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I have fibromyalgia and want to talk to other sufferers who understand

thumperbunny Member Posts: 2 Listener
I have fibromyalgia and want to talk to other sufferers who understand


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @thumperbunny   Pleased to meet you welcome.

    Thank you for joining and sharing. You come to the right place.

    May I suggest have a look around the forum. You find plenty of support, advice and information.

    We are a friendly community. Care and share.

    Please ask if we can advise on anything some one will know.

    Please take care

    Community Champion
    SCOPE Volunteer Award Engaging Communities 2019
    Mental Health advice, guidance and information to all members
    Nutrition, Diet, Wellbeing, Addiction.
  • Ami2301
    Ami2301 Community Co-Production Group Posts: 7,946 Disability Gamechanger
    Hi @thumperbunny welcome to the community! :)
    Disability Gamechanger - 2019
  • steve51
    steve51 Member Posts: 7,154 Disability Gamechanger
    Hi @thumperbunny

    Welcome it’s great to meet you today!!!

    I have got “Chronic Pain 24/7” myself I have had this since 2005.

    We have got many members in similar situations on here.

    Please please let me know if I can help you further????

  • thumperbunny
    thumperbunny Member Posts: 2 Listener
    My partner has chronic pain we are a right pair we support each other where we can it's difficult when we are both having bad days.
  • Nikki8577
    Nikki8577 Member Posts: 12 Listener
    Hello. I too am a sufferer of the F word. I get no help or support so I would love to talk to others too xx
  • Firefly123
    Firefly123 Member Posts: 525 Pioneering
    Hi not long been diagnosed with it but long time suffer welcome 
  • twins2708
    twins2708 Member Posts: 5 Listener
    Hi  I have had fybromyalgia for years, i also suffer with arthritis.  I claim pip high both parts and have a mobility car which isn my lifeline, i belong to a fybromyalgia group on Facebook.  
  • 258suz
    258suz Member Posts: 2 Listener
    Hi I also have fibromyalgia along side arthritis and diabetes.  I'm new 2 this site 2 and would like people 2 talk 2 as people who don't have it don't really understand.  I've been 2 hell and back as where I live we have poor NHS and took years 2 diagnose anything. My son found out about fibromyalgia and when he showed me on Google the symptoms I cried. This condition is so depressing we need people 2 talk 2 X sue
  • XenasMum
    XenasMum Member Posts: 27 Connected
    It's been 3 years since I got diagnosed but I now know I've had it for over 20years. It's a horrible condition and difficult to say which is the worst bit. Constantly tired and my fybro affects my legs so walking can be difficult I was on crutches for about 7 months last year but I'd also had an accident in September and hurt my right hip and left knee 
    I've tried gabapentin which did nothing for it the only med that has helped is Baclofen 
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    Hi @thumperbunny,

    I have a severe case of Fibromyalgia which has been unresponsive to anything so far.

    I am currently trialing pregabalin, i’m 150mg twice a day and 20mg of Amatryptaline at night.

    Hi @XenasMum, what is Baclofen?
  • XenasMum
    XenasMum Member Posts: 27 Connected
    edited January 2019
    @DavidJohn1984 it's a muscle relaxant it really helps with my feet as they cause me loads of problems and I can't take ibuprofen because I have asthma
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous

    I’m guessing that’s the same as Amatryptaline?

    I take that at night to help me sleep otherwise I would be an insomniac ?

    Yeh I don’t take anything now like ibuprofen or paracetamol.

    I have Oral Morphine for after I’ve had my CVS attacks.

    Other than that it’s just the Pregabalin and Amatryptaline 
  • XenasMum
    XenasMum Member Posts: 27 Connected
    @DavidJohn1984 I take amitriptyline too in fact I'm not sure if I'm getting side effects with it, I'm going to a neurosurgery appointment on Monday and this apparently is to do with my fybro because I've got spinal stenosis not sure how it's linked but I'll let you know. 
    Do you get any side effects with amitriptyline?
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous

    Oh no I hope it all goes well for you!!

    I get horrendous side effects from it all.

    The Amatryptaline causes horrible drowsiness, and I my tongue relaxes and goes down my throat so I wake up chocking on my tongue.

    It also causes me to snore very loud and wake myself up.

    Then there is the dry mouth.

    But if I didn’t take it I couldn’t sleep

    I have sleep anxiety from waking up chocking on my own vomit

    The pain is also unbearable when I try to sleep as I don’t move.

    Please let me know how you get on 

  • XenasMum
    XenasMum Member Posts: 27 Connected
    Definitely @DavidJohn1984 the reason I asked about side effects is my tastebuds are doing really weird things. I can't drink red wine as it tastes like jam but white tastes like vinegar, I have to drink a cup of tea before I have a coffee if not the coffee is disgusting 
    If I drink tea later on in the day it tastes sweet but I don't take sugar.
    My appetite is really poor. I'm really exhausted more than usual. I've even stopped taking the amitriptyline because I wake up soaked and have to change my pj top I got told off by my GP about that she has told me to reduce the amount and speak to neurosurgery about it. But it's driving me demented ?
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous

    Oh gosh I have the same thing with weird tastes as well!!

    i even smell things weirdly

    like I can constantly smell savaloy sausages, burning toast, rotten eggs and also bad breath

    it’s very strange.

    But yes I also wake up soaked I have constant night sweats but the Amatryptaline causes me to have terrible nightmares.

    Has your Dr put you on any sort of meal replacement?

    I am on Fortijuce 2 times a day but he wants me to start doing 3 because of losing another half a stone since the new year.

  • XenasMum
    XenasMum Member Posts: 27 Connected
    Well @DavidJohn1984 up to yet I have actually gained weight although I'm trying to lose it now. But it's only a few pounds. I don't suppose you take Mirtazapine? As a friend of mine was taking both and getting odd side effects too. I've been told to speak to neurosurgery about it but my problem is I'm epileptic although 11 yrs seizure free but this affects a lot of meds I can take in case it affects my epilim. Bloody nuisance tbh and my repeat prescription is currently at 3 pages and I can't not take any of them.
    Tell you what though it's really good to know that I can talk on here to you (& everyone else) as I feel like I'm constantly whinging 

    I will be on to give you a full report on Monday after my appointment 

    Hope you have a good weekend hun focus on the good things even the little ones 
    Take care 
  • DavidJohn1984
    DavidJohn1984 Member Posts: 99 Courageous
    Hey @XenasMum,

    I have actually heard of them,

    My friend was on them and she was constantly out cold.

    I was told that all my medications would make me put weight on

    However all I do I lose weight due to the constant Vomiting.

    I know Pregabalin is an Epileptic drug, i’m Currently on 300mg a day.

    Since taking it though my weight loss hasn’t been so drastic.

    I managed to maintain a 12 stone weight for a month in December 

    Then I got the Flu or something really bad and it triggered my Vomiting and I lost half a stone.

    Yeh i’m Always here for a chat and an ear to listen.

    Have a great weekend and speak soon



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