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Having negative experiences when you tell people you have Fibromyalgia

claudiiewilson
claudiiewilson Member Posts: 7 Listener
Hello all,

Just wondering if anyone had any negative experiences? I've recently had one at my work place. I work as a Medical Receptionist and long story short, one of the Doctors who works at the practice said that "Fibromyalgia isn't a real issue" I was so in shock I didn't respond to him and instead left and had a cry in the toilet (had supportive colleagues with me) Just felt so angry, I don't wish this pain on anyone and would certainly no be pretending.

Just interested to see if anyone else had dealt this something like this?



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Comments

  • HJP290
    HJP290 Member Posts: 38 Connected
    Hi huni so sorry for what happened to you im only 2 n half years in 

    most people have been great certain people say can u just not try this or this or are u sure they cant fix you ??‍♀️ 

    And my reply is no there isnt and i do what i am able i dont really care if dont belive me 

    dont need people like taht in your life
    report it document who witnessed it and put fomplaint in stress and upset will aggrivate your condition 

    well done for carrying on working i didnt manage it so high five and keep going xx 
  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Hi @claudiiewilson, yes I'm afraid I have. I was with the Rheumatologist at a London hospital, who claimed to be the world's expert on Fibromyalgia and he bluntly said to me that Fibromyalgia is all in the mind and he would not allow me to have any further investigations.

    Since then, I have had ongoing investigations at a different hospital and it has been found that parts of my bones have died due to chronic steroid use. I admit that this is not related to the Fibromyalgia, but for a Consultant to refuse to believe that a patient with Fibromyalgia, which of course is not a psychological illness, might have other illnesses was absolutely appalling. God save us from doctors who are convinced that they know everything and the patient knows nothing about their own body!

    You might like to contact the Fibromyalgia Assessment helpline for more support. All the best. 
  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Association, not assessment, @claudiiewilson
  • claudiiewilson
    claudiiewilson Member Posts: 7 Listener
    MrBee said:
    Snap 34 years of them and somehow I'm still alive as most have committed suicide by the 30th year!

    You need to be super tough & resilient to deal with all the negativity from family and so called friends and so called humans. Very few out there I would call human!


    Yeah at the moment everyone has been great just that particular person! 
  • claudiiewilson
    claudiiewilson Member Posts: 7 Listener
    Hi huni so sorry for what happened to you im only 2 n half years in 

    most people have been great certain people say can u just not try this or this or are u sure they cant fix you ??‍♀️ 

    And my reply is no there isnt and i do what i am able i dont really care if dont belive me 

    dont need people like taht in your life
    report it document who witnessed it and put fomplaint in stress and upset will aggrivate your condition 

    well done for carrying on working i didnt manage it so high five and keep going xx 
    Glad most people have been great to you :)  Yeah I have reported this to my manager (but she also said that I don't look ill) 

    Thank you, I am struggling with work and looking to drop down a  few hours. xx
  • claudiiewilson
    claudiiewilson Member Posts: 7 Listener
    Oxonlady said:
    Hi @claudiiewilson, yes I'm afraid I have. I was with the Rheumatologist at a London hospital, who claimed to be the world's expert on Fibromyalgia and he bluntly said to me that Fibromyalgia is all in the mind and he would not allow me to have any further investigations.

    Since then, I have had ongoing investigations at a different hospital and it has been found that parts of my bones have died due to chronic steroid use. I admit that this is not related to the Fibromyalgia, but for a Consultant to refuse to believe that a patient with Fibromyalgia, which of course is not a psychological illness, might have other illnesses was absolutely appalling. God save us from doctors who are convinced that they know everything and the patient knows nothing about their own body!

    You might like to contact the Fibromyalgia Assessment helpline for more support. All the best. 
    Oh gosh thats terrible! So sorry you had to deal with that. I've recently had a new Doctor who has been amazing, and finally felt like I'm not going mad! Oh will defo have a look at that thank you for the recommendation :) and to you!
  • HJP290
    HJP290 Member Posts: 38 Connected
    @claudiiewilson

    well go above your managers head 

    she isnt aloud to say that to you 
    its a invisable ilness 

    looks like need retraining on these matters . 

    i have alloydina along with fibro and chronic pain syndrome 

    the alloydina causes me glow bright red like im sun burnt its the only visabile part of it but lesst i have something can see .

    except my legs dont wont proper it was all caused by spine injury . 

