no one understands

All your fibromyalgia experiences, questions and answers.

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no one understands

Postby shelley2302 » Thu Apr 24, 2014 9:33 pm

I have just recently been diagnosed with fibromyalgia but the doctor said that I have pretty much had since I was 12 (I am 20 now) so for 8 years I was told by many doctors that it was all in my head and that there is nothing wrong with me which then made me feel alone as I knew there was something wrong with me. but I now think that even my parents and close friends think I am making it up or that its not as bad as I am making it out to be. for instance I would ask my mum for painkillers and she would delay as much as possible and then give me two paracetamols or Nerofen but they don't work and when I used to tell her that she would just brush it off like I didn't say anything. I have recently been put on 10g of amitriptyline which I have to take everyday as well as painkillers and I know my mum thinks its a waste of time but I think it is helping at the moment but I just feel like no one understands what is wrong with me and I would really like to speak to others who are going through the same thing and know how they dealt with people not understanding or listening to them as I don't know anyone who has fibromyalgia or anything like it.
please can someone help me
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Re: no one understands

Postby tori » Thu Apr 24, 2014 10:26 pm

Hi you are not alone at all with condition or this subject I totally understand. I was diagnosed in september and still feel their r those who dont believe but sometimes I think people close to you don't maybe want to believe. Try writing down how you feel with fibro and how its hurting you that you need her support and give it to your mum. ther is also a letter on here called for those non believer's I printed it so for people to read as it hard to fully describe how we feel. I also did alot of online research maybe you and your mum could do that together. :-) x
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Re: no one understands

Postby libbiek30 » Thu Apr 24, 2014 10:38 pm

So sorry u have had fibro since u were twelve that's awful. My daughter is 12 I worry she has it too but I'm hoping it puberty. I bought a book called fibromyalgia for dummies it really helped and there is a section fir family to read. :-D
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Re: no one understands

Postby denys » Thu Apr 24, 2014 11:06 pm

Hi and firstly :welcome: to the forum, maybe you could post a little about yourself in the 'Where to say hello' board. Unfortunately we seem to be hearing from an awful lot of younger people being diagnosed with FM and it must be incredibly difficult as you are just starting out on your path.

Getting family members and friends to accept that there is genuinely something wrong can be hard as this is an invisible condition and has stigma attached to it.

Have you tried to show people the post 'One for the non-believers' or 'The spoon theory' these have helped others get the problems we suffer across to others in some cases, so may help :?: :?: :?: :?:

You could get your mum to go to the docs with you and get the doc to explain things and then your mum can relay it to other family members for you :?: :?: :?: :?:

Anyway I hope we can offer you some support when you need it and you can be guaranteed that we understand :-D :-D :-D

As a Public Moderator of this forum my opinions/views expressed are personal and are no more valid than those of other members and not necessarily those of UKFibromyalgia.
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Re: no one understands

Postby Andyp » Thu Apr 24, 2014 11:31 pm


I was diagnosed with fibro last October. This was after 4 years of continuous pain following surgery to remove kidney stones. During this time I had many scans, saw lots of different people who were all telling me they couldn't find anything wrong with me. This made me very angry and depressed because I didn't think anybody was believing me.

I'm still finding it very hard to accept the diagnosis, but at least I feel I can now say to people this is what I have.

I hope in time you will be able to accept it and if people are funny with you - then they are not worth bothering with.
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Re: no one understands

Postby shadavv » Fri Apr 25, 2014 4:28 am

It's hard but please don't feel alone this group are a great bunch of people who always have an ear to listen and a shoulder to cry on Denys gave some great advice in an earlier post hope it helps gentle hugs xxx
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Re: no one understands

Postby painprincess1 » Fri Apr 25, 2014 11:14 am

Hi sweetie, as fluffy has said sit mum down and ask her to read some of these post . And the one u just posted .
Maybe mum just don't want you to be ill so be brushing it off makes it go away. No one wants there kids sick .
We all have ppl like that my OH is the same if I tell him I feel ill or hurt guess what so does he.i don't think it's cose he don't care more that he doesn't want it to be as bad as it really is .
smiles and the world smiles with you. cry and you cry alone.
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Re: no one understands

Postby SAgirl3 » Mon Apr 28, 2014 2:26 pm

I understand where you are coming from. I had this problem for many years. People told me it was all in my head to the point I actually believed them and stopped telling anyone I was sore. Talking to my dad he said after my diagnoses it all makes sense. However that obviously does not take away years of being told i was crazy. Im 23 now and believed I have had fibro since I was a child. If you ever want to talk im here. Im still trying to accept it all. Been over a year now and im still fighting for help and people understanding. Even if they understand you are in pain they will never fully understand it all. Not unless they have it. We all know we wouldnt wish it on our worst enemy. Its a long road but we all learn to cope. It will get easier and with time your mom might learn to accept your diagnoses to. Hope that helps.
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Re: no one understands

Postby stuartrmc » Sun May 04, 2014 6:20 pm


I am 25 and just diagnosed after 3 years of constant pain. My family all think I'm just pretending to be in pain so that I don't have to work. Luckily I found this forum and it is so helpful with people havin the same issues. It's not easy.. but I am finding my new limits ( much less than before). The main thing is to not be hard on yourself.

what we do in life echoes in eternity
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