Hello Everyone

So to cut things short i am a 22 yr old male and have been struggling with pains since about 13-14. My doctor prescribed me amitriptyline a few months ago but they havent helped. Either way after looking into these tablets and scaring myself thinking the doc thought i was depressed, but i stumbled upon an article on the arthiritis website about fibromyalgia. I read everything i could about this condition, and every single symptom is present in myself i mean everything from the tender spots to urgent urination, sleeplessness anxiety, irritability, different day-to-day and flare ups i mean everything. Im sure alot of you know what its like having this test then that test done to no avail, and i have been the same. anyway, my most recent trip to the doctors i mentioned fibromyalgia, and he basically said there is no chance and that there is absaloutley nothing wrong with me to the point where he wont give anymore medication (even though previously he gave me morphine which didnt work) no sick notes no nothing so i have had to come off ESA. I have worked most of my life doing various roles and found all very tasking. Its not that i cant work, but working is agonizing and very tiring more so than normal day to day pains(which are very painful at best) i just wondered if anyone had any advice as to what i do next.

Thankyou in advance


19 Replies

  • hi hunny so sorry for your doctor firs thing is big sort hugs . and you will fined all the help you need right here there is always some one who knows what to do . but the main thing is don't let them grind you down you have us now were always here there is always one of us to talk to and to ask advise big soft hugs kath

  • Hi Patrick

    Just a couple of suggestions. Can you see a different doctor in your practice? If not, change Surgery if you can.

    It doesn't sound like you are going to get anywhere with your current GP. If you feel strong enough you could say to your GP that you would like to be referred to a Rheumatologist. They are the Consultants that tend to diagnose Fibro, although increasingly Neurologists are now diagnosing too. A GP can also diagnose you.

    Your GP has a duty of care to his/her patients. If you don't feel you can ask for a referral can I suggest that you take someone with you to your appointment? Doctors tend to be on their best behaviour when someone else is there.

    Unfortunately it can take years, sometimes decades to get diagnosed. Not trying to upset you, just to say many of us have waited a very long time to get diagnosed.

    The only other thing I can think of off the top of my head is to wonder whether you are able to get enough money together for a private consultation?

    I will have a think and get back to you later if I can come up with any other ideas.

    Welcome to the forum :) You'll find some wonderful supportive people here.

    All the best

    Lu x

  • I agree see a different doctor if you can. Ask to see a rheumatologist or neurologist. Take things easy on yourself (pace yourself) if you look on mother site they have some forms that can be sent to your doctor about fibro. One of our wonderful administration can help you with that I am sure. Sorry my deslixia is messing with me so words are not coming out right. I hope you understand what I am trying to say. Good luck I know someone can come along and help more !

  • Thank you so much guys I rang the local rheumatology department and they booked me in for 5/11 and this has been going on with about 3 doctors but either way maybe a bit of progress is there anything in particular I should mention??

    Thanks again :)

  • Hi again Patrick

    Definitely write down everything you want to discuss and take it with you. This is only my opinion from personal experience. I would suggest that you go in and just answer any questions the Consultant asks you first and let him or her come to their own conclusions. Doctors in general are not keen on us telling our doctors/consultants what we think we have!

    Certainly tell your Consultant anything that they haven't covered. The major ones being pain, fatigue and especially important lack of sleep.

    These are only suggestions and I'm not telling you what to do, just trying to help :)

    Don't forget to let us know how you get on. Ask away if there's anything else you want to know.

    Lu xx

  • Regarding sleep, when I fall asleep I'm fine its getting to sleep that's the issue a mix of being uncomfortable and my mind just never switches off like its very disorganized and its hard to finish a thought without a new one starting before you know it your not really thinking about 7 things at once is that similar for you another thing lately I have always been good at reading but the words on the page tend to get read in the wrong order

  • I would say that the majority of us have sleep issues. The problem is that because of this we don't get to Stage 4 REM sleep which is when all of our cells regenerate and renew themselves. You need to be asleep for 4 hours before you get to Stage 4. Not getting regenerative sleep has a huge impact on our health and wellbeing.

    I adore reading but I find that I just keep reading the same line over and over again. I personally find that I can't concentrate on reading due to depression, Fibro fog and fatigue.

    These are only my experiences. Please do put up more posts if you'd like others to answer these questions. I feel like I've monopolised you a bit (not intentionally). You'll find that all Fibro sufferers have similar issues but in a different way if that makes sense?!

    I'm more than happy to answer anything you like, but I can only go by my own experiences and what I have personally discovered about Fibro. I also suffer from CFS, Hypermobility Syndrome, severe anxiety and that's just part of the long list.

    I'm off to bed now, but am more than happy to chat to you again tomorrow if you'd like.