    You do whats best for you work wise  

    ask them to have occupational  health report done i did when i used to work and they sided with me . 
  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    I'm sorry to hear that you had that experience @claudiiewilson. You're unfortunately not alone in having this kind of reaction, and there's certainly a lot to be done to improve attitudes towards those who live with conditions like fibromyalgia. I'm glad that most people around you have been supportive :)
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  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Hi @MrBee,
     If it's not an issue why is it classed as the fourth most painful disease in the world well above Birth.
    Do you have any evidence to back up this claim? 

    I'm not doubting at all that fibromyalgia causes people a lot of pain, but it's important to try and remember to back up claims with evidence where possible.
    It's hell on Earth and no-one can ever fix it as it's a Genetic disease.
    According to the NHS website:
    It's not clear why some people develop fibromyalgia. The exact cause is unknown, but it's likely that a number of factors are involved.

    Here are some of the main factors thought to contribute to the condition.
    • Abnormal pain messages
    • Chemical imbalances
    • Sleep problems
    • Genetics
    This means that genetics can play a part, but the exact causes of fibromyalgia aren't known. 

    You're right that there's no cure as such, but there are some treatment options out there to help people manage their symptoms. You can read about these on the NHS website.

    I've also removed a part of one of your comments that may be upsetting to other members. 
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  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    MrBee said:
     If it's not an issue why is it classed as the fourth most painful disease in the world well above Birth.
    To be blunt I have researched this statement and cannot find a shred of evidence that it is true. Kindly post a link which evidences this or withdraw the statement. Logically there is no such assessment of pain because pain is entirely subjective. Two people submitted to exactly the same levels of pain from an electric shock will have entirely different experiences. 

    It is fair to say that the lack of basic understanding on fibromyalgia and why it divides the medical profession is depressing. Medical professionals can often identify a condition from its symptoms. When they cannot, they do what's called a differential diagnosis. That is they start to rule things out based on the symptoms until you get to the actual thing. Fibro, like IBS is one of those things that when you do a differential diagnosis produces no outcome. 

    Human nature being what it is the MP then split down the lines of "ooh, it's not known thus it's a new thing. Let's call it this." and "it's not a new thing. It's just a thing we don't know about yet" or "it's a new thing but we don't know what it is yet."

    The reality, which people really don't like, is that none of those views are as yet incorrect. There is no definitive conclusion as to what fibro is. What we can say for certain is that the "rheumatologist" who claims it's all in the mind may be lacking in people skills but, as yet, has not been proven to be wrong.  
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    You aren’t posting “facts”. You are posting your subjective experience. They are not the same. The plural of anecdote is not evidence. My mother nearly died from shingles. She lost all her hair. She had zero actual pain. I have dealt with multiple people with a fibro diagnosis, running well into high double figures, and less than 50% of them have any pain at all. Your experience is your experience. 

    Also please don’t post nonsense like “99%” food allergy. There is no such thing. 
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    What on earth does empathy have to do with this? You are making some unverifiable claims and claiming them as fact. You are expressing opinions as fact which is a breach of the terms of this site. You are making some claims, such as “99% food allergy” which are patent nonsense. 

    I think you’ll find you’ll be answering for them sooner than you think…
  • Tori_Scope
    Tori_Scope Posts: 8,262

    Scope community team

    Hi @MrBee,

    As has been pointed out, your experience is your experience, and should not be presented as fact. We're not trying to deny that fibromyalgia is painful for you, but rather point out that everyone's experience will be different. 
    Do the research yourself and you will find that it's deniable and then it's verifiable.
    If, in other cases, you have irrefutable evidence to back up your claims, you should provide a link to this. 

    I've also removed a line from your comment that constituted a personal attack against another member. We don't allow this on the community, as is outlined in our house rules.
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  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Hi @Tori_Scope, I find it very sad that some members always have to dispute what others are saying, quoting a "lack of evidence".
    Specifically with regards to Fibromyalgia, there have been several books written by doctors who actually researched the subject thoroughly. They concluded that Fibromyalgia is a "real illness". Quite often, patients with Fibromyalgia have significantly more dental problems and specific skin problems, such as deep cuts and scaling at the side of the nose. I've had both problems for years. Doctors should be looking to acquaint themselves with the results of new research, rather than dismissing patients. And I wish members of this Forum would be more understanding and give people the benefit of the doubt rather than arguing seemingly for the sake of argument. 
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    I find it very sad that some members persist with passive aggressive attacks on others and think that somehow by not naming them that is okay. So @Oxonlady to be clear, you might want to read my posts again. If you do you will eventually notice that at no point have I asserted that fibromyalgia is not real. Please do not make up invent what others have said in order to attack them. For the avoidance of doubt the actual quote was 
    Human nature being what it is the MP then split down the lines of "ooh, it's not known thus it's a new thing. Let's call it this." and "it's not a new thing. It's just a thing we don't know about yet" or "it's a new thing but we don't know what it is yet."
    If people want to disagree that’s fine but disagreeing with an opinion that hasn’t actually been expressed is unacceptable.

