Fibromyalgia Action UK
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So this is what my doctor said

Yesterday I went to doctor because I want to get to the bottom of my pain. I am not diagnosed but I posted yesterday on here with my symptoms.

This is what she said: if we diagnose you with fibromyalgia everything that goes wrong or unwell with your body other doctors will blame it on that etc. We don’t want to diagnose unless we are 100% sure. Now I have been to doctors regarding these symptoms for a few years. They done a full blood test on everything. No arthritis etc. Thyroid is doing ok too.

So they don’t want to put a name on it.

They done the same when I went all the time regarding terrible menstrual cramps. Turns out 8 years later I get a Endometriosis diagnosis.

Honestly I’m so angry. She said just take amitriptyline and we can up the dosage.

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Afternoon, I would differently asked to be referred to a rheumatologist now and hopefully get a diagnosis there, they have done the blood tests which is normally the 1st test they do to eliminate other things fair enough but when you have been on the receiving end of having to wait 8years before a diagnosis of endometriosis no wonder your angry ( my daughter has this so I sympathize it's really painful as I see it 1st hand with her) ring surgery to see gp again or speak to practice manager and say this is not on I want a referral . We read so often on our forum people taking so long to get a diagnosis. Are you happy with your current surgery ?? Or is it worth changing , is there a different gp at your current surgery who is clued up more on fibro patients. Good luck in going forward and let us know how you progress. If you would like to lock your posts here's a link healthunlocked.com/fibromya... you generally get more responses if our members see posts locks and not open to all of the internet, gives alittle more privacy. Take care xxxx

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Thanks so much for writing. Yes endo is awful. Basically what flagged endo was since I was 12 I suffered from heavy periods. Then when I was around 16, I started bleeding inbetween periods, then the awful pain followed. I’m now 25. I thought my appendix was bursting and I went to A&E, the doctor which was male said: you know you are a woman and these things happen, when you have children it will go away. I was so angry. My gyne seen endo in a scan in September, apparently it doesn’t show up very often on a scan. So he has now referred me to another gyne because he said it looks like there is too much for him to operate on. He is sending me to a specialist in endo. I’m going to try one more doctor and if they don’t listen I’m going to switch because I’m fed up feeling like no one cares. I’m recently married and some of my honeymoon was destroyed with continuous bleeding. Don’t know if I may or may not have children. I’m not going to worry over that. Yes I will lock my posts. Completely forgot lol. I’m going to go back. My skin hurts to touch. Sleep is awful. I feel like an old woman at 25. X

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Keep posting and let us know how you get on , my daughter went through the wars she has had 2 children they were not sure as lots of scaring but she still gets flares with the endo she works partime as well with 2 boys under 4 but hate seeing her suffer. I can really feel for you and a male doc saying that grrr I would have got a bed pan and tapped him on the head with it . Congratulations on you getting married , I think if only men could experiences this type of thing let alone periods they would think twice before speaking with out engageing brain . Hope hubbie is supportive . Yes your rite don't think too much about children you need to get you. Sorted 1st. I'm wishing you all the best in going forward love yasmintina

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Hi as yas said ask for referral to rheumatology x hope u get answers u r looking for take care x

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I’m going to ask. Because I wasn’t really sure what I was asking for I had to write on here x

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Omg why on earth are these Drs so frustrating?! Why don’t they listen and do their job properly?! I agree with yasmintina. Think about changing your gp or surgery. Also, I feel it’s important that you get a rheumatologist referral.

Please take care of yourself Hun, get plenty of rest and let us know how you get on xx

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Definitely, I feel miserable all the time between endo pain and now this crap. I’m sick of the whole here’s random tablets now go away attitude x

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Bless you Hun, I’m not surprised you’re feeling so miserable with it all. I agree with feeling fed up with taking tablets all the time. Your day is planned around the meds! Take care and I hope you manage to get a rheumatologist referral asap. Gentle hugs to you xx

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Yes, it’s making me feel annoyed with my body too. I just want someone to tell me what’s going on and what they are doing about it. Have someone on here questioning why I want to know? I came on here for help not for people to be rude questioning me. Thanks for writing :) x

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That’s awful, it’s up to you if you want to know surely. Makes me angry on your behalf. I’m so sorry you’ve had that experience, when you should be getting support instead!! You can report it if it’s upset you Hun. In the meantime, please take care of yourself and let me know how you get on lovely xx🤗🤗

