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Recently diagnosed with fibromyalgia and struggling

beetle1973beetle1973 Member Posts: 4 Listener
edited January 2020 in Disabled people
I have just joined in the hope I can get some advice about fibromyalgia. I'm recently diagnosed and struggling 

Replies

  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    HI and welcome,

    I'm one of the community champions here on scope and i'm here to help and advise others.

    One of my conditions is also fibromyalgia. You say you were recently diagnosed, having a diagnosis of something can often make us feel even worse than we felt before the diagnosis, even though we may not be experiencing anymore symptoms, it's more psychological than anything.

    I've had fibro for more than 20 years, although i wasn't diagnosed until about 2012. Mostly i've learned to deal with it the best way i know how and that's finding things the help to ease the pain, when it's at it's worse.

    You can speak to your GP to ask them to refer you to the pain clinic but do be aware the waiting lists can be very long in a lot of areas and when you do go, there's possibly not a lot they can do to help you. Or just speak to your GP to see what your options are, unfortunately, it's finding out what works best for you.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • beetle1973beetle1973 Member Posts: 4 Listener
    Thank you for your reply. I am on the waiting list for pain management but it doesn't help. 

    I'm struggling to work out what is normal for me for example I had to see Dr yesterday as I am getting stabbing pain in outer thighs and knees when trying to walk, I asked is this a fibromyalgia flare he said I don't know, gave me a prescription for co codamol and sent me for a xray. All i got was if its no better you will have to come back. I'm in so much pain today I could cry and I know I have to stay active so have got crutches out. 
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    To be honest over the years, i found that nothing really helps in the long term. You just have to find what works and doesn't work for you, when the pain is at it's worst. I tend not to push myself over the line when i do things. Take my time and space out the things i do during the day. When my pain is really bad (most evenings) a hot bath or hot water bottles help. Staying active all the time just doesn't help me at all, it only makes my pain worse but of course we are all different.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • klh_1987klh_1987 Member Posts: 8 Listener
    Hi, @beetle1973

    I am in the same boat and just joined. I also have just been diagnosed with Fibro and awaiting an appointment for pain management. Has your GP put you on anything in the mean time? ive been given 20mg of amitriptaline but it doesnt seem to be doing any good. 

    x
  • beetle1973beetle1973 Member Posts: 4 Listener
    Hi they tried amitriptyline but it made me feel funny so currently I'm just on co codamol to try and dull the nerve pain im getting in my thighs when walking. Had scans and xray yesterday but I don't think they will find anything. I dont know what's worse the pain in legs or shoulders.  I'm struggling as the Drs don't tell you the type of things to expect so it increases anxiety, hence why I joined group.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Fibromyalgia affects people in many different ways and it really depends on the individual person. GP's can't really tell you what to expect because the condition varies so much. Trial and error with knowing what's right or wrong for you is the only thing i can advise. You'll most likely find that all medication isn't really going to help and nothing will make you completely pain free, at least for me it doesn't.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • beetle1973beetle1973 Member Posts: 4 Listener
    Thank you for your wonderful advise I feel better just joining group and it's reassuring to know I'm not completely losing the plot 


  • chiariedschiarieds Member Posts: 7,953 Disability Gamechanger
    Hi @beetle1973 - Welcome to the community & thank you for joining. There are quite a few people here with fibromyalgia, as you see. I have Ehlers-Danlos Syndrome, & the pain due to having the hypermobile type, is said to be similar to that of fibro (tho some additionally have fibromyalgia, like klh_1987).
    Activity helps me; otherwise my joints stiffen up, but I also curl up with a hot water bottle in the evening. Amitriptyline lowered my already low blood pressure so I was as dizzy as a coot, & passed out twice, so not for me either!
    As Poppy says, it's a matter of finding out what works for you, & altho I found pacing initially difficult to do, that really helps most people in pain, or with fatigue.
    Please have a look around as there are other discussions on fibromyalgia, & also chat here any time. :)
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @beetle1973. I have ME and fibromyalgia I also have spina bifida and scoliosis. I am in quite a bit of pain most of the time and have just learned to take things easy. If I push myself it makes thing worse. I used to take ibuprofen and co-proxamol which stopped working after years of taking them. I don't take pills now I hate taking pills so I use voltarol gel now which seems to help ease the pain. Like Chiarieds I also have to exercise to stop my joints from seizing up which is sometimes easier said than done if I am in a lot of pain.
  • pollyanna1052pollyanna1052 Member Posts: 1,998 Disability Gamechanger
    Hi all. There seems to be an awful lot of people diagnosed with fibromyalgia and it sounds really painful.

