again, but I’m trying.
3. Negative: I’ve lost friends. Sadly, when something like this happens, you really find out who your friends are. And sometimes it’s a surprise who sticks by you and who doesn’t. When I was first dealing with this I spent a lot of time moaning to friends and family. I’m not blaming the friends who have gradually disappeared from my life. I was very boring! I also no longer have the energy to keep in touch with people who don’t keep in touch with me. When everyone has busy lives, it’s easy to drift apart.
Positive: I’ve gained friends! I’ve developed some very important friends in the fibro & disability communities, both IRL and online. Sometimes, you just need to laugh or cry with someone who deals with the same or similar stuff to you. I’ve also developed deeper friendships with the old friends who’ve stuck around. I’m so grateful for all my/our friends. I/we couldn’t do this without them.
4. Negative: I’ve lost my concentration and comprehension. Concentrating is now an energy sapping task for me, and my brain has a tendency to skip off on its own to somewhere easier. I have to force myself back to the present. This is why I may say to you: “sorry, I zoned out for a minute there, what were you saying?” I’ve also lost the ability to comprehend anything too complicated. If I need to read an article or book which is on a difficult subject, I have a small window first thing in the morning, and even then I may well not readily remember what I read as little as 10 minutes later. I can’t tell you how frustrating this is!
Positive: I have more patience and tan increased ability to slow down a bit, and generally a better control over my thoughts. I’ve learned to slow down, ask questions, explain when I’m struggling to understand something and bring my thoughts back to what I’m supposed to be concentrating on. Practising mindfulness has been particularly helpful in this regard, helping me to recognise when I’m drifting off and bring myself back to the present. This has the lovely side effect of making me notice things more in the present (eg. birdsong, my cats purring, a beautiful cloud formation).
5. Negative: I will never again live a life free from pain. This one is a little nuanced, as I’ve been in pain for most of my life because of undiagnosed cerebral palsy, meaning I missed out on any physiotherapy that might have been offered to me as a child. The difference with fibro is that the pain is more widespread and can increase anywhere at any time. Some days the painkillers work, sometimes they do nothing. If I mention I’m in pain then it generally means I am in a lot of pain, as when you have chronic pain you get used to living with a base level of pain every day, which becomes normal. I am in pain all the time.
Positive: through being offered courses in pain management and fibromyalgia self-management, I now understand the complex reasons why my body is in pain despite the fact that there is no injury. It’s all to do with my central nervous system not functioning properly and also the fact that I don’t get enough stage 4 deep sleep. Mindfulness helps with the pain sometimes too. All of these things I had access to completely free thanks to our wonderful NHS.
6. Negative: the big one – extreme fatigue. Now when I say fatigue, I want you to understand what that means. I’m tired all the time. Not just tired actually. Exhausted. Some days I can’t even get out of bed, or if I do then I wander around like a zombie, forgetting everything, bumping into things, feeling like I’m wading through treacle. I drop things, I’m dangerous with sharp instruments or anything hot. It’s absolutely horrible and by far my worst symptom. Even on a good day, my energy is limited. Any task which requires mental or physical exertion can wipe me out. I could sleep all day and still feel like this when I wake up. I’m having a bad day today, and just writing this is making me feel like I want to lie down and go to sleep, even though I know that won’t help!
Positive: it’s hard to find something positive to say about this symptom. I’m trying out CBD oil to see if it helps. I’m lucky enough to be able to buy it, as it’s not available on prescription for fibromyalgia yet. Initial results are positive, but it’s still early days. I have learned to appreciate taking breaks to rest. I listen to podcasts and audiobooks and just close my eyes for a while. This does help.
