I've had Fibromyalgia now for 6 and a half long years, and in that time I've learned a few things about how to make life slightly better. I wanted to share this experience in case it helps anyone else.
Seems a funny one to start off with, yes? No. Fibro people are incredibly sensitive to the weather. If I get too cold I get a chill which can last days. If I get too hot I very easily fall prey to sunstroke. If it's too windy (even on a hot day) my dry Fibro skin can chap painfully. What's the answer? Be smart. On a really hot day wear cool loose clothing which covers almost all of your body, preferably light in colour and made of cotton or linen. Think about people in really hot countries - they don't expose vast areas of flesh so they don't cook in the sun, they wear loose fabrics so the air can circulate and they often wear light colours - beige or white.
On cold days wear layers so if you get too hot you can take one off. It doesn't mean you have to carry huge woolly jumpers about with you - I always carry at least one large pashmina in my handbag, sometimes two, so if necessary I can wrap them around my head/neck/shoulders. Carrying a compact umbrella at all times is a good idea, because getting wet and cold makes my bones burn for days. You'll learn over time what kind of weather affects you and dress accordingly, but if in doubt layer as you can always take something off.
Footwear
Now you have Fibromyalgia you might feel like you've been on one of those vibrating fitness plates for a month. You might notice your joints feel tender, like every step you take shock waves through your body. You need to wear appropriate shoes. When I was first diagnosed I lived in Vans trainers, until I got Achilles bursitis and spent months in pain before an even more painful cortisone injection finally sorted it out. Now Dr Martens dolly shoes or boots with rubber soles are my friends - the soles are just the cushioning I need between my feet and the ground. I need to minimise the time I spend walking on concrete. Where possible I walk in woods, as the spongy earth is much less aggressive on my joints. I might be able to walk for only a couple of minutes on the street without pain some days, and maybe 10 times that on soft earth. It might be a dent to the ego to give up sexy shoes for nanna shoes, but if it stops your achilles heels from feeling like they're about to snap, or stops cramp it'll be worth it.
Clothes
Since I've been ill I've subconsciously changed the way I dress. I don't wear trousers with zips or buttons except on very rare occasions as my dodgy bladder means I need to get my trousers off quickly or I will pee all over them. Often I'll start pulling them down as soon as I get off the sofa as the urge to pee is so strong. I live in leggings and prefer dresses I can just pull on and off over my head, again avoiding anything fussy like buttons or poppers as my hands are weak and often numb for an hour or so when I wake up. My clothes have to be soft above all, as my skin is so dry and fragile that rough clothes can make me bleed. I get a huge amount of pain from putting on and taking off my bra so sometimes I wear one of those stretchy pull on bras. They don't give a lot of support but it stops me feeling like my arms are being ripped off by angry Silverback gorillas. You'll learn which bits of your body need adjustments and dress accordingly. At first it might feel like you're turning into an old person, but who cares if you're more comfortable?
Rest
Stress
You have to minimise stress. Ideally you need a supportive partner (who may have to bear the brunt of working if you're too ill to) who will understand that you didn't choose the illness, you don't want to be ill, but you are. Fighting against chronic illness makes it worse. Believe me, I've been there. The only reason I'm not in tears of pain every day is because I've said 'Sod it!' to so many things. Having to give up work was hard. Giving up most of my hobbies was hard. Saying goodbye to a whole bunch of people who couldn't understand or couldn't deal with the new me was hard, but without all those things my life is better. If you have people in your life who don't believe you or don't support you, where possible you need to cut them out of your life. You NEED support. You need to be believed. No one chooses to go through hard times, but when they come there's no point in asking 'Why me?' It's how you deal with things that matters. In many ways chronic illness makes you selfish. You have to be to survive. You have to make YOU number 1, and after doing exactly the polar opposite all my life I now have to.
You may find you've developed problems like IBS or an irritable bladder with Fibromyalgia. I've had to cut out alcohol except vodka and Crabbies, because everything else makes my irritable bladder agony. I minimise my caffeine intake as too much gives me panic attacks. My body needs more expensive, better quality food now. I used to live off any old junk but now my body tells me it is a temple and I feed it accordingly - low sugar, low meat consumption, high fruit and veg consumption, lots of water, no white carbs. Gentle exercise is important in Fibromyalgia. For me swimming is no good as I have CFS/ME too and it makes me so tired I become a danger to myself - I walk and talk like a drunk and am prone to falls and other accidents after swimming as it's too intensive, and I think the heat makes it worse too.
For me yoga has been the best thing. I do about 20 minutes 3 times a week when I can, but anything you do that's gentle will help stop your muscles seizing. When I do yoga I have more energy in the day and sleep better at night, as well as having less pain. You have to find your 'sweet spot' through trial and error - you need to walk the fine line between not being so tired that you are worse off, but you do enough that you feel better. I would suggest starting with as little as 5 minutes a day, every other day. Even gentle stretching is good - anything to loosen up those muscles. You will learn to exercise the smart way for you. We tend to drive to somewhere flat so I can walk without the pain of the steep hills we have locally. I can walk further on the flat and don't get terrible cramps and burning in my back and legs that hill walking gives me.
Drugs
As Fibromyalgia is a series of complaints there's no 'fix', you can only treat the symptoms. I'm on anti depressants, a muscle relaxant, migraine tablets and pain signal blockers. There are more 'whole body' type treatments you can try like massage or acupuncture, but you may not be able to get them on the NHS. Every time you get a 'big' new symptom, go to your GP - don't just put everything down to Fibro.
A good bed
I can't tell you the importance of having a good bed and a good mattress. If you're anything like me you'll spend a lot more time in bed once you're ill. It's of paramount importance you lie in comfort as a good night's sleep with Fibromyalgia is often as elusive as unicorn poop. If you're not actually asleep, you need to be resting in comfort. I spend about 12 hours a day in bed - trying to sleep and being asleep consumes half my days. I still get up feeling shattered.
Short cuts
Don't be afraid to use things to make life easier for you - electric toothbrushes, electric can openers, can grippers, etc. There's a whole lot of sensible advice about things you can do to make life easier for you here on the arthritis UK website.
Thanks for reading.
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