What positives has fibromyalgia brought to your life?

All your fibromyalgia experiences, questions and answers.

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Re: What positives has fibromyalgia brought to your life?

Postby Bobby16 » Wed Apr 19, 2017 3:02 pm

Thanks Lindy. You obviously are suffering to. I to was tested for MS a few years ago. I was tripping, had double vision and balance problems. My younger brother has MS. It was ruled out with me. I hope your tests go well. I was a bit taken by surprise when you mention you need crutches . Is it common that people with fibromyalgia need aids . Can I ask how the crutches help you. My first physiotherapy appointment is this coming Monday. Can you give me any pointers on what I should be asking . Thanks
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Re: What positives has fibromyalgia brought to your life?

Postby exhausted » Sat Apr 29, 2017 1:01 am

I spent about 3 years grieving the life I had lost and it took a long time to see the positives but there are hundreds. I could spend more time with my dogs even though I couldn't walk them. I had more time for my son when I stopped working. I was bedridden for 9 months and bored stiff so my husband bought me some watercolours, paper and brushes and I started to paint. Within 6 months i was entering competitions and am now a Best in Show winning artist and do commissions; mostly pet portraits. I started writing and have had poems published and now edit my dog club's two magazines and write for a newspaper. There aren't enough hours in the day. I eventually gave in and got a mobility scooter so I regained my independence and can drive again and go out alone. Yes I miss walking my dogs over the hills but I can take them in the park on my scooter. I can't get round a supermarket so I shop online. I had been a teacher but i carried on for years as an assistant in a secondary school and school governor until other problems prevented that. The biggest drawback I found is that I am no longer reliable. If friends ask me out I just don't know whether I will be able to go and often have to let hem down so eventually they stop asking and life does become very lonely. Even my husband gets annoyed after all these years when we plan to go somewhere and I wake up so bad I just can't do it.
It is easy to start making excuses to do things because it's so painful and you get more and more isolated. If you find yourself going down that road, get help. CBT helped me a LOT.
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Re: What positives has fibromyalgia brought to your life?

Postby LindyM66 » Sat Apr 29, 2017 7:30 am

Hi Bobby

Sorry for late response. The physio just gave me sime gentle stretching exercises to do, and exercises when I manage to go to the pool - which I haven't been to in a while as I'm scared I can't get back up the steps. He was such a lovely helpful chap, but explained that there was nothing he could do further. Which I understood.
I was staggering around as if I was drunk, and doing "zig zag " walking - people in work were starting to look at me with " that look", plus I was feeling a wee bit scared incase I fell. So after I explained this to him, he gave me 2 crutches. I said I dont need 2, and he said, well use one, and leave the other in the car, should there be a day you need 2. I actually ended up with 4 ( my pal had a broken ankle) and I blinged the sh*t out of the Bobby. If you're going to use it, own it! You wouldn't believe the amount of people who have commented on it.
I don't know where you live Bobby, but I also discovered I could request a home assessment from social work. I didnt realise I would be entitled to all.of this. They were really nice and helpful. I have furniture risers on my sofa, a lovely pressure cushion as my butt cheeks are extremely painful, got a banister put in AND assessed for a wetroom. Im getting that done end of July. Anyone who qualifies for this ( and you do not have to be unemployed) will receive a minimum grant of 80%.
I also applied for PiP - again, not thinking I would be entitled to it or get it - I did. I got the standard care component.
No one tells you all these things Bobby. If I can be of any help, please ask.

Hope your physio went positively.

Much Love
Lindy x
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Re: What positives has fibromyalgia brought to your life?

Postby exhausted » Sat May 06, 2017 8:06 pm

started off on crutches partly because I needed to lean forwards to ease the pain but also because my balance was affected. I progressed to a wheelchair which i now can't use for other reasons and now use a mobility scooter. This is not all down to Fibro but a lot of it is; I have spinal problems, damage to my shoulders, herniated discs, nerve damage and adhesions . Soc services fitted a stair lift, got me an OT assessment who gave me chair risers , a pick up stick, wheelchair, a carer because I culdn't stand up long enough to prepare a meal and lots more.
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Re: What positives has fibromyalgia brought to your life?

Postby Bobby16 » Mon May 08, 2017 9:37 pm

I hope your symtoms go soon. I've had this for four years. It's bad.If we could manage we wouldn't be on this site. Hope you get soon. X
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Re: What positives has fibromyalgia brought to your life?

Postby Bobby16 » Mon May 08, 2017 9:55 pm

I'm booked on a six week course from my first appointment with physio. I'm on a waiting list. The services are pretty bad. Before I was diagnosed with any thing. I cycled 20 miles 4 times a week. I had a problem with my foot. For 9 months. I did see a foot specialist then. I told them I couldn't weight bare. NoBody did anything about it. I crawl up the stairs on 4 limbs. Like an ape. I came down the stairs on my bum. So you can guess , I thought my current problems, are caused by the struggles I had then. I don't know what to think anymore .
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