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diagnosois

lala61 profile image
7 Replies

hi, im new here!

i have been convinced for many months now that i have fibro. i had back surgery a year ago which left me with nerve pain in both legs requiring further surgery to decompress these nerves. i have long since believed that my pain was all related to this . however a few people have suggested to me that i may have fibro, including my reflexologist, as i have other symptoms consistent with the condition:

severe morning leg stiffness

constant leg pain

difficulty sleeping

ibs type problems

problems with memory and concentration

anxiety

i was also diagnosed with angina 13 months ago which isnt stable and this adds to my anxiety

i am just a tad wary of asking my GP about fibro as i sort of feel like i live there at the moment and im sure they hate patients who present with self diagnosis.

do any of you have any help or info regarding how to get a diagnosis?

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lala61
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7 Replies
Sniffer8 profile image
Sniffer8

Hi lala61

I have a progressive spinal condition although it is not amenable to surgery. I attributed most of my health concerns to this but that did not explain upper body pain and unremitting fatigue. I self diagnosed in that I researched for answers and finally put my thoughts to my GP. He immediately diagnosed me as Fibro and referred me to Rheumatology where this was eventually upheld.

I don't think you should doubt yourself, it's ok to act upon your concerns. This may require tenacity but you have every right to question and challenge.

Ladygelf profile image
Ladygelf

Hi lala61,

I've had depression for many years and several GPs have attributed most of my symptoms to depression. I knew they were not and decided to investigate for myself, by researching different conditions according to the symptoms I had.

I was fairly convinced I had Fibro and after visiting forums like this and talking to other fibro suffers I gained the courage to mention fibromyalgia to my GP. She wasn't very receptive, and insisted I had further blood tests, which of course all came back, within the normal range. Except my Vit D levels were very low. I took Vit D supplements and my levels became normal again. But the pain and fatigue still remaind. Three appointments later, I asked her again if I could be referred to a Rhuematologist, because if everything is normal, why was I in so much pain, could it be Fibro?. She eventualy agreed to the referral but said - we don't want to label you with Fibromyalgia.

Well I'm glad I insisted - because I got the diagnosis in September.

Many fibro suffers have been made to feel as if they are bothering their GP because they have to keep going back for answers.

Please go back - or change your GP - You obviously know your own body and you deserve to get an answer.

Good luck - 😊

B2WC profile image
B2WC

Hi There, think about it and read what the symptom like of fm if you feel that how you feel that explain it to your GP she/he should be happy that you are proactive about your health on the other hand if it is easy for your gp to digest FM like this: when you wake up in the morning is just like your body just being crushed by a truck....all over is pain..you hardly able to move..pain all over as the day goes by it gets easier than starting at 6pm getting aching again...that carry on throughout your life.unless you brave and discipline enough to have light exercise change your life style and dieting

My GP sent me to a neurologist who to my GPS surprise diagnosed fibromyalgia.

unfortunately my GP believed that fibro only caused pain. whenever i tried talking to him about it, the fog would come down and id lose track of what i was saying.

So i printed out a list of fibro symptoms and circled all those that i had, along with notes to say just how each one affected me.

I took it to the surgery and handed it in at reception. It is now part of my notes as well as the information that i am a member of this site.

You could do the same and say that you would like to be refered to a Rhumatologist, just to be sure. :)

All the best

sue

Fibrofoggiest profile image
Fibrofoggiest

Hi lala (love the name, I should have thought of that one 😉)

Firstly, welcome to our very friendly and inclusive forum 😊 I personally think it is one of the best there is and we all look out for each other through thick and thin.

Could I point you in the direction of our mother site fmauk.org where you will find masses of information which I think you will find very interesting. It also give you lists of support groups in your area and doctors/consultants who are particularly "fibro friendly" which may help.

I understand what you say about being frightened to bring up the subject of fibro with your GP, but I also think it is something you should do, and I agree with the advice which Mayrose has given you, also you could just ask for him to do a trigger point test, if he asks why then be honest, my GP says he never minds if someone has done some investigation themselves, what he's not keen on is being told "this is what I have", so if you phrase it correctly along the lines of , "I'm wondering if this might be what is going on for me, what do you think" putting the ball straight back into his court, then I think you will find the reaction isn't as negative as you fear!! Well at least that's what I would do and what I hope would be the response, but as they say, nothing ventured, nothing gained. 👍🏻

You will find that a fair few of us like to have some fun to take our minds off pain and what we are going through, and some of us post "fun" posts as there is a lot of evidence that proves laughter releases feel good endorphins, which have to be a good thing, so do feel free to join in with those if it's your cup of tea, but there's no obligation to 😊

I very much look forward to getting to know you better around the forum and hope that you can speak to your GP and find out what is really going on for you, and also I'm sending lots of positive soothing vibes 😀😀

Foggy x

Redhots7 profile image
Redhots7

You did not mention the critical 11-13 tender/ trigger points that are usually required for Fibro diagnosis . Fibro symptoms include a large list that also are a part of other syndromes, therefore, the trigger points are critical . Thinking Fibro may not be something you have to deal with 😘

TheAuthor profile image
TheAuthor

Hi lala61

Welcome to the forum and it is wonderful to make your acquaintance. I am so sorry to read that you are suffering and struggling so much and I sincerely hope that you can find some resolution and relief to your issues.

As the other respondents have suggested a referral to a Rheumatologist or neurologist could prove to be a great help for you., and it is something that it may be good to discuss with your GP. I can see that our Foggy has given you the link to our mother site, Fibromyalgia Action UK which is well worth checking out for Fibro information. I want to genuinely and sincerely wish you all the best of luck.

All my hopes and dreams for you

Ken

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