Worried about doctors visit new to site

Hello

This is hard to explain.thing is I can't remember a day without pain even as a youngster and I'm 26 now. I have all the symptoms of fibromylagia (spelling?) But have never gotten any treatment . My only memories of talking to parents about it lead-to dismissal and disbelief and same with doctors . One told me to touch toes ...nothing wrong with you. The other insisted I was pregnant ! Lost most family and friends because they don't believe me and I get upset and frustrated trying to make them believe. Pain every day makes me depressed and inactive but fear OT not being believed has prevented me not seeking medical attention . Last 6 months been getting worse and my partner said he'd leave if I didn't get help. Been doctors twice since he said that but bottled out ND spoke about back pain. Feel like a coward . Got another appointment Tuesday and I'm terrified. What can I do ?

27 Replies

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  • Be truthful print out the fibro symptoms and take them with you ask if it possible you have it or does he know of anything else it might be. Fibro symptoms are very similar to Complex Regional Pain Syndrome

  • Thank you

    I have everything written down and have kept a symptom diary for a week

    Bot long I know but I've been backing out of treatment because of doctor fear

    I hope he listens I really eo because all my symptoms are invisible

    I don't want loads of meds or be signed off sick or get benefits I just want some understanding and a help to manage my symptoms

  • You need to understand and be ready to accept that if it's fibro or CRPS you may never be able to work again, It was 3 years before I accepted that I could never work or drive again. Life would have been a lot less painful if I had accepted that when I was told it

  • I will try to swallow my pride.

    I've just heard so much from people who don't believe me and thinking I just want disability or pills to sell (decent help that my estranged family sold drugs I guess )

    I'd hate for my overstretched go to think I was wasting his time.

    I have read many of your posts andthank you for replying

    I'm hoping he can help me get to the bottom of my symptoms as they have already cost me so much already and I don't mean money

  • Hi I went through that in 1994 when i got a diagnosis of fibromyalgia. I had never heard of it back then and hoping Drs will believe you is difficult. I don't know if its the same now but mine was on tender points and where i felt pain.

    Over twenty years later they now think it is a different rare disease. But believe me no matter how scared you are just think best to get checked because you never know what will turn up no matter how small. If your not happy with that Dr just try and find one that fits you and you get on with. you dont want one to dismiss you. I have had a few of those, plus I get worried and scared everytime I see one.

    i have been in pain all my life and thats been 43 years.

  • Use the time with GP productively. Show him your diary. Have written bullet points of things to say. Remember you only have 10 mins so make them count.

    I have also lost friends due to my (unseen) disability but finding a name for one of my issues has made a huge difference to not only me but to friends and family.

    Again with regards work life does get easier with a disability/ named condition. It shouldn't be it does. It means I can work reduced hours even though job should be full time. I have had a specially adapted chair at work. Work arranged this without me having to go to Access to Work but again this option is available in the future if required.

    I also claim PIP which helps financially with working reduced hours. As well as purchasing items such as mobility scooter, and kitchen and bathroom aids.

    All this has taken huge amount of work on myself and learning acceptance of situation. Taken some years to get to,the place I am now.

    However I can't agree with comment about not working. Yes there are plenty of times when I could give up and stop working (a doctor even suggested it due to increased mental health issues at the time) but for ME working is part of who I am and I want to keep going as long as possible......

    Be brave and explain what is going on for you. Without this how can you get any help from doctors?

    Let us know how you get on.

  • Than you for your kind replies. I will truly try my best to get him to listen and do everything you've advised. I didn't expect any replies at all and I'm so grateful that you all took the time to reply.

    I would love to carry on working as I am the breadwinner and a carer or a someone with severe depression and someone with epilepsy.

    I hope I get somewhere and I have made sure I have everything written down

    Symptoms are worse today because of a cold but I think that's normal for me

    Thanks again to everyone

  • Hi Titanaboa.

    I'm very very sorry to see your current/previous problems.

    Yes because our "Chronic Pain" is a "Hidden Disability"

    It is very hard for us too show how bad we are pain wise.

    Since my Stroke in 1998 at the age off 32. People think that I am "fine" & that I should get up &ago as before.

    I have thought about having a tattoo on my forehead saying "Stroke" but I would have people come & rub my "head"

    Not a good idea "hey"

    Yes my family & friends did the same!!!?

    Won't your partner go with you to the docs???

    Do you any friends that can help ????

    Yes you really need to go to see your doc & hopefully get "much" needed help!!!!

    Can you please let me know what area do you live????

    Don't be terrified/afraid you will be fine believe me,!!!