7. Negative: I’ve had to stop doing the hobbies I loved. As many of you know, I’ve been a keen musician all my life, and before fibro hit me like a ton of bricks, I was playing my recorder with Stroud Morris Dancers and singing with Stroud Choral Society. I had to give them both up. SMD just became too full on, with evening practices every week during the off season and then folk festivals and pub dances etc all over the country during the dancing season. I find playing my recorder quite painful these days and of course it saps my energy, like everything else. SCS was a similar deal, with weekly evening practices and then big concerts three or four times a year. I found it painful to hold up the heavy choral scores, and the rehearsals move so fast and are so full on that I couldn’t keep up any more. And I certainly couldn’t manage a concert day, with an afternoon rehearsal followed by the concert in the evening. It’s broken my heart to have to give these two things up, and I also had to give up the small recorder group I ran, although I’m pleased to say it’s still going strong without me.
Positive: up until fairly recently, music was gone from my life and that was that. However, with a new found positive outlook after the fibro self management course I did, I am trying to do something about this. Yesterday, I booked myself into a half day Georgian singing workshop in Stroud in a few week’s time. If that goes well, then I’m going to try and find a small community choir to get involved with. I’m also seriously thinking about going back to my recorder group soon. Music has always kept me sane, so it’s important for me to try & find a way to do it without making myself worse physically.
8. Negative: my eyesight has changed dramatically. I don’t mean I’ve gone blind! One of the issues with fibro is the fact that every muscle in the body gets extremely tired very quickly. My eyes are one of the worst offenders. I get blurred vision almost constantly, particularly when reading or looking at screens. I have to watch TV with my eyes half closed & reading subtitles (I love foreign language dramas) is harder. It’s a rare day when I don’t get this symptom.
Positive: again, audiobooks and podcasts are my saviour here, as I can close my eyes and rest them while I listen. I’ve listened to some incredible things over the years. My optician also does her best to help me with slight adjustments to my glasses lenses, which does help.
9. Negative: my pelvic floor no longer responds to exercises the way it used to. Most women my age suffer from stress incontinence (wetting themselves when they cough, sneeze, jump etc). I’ve had this all my life thanks to that undiagnosed cerebral palsy I mentioned before. Over the years it’s got worse, but when fibromyalgia came along it got really bad. I do pelvic floor exercises every day, but to be honest, they don’t make much difference. It’s so bad that I have to wear pads like nappies every day.
Positive: after seeing a urogynaecology nurse practitioner recently, I know that my bladder is working fine. It’s just that the muscle gets tired because of fibro. She is the first person I’ve seen who’s identified that. I could have fairly radical surgery to help, but I’m not keen. She suggested a device which I can insert vaginally to support the neck of my bladder. I’ve not been prescribed one yet, but I’m really hoping it will help. Surgery will be my last resort.
10. Negative: lack of temperature control. This has something to do with the hypothalamus not working properly. I am always boiling hot. I can’t remember the last time I wore a jumper & felt ok in it. I also sweat excessively. It doesn’t smell, but I’m hyper aware of it & it’s so embarrassing.
Positive: I was recommended Starflower Oil and I take one capsule every day. This has reduced the sweating considerably. If it’s a hot day I may change my top a few times. I make sure I wear breathable fibres (absolutely no acrylic or nylon fabrics). Above all, acceptance that this is how it’s going to be has helped. I’ve stopped fighting it. Dee and I still have a tussle twice a year over when the heating should be turned on or off! She’s a very cold person, so it’s not unheard of for her to be sitting there in three jumpers while I’m in a tee shirt! 😂
11. Negative: I’ve lost my independence. I’m unable to drive because of my cerebral palsy. Before fibro, I would regularly walk down a steep hill to the bus stop & go into town for appointments on my own. Fatigue and deconditioning of my muscles due to lack of exercise means that a trip into town on the bus is now impossible for me. By the time I get there, I’d be too exhausted to get home safely, let alone do whatever I’ve gone in to do. So I’m now dependent on Dee & taxis to get around. I hate it!
Positive: I have started doing regular hydrotherapy to recondition my muscles & also doing short walks as many days as possible to help too. I have a vague plan set out in my head of where I want to get to fitness wise, but I’m determined to take my time & change the plan along the way if necessary. I’m determined to get back on that bus! 🤞💪
12. Negative: Having to cancel plans. This happens so often! Because fibro is an unpredictable condition, symptoms can flare up at any time. I’ve lost count of the number of times I’ve had to cancel theatre trips/plans with friends/my plans for my day etc. Some days, all I can manage is to get out of bed and get dressed. Some days, I can’t even manage that. And I never know how I’ll be from one day to the next.
