Lady Gaga has recently “come out” as having Fibromyalgia. Most see the condition as psychological and imaginary. Over the next few days, we will be giving you glimpses into the everyday lives of FM (Fibromyalgia) sufferers. In the UK alone estimated 2-4.5% between 1.2 million and 2.8 million people have the syndrome. All the major news organisations have all jumped onto the NHS Fibromyalgia page to report the symptoms and the basic facts of no cure, no treatment other than opioid painkillers and psychotherapy. None of that tells you the latest science or what it actually feels like. So today we have asked our contributors who are FM sufferers to share a day in a life “pain diary”.
Loula: Fibromyalgia is always there. It’s the shadow in the room, waiting to block out the light. It’s the ultimate energy thief and while some aspects of it are somewhat predictable, a lot of it is utterly unexplained and unexpected.
9.13 am – I’m awake. I went to bed at 10pm after 2 x 30mg co-codamol and 2 x paracetamol. They are an opiate based painkiller. I got to sleep around 1am. My body feels like lead. I will need to rest today, I feel awful and my motor skills are slow and shaky. Medication – pile of vitamins, 2 x 8/500 co-codamol and a strong anti-inflammatory, meloxicam. Pain level 6/10 I consider a shower, and decide I’m too wobbly for it to be safe. Put on PJ’s (soft, elasticated, warm and non-irritating on my skin) and make myself a coffee.
1.25 pm – Pain has made my head foggy, I can’t think straight. My back is screaming. Just being upright on a sofa is enough to overwork my muscles today. I make toast, it’s easy, safe (I can’t cut or burn myself when I wobble). I go back to the sofa. Medication – 1 x 30mg codeine, 2 x paracetamol. Pain level – 7/10
6pm – My husband is home and making us tea. 10 mins ago I bent over to pick up the remote control from the floor and my back just snapped. Medication – 5ml of oramorph, liquid morphine. Pain level – 8.5/10
10pm – I forced tea as I felt so sick with pain and spent the evening in a daze. The pain has lessened, but the side effects mean I’m totally spaced out. Every time I move my back gives me an electric shock. I head to bed. Sleep is very much needed. Pain has creeped back up and I’ve been terrible company for my husband. Quiet, withdrawn, snappy and emotional. Pain seriously effects mental health. Sleep is a long time coming, and I silently cry until around 2am. I wake up every time I move throughout the night. Medication – 5ml oramorph. Pain level – 8.5/10
This was one of my bad days, not the worst, far from it. The scary part is that this is my normal. At least 3 days a week are just like this. 3 days are sometimes better, and I do what I can during those days. 1 day is much worse, usually a result of pushing myself way too much on a good day. That’s the problem with chronic pain/fibromyalgia. We try to enjoy the good days and want to be the best we can be for our loved ones and ourselves, but that means our bodies inevitably collapse afterwards. We pay a high price for trying to be ‘normal’ like everyone else. So if you see us being normal, don’t think we’re cured. Enjoy it with us, then support us through the aftermath.
Abi: 8:45 awoken by the dog alarm. Nothing says I love you quite like 9 kilos of enthusiasm standing on your chest. Surprised I actually slept through the night. I have had an ear infection for the last couple of days that left me dizzy but that seems to have passed. Pain levels at 5. Feel like I have a really bad case of the flu. Heat up my spine, in my hands. A normal day which is good – feel like I can get things done today. Time to go walk the dog.
9:45 After the walk, pain is at 4. Gentle exercise helps but I have to be careful I don’t push it. Hands are fine now but my lower back hates me. Breakfast this morning is a couple of clementines and coffee. I blend it myself, so I can’t guarantee the flavour. (Cat Returns nod…)
11:30 Hot sweats. Have done some work this morning. Fog is descending making it hard to – OH SHINY! Spelling gone (Grammarly telling me I should have written went.) all to hell. A headache setting in. Spine now on constant fire. Desk jobs kill me. Time to go to Tesco and get in the essentials. I move to stand up from the desk after being seated for an hour and a half and the pain in hips, and back turn it up to 6.
12:30: 13:30 Tesco – instant brain fog. I never remember why I went in there – even with a list. Anyway an hour later I am back home still at 6. I spend the next hour unpacking stuff and cooking. My housemates and I are in a “food collective” which means we each cook a main meal and share it, usually by poportioned frozen container. There are 5 of us and this means that food is cheaper and better for you than pre-processed ready meals. Plus, this means that for 4 nights a week I don’t have to cook. On the days I can’t move or crash early these are a godsend. Today I make my version of Chicken Paprikash enough for all 5 of us. I multi-task and microwave some chicken and veg soup and two pieces of wholewheat toast for lunch. Pain is now 7 moving into 8.
14:00 I am now at 9. Usually, I can hold off until 15:00 but the cold and running around doing normal things this morning is costing me. I hate drugs. Social situations are difficult enough, being autistic, without the further fog on fog from painkillers. Like many other FM sufferers I have discovered vaping CBD oil acts as a mild muscle relaxant and painkiller – but without the side effects of THC (You don’t get stoned. Sorry kids, they took the fun stuff out ;). At this point, every joint in my hands, spine and my knees are killing me. I am exhausted and really need a nap. But, there’s work to do so I change into flannel pjs and get back to the pc. And take the vape pen with me.