    Is there any support that I can help you with ????

    Steve.

  • I live in Liverpool united kingdom.

    I guess all the dismissal has got on top of me and I believe that unless I have a price of paper to "prove" my pain no-one will believe me including my partner.

    I have my appointment on Tuesday so I hope to get somewhere but from what I've seen by following so many wonderful people on here it can be a long hard struggle.

    Thanks so much for your supportive reply and while I have never had a stroke I completely understand the tattoo reference.

    Feel like a burden to mY partner and o try not to complain as I know he's just sick of hearing of my symptoms.

    I want to thank you so much for your words of understanding. It means so much that you can understand.

    Ann-Marie

  • Hi titanaboa I agree with everyone else that you need to go see your GP. Glad you've written your symptoms down carry on doing that it will help. Tell your GP your feelings that you are worried that you won't be taken seriously at the start at least that way they know and they will understand better. As already said can your partner go with you sometimes it's easier for someone else to explain how you are because although you feel it they see it and how it affects you daily and they can possibly explain it easier than you for that reason plus they are more likely to tell them everything and possibly more than you will and also things that you don't realise aswell. Sounds daft but my late fiancé told my dr things that I hadn't realised were happening until he said. I only live down the road in Preston so if you ever need to talk just msg me. I haven't been diagnosed with fibro but I have a lot of the symptoms aswell as other medical problems. I like you haven't broached the fibro symptoms with him with him yet X X X X good luck and please let us know how you get on

  • I never expected such positive replies

    Thank you angecreed. I have asked my partner to join me but I have to apporoach it carefully because he just thinks I'm looking for anything to justify what I "believe is happening to me"

    I keep my fingers crossed that he will. Could use his support.

    I will most definitely tell everyone what went on . It's not like I want to have anything wrong with me. I simple want help to comply symptoms and am willing to give anything a shot . It will be scary laying it all out. It was hard for me to take in once I'd written it all down I had no idea how broad the symptoms where that I'd tried to make excuses for for ages. Staying upbeat and positive as I can

    Hoping I can stay awake long enough in afternoon to make it through the appointment. Lol

    Thank you all once again

  • Hi. I hope your partner will go with you as it will probably open his eyes a little because if you're anything like me you won't let on 100% what's actually going on X good luck with the dr and the offer stands if you want to talk msg me anytime X

  • Maybe it is time to look at the specialists in muscle behaviour and posture. Doctors have very little understanding if at all of muscle behaviour.

    It is worth seeing a sports therapist to see what muscles are over contracted. It is worth seeing a McTimony chiropractor to remove any micro cramps you may have. It is worth taking up the gentle exercise of t'ai chi and yoga in order to get in touch with how your muscles work.

    An Alexander Teacher can help with muscle and postural issues.

    None of the therapies are a cure all. They will help to reduce the pain and discomfort you have.

    Hope this has been helpful.

  • Hi . You need to be clear in what u tell your doctor. Write it down and speak from ur list if u need. Tell him how long you have felt down also with the stress.

    You know ur own body and where pain is . Somedays it may be worse. Or in different parts. Places you didnt have pain before.

    I have recently been diagnosed with fibro but it was i who told the doctor after every other test was coming up that i thought it could be. Sent me onto a Rhumatologist who confirmed about 7 weeks ago.

    I am in a lot of pain most days with only a few half days of feeling energy..only to drain it away and be bed ridden.

    You need to chat to ur doctor and say u want referred to the hospital.

    Post how u get on. Dont be scared.

    Alot of people are suffering just like u xx

  • Hello everyone

    Went to doctors and he was open minded

    Prescribed 50mg Tramadol and Naproxen

    I also have three physio visits and a series of blood tests.

    So maybe I will get somewhere with this route

    No results yet and the physio is making things worse but I expected that with me being new to it .

    Thanks to everyone for your support it blew me away to find so many understanding kind people

  • Thanks Betiboo69 for liking the update to my thread x

  • How are you . Are u finding the tablets helping xx

  • I'm good thanks

    I hope your are having a great day

    The tablets are helping with the pain relief and I was equally relieved to find my doctor to be understanding.

    Thanks for checking up on me I really appreciate it

    Is all well with you ?xx

  • Not too bad. Last few days ive been sore all over but managed out shopping. Then took to bed as soon as i got in and slept. Not long awake so going to have a decent dinner tonight as i skip meals which dosnt help. Xx

  • You're a battler

    It takes Alot out of us to push hard

    Well I hope you have a great slap up meal tonight and that helps

    Aches and pains can be a......well pain.