    Someone I know had it so bad, she said it even hurt in her ears to hear sounds sometimes.

    Do you think it is sometimes given as a diagnosis when they don't know what else to look for?

    Is there a single test for it?

    Sending all of you a very gentle hug  (((((((((hug))))))))

    Pollsxxxx
  • Han_Han_ Member Posts: 154 Pioneering
    Hi @beetle1973, how are you doing today?
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    Hi all. There seems to be an awful lot of people diagnosed with fibromyalgia and it sounds really painful.

    Someone I know had it so bad, she said it even hurt in her ears to hear sounds sometimes.

    Do you think it is sometimes given as a diagnosis when they don't know what else to look for?

    Is there a single test for it?

    Sending all of you a very gentle hug  (((((((((hug))))))))

    Pollsxxxx

    There's no single test for fibromyalgia. Before the diagnose is they have to rule out other things and a diagnosis can take a long time.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • skullcapskullcap Posts: 172 Member


    There's no single test for fibromyalgia. Before the diagnose is they have to rule out other things and a diagnosis can take a long time.
    I don't understand why, given that it cannot be actually tested for you would want a diagnosis anyhow?
    Surely if you tell the GP what the symptoms are they are able to prescribe medication to attempt to reduce the effect of those symptoms?
    If I have a headache I reach for the paracetamol to ease it. I don't go the GP to have a diagnosis of why I have it.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    skullcap said:


    There's no single test for fibromyalgia. Before the diagnose is they have to rule out other things and a diagnosis can take a long time.
    I don't understand why, given that it cannot be actually tested for you would want a diagnosis anyhow?
    Surely if you tell the GP what the symptoms are they are able to prescribe medication to attempt to reduce the effect of those symptoms?
    If I have a headache I reach for the paracetamol to ease it. I don't go the GP to have a diagnosis of why I have it.

    Why wouldn't anyone not want a diagnosis? It rules out other conditions by having the tests and it's always nice to know why you're experiencing so many problems and so much pain.

    Reaching for a paracetamol isn't going to help the pain experienced from fibro. You can't actually compare a headache to fibro and thinking that you can just tells me that you don't understand how much a person with it suffers.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    I had over 7 years of tests until everything else was ruled out before I was given my fibro diagnosis and can assure you paracetamol don't touch this kind of pain. Of course a diagnosis helps to understand why your stuck in bed for days why I can't stand up at times without feeling shooting pains could go on and on as it effects so many things for me. Learning to listen to our bodies is the first thing I would say. Since it affects everyone differently its hard to compare.
    I wish you well x
  • Han_Han_ Member Posts: 154 Pioneering
    skullcap said:


    There's no single test for fibromyalgia. Before the diagnose is they have to rule out other things and a diagnosis can take a long time.
    I don't understand why, given that it cannot be actually tested for you would want a diagnosis anyhow?
    Surely if you tell the GP what the symptoms are they are able to prescribe medication to attempt to reduce the effect of those symptoms?
    If I have a headache I reach for the paracetamol to ease it. I don't go the GP to have a diagnosis of why I have it.
    Hi Skullcap,

    As others have mentioned, fibromyalgia is usually a diagnosis of exclusion, and so other tests are carried out first to determine whether there is anything else going on. This is because its symptoms overlap with many other conditions. If there is nothing else going on then a doctor may diagnose the patient with fibromyalgia and then give appropriate advice and treatment. 

    I hope this helps.