16:00 CBD helped me last this long in the chair but now I really must move to my bed and the latop. Not as much fun trying to code (LAMP) from only one screen.
17:45 Toast. Pain is flooding back from the 6 straight to 8/9. For FMs our medications come down to choices between addictions, sucking it up til we roll into a ball of incomprehensible whimpering and crying at the end of the day. Or a combination of both. Sun is now over the yardarm. I opt for a large chardonnay and whimpering under the covers. My partner comes home at 19:30 and now it is 18:00 (writing this) and I have an hour to get some rest before I cook again and try to summon some energy to be present with him.
20:00 I didn’t rest. I worked. Stupid I know, but if I speel now I won’t sleep later. So tired I am not thinking straight. Caved at 18:30 and took 3 soluble co-codimol. I was able to put together lamb chops and roast veg (no oil) and oven chips. Chips were for him. I know. Plus size, 14.5 stone and that’s what I eat? That’s FM. I work from home because I can’t manage an office. But the job still keeps me tied to a desk/sewing machine. And the pain keeps my life small and quiet.
00:38 Bugger. The not sleeping earlier has not helped. The pain was still a 9. So in hope, I took 30mcg codine at 22:30. Am now ending this day-in-a-life pain diary. Gog knows if this will turn into an all-nighter. Edit: I did not sleep at all last night time is now 7:28.
That feeling of having the flu, where your spine is burning and your skin so painful you can’t bear to have your clothes touch you never goes away. Touch me in any one of the 18 pressure points and I am flinging myself across the room to get away from the pain. But, I am a parent and a business owner. There is never a time when I can NOT be there. People need me. This has made me the greatest of actors. It’s why I work from home and rarely attend events.
Leah: In the interest of transparency, here are 24 hours with me. No day is the same. I’m always in pain, but I’m pretty good at shutting it out most of the time.
In the early hours, 2 or 3 am I woke up with cramp. It was in my legs, feet and toes and kept spasming over and over again for about 3 HOURS. I couldn’t get back to sleep. The pain was about a 6 out of 10, but only because there were a few seconds between each wave when I could breathe. When the muscles were really straining it was about a 9. I tried standing up, flexing my feet and legs, not moving, moving, massaging my legs and feet, rubbing them really hard to create heat. Nothing worked. Cramp is a big problem for me when I’m exercising, and I’m exercising a lot at the moment as I’m trying to halt my descent into a wheelchair. I don’t take anything for it yet, but need to go see my GP and see if I can take quinine tablets.
At around 8am when I got up I realised that – as ever – my lower back was hurting me. It hurts 24/7 and has been problematic ever since I fell down a concrete flight of stairs as a child. I’d say the pain is about a 5, but because it’s always there it’s tiring. I don’t take anything for it except OTC painkillers because I don’t like putting a lot of drugs into my body. I’ve tried anti epileptics for pain relief before and they made me feel weird. I’ve always seen living with Fibromyalgia as going 2 ways – you make your life smaller and don’t try to keep a job or social life, or you carry on a normal life whacked up to the eyeballs on opiates. It’s not for me to judge, but I’m not a pill person where possible. I try to distract myself instead.
As I was cleaning my teeth at about 8.15, as my electric toothbrush vibrated up through my teeth and jaw I realised I had swollen glands behind my ears. They were tender but not twice their usual size, which means I’ve struck lucky. All I can do is sleep well, eat well and try to reduce stress and they’ll go down soon. They were about a 2-3 on the pain scale
From about 10.30 am to about 4pm I was in a car with my family, doing lots of errands. We were in and out of the car for pee stops and different shops and every time I put my seatbelt on, struggling to do up the clasp starts to make my fingers and wrist hurt more and more until by the end of the day they’re throbbing and I’m getting really annoyed if I have to get out of the car again. I’d say this pain started off at a 1 or 2 and had got up to about a 7 by the time we got back home for a rest.
5pm onwards until bedtime – swollen legs and feet. I’ve been on my feet a lot today so my legs, feet and even my toes are like overstuffed sausages. The skin across the top of my feet pulls tight when I walk and sometimes mystery bruises appear there the size of apples. My ankles are so puffy and red they look sprained. I’ve got indents at the bottom of my toes where the top of my feet is so swollen. My legs get so swollen and heavy sometimes I can barely bend my knees. Again, there’s nothing I can do but rest. Rest is the answer to a lot. You HAVE to listen to your body.
To be honest, there’s more but there is only so much able-bodied people can take in before their eyes glaze over, so I’ll end it there. Every day is like this – it’s just the symptoms change. I never know what my day will be like until I get up and face it.
TOMORROW: We go deeper into what Fibromyalgia is and what a “flare” really feels like.
In the meantime – we know you are out there. Please share your stories and help support others with chronic pain conditions. xxx