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Patients Fibromyalgia

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Topic of the discussion

Carenity Member • Community manager
Posted on
Good advisor

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

Beginning of the discussion - 4/27/18

Do people around you understand your condition?
Carenity Member
Posted on

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.

Do people around you understand your condition?
Carenity Member
Posted on

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?
Carenity Member • Community manager
Posted on
Good advisor

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

@all: don't hesitate to join in

 

Do people around you understand your condition?
Carenity Member
Posted on

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 

Do people around you understand your condition?
1

Carenity Member
Posted on

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

Do people around you understand your condition?
Carenity Member
Posted on

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?
Carenity Member
Posted on

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. 

Do people around you understand your condition?
Carenity Member
Posted on

@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 

Do people around you understand your condition?
Carenity Member • Community manager
Posted on

@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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