Fibromyalgia diagnosis

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What frustrates me is those who claim they have fibromyalgia and have gone through tests, including pressure points and show that they don’t have fibromyalgia. But claim they do?, I feel as if the doctors should help those who are suffering from something as they are in pain but this is the problem and why fibromyalgia suffers get frustrated, if you had fibromyalgia you wouldn’t want to wish it on your worst enemy and if all tests are clear surly you would be relieved that you don’t have the condition and look at other conditions that could be the problem. 

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  • Posted

    Hi Cat

    That's exactly how I feel.  I was diagnosed a few years ago and take a huge number of tablets to function, but am still in pain and extremely stiff all of the time.  I have a sister who claims to have FMS (because her doctor claims it is a possibility) but she doesn't seem to suffer most of the symptoms.  She has no idea what I'm talking about when I ask about her fogs or anything else.  Her symptoms can be explained by her arthritis.  I'm so angry with her as it's such an awful condition that as you say Cat, you wouldn't pretend to have it, but she loves playing victim.

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    • Posted

      Hiya Sue I have the same loads of tablets lots of pain I work and find it difficult. When you say fogs I have lots of headaches forget what I’m doing head feels muggy all the time. Is that what you mean by fogs. I have heard people saying fogs but not really knew what they meant.
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    • Posted

      Fibro fog is when your energy levels dip, leaving you with extreme fatigue, feeling of weakness, heaviness in the chest, confusion, clumsyness and you have difficulty with concentration and memory issues that makes it a problem to power through your day, so studying, working can be difficult because you feel so drained, this is just one small part of fibromyalgia and Fibro fog doesn’t mean pain. 
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    • Posted

      Your head can feel heavy due to the tiredness and extreme fatigue that can then be felt as weakness throughout the body which can result in being bed ridden for days.
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    • Posted

      That’s me to. When I have told my physio she said that could be all the tablets I’m on. Some days I feel like I can’t move with tiredness. I have tried all different tablets. Now I’m getting mri scan can’t do physio because to sore and tired 😓 

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    • Posted

      I don't know your sister Sue14934 but I will say that my fibro has changed drastically over the years. There was a time when only my shoulders and neck hurt then it spread down my legs. I didn't get fibro fog until I had fibromyalgia over 6 years. I've now had it since 2005. I also have Chronic Fatigue Syndrome but not all of us have it in the same way. I never know what tomorrow will bring. I have days when the shower hurts and other days when the shower is exactly what I need... I hope she isn't "playing the victim" cause this illness progresses over time and it takes your life away and replaces it with a more lonely life.

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    • Posted

      I know her very well Jenna obviously, and I know her ailments.  I don't know any sufferers that persistently work 12 hour days then complain that their knee hurts a bit.  I understand that we all suffer in different ways.  I feel quite fortunate that I am able to manage my symptoms well enough to continue to work and don't need walking aids unless I have an attack of Plantar Fasciitis.  Yesterday I had a terrible attack in my left hip.  I could barely walk throughout the afternoon, but persisted as I had to.  By the time I went to bed it had almost passed, but the same pain is back again in my right hip.  I hope it will go as quickly as it came, but I know that it is just something that I need to manage.  I feel very silly limping one day, and then fine the next.  I can't imagine what people at work must think!

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  • Posted

    I feel for you and felt the need to put this post up to support fellow sufferers, problem is I find so many people who say they have it but haven’t had any form of diagnosis or have seen numerous doctor but don’t believe what the doctors say?...surely the doctor is right and if you have gone through years of seeing doctors with the same out come then surely you would be happy that you don’t have fibromyalgia?, I feel for you and must be so frustrating, only the genuine people who have been properly assessed, diagnosed and gone through the real pain, symptoms and trial and error of pain medication would understand and this is why a lot of people phob fibromyalgia off because people aren’t being properly assessed or just think they have it, really upsets me that myself and others like yourself who actually work, push ourselfs and want to help Ourselves to live a positive happy life. It sickens me when people who aren’t diagnosed use it as an exscuse to stay off work, try and get benefits and this is why fibromyalgia can get a bad name or those don’t really understand it. I have a great pain management team and specialists wgo give me the support and help I need but those who go on about wanting a diagnosis that actually doesn’t exist for them, yes fibromyalgia can mimic other conditions so surely if your tests, pressure points, blood works etc are clear then you would be happy and relieved? Not question the gp because you didn’t get the result you wanted? Surely you would look at other conditions.

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    • Posted

      I do understand, and sort of agree with what you are saying, but I'm sorry to have to say that I fall into the category of struggling to believe my doctors diagnosis of Fibromyalgia. From my point of view it's more of a case of not wanting to believe it and hoping my symptoms are from a condition that there may be a cure for, so that I can be the person I was 4 years ago, and get out of the living hell my symptoms are putting me through on a daily basis. Try not to be too hard on us disbelievers, we're only looking for some hope for the future, it's only because we don't want to have Fibromyalgia, which I'm sure all of us sufferers would want in an ideal world.

      However, after 4 years I am coming more to terms with the fact that I probably do have Fibromyalgia, especially with the day I've had today. My whole body aches, my shoulders, neck, back, and legs are quite painful, I feel quite light headed and very weak, struggling to focus my vision on anything, shortness of breath, tiredness, I just feel like I'm not on this planet right now. Bad times!!

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    • Posted

      Totally agree I was in denial when I was diagnosed too and took me along time to get my head around it, over the years with working with my specialists I have a better understanding, my frustration is more those who have seen lots of doctors, specialists, had the tests that show they don’t have fibromyalgia but aren’t happy with the result? Like they want to have it, it frustrates me because we live with the pain, the meds, we try to help ourselfs and want to live a happy normal life, while others claim they have it when they don’t x
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    • Posted

      Totally agree with you there Cat. There are claim to have and don’t need a reality check and live like us for a week or two. I think the problem is it’s quite an easy illness to fake as there are never any definitive signs to reveal if someone has FM. Anyone can make out they are in pain and suffering, and doctors nowadays aren’t really allowed to question them for fear of implicating themselves, either that or they are too busy to even be bothered, especially when results are normal.

      I actually got very angry with someone on a totally different website, as they said FM was the ‘Perfect Unseen Illness’, implying that I was in someway putting this on for financial gain. I’m not a vindictive person at all, but something snapped and I just wanted them to experience the pain and suffering I go through. I didn’t ask for this illness, I don’t want this illness and if I were to be able to have just one wish, it would be to have my life back, as I’m sure most, if not all of you would too!

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    • Posted

      Hi Jane,

      I spoke with my gp and I haven’t been tested for lymes and could be a strong possibility with my history so she is going to speak with the infectious disease department as she says it’s a spisific test that needs to be done so she will be in contact about the out come. 

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