Positive: this used to really get me down. We’ve lost so much money on tickets that I’ve now lost count. But I refuse to stop booking things, because I want to live my life, not just exist. Most of our/my friends now understand that I may have to cancel at the last minute and are very accommodating. A lot of them have long term health conditions themselves, so they get it. I always explain and am very open about all aspects of fibromyalgia (as I hope this series of posts is demonstrating). Now, this particular problem is still very annoying, but I try not to get too frustrated. I keep reminding myself that I am doing my best and that’s what counts. 💪
13. Negative: Anxiety. I’ve always had mild anxiety, but now it’s much worse. Sometimes it can actually stop me doing things because I just don’t feel safe. Like everything with fibro, it’s totally unpredictable, although I have a few triggers, like doing something new or something I’m not confident about, or doing something on my own when I’ve always done it with Dee.
Positive: Mindfulness has been the biggest help with this. I have learned to stop and take a breath (or several) to ground myself. Dee is also good at recognising it, as she suffers with it herself, and she’s great at grounding me too.
14. Negative: I’ve had to stop working. I never had a career as such, but I did spend five years training to be a bookkeeper. I set up my own business after I qualified, but I couldn’t work enough hours to turn any kind of profit. I was exhausted all the time, and I found it difficult to concentrate. Eventually, I started making mistakes, and when you’re dealing with other people’s money, you can’t afford to do that. After two years, I closed my business and I haven’t worked since.
Positive: what I’ve always wanted to do, in my heart of hearts, is write. I tried to make a go of it a while ago, but it’s a tough business to get into and I just found myself working quite hard for no pay.
I have a book that I’d like to write, and as we are now managing on Dee’s pensions and don’t 100% need me to work, I’m intending to have a go at writing it. I need to do a lot of research, for which I’ll need money, but I’m hoping to set up a Patreon account and see if I can get people to fund it, as it’s an interesting subject. Watch this space for more details…💪
15. Negative: I have to plan EVERYTHING! This is one of the most irritating aspects of this condition. Literally every day has to be planned. In fact, I use the three Ps: planning, prioritising and pacing. Let me give you an example. On Wednesdays, I have two regular important appointments which can’t be moved (although they can be cancelled). Say I need a doctor’s appointment. Due to our overstretched NHS, these are like hen’s teeth, particularly if you want to see a specific GP, which I prefer, as this condition requires someone who knows you & how it affects you. Now, the next available doctor’s appointment is on a Wednesday morning. In order to cope with doing this, I have to cancel one of the regular important appointments. There is no choice. I won’t be able to manage all three and not crash the next day. As it is, I tend not to arrange things for Thursdays as I am always exhausted after those two appointments. If you project this example across my whole life, you can see how difficult it is.
Positive: I can now manage two things in a day. For a long time, I could only manage one. Obviously, it depends on the intensity of the thing I’m doing, but generally I can manage more than one thing in a day. I have also got really, really good at this planning thing! If someone asks me if I want to do something on a specific date, I now automatically check two days on either side to see what I’m doing on those days and roughly how tired I’m likely to be and how much pain I’m likely to be in. Most of the time, I plan well & don’t cause a flare.
16. Negative: Medication. Lots of it. As is common with fibro, it’s not the only condition I have, so I’m already on medication for hypertension, underactive thyroid and type 2 diabetes. I’ve been taking daily painkillers since my teens, but fibro has stepped this up to the next level! As is common with a condition which causes widespread pain, over the years my GP had given me more and more pain relief, to the point where I was taking a ridiculous amount each day, all of which had side effects which in some cases meant I needed more medication to control them!
Positive: This was clearly an unsustainable situation, but when you’re in pain, thinking about coming off any painkiller is very scary. It wasn’t until I did the fibro self-management course in January 2019 that their advice gave me the courage to try and come off some of them. I am happy to say that I have completely stopped taking two tablet and am almost off another. There has been an increase in my pain, but I’m introducing another medication which is proven to be much more effective for fibro pain, so I’m hopeful that this will help.