    Han
  • chiariedschiarieds Member Posts: 7,953 Disability Gamechanger
    Hi @skullcap - I can't imagine why someone wouldn't welcome a diagnosis irrespective of their disorder. As Han has said, fibromyalgia can mimic many other disorders, which is why I've read extensively about this in the past, as it can mimic a disorder I have. GPs follow NICE guidelines, so knowing what the disorder might actually be helps them in providing medication that 'may' help, or recommend other treatments.
    Most people wouldn't go to their GP for help with a headache; something that doesn't usually persist on a relentless daily basis, & rarely persists as chronic pain, but if it did, you'd see your GP, & hope to get a diagnosis, as probably paracetamol wouldn't suffice!
  • skullcapskullcap Posts: 172 Member
    edited February 2020
    No wonder that there are queues at the GP and A&E along with months of waiting to see a Consultant.
    All I can say is that if I actually wrote down every issue I have be it mental or physical health and took it to the GP I would be there nearly every day of the week.
    Surely it's up to the patient to decide if they think the symptoms etc are worth investigating? Would a diagnosis really solve what is happening? For me I think that people today are too frightened of their own body and have a compulsive need to know what the problem is. I have a bladder issue which is well known as being an old man's problem. Do I really need to know what the medical term is? These sort of things you have to accept as part of growing old.
    I don't know much about Fibromyalgia other than I hear that it appears as constant nerve pain across the body. Is it that you just need stronger pain relief to reduce the impact? Would having 7 years of tests actually resolve the symptoms? Would it reduce the discomfort by knowing what medical term for it is?
  • deb74deb74 Member Posts: 754 Pioneering
    Hi Skullcap after reading all your posts it sounds as though you think fibromyalgia is an annoyance rather than a real illness. I think you will find that is a disability! and really takes over the lives of lots of people. As firefly has said it explains symptoms we may be having. I am sure if you were suddenly unable to walk without being in excrutiating you would want to know what was gong on. Or have to rely on crutches because you can't balance when you walk like I sometimes do. I have has symptoms for 7 years and have finally got an explanation of what is causing it. It has put my mind at rest!
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    @skullcap yes indeed, you clearly know nothing about fibromyalgia. First you compare it to a headache and then you compare it to a bladder issue. Having been diagnosed with this condition myself several years ago and also suffered with symptoms for 2-3 years before that i can assure you that finally having that diagnosis helped me to know what exactly was going on with my body.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @poppy123456. That is exactly the point I was trying to make. I spent years having symptoms before I was diagnosed. I have also got ME Fortunaley I have got a friend who also has fibro and ME and has had them for about 30 yrs. He told me that was probably causing the symptoms so at least I had an idea of what was wrong. It was such a relief to get a proper diagnosis. All I would say to people like skullcap who don't take fibro seriously is try living with it!
  • skullcapskullcap Posts: 172 Member
    Well, for a start I do take on board what people tell me. And I have not said that it is imagined. What I was saying was that having a diagnosis will not by itself give relief to the symptoms described. 
    What I was also trying to get over was that treating the symptoms is far more important than knowing the medical term attached to it. I have many things wrong with me one of which is having difficulty with walking and pain in the right hip area. I have no idea what causes it. Personally having someone tell me what is causing it is immaterial. My GP is happy to treat the symptoms with medication, painkillers, but has not pushed me to find out why it is there. Knowing why is less important than helping me walk better.
    I suppose it's each to their own. Some want a label attached to the symptoms.
  • poppy123456poppy123456 Member Posts: 22,218 Disability Gamechanger
    No one has said that a diagnosis will give any relief to symptoms and i'm not sure why you're thinking this. Until you've experienced what it's like to live with this condition then i don't know how you can judge. They symptoms of fibromyalgia is so huge that having a diagnosis helps you to deal with it because at least you know what exactly is wrong. Although it's not my only condition. Anyway, i won't make any further comments here because there's nothing further to add.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • Firefly123Firefly123 Member Posts: 525 Pioneering
    I think if you felt like you were paralysed from the neck down you would soon be wanting answers had to sit down on the ground in the pouring rain as you body could not move any further. I do not expect an answer for everything I have wrong with me but some things we definitely need to know. 
  • deb74deb74 Member Posts: 754 Pioneering
    Hi @skullcap. If this is what you meant why didn't you say it and why put it in a discussion about fibromyalgia. You should have started your own discussion because you made it sound like you thought fibromyalgia was like having a headache and it would go away if you took paracetamol. 
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