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Fibromyagia

Firefly123Firefly123 Posts: 276Member 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

  • Firefly123Firefly123 Posts: 276Member 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: 276Member 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: 276Member 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: 276Member 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: 2,555Member 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: 2,555Member Brian Blessed
    Thanks both suggestions are great


    I am a fibrowarrior!
  • cherbiecherbie Posts: 4Member Listener
    I also am newly diagnosed with this officially last year but likely had it last 12 years or so. I'm also new to this group so apologies if I'm posting incorrectly.  I too just feel like this latest flare up is lasting so much longer than any of the others just feel so worn out.  Would love the relief of a hot bath but my landlord is taking over 5 weeks and still not budging about getting somronr to look at my boiler so no not water XX genylg hugs to everyone
  • mdammdam Posts: 11Member Whisperer
    Hi I am new to group. Diagnosed with fibromyalgia in 2008. Before that myalgic encephalomyelitis since 1997. Also lots of other medical problems. Regarding the fibromyalgia my arms were always the worse especially my left arm. I have got worse over the years and had to be retired at 55 years old. Rather than have relapses I am now in a permanent very poor health and no longer have good days or good periods. Every day is a very painful not being able to do anything. Luckily I have supportive family and get pip. My GP tries to help but is reluctant to refer me  to a pain clinic as he thinks he knows best.
  • Emmach75Emmach75 Posts: 3Member Listener
    I was diagnosed with depression 18 months ago and 8 months ago I realised something else wasn’t right and have been diagnosed with fibromyalgia and possible rheumatoid arthritis. I feel like my life has been taken over and I’m losing more and more each day. I’m also a carer for my 2 ASD and adhd sons as well as another son and step children who have other conditions . I’m constantly in pain or very down. I have a supportive fiancé bit I worry it’s too much for him. He has Aspergers himself and he can be a bit hard to live with sometimes as he’s so black and white over everything. I don’t know quite what I’m posting this for 
  • mdammdam Posts: 11Member Whisperer
    Hi Emmach75. Has your Gp offered you pain relief and other medications such as gabapentine to help with the fibromyalgia. It won't help with the weakness or tiredness but take away some of the aches 
  • Emmach75Emmach75 Posts: 3Member Listener
    Yes im on Gabapentin atm bit a low dose. I have to go back next week for a review. It’s not going much but I’m on zapain also. 
  • mdammdam Posts: 11Member Whisperer
    Good. I am glad you have some medication. Over time you can keep increasing gabapentine under GP guidance. The increased dosage definitely helps with my finger tip numbness and stinging nettle pain over my feet and shoulders. Take care and good luck with review.
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
    I’ve just started a new anti depressant supposed to help fibromyalgia the name escapes me right now. Fibro fog lol. I’m on Gabapentin and I’ve been having more flare ups due to pain from an ongoing muscle spasm in my left shoulder and neck past 5 weeks. I decided to go online and do some research on meds for fibro and made a doctors appointment finally after putting it off and off. Like I do. So turns out I got a new g p and she was really helpful and also told me to book in for steroid injections. Unfortunately only one doctor does them and he has been on holiday for two weeks. The flare ups and extra pain I’ve had have been worst ever and it can really get me down but I just have to keep moving forward sometimes one minute at a time sometimes one day at a time. I find sleep deprivation through being in pain really affects my ability to cope day to day and getting a good sleep is top of my list. I’ve never taken meds for sleep and I’m wary because in the past some anti depressants have made me groggy the next day. Does anyone take sleep meds? I also take hemp oil just to try to help which I think it does. I feel less well when I stop it. Keep thinking about cbd oil but it is expensive. I know you can vape it now. I don’t vape or smoke but would try anything when it’s this bad. Hi to any new members and posters. We are pain warriors. X


    I am a fibrowarrior!
  • mdammdam Posts: 11Member Whisperer
    Hi debbiedo49.
     I agree we are pain warriors. Keep going and I hope the injection helps when you get it .I have had difficulty sleeping . I am seeing a different GP who is trying new medication. I am being weaned of citalopram and starting a new antidepressant which helps you sleep it is called Mirtazapine. I have only took a few so far and sleep is definitely better. But have been very groggy in day time. I  think this will get better given time.
     Take care and good luck.
  • ClaireSaulClaireSaul Posts: 82Member, Community advisor Chatterbox
    Hi @Emmach75, @mdam & @debbiedo49
    Just catching up with you all - having had a pretty horrendous pain week myself!  It is so great to see the support that groups like this can offer each other and I hope that you will find this, Emma.
    I take pregabalin - similar to gabapentin - and have used for sleep amitryptilline and mirtazepine in the past, but the grogginess was a huge problem for me.  
    Finding a GP who is understanding makes such a huge difference - along with a pain clinic and some the pain courses where you can meet up with others.
    Debbie - I am a non smoker but use a CBD vape with some success, particularly for spasms.  The cartridges are quite pricey but my first has lasted me 8 months - although I guess I might not use it as much as others.  I am also currently trialling a CBD liniment which is sprayed directly onto the skin.
    Good to meet you all fellow pain warriors!
    Claire
    Claire Saul
    Chronic Pain Advisor
    Scope
    [email protected]
    scope.org.uk
  • Emmach75Emmach75 Posts: 3Member Listener
    Thank you yes sometimes the pain is awful. I had mirtazapine for my first antidepressant but it made me so groggy 🥴 I couldn’t function or drive. I’m on citrapine now and it a bit better. X
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
     :) 


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
    I got my steroid injection last Friday. So far it’s not made much difference 😔


    I am a fibrowarrior!
  • fenfisherfenfisher Posts: 14Member Whisperer
    Probably take 7 to 14 days before you feel the affect I have every 6 months 
  • Firefly123Firefly123 Posts: 276Member Chatterbox
     Hi everyone Been in agony the past few weeks. My doctor gave me codeine but they make me sick. Its so hard with an invisible illness as you look ok and really in so much pain you could scream. Having been going through a lot of stress which definitely makes the pain so much worse. 
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
    @Firefly123 sorry to hear that. I’ve been bad too and you just think it can’t get worse then it does eh? I can’t take codeine either as it upsets my stomach to. I’ve been using heat wrap and ibuprofen and upped my Gabapentin and had a steroid injection which is all trial and error. Right now I’m looking at books on kindle about fibro esp around diet as I think certain ones can trigger inflammation so they say and it may be true. If I get any tips I will post them as I know we try anything to get less pain. It looks like my trusted cups of tea may need to go as dairy, sugar and sweeteners and caffeine can be triggers. I honestly live on tea lol. I am gonna try reducing the amount of tea I drink first replacing with herbal tea. 
    Make sure you look after yourself and go go to your g p x


    I am a fibrowarrior!
  • Firefly123Firefly123 Posts: 276Member Chatterbox
    Hi @debbiedo49 i also drink a lot of tea. Had steroid injections in both shoulders they did help for a while. Drives me crazy not being able to do simple things like take my jacket off. Any tips very much appreciated x 
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
    Following


    I am a fibrowarrior!
  • debbiedo49debbiedo49 Posts: 2,555Member Brian Blessed
    My steroid injection hasn’t helped much. 


    I am a fibrowarrior!
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