Do people around you understand your condition?

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Margarita_k

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13/04/2018 at 13:37

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Margarita_k

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Last activity on 07/10/2020 at 11:39

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1,195 comments posted | 40 in the Living with fibromyalgia group

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Fibromyalgia can be considered an invisible disease, as there may be no outside signs of it, despite the constant pain. This makes people around you think that there is nothing wrong with you, and yet the disease is there.

Have you ever encountered misunderstanding and negative reactions from people? How did you cope?

How do you usually explain your condition to others? Do you find it easy?

Your stories are more than welcome! Don't be shy - the aim of this site is to let you speak up and help each other. emoticon wink

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Wolfman79

27/04/2018 at 21:53

Wolfman79

Last activity on 28/07/2024 at 23:01

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2 comments posted | 1 in the Living with fibromyalgia group

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I often get funny looks from People when I'm out walking with my crutches. I find it difficult to walk without them. When I tell people what is wrong with me, I often hear them saying 'you don't look Disabled.' It used to upset me, now, it annoys me. I often ask them 'What does a Disabled person look like to you?' The answers I get are varied. I hear things like 'People in Wheelchairs' or 'You can tell when someone is Disabled just looking at their Face' or even 'People with missing Limbs are obviously Disabled.'

Even my own GP doesn't believe me when I tell him how much pain I am in.

I was diagnosed with Fibromyalgia by my previous GP but when I moved to a new area and changed to a closer Surgery and a new GP, I was told I cannot possibly have Fibromyalgia because it just doesn't exist. Within weeks, that very same GP diagnosed me with - wait for it - Fibromyalgia.

Despite my wonderful (he says sarcastically) GP diagnosing me with Fibromyalgia after insisting it doesn't exist, he is still attempting to find out what is wrong with me. He still arranges Hospital Appointments for me for Scans and X-rays and always appears fed up when he gets the same results as every other time.

He has even gone so far as to tell me I have Arthritis only to change his mind and tell me I have Fibromyalgia. Honestly, he changes his mind about my diagnosis almost as often as I change my Underwear.

I am at my wit's end now. I have no idea what to do. I know, due to a previous diagnosis, that I have Fibromyalgia, but I am now with a GP who can't make up his mind.

As for People, not understanding Fibromyalgia, I can cope pretty well with it. It just annoys me when they believe that you can't be disabled unless it is visible.

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Steve

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-04-27 21:53:14

sw290272

02/05/2018 at 13:02

sw290272

Last activity on 13/02/2020 at 15:37

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9 comments posted | 3 in the Living with fibromyalgia group

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Hi Steve, personally I would consider maybe changing to a different GP in that surgery. One that might have more of an understanding of your condition. Your present GP sounds terrible!

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-05-02 13:02:00

Margarita_k

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09/05/2018 at 11:22

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Margarita_k

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1,195 comments posted | 40 in the Living with fibromyalgia group

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@Wolfman79‍ @sw290272‍ Thank you for sharing your exprience and your opinion!

@all: don't hesitate to join in

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Community Manager

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-05-09 11:22:35

Cece54

14/06/2018 at 00:16

Cece54

Last activity on 31/05/2020 at 21:59

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5 comments posted | 5 in the Living with fibromyalgia group

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I also have fibromyalgia at chronic level . my pain is thru the roof I'm on morphine patches pain killers plus oramorph at nite . I'm still lucky to get 3 hours sleep . I end up in in day as so tired

. but I need a scooter to get around . why do doctors not understand or believe in it . there thousands of us with it

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Celia

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-06-14 00:16:24

Samantha1971

18/06/2018 at 16:26

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Samantha1971

Last activity on 28/05/2022 at 18:09

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I have fibromyalgia and chronic fatigue and also degenerative disc disease. People around eg family and friends try their best to understand what I go through on a day to day basis. I try my hardest not to complain as I'm very conscious of how that might affect my children but sometimes I can't help it. My partner is really supportive and so are my mum and dad, I feel really lucky in that respect.

As for other people who don't know me well, I don't think they have a clue and they certainly don't understand that it's and everyday struggle to do the basic things that come easy to most people. I am looked at like I'm lazy and fat which I know might seem harsh but that is how I feel.

I was once told by a physio that that pain I was having was all in my mind which really knocked me back coz you expect support from the people you look to for help.

Sorry for the long and moany post, it's the first time I've been brave enough to contribute

Sam

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Samantha ?

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-06-18 16:26:22

Mrschaddy

17/08/2018 at 01:36

Mrschaddy

Last activity on 09/12/2023 at 22:20

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4 comments posted | 2 in the Living with fibromyalgia group

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I care for my husband who has been diagnosed with fibromyalgia mixed connective tissue disease and now arthritis on multiple joints. His depression is at a low and he constantly says I don't understand and gets annoyed. I do understand I've had arthritis in my hips since having a split pelvis with my last son but he says I put mine on and that the pain he lives with all the time I just won't understand. Please help how do i make him see I do care and I do understand that's why I'm still here fighting for my marriage

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-08-17 01:36:14

Mrschaddy

Edited on 18/08/2018 at 21:27

Mrschaddy

Last activity on 09/12/2023 at 22:20

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Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-08-17 01:36:48

Cece54

19/08/2018 at 00:54

Cece54

Last activity on 31/05/2020 at 21:59

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@Mrschaddy why would u put pain on the same for him . as of now I'm in so much pain it stops me sleeping . I've have fibro for bout 10yrs now .but has got progressinly worst over yrs. where I can spend days or wks in bed I get. chorinc fatigue .where I jlust won t to sleep ........ please listen to yr wife . she does understands& cares

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Celia

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-08-19 00:54:19

JosephineO

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20/08/2018 at 10:30

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 22 in the Living with fibromyalgia group

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@Samantha1971

Hello Samantha,

It can be hard to explain pain to people who have been lucky enough not to experience such pain in their lives. Just be proud of yourself that you are getting through this.

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Josephine, Community Manager

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-08-20 10:30:30

JosephineO

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20/08/2018 at 10:38

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JosephineO

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Last activity on 15/07/2024 at 09:21

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989 comments posted | 22 in the Living with fibromyalgia group

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@Cece54 Hello cece54,

I am so sorry to hear that your conditioning is worsening. Maybe it would be worthwhile to take a visit to your GP to update them on how you're feeling lately?

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Josephine, Community Manager

Do people around you understand your condition? https://www.carenity.co.uk/forum/other-discussions/living-with-fibromyalgia/do-people-around-you-understand-your-condition-2270 2018-08-20 10:38:30

Do people around you understand your condition?

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