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Fibromyagia

Firefly123Firefly123 Posts: 264Member Chatterbox
Hi for 4 months now I can't lift my arms as well as the chronic pain I can't seem to find any mention of this connected to fibromyagia as I've only recently been diagnosed and this pain has taken over my life. Im wondering has anyone else experienced this. I went from being a carer to 3 young adults to not even being able to dress/undress myself.
Thanks 

Replies

  • poppy123456poppy123456 Posts: 7,281Member, Community champion Brian Blessed
    Fibro affects people in many different ways. It affects me all over my body, from not being able to lift my legs, to raising my arms on most days. Even my ankles hurt badly by mid afternoon. I also have other conditions too, which makes it even worse.

    I do believe though that once you've been diagnosed it's more psychological than anything else. In your head you've been diagnosed and it's constantly on your mind but realistically you're most likely no worse than you were before you were diagnosed.

    I've had fibro for more than 10 years and was diagnosed several years ago. Tried all the medication you can think of, been to the pain clinic several times, hydrotherapy, everything. For me nothing works. You do learn to adapt and you get to know what you can and can't do. The things you struggle with etc. I always think to myself there's no point in moaning to people because there's nothing anyone can do. For me the worst time of the day is after 3pm and if i don't do what i want to do before this time then there's no chance after.

    Finding what works for you is the only way to manage your daily tasks. Hot baths always help me. You'll manage because you have no other choice.
  • Firefly123Firefly123 Posts: 264Member Chatterbox
    Yes I've had it for over 5 years they said going by my history just never lasted this long before maybe a few days.
    I can understand what you mean by psychologicaly as the longer it's gone on the more worry and stress it's been causing. As I'm used to being so independent and having to ask my daughter to help me dress and undress is so frustrating.

    I see a specialist tomorrow I guess to come up with a care plan my pharmacy will start giving me my meds in blister packs as I'm on so many for other health problems at the minute I'm marking an x on my hand sounds crazy but it's like my brain is asleep and I can't remember if I've taken them or not.

    But yes your right we find ways of managing as there is no other choice. 
    [email protected] 
  • Rachel55Rachel55 Posts: 2Member Listener
    Hi, I am recently diagnosed and I have this, there isn't a mention of this in the symptoms only elbow pain. 
  • Firefly123Firefly123 Posts: 264Member Chatterbox
    Well I saw the specialist today  she said I also have osteoarthritis and frozen shoulders and something else as well as all my other health problems.

    So I guess it's about learning that I can't do what I used to and start finding ways to manage what I can do 
  • HollypopHollypop Posts: 5Member Listener
    My pain started in my arms years ago, my doctor put it down to my depression. He put everything after that down to my depression until I saw a specialist who diagnosed fibromyalgia. In a way the diagnosis was a relief because I knew my pain wasn't all in my head, I could hardly move some days and was constantly worn out. Ive been to pain clinics, had physio, steroid injections none of which helped. My pain is worse in my hips and legs now, then my arms. I am trying to learn to pace myself though I'm rubbish at it! Also having to retire at 55 through ill health it seems, work are trying to write me off which is probably for the best as I cant do my job anymore.
  • Firefly123Firefly123 Posts: 264Member Chatterbox
    Yes it took me years also to get names for my pains. Had scans today and had more steroid injections so fingers crossed they help. Yes I need to listen more to my body instead of what I have to do
  • AlwaysoneAlwaysone Posts: 15Member Whisperer
    Hi @Firefly123 ; I've just been dxd with Fibro - I have Lupus/MCTD  but this muscle ache and fatigue is completely different - I have help 3 times a week which includes washing and drying my hair. I can do it on a good day but even then it's at the expense of some thing else.Pegging out the washing is like a day trip to a theme park!  It's real and, I believe, it's your body saying you need rest or healing x

  • Firefly123Firefly123 Posts: 264Member Chatterbox
    Yes it's not easy at all.this has to be the worse I've ever been a long hot bath gives temporary relief.i was looking for scissors earlier I could not think of the name was very frustrating 
  • traceydenisejtraceydenisej Posts: 7Member Whisperer
    I woke up nearly 9 years ago a d couldn't move from the neck down it was so scary for me as a single mother the doctor came out after 3 hours but I couldn't move anything till about 7 hours later they sent me for an mri scan to see if I had a stroke but hadn't only got diagnosed 7 years ago I still struggle daily but the docs said I could be in a wheelchair between 5-10 years so next Feb is 9 years and so far I just carry on as a single mum I have too they meds don't work and neither does therapy, just a little daily walk But any suggestions are welcome
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    I can empathise with most of the above and find from being on here people are affected in lots of different ways. I find drying my hair to be way too much effort and was wondering what have other folks tried in terms of aids hints to dry your hair. I usually just tie it back damp. It's a big effort to dry it even when it's short. So I grew it out to tie back. I'm thinking of something that attaches to a hairdryer that I can put on my head if that makes any sense lol? I have shocking stiffness in my neck and shoulders which is probably undiagnosed arthritis or similar but get nowhere with my g p just pain meds.


    I am a fibrowarrior!
  • hearsay68hearsay68 Posts: 4Member Whisperer
    Debbie, you can get a stand to put your hairdryer on. That way you don’t have to hold it and can either move your head or use alternate arms to brush or fingers. 
  • Milly123Milly123 Posts: 29Member Whisperer
    Debbie, back in the day, they used to have hairdryers with a hat (a bit like a shower cap) with a hose attached to it from a hairdryer. Don't know if they still make them like that or not. It would solve your problem of having to hold a hand held hairdryer. 
  • debbiedo49debbiedo49 Posts: 2,493Member Brian Blessed
    Thanks both suggestions are great


    I am a fibrowarrior!
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