    Have a great evening I have get myself scrubbed up for my 4am wake up call for work

    Having said that I am thankful I can work.but I'll forget I've said that when I'm throwing the Alarm clock through the air

    Look after yourself

    Ann-Marie xx

  • Hi Ann Marie. I'm so glad the dr listened to you and you have finally got some medication that is helping. I had kept wondering how you'd got on but didn't know how to get in touch with you x hope the pain relief keeps working and you carry on getting some relief x take care

  • Hello again Angecreed

    Thanks for replying.I'm glad I made progress too. I'm still waiting for those elusive bloods but no news is good news or lost news!

    You're always welcome up pm me on here there's a send message tab on mY profile unless I've lost that too! Things like to disappear in my life lol :-)

    How are you doing. And how are your daughter and your furbabies? (A little scalebaby told me)

    Had a harsh day in work with pain but I'll admit I didn't mediate so slapped hands there.

    Have a fab afternoon

    Sending hugs

    Ann-Marie x

  • Hi hunny x not doing so bad today have rested most of it after a rough night with myself and my daughter. She's had the day off school and been in bed all day bless her but she's all good x furbabies are fab and yes tell your scalebabie that's what he is he asked me earlier x X X sorry you've had a rough day at work hopefully you'll be able to get some rest and get pain under control. Tell my scaley mate he needs to give you warm cuddles to help you relax. And I think you should get a furbabie but only when you can be at home so they don't get lonely and leave you little gifts while you're out x X X

  • Oh no what happened (don't tell me if you don't want to of course)

    Are you both okay. Are you both well? I hope so I really do and I'm glad to hear you're feeling a little better

    I'm taking my painkillers it should settle. Walked into mess room this morning to some meanies having a laugh about how Tramadol makes you high as a kite! Not nice they know I'm on it so I felt uncomfortable taking it in work today.) Plus these are the ones who go missing and leave me with all the work ......smiling ....keep smiling !!! :-) xx

    Oh he knows he's a scalebaby now but your scaley mate is away in the land of nod so I've benched him and brought out a sub!.Akadian is providing the cuddles today.

    Well who knows with my health the way it is I may be one day not working and fully open to the furbaby love!!!! I'll be running to you for advise though !

    Look after yourself and your daughter and keep me updated on your progress

    Lots of love

    Ann-Marie xx

  • Hi Hun x Courtney (my daughter) has brittle bones and we dared to go out for a meal yesterday and a trip through to Blackpool to see the lights. We were out for a while and she ended up in a lot of pain because of it. She's in a wheelchair full time and because of the metal plates in her legs she can end up very sore with sitting for so long. She had surgery last May and her legs not been right since. We are going through another orthopaedic specialist at the moment who has said it all needs removing but her specialist says there's nothing wrong. Both of them fantastic in their field of expertise but having conflicting opinions so a bit limbo at the moment trying to decide what's best because removing them is major surgery and will be approx 8 hrs in theatre because of the amount of work that will need to be done. And because she's in her last year at high school the timing is chronic. I've been hurting because of being out yesterday it's ridiculous what little hurts but kept topped up in morphine today so it's settled some x so sorry people at work are being that way. I'd just laugh and say yeah it's great and it's legal you're just jealous x I know that's easier said than done but don't let the buggers get you down Hun. You should never feel bad about taking medication that you need.

    Sending loads of love Hun

    Ange

  • Now I see the problem

    Jeez I know medics have their opinions but why is it never easy ?

    Aside from the pain did you enjoy your meal and the lights?

    Wow Courtney is a brave young lady to stay in school despite her troubles. You're both in a lot of pain just trying to have fun and I can understand that you both must feel disheartened. I know you didn't get the result you wanted but you are fighting to have special mother daughter time despite your health struggles.

    Is there any chance of improvement without the surgery? Considering her schooling in that respect .... and will the surgery be a guaranteed better quality of life for your young lady?

    Courtney's stuck between the devil and the deep blue sea right now and so are you with your own health!

    What would you and Courtney like to do ? It's a rough surgery I'll admit that

    Do me a a favour and send all my love and Akadian's boa cuddles to Courtney. She'll probably think I'm just a batty weirdo.....well she'll be right!!!!:-)

    I'm wishing you all the luck in the world and I'm genuinely concerned so please keep on touch if you can

    Ann-Marie xx

  • Well then news at last

    Bloods are back and I got a letter from doc says he wants me to book an appointment

    Dundunduuun! I wonder what will come of this then

    I'll update when I have this appointment

    Take care all mY friends

    Ann-Marie x

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