Folksy Ltd

Fellow fibro's

(Hanna-Mae Williams) #1

Any fellow fibromyalgia sufferer’s (or similar) out there? I’m so exhausted my creativity seems to be on strike. How do you get your creative juices flowing when you can hardly stay awake?!

(Claire Woodhead) #2

Yes, I know how you feel. I am a fellow sufferer. Just have to pace yourself. My crafting definitely helps with some of the symptoms though x

(Hanna-Mae Williams) #3

I find myself so tired sometimes I can’t even do my beloved art. I’m so frustrated lately. I just can’t seem to get my brain around things and even just measuring out some material to do some sewing feels like climbing a mountain, do you ever feel like that with your craft?

(Silvana Briers) #4

I find the worst effect is on my neck as the pain gets worse the more my head is bent over the bench, constantly sawing metal. Also, the lack of sleep because of the pain/stiffness. But don’t you find the more you live with it, the more manic you get? I just keep trying to ignore it and keep going - if I stop and sit for any normal length of time, I stiffen up too badly so I just keep going and going to the point of exhaustion, in the hope that I’ll get two hours sleep in a row!

(Jayne) #5

I haven’t found the magic answer to that yet! I find that my crafting helps keep my mind occupied and helps with the never ending swirling thoughts that are constantly going through my head! Sometimes though I find that either my mojo leaves me completely or my hands are just too bad to be able to do anything! What with that, seizing up and headaches from concentrating I feel like I’m stuck in a vicious circle! I have been known to just step away from it completely, from a few days to weeks, until the love and enjoyment I get from crafting wins the battle!

Gentle hugs to all,

Jayne xx

(HAZARDious) #6

hey! “waves to fellow spoonie” yup, fibro warrior here, lovely to meet you all, my pains not to bad at the mo, seems to be worse in the winter months for me, sometimes i have to close my shop, last year i had to close during the xmas months which was annoying obviously because i lost out on any xmas sales. Good luck to you all and remember–just keep swimming xxx

(Hanna-Mae Williams) #7

Yes, I’ve tried the battle-on approach! I too find my neck a particularly bad part, and my shoulders. I mainly paint/draw but even with an easel I find I still get pain. Uugh sleep. I used to despair of sleep. I’m taking medication to help now, but tried Bach’s herbal remedies and roll-on aromatherapy things. Anything’s worth a try!

(Hanna-Mae Williams) #8

PS have any of you read the books by Christine Craggs-Hinton? There’s some useful tips on pretty much everything! Medications, diet, natural remedies etc

(Bekki Stevenson) #9

I have fibro too. Unfortunately it hit me like a brick wall a few years ago, just as I was writing the pattern for sewing kits I was planning, was practically bed bound for about a year. Still struggle a great deal with it. The pattern has never been finished, ugh.
It’s nice to know I’m not the only one here!
I find that I get worse and worse the more I do. I have to choose what to accomplish in a day. Either take product photos, or write a listing, or do some craft. It certainly isn’t easy to run a shop when you’re in so much pain and so exhausted each day.
I find measuring and calculating measurements very difficult, I usually get my husband to do that part. He will cut some of my fabric out for me too. I tried to make turban-style headbands a while a go, they need just two seams and I couldn’t work out which seam to sew first.
It can be very frustrating to live with the limitations of fibro when all you want to do is jump up and get on with things.
I’ve had people tell me I’m lazy or that there is nothing wrong with me, I just need to get up and work. Or they remind me of how much more than me other people who are ill can do as though I’m not trying hard enough.
I agree with @HAZARDious - We are warriors! :grinning:

(Hanna-Mae Williams) #10

Yes, I find cutting material quite difficult too, you take it for granted until each movement becomes a huge effort -_- It’s good to plan what you’ll do each day. I usually plan one thing for the morning and one thing for the afternoon, but some days are just a no go!

(Silvana Briers) #11

Different things work for different people, it’s a weird condition - just try everything!

(LittleTrinketGirl) #12

Hi everyone, I have it too, was diagnosed after years of suffering and no one seeming to know or even care (or so it felt😏)
I struggle with doing anything for too long really, but since I’ve been making my jewellery again I’ve found it helps me, I used to feel like I couldn’t get up in the mornings but now I find I get excited about creating again. It helps my mind but not necessarily my body. It’s a horrible thing to have and the pain can be immense really. Thank goodness for creativity, it’s a saviour for me.
So good to not feel alone with this, a great thread to start :tulip:

(Nikola Matulewicz Evans) #13

Hi, yes I’m also a spoonie. My hobby is a balm, it helps me a lot.

(Hanna-Mae Williams) #14

I’m trying to do less ‘intense’ artwork now as I so often have ‘fibro fog’ and awful headaches. Luckily the medication I’m on now is helping a lot, but it makes me so tired that I find I can’t do my usual super detailed work (
on one hand it makes me sad that it’s impacting on what I love, but I’m trying to tell myself I’m just being sensible and having to adapt to my situation.

Has anyone gone to a pain clinic? I’m thinking of asking the doctor to refer me. I’m having physio at the moment which doesn’t particularly seem to be doing much! And how are you finding the medication you’re on?

(LittleTrinketGirl) #15

I sometimes think the more I fight it the worse it gets. Ive not gone down the medication route yet, tempting but still resisting it at the moment. I spoke to a lady the other day who told me she’s got Fibro too and she said that she takes Turmeric capsules and apple cider vinegar and has noticed a big improvement so maybe I’ll give that a go first x

(Hanna-Mae Williams) #16

I’m all for alternative therapies. I think they’re at least worth a try! I tried to get by with just pain killers for around a year before diagnosis but the meds I’m on now are a god send! Especially for sleep

(Plumporridge) #17

I went to pain clinic, a long time ago, it was a group thing once a week for about 12 weeks. At one point they nearly asked me to leave because I was going to have facet joint injections (paid for by health care from work) and this did not fit in with their mind over matter approach. I was told right at the beginning not to wear myself out looking for a cure because there isn’t one. If everyone thought like that we’d never find a cure for anything would we? Sometimes it wound me up, but I also learned quite a lot of useful stuff, so I would say if you get a chance to go it is worth it.

I would like to ask if anyone tries stretches for their psoas muscle because I do them after reading how a tight psoas causes fatigue and pain and it certainly gives me some relief.

(Claire Woodhead) #18

I’ve gone gluten and dairy free which has helped an awful lot with some of the IBS symptoms that seem to be associated with Fibromyalgia. I’ve yet to go sugar free totally, but it definitely helps when I cut down on that too. I also try to avoid medications too much. I have cut down on them as much as possible as it makes me feel even more drowsy in the mornings. I’ve taken up Tai Chi and Qi Gong which I seem to find very helpful. I’ve been going to a class for a year now and have a great teacher who understands the issues with fibro. Definitely worth looking into as it isn’t too strenuous and helps with balance too.

(Plumporridge) #19

I agree that Tai Chi is helpful. I went for a couple of years and thought it was lovely, the movement is beautiful. Once we did a demonstration set by the sea and it was magical, especially as it was people from all different groups. But in the end I found doing the same thing over and over again so boring I couldn’t face it any more! I really believe that it helps relieve all that muscle tension.

(Jayne) #20

I’ve heard that turmeric is supposed to be very good, I have thought about going gluten free as I know that I’ll suffer with the IBS side of things if I have to much but I really struggle with bread. I went on a 7 week pain management course recently, they talked a lot about mindfulness and got us to practice mindfulness eating with a raisin - I don’t think I’ll ever be able to look at a raisin in the same way ever again!!