I’ve also found that CBD oil is making a big difference to my pain levels. I’m already taking considerably less tablets every day. 💪😍
17. Negative: my relationship has suffered. It’s been a bit of a roller coaster. Because I’m so tired all the time, I’m not so good at listening, I tend to snap easily over usually trivial things and I’m inclined to give orders sometimes! We were one of those sickening couples who never row, but there’s been quite a few since I was diagnosed. It’s been hard for Dee to be catapulted into the role of carer, the one who deals with everything I can’t manage & the one who keeps an eye on me when I’m doing something where I could hurt myself or damage something.
Positive: the only way to deal with this is to communicate like fury! It helps that we’ve always been good at this and that we are both having counselling, which allows each of us to clarify how we feel. We’re still very much in love & that helps us through a lot.
18. Negative: having fun is hard. This is an extension of the planning post. We plan fun things into our calendar as much as possible, but every one where I know it’s going to sap my energy and/or cause me pain is difficult. I never really fully look forward to anything. I will be worrying about how it’s going to affect me even as I look forward to the fun. Sometimes, I have to forgo things because I’m just too “busy” that week & need to make sure I get enough rest. I write “busy” because busy for me is not busy for an average person!
Positive: mostly, once I’m doing the fun thing, I enjoy it. Every fun event is good for my mental health, so I keep scheduling these things to avoid depression and anxiety setting in. Any long spells with nothing fun happening have a tendency to end in bad mental health periods.
19. Negative: I’ve become much less articulate. I’ve always been a chatterbox and have prided myself on my ability to be very articulate when speaking. This hasn’t completely left me, but it’s much harder now, as there are days when I can barely string whole sentences together. I forget what I’m talking about mid-sentence, I can’t think of the words I want, sometimes I even say completely the wrong word without noticing or without meaning to. This is all due to the infamous brain fog and it’s so frustrating!
Positive: when this first started happening I would get really frustrated and sometimes even shout at my stupid brain. Now, several years later, I’m calmer. I’ve realised that the more frustrated I get, the worse the problem is. So I’ll laugh it off if I forget what I’m talking about. Or I’ll take a deep breath and wait for my brain to remember that word I’m searching for. Most of my friends and family understand what’s going on and are patient with me. With my fibro friends, we’re all the same, which can lead to some hilarious conversations! Laughing about it is definitely the best thing to do, and it helps with the frustration.
20. Negative: I have to lie about how I am all the time. This is nobody’s fault. I just can’t always tell people how I’m really feeling, partly because I don’t want to think about it, partly because I don’t want to bore them, and partly because sometimes it’s just not relevant to the conversation. I pretend I’m well to stop people worrying about me too. It’s hard to feel ill every day of your life, but people don’t need me constantly going on about it and neither do I!
Positive: bizarrely, this is also a positive. Lying stops me from dwelling on what my life has become. It allows me to do whatever I’m doing when people ask, without thinking about how I’m feeling now or am going to feel later. However, this is where I need my fibro friends most. They really understand what this is like and I know I can talk to them about my symptoms and how I’m feeling about them and they won’t get bored or overwhelmed. If you really want to know how I am, wait for me to say “I’m fine” and then say: “yes, but how are you really?”
21. Negative: Crash days. I have these regularly, and they are horrible. Despite sleeping for about half the day I still feel like I’m wading through treacle, and my pain levels are through the roof no matter how much pain relief I take. I don’t sleep well because of the pain. Crash days take at least a couple of extra days to recover from, and sometimes they can be the beginning of a flare, meaning the same symptoms for weeks or even months.
Positive: I’m learning self care. Crash days require me to be very gentle with myself and accepting of how I’m feeling. It’s very hard not to fight it and try and “keep going”. When even sending a text message is exhausting, all you can do is go with what your body is telling you. Sleep, watch TV to take your mind off the pain, use mindfulness. Whatever it takes to keep calm, because being frustrated only makes things worse.