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Mmm well I suppose you could say your GP is being thorough and wanting to make sure that your symptoms aren't due to something else, so....did she say what she proposed to do to determine this? If she has not already made it clear, I would ask your GP exactly what the plan of action is for further investigation into the cause of your problems, as you don't want it dragging on for years like it did with your Endometriosis. On the face of things I do actually understand her reasons for being reluctant to label you with fibro and it may even be the case she is not confident in confirming the diagnosis herself. But If all she is going to do is to up your meds and let you get on with it then I wouldn't settle for this and I would ask to be referred. I know how soul-destroying it can be when you feel you are getting nowhere so I do feel for you my love. Good luck and keep us posted on how you get on. xxx

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Nothing, she said just to take meds. No follow up etc. Of course. I know there job is difficult. But just like endo, they just palmed me off. I’m not happy with that. They messed around that long now I maybe have missed my chance to have children etc. X

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Makes you wonder how she thinks they are going to be 100% sure is she does nothing more about it? Like you I appreciate their job is difficult and I have the utmost respect for doctors (most of the time) but sometimes they do need a bit of a push. So as most have already advised I would ask to see a Rheumatologist. If she refuses then ask her to put on your medical notes that you have requested a referral because you are suffering with your symptoms and need to see a specialist for help, but have been refused. GPs should only refuse a referral if they have a genuine clinical reason. If she is just fobbing you off then she may be reluctant to justify this on official records. If she still doesn't refer you then I would definitely arrange to see another GP. Good luck. x

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Can I ask why you need a difinitive diagnosis?

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Because, I have had Endometriosis underlying and now this condition is seriously impacting how I feel. I have a right to know...

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It doesn't change how you feel or the medication you are treated with .

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I just would like to know what’s going on with my body. Everyone else sees where I’m coming from.

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Yes I agree, you do definitely have a right to know, and also you have a right to know what they are going to do about it! Fobbing you off with upping your meds, especially antidepressants is just not on! I really feel for you after what you have already been through, they just don't care do they? Take care hun xx

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I would ask to be referred to a rheumatologist if your Dr seems reluctant to diagnose you either that or she doesn't know herself which is why you should ask to see someone who hopefully would know what it is which is a rheumatologist.

as for asking why you need a diagnosis I would have thought it was obvious , You want to know what it is you are dealing with otherwise how can they treat it or not whatever is the case, , good luck

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Exactly, some people can be rude on here. I have a right to know. It’s making my quality of life miserable.

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My son has Asperger's,we all know it,he knows it and the medical profession know it, having a definitive label does not change it or help in anyway (unless it's about money)! and yes I do have fibromyalgia and have had for 20 years.I am not being rude as you so nicely put I was just wondering why you needed the label so much as it won't help your pain.

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I just came on for help and has anyone else got the same. I needed helpful info. I didn’t want questioned.

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Well said Missmonroe21

Sorry to hear that your son has Aspergers Alyson66 is he receiving any treatment for this , if so I assume the Drs would have to know what he was suffering with to give him the correct medication ?

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Yeah it's hard work,he takes it on and off so basically I have to hand feed them to him,kids eh.. but it's been hard and there isn't a lot of help out there but thanks.

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As I stated before,yes they do know,my son decided after a lot of thought that undergoing a lengthy assessment process for a letter stating his condition would not change anything for him..

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bless you i have endometriosis as well as fibromyalgia the rheumatologist told me that some symptoms of one can be the same for the other so he done more tests and done an examination then asked me again all the symptoms I have or get asked me exactly where I get pain and checked my pressure points and diagnosed me with fibromyalgia he said he wanted to be certain it wasn't just the endometriosis causing all the pain etc I hope you get some answers soon xx

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Me too, I just want to know how to treat it to have an easy life. I feel so depressed x

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my lovely I would definitely go back to your gp and say to her if you think I have fibromyalgia can you please refer me to see a rheumatologist so I know what exactly is going on as for the amitriptyline if you are not happy being on them then tell your Dr you would like something else i know they won't help with the endometriosis pain I take them for the fibromyalgia and I don't like them at all horrible tablets to take but I know other people who get on fine with them but for the Endo I take painkillers having both long term health conditions can really get to you at times both can make you feel rubbish but the right treatment is out there for you its just finding which one will help you it doesn't matter how many times you go to see your gp just to find the right treatment for your own well being keep going until you are happy with the medication I really do wish you well my lovely please let me know how you get on with your gp remember you have a right to know what is going on with your health 💖 xx

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Ask to see rheumatologist xxxxxx

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I’m going to this week x

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Good luck ,. I Hope you get the help you need, even if it's just to put your mind at rest , you take care

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Amitriptyline can cure our third world problems my Dr said so

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