    Lu x

  • Absolutely agree with all replies, change your GP and if possible take someone with you, when you are already feeling vulnerable you need support. Keep looking in on us and I hope you get answers soon. Tell them everything, write it all down so you don't leave anything out. x

  • I know how you feel when I had my daughter I got postnatal depression so when I started having these symptoms in 2012 two doctors put it down to depression even tho I explained a number of times that it was not and I was happy in my life just in pain. I then went back and showed one of them the nhs site and said I think it's this and she said you COULD be right gave me some tablets and off I went but she then took me of them and said I Didn't need them. So I have seen got worse to the point that I am in so much pain I want to scream, always tired (I'm 28 and in bed by 9), I have terrible problems with foggy days, etc so I went back to my gp and saw I new doctor who is fantastic and said that some doctors don't believe in fibromyalgia and that's why I have been treated the way I am now she taken blood and sending me to see a specialist. So I would say look for a new doctor that is going to listen and help!

  • BTW what do you all mean by fog?

  • Fibro fog is where we can't remember what our own name is sometimes! It's misplacing things. I tried to put my iron in the fridge and only realised what I was doing because it didn't fit :)

    Fibro fog comes and goes. Some days can be ok and other days I can't remember so many words it gets beyond a joke. I end up having to describe things to my children because I can't find the words I want.

    It's very frustrating. It's a general case of not really knowing what's going on and getting quite confused.

    It differs from person to person as does the symptoms that we suffer from.

    Lu xx

  • Like this :D

    And its funny u say that i find myself searching for a word that's right there on the tip of my tongue but just can't seem to say or will suddenly forget that I'm washing up and next thing find my hands in wRm soapy water haha

    Also I'm amazed at the friendliness of this board :D

    How has people partners reacted I swear mine just thinks I'm lying about pain etc was it different after diagnosis??

  • I think the reason we are all so friendly is mainly because we understand what everyone else is going through.

    I'm a single parent so can't help with the partner question but I'm sure someone will be along to help you with that.

    I'm happy for you that you've found us. It's certainly helped me enormously and I've made some wonderful friends who are always happy to listen :)

  • Hello and welcome Patrick!

    May I suggest that you invite your partner to go with you to your rheumatologist appointment... then when you discuss your list of symptoms they will hear everything that is said.

    I also find it helpful to have someone with me because I find that the "fibrofog" means i forget a lot of what is said and another pair of ears may help you remember.

    I have given my husband lots of information to read about fibromyalgia but unless you actually have the condition, then it is really difficult to understand. I call it "irritable everything disorder", because it seems to affect every part of my body.

    Please let us know how your appointment goes and hopefully you get all the answers and treatment you need :)

  • Hi and welcome to the form, your in the best of hands here :) Great support and advice given from our other fibro friends above. It would be nice to get answers, as said, write everything down, cause sometimes we tend to forget and remember after our appointment at the doc's.

    Gentle hugs and do let us know how you get on :) xxxx

  • Have you thought of writing a symptoms diary to show doctor /rheumatologist? It will show how you are affected day by day and you have the time to write them down each day instead of trying to tell them everything in a short appointment time whilst they are asking things and you will probably forget to or not get the time to describe all of the ways you are affected.

    Just a thought which might help you,them and anybody else to realise what you are experiencing.

    Take care and hope you get some answers.

  • Hi ptekspy

    Welcome to the forum and it is wonderful to make your acquaintance. I genuinely hope that you find the forum useful, informative and loads of fun! I have pasted you a link below to our mother site, Fibromyalgia Action UK which hosts loads of useful Fibro information: fmauk.org/

    I am so genuinely sorry to read that you are suffering and struggling so much, and I sincerely hope that you can find some resolution and relief to these issues. I would be tempted to either see a different GP at your surgery or register with a new surgery and seek medical help for your pain issues.

    I would keep a pain diary and list exactly how you are feeling pain wise. List where the pain is, how intense (if possible) how long it lasts etc. The take somebody with you to all of your medical appointments who knows you and has witnessed your pain so they can help speak on your behalf of what they have witnessed.

    Once you have some recognition from the medial community that you are suffering and struggling I would then reapply for your ESA, and the new PIP (Personal Independence Payment) so you have a decent income. Please seek help with your benefit claims where you need too.

    The CAB is wonderful for its help with benefits. Also, our parent site has a benefit helpline that you may find useful. I have pasted you a link for below:


    I want to genuinely and sincerely wish you all the best of uck.

    All my hopes and dreams for you


  • Hi Patrick

    Just wanted to see how you are today?

    I can see you have been given some wonderful suggestions and ideas regarding Fibromyalgia and how it affects us all in different ways.

    I don't know whether you have already done this, but I was wondering whether it might be an idea to show your partner this forum. You were saying you were having trouble explaining things to her. This is obviously very much your own decision and just a thought I had.

    All the best

    Lu xx

  • Maybe i explained wrong iat first I was given ibuprofen and told growing pains. They didn't help so it went up to cocodamol. Then tramadol then stronger tramadol then tramadol and codiene then morphine all of which gave no relief in my most recent visit I focused more on the sleep side of things so he gave me the amitryptaline. I didn't k ow I was to take them every night but I have the past few nights and they don't seem to have much benefit.

    To clear the rheumatologist I have been with them a while but they discharged me as they didn't find anything physically wrong with me. Except a slight hyper mobility in my left elbow. So that's how I could arrange an appointment

    Thanks to everyone for the support


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