    As regards challenging people for lack of evidence I simply point you to the comment from @Tori_Scope. It’s not a matter of giving people the benefit of the doubt. If some thing is factual but likely to be disputed then post a link. If something is your opinion but you present it as fact then you are breaching the terms of the site.
  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Are you quite sure that I was talking about you, @mikehughescq? In fact, the reason I did not mention any names, is because during several different threads, irrespective of the topic of conversation, someone, I did not say you because it can be a different person each time  (!) seems to argue simply to contradict people.
    I didn't think that this Forum was supposed to be about proving anything but simply expressing our difficulties as people with chronic illness or disabilities or both and hopefully getting some support and understanding. 
    The last thing we should be doing among us is uosetting each other. And if you'd like me to clarify that @mikehughescq, I am still talking in general terms and not attacking you personally. In fact, the person I do admit to criticising was the doctor who told me that Fibromyalgia is all in the mind because he refused to listen to evidence from other doctors who say that it is a physical illness. And yes, there are published books with actual evidence. 
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    Can’t say I’m seeing what you’re seeing on other threads tbh. It’s entirely reasonable to challenge posts which make assertions where there is an obvious lack of evidence or the poster expects their view to be accepted through sheer force of personality. The reality here is that you didn’t post this comment on those other threads but you did on this one. 

    I’m afraid your criticism of the doctor, whilst understandable, needs to be put in the context that 

    - books about fibromyalgia are not research. They are books pushing a perspective  with a view to making a profit. Science and research are not books. Science is in peer reviewed research papers. Books might cite research but often only because it suits a perspective. 
    - whilst there is no dispute that there are physical symptoms, the evidence that the condition is physical in origin is not resolved and it is absolutely wrong to suggest that a doctor who claims it is not physical in origin must be wrong. That is not what the science currently says at all. The refusal of that doctor to listen to perspectives expressed in books, including books read by patients, is absolutely correct. Show them peer reviewed research and they will listen. Show them a book and they will frankly be scornful and rightly so. 
    - it it very easy to trawl the internet for a few seconds and find long, credible looking articles which assert that the history of fibromyalgia goes back 500 years. The condition  was first recognised in the 1980s and defined in 1990. Some people will believe anything however. 

  • HJP290
    HJP290 Member Posts: 38 Connected
    Hi 

    as a person how has a chronic illness and disability 

    i do agree with both sides 

    yes its a illness that doesnt have a easy test to say you have it unfortunatley . 
    its more of ruling out anything else it could be . And fighting for a diagnosies of anything to explain what is happening to you . 

    I have been lucky with my consultants i have seen and family friends since i got diagnoised .

    everyones journey is diffrent and no 2 cases of any chronic illness is the same , 

    everyone is entililed to there opinions but .

    this post was about support and advice about a incident of someone upsetting the OP 
    and have they had any simaliar experceince and how to deal with it not about if its all i. Your head or its a proven illness . 





     



  • Oxonlady
    Oxonlady Member Posts: 459 Pioneering
    Hi @mikehughescq, you remind me of my University tutors, whenever we wrote an essay, every sentence had to be validated with a reference to a scientific paper.
    But this Forum isn't a scientific or academic presentation. Yes, people ought not to express wildly unreasonable views but they can express their views nevertheless, without having to cite a scientific paper every time. 
    I don't know why you are dismissing books on Fibromyalgia, the ones I read were based on actual research.

    Hi @jimbob21190, I agree with you. 
  • mikehughescq
    mikehughescq Posts: 8,847 Connected
    Oh dear. I don’t really care what I remind you of @Oxonlady and I very much doubt any university tutor asks for validation of every sentence. A fine example of exaggeration. There is no over analysis going on here. If people write obvious **** then they should be called out on that no matter what the intent of the thread. Ditto of they breach the terms of the site. Nothing over analytic about that. 

    Again though I have not “dismissed” books. You are simply making up what I am saying to suit yourself. I have said that books are not scientific research. They selectively quote to suit a perspective. That serves a purpose but it is neither science nor truth and should not be presented as such. 
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