22. Negative: I’ve become extra clumsy! I’ve always been quite clumsy, but fibro takes it to a new level. I’m constantly dropping things (thank goodness we have soft flooring throughout our house or I would have broken every piece of crockery we have), bumping into things, tripping over things (including my own feet). This is worse on bad brain fog days in particular.
Positive: tough one. I guess I’ve learned to take my time and concentrate on what I’m doing. I also allow other people to help more. Dee now always carries trays, for example, after an horrific incident at a Harry Ramsden’s in a motorway services, where I basically threw our entire meal onto the floor! 😂
23. Negative: Irritable bowel syndrome (IBS). Don’t worry, I’m not going to go into any detail! This is a common symptom of fibromyalgia and many people suffer with it much worse than I do. I have to be careful about what I eat. Fatty foods make things worse, as does stress and anxiety. I get a lot of acid indigestion, which means horrible sulphurous burps.
Positive: I’ve found that reducing the amount of gluten I eat has made a big difference. I’ve had far less tummy upsets since I cut it out of my daily diet. I can have it occasionally. I dream about nice crusty loaves of real bread!
24. Negative: I sometimes have trouble swallowing. This has been going on for years and I’ve had to do a barium swallow test (they scan you while you swallow barium, which is a liquid that shows up on scans), but as it’s solids not liquids that I struggle to swallow, I wasn’t surprised when nothing showed up. I now believe that this problem happens when either my throat muscles are very tired (usually on bad days or if I’ve been doing a lot of talking) or the muscles are very tense because of pain. I’ve got very good at discreetly regurgitating food & chewing it a bit more before swallowing it in smaller amounts, which usually helps. Sometimes I do choke, which can be pretty scary.
Positive: I’m trying to eat my food more mindfully. I tend to eat very quickly and fill my mouth with food. So eating smaller mouthfuls and really chewing them and savouring them properly helps me to slow down and I’m less likely to have trouble swallowing.
25. Negative: it can be very hard to find the right GP. Sadly, there are still far too many doctors out there who don’t “believe” in fibromyalgia. One of my friends was told it is a “dustbin diagnosis” and to go away and get on with it. Without a supportive GP, it’s hard to get the right medication. I had painkillers chucked at me willy nilly for years, to the point where I ended up on far too many and suffering because two of them actually counteracted with each other.
Positive: thankfully for me, I now have a very good GP. He understands that fibro is a real, physical illness. He agreed to refer me to the self-management course in Bath (which is considered to be one of the centres of excellence for fibro in the country) and he is actively helping me cut down my pain relief & introduce other medication which should work better for my particular type of pain. He takes me seriously when I present with new symptoms and always checks to make sure that nothing else is going on before attributing them to fibro. How lucky am I?
26. Negative: the weather can affect my symptoms. And when I say “weather” I don’t necessarily mean temperature, although that does play a part. Pressure changes and changes of season can affect it too. For example, yesterday the pressure changed in the atmosphere and it became colder and wetter. My pain levels went up considerably yesterday and I was totally exhausted. The worst time, however, is definitely the change of season between summer and autumn. September and October can be dismal months. Last year I had a massive flare and was struggling to even get out of bed for weeks.
Positive: I’m a little more prepared these days. I’ve also stopped panicking when my symptoms get worse. I remind myself that I’m not going to die and that I’m lucky enough not to have to work, so it doesn’t matter if I’m incapacitated for a few days/weeks. It’s still horrible and annoying, but I know how to cope now.
In summary: Fibromyalgia has changed my life forever, but I’m doing my best to remain positive and forge a new life along with my condition, not fighting with it as I have been for a long time. This list is by no means exhaustive and there are other symptoms, some of which I suffer from and some of which I don’t.
I hope that if you have fibromyalgia, then this list will help you to know that firstly, you are not alone, and that it is possible to live a life with fibro, even if it feels impossible now. Don’t be too hard on yourself, and try to fight for every bit of help you can get.
If you are reading this as a friend or family member of somebody with fibromyalgia, then I hope this has given you an insight into what those of us living with the condition have to deal with on a daily basis.