Share your tips

Hi everyone, I am new to this site but I have had my diagnosis for approx 6 years however I have lived with the symptoms for years. I thought it might be a good idea that we share anything that helps so I'll start with a few tips.

I have an electric blanket but I don't restrict the use to my bed, I also use it on my sofa on top of and underneath towels.

I have a water dispenser instead of a kettle.

I buy grated and sliced cheese so I know that I should always be able to at least make myself a toastie in a toastie bag, my mum/husband will leave me with a flask and a pack up for the day just to make things easier.

This next one comes at a cost but does offer some relief and helps you sleep - I use Elemis aching muscle soak, you can get testers off ebay etc but a large bottle lasts a long time.

Plenty of heat bags. Got back ache??? Use your dressing gown tie to secure the heat pads on your back and tie it tightly to keep it in place (I do this when I am going out in the cold sometimes)

When getting dressed sit with your feet flat on the floor roll your top up and with your elbows on your knees bring your head downwards.

V shape pillows are great (best £15.00 quid I spent).

You can buy cutlery from the mobility website if you have poor dexterity like me.

Ermmmmmm I'll update any more that I have when I remember. Hope I'm not teaching anyone to suck eggs

9 Replies

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  • That's a good tip about holding heatpads on. I used to make heatpads with long straps so they could be tied in place. My massage therapist sold them for a while. Unfortunately I now don't have time!

    My tips...

    If you struggle to open bottles, jars, etc then a tool called a Baby Boa is the most versatile tool for opening things I've ever found. I still use it now!

    Do stretches in the bath - the poor man's hydrotherapy!

    Get a bath board if you struggle with getting in and out of the bath. I was given one by the social services OT - it meant I could sit on it to then swing my legs in or out of the bath safely. It's also good for propping a book or drink on whilst in the bath!

    Get a social services assessment if you need help at home! You never know how they may be able to help unless you ask. If you have a carer (e.g. your partner) then they should get an assessment as well. We got help with housework for a while, not because of me but because having to do the housework on top of a full-time job and looking after me was pushing my husband right to his limits of coping. Social services recognised that if he had a breakdown or left me, the bill for looking after me was going to be a lot more, so they looked after my carer.

    I'm sure I'll think of more later. Obviously it's best to acess effective diagnosis and treatments so that symptoms are managed, but you may not be able to get symptoms under complete control (especially if you have other conditions as well as Fibro) and it will take time to get control of your Fibro, so practical little tips can make life a lot easier in the meantime!

  • Great advice to call Social Services to get an assessment and ask to be considered for Direct Payments. It's essential if you live alone. I was given 24 hours a week in 2007 so now employ my own PA who helps with everything in my home, shopping and going to appointments. They can also bring great fun and structure to your days.

    If your in the UK the discount shop B&S have scarves with 3 charcoal heat pads in for only 2.99. I use these so much, putting them between calf supports when I have to go out. Love the idea of using dressing gown belts, I'll be using that. I also find the heat spray essential on my back. These can be from £1 shops now.

  • I do have some adaptations from OT but sometimes they just don't cover some things do they?? I have a long handled plastic brush and comb, I use these to shampoo and condition my hair.

    I have a husband and mum as PA :) its great ha ha I get my moneys worth from them. I have a B and M but not a B and S but I will give them a try.

    I have put the wheat bags under my scarf when going out before as well.

    Unfortunately we will never be fully under control and there is always that little something even on a reasonable day so anything to make us more comfortable is brilliant :)

    I have tried a few different diets - even a sugar free one as a high sugar diet can cause the same symptoms as fibro and wheat freee. Neither worked for me but I will try ANYTHING

  • Good tip for you if you buy a heat pad the one thats like a belt, after the heat has gone from that buy the hear pads from wilkos and stick on the belt, the initial cost us a lot but after this you have a reusable belt for cheap heat pads

  • I have bought a chinese balm, called woodlock. It is like deep heat/tiger balm however a lot better. You can buy it from a chinese shop or ebay.

    Secondly, put epsom salts into your bath water as you will soak up magnesium which your body will probably be deficant of ( OMG I think I have forgotten how to spell)....dead brain moment!!!

  • Thankyou for all these tips :) I`ve noted some down, I like the sound of the long handled brush n comb, where would I get one of these? I`ve had my hair cut to just on my shoulders, by hubby as cant visit a hair dresser, and my daughter usually does it for me as it takes me ages and I find it so tiring.

    thankyou again xxx

  • two hints from opposide ends of the price scale - top tip, invest in a mobility scooter if you need one ,don't allow pride to get in your way. Also consider hiring one for shopping trips from shopmobility, they're brilliant!

    Cheap tip - I now use the various packs of cleaning wipes ie antibacterial, bathroom, furniture etc, as well as facial wipes & kiddys wetwipes. They are perfect for keeping your housework under control ( almost anyway) I find it so easy to quickly wipe around the toilet & basin regularly & then only need to do a proper clean less often, Saves loads of energy.

  • I use heat pads, and tiger balm. I cant visit hairdressers so my hairdresser comes to me and I have a spray tap on my kitchen sink where she washes my hair but mostly i have a shower just before she arrives. I love my walk in shower because I can get in the bath but cannot get out again. I dont wear handbags unless they are across my shoulders. Normal handbags hurt my hands, elbows, wrists, fingers and arms etc. Changed my mattress and pillow to memory foam and have never slept so good and I'm not so stiff in the mornings. I have to have cotton sheets though because memory foam makes you very hot. I do hydrotherapy and a gentle Pilates class which is good exercise and not too active. I take melatonin and swear by it for a good night sleep, together with amitryptiline on my really bad days. Together with painkillers and pacing myself thats how I manage my FM and osteo arthritis. Occupational Health are very good at offering you some mobility objects to help around the home, I have an Electric Chair, high toilet seat, high stool and a seat which folds flat in my Shower and a specially shaped walking stick and a wheel chair if needed. For cooking lots of small pots not big pots and get my PA to prepare all the veg and help around the house. Social Services can help you with direct payment to pay for this if you are on disability whether your on your own or with a family. I have a husband and three children and I still manage to get this help paid for. For my chronic IBS I cut out a high sugar diet, alcohol, wheat and dairy and too many green vegetables which makes a big difference for me. I am so lucky where I live they have just introduced a new trial where we can now refer ourselves for Physiotherapy. If I can remember more tips I'll let you know. I think the idea of the belt is a great idea to hold heat pads.

  • Also I use alot of cleaning wipes for everything because of my asthma and it makes life much easier for myself personally and for the home and car.

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