Fibromyalgia

[Louiseparker]

How to get a diagnosis as my doctor keeps sending me away saying I’m too young to be unwell like this I’m 40 and my mental health is affecting me to a point I can’t function. Anyone who can give me advice I would be great full for.

[Hazel_Angelstar Administrator FMA UK Staff]

Hi and a warm welcome to our community. Here you will find information support friendship and laughter too. You can find general information on fibromyalgia at our main website fmauk.org

Fibromyalgia is diagnosed by excluding other possible conditions such as arthritis etc , and taking into account your medical history. Has your gp arranged any blood tests, x rays etc to rule out conditions?

Another suggestion would be to keep a pain/symptom diary for a week or two - which will help give your gp a bigger picture of what you are experiencing.

You may find our patient booklets useful - they can be downloaded as a pdf at fmauk.org/publications and you can also order a printed copy (however there is a delay on them being sent out due to office staff working remotely at present)

Is there another doctor you can speak to in the surgery - or last resort may involve changing surgeries if you are getting absolutely nowhere with current GP.

[Louiseparker in reply to Hazel_Angelstar]

Thank you For the advice and welcoming me here it’s been very helpful and the people are lovely it’s nice to know I’m not alone with this that someone understands what I’m going through 🙂

[Dinkie]

Hi Louise, may I suggest you put a request for a referral to a rheumatologist in writing to your GP then follow it up with a telephone consult. That way your request is part of your medical record. Just asking verbally will not guarantee the GP will make it part of his notes! I learned the hard way and always do any request this way now to avoid getting to the meltdown stage.Keeping a diary will help both GP and consultant understand what is going on. I know I used to forget everything the moment I walked through the consulting room door.

[Louiseparker in reply to Dinkie]

Thank you so much at times Ive felt like I’m going crazy as no one understands. I’m definitely going to ask him to refer me I actually have an appointment today so fingers crossed he listens this time round thanks again for the advice it’s nice to know I’m not alone in this and I’m not going crazy x

[Hidden]

All you can do is keep fighting. Insist on seeing pain specialist neurologist rheumatologist. If they don’t diagnose you say you want to see someone else. It can take years. I don’t know how old you are but it usually starts after the age of 30 but there’s always exceptions. Rule everything else out.

[Louiseparker in reply to Hidden]

It started in my late 30s I’m now 40 and still not getting anywhere fingers crossed I can try all the advice I've been given on here as it’s been really hard to get my family to understand as I look healthy to them so I see why do doctor keeps fobbing me off x

[BottomleyPotts50]

Hi Louise don’t give up. It took 2-3 years for me to get my diagnosis and it was when I got my blood work back which showed elevated inflammation markers and then I got referral to rheumatologist, who diagnosed me. Keep a diary so you have it in writing how you feel daily. Hope you get somewhere. Keep smiling as when you feel crap on a daily basis it can affect your mental health x Wishing you well.

[Louiseparker in reply to BottomleyPotts50]

Thank you I have an appointment today and will be asking for bloods and to be referred I just can’t believe how many people are actually suffering and it takes so long to be diagnosed it’s has took it out on my mental health memory has gone to pot I’m literally all over the place, iev been put on sertraline for low mood but isn’t really helping. Thanks for your advice fingers crossed I get somewhere today x

[Fra22-57]

I would ask to see another doctor

[Yassytina FMA UK Volunteer]

Hello there, I would differently follow the advice already given by members, I actually changed doctors which was the best move I ever made. Fibromaylia can effect any age unfortunately so this doctor needs to open his ears. Totally understand your mental well being is being affected as when we constantly feel unwell we need to get answers, I found that way you can get the right medical help or meds that help us cope and understand why our body is behaving the way it is. Good luck and don’t be fobbed off, hopefully you will get a break through soon xx

[Louiseparker in reply to Yassytina]

Hi thanks I have an appointment today so hopefully I get somewhere as it’s taking it out of me pain killers don’t work no more and doctor told me to lay of them I’m pushing him today Iev got it all written down so I don’t forget hopefully I get somewhere today. Thanks again really appreciate the advice x

[PurpleGlitch]

Hi new member recently diagnosed with Fibromyalgia here... after extensive tests my GP stated that it must be Fibromyalgia that I have as everything else has been ruled out, I have majority of the signs and symptoms and have had fairly frequent period of times off from work, with; fatigue, headaches, brain-fog and lots of aches and pains. It has been an exhausting process and I am sure I can only slightly understand what you are gong through and being sent away...due to age..must be very frustrating.

Age seems to be an unfortunate annoying reason for no diagnosis.

I wish you well and hope you get answers as soon as possible

...btw... I've just been diagnosed at the age of 27... so I am not sure how they can continue to use age as an excuse!

[Louiseparker in reply to PurpleGlitch]

Hi, yeah it’s mean mentally draining I’m in pain most days headaches vertigo memory is getting worse so I’m hoping today’s doc appointment I can get referred as it’s so frustrating get fobbed of all the time and it’s hard remembering what I need to tell the doctor as I get so worked up about the appointment I forget it all so this time Ive wrote it all down I need to get to the bottom of this.. thank you again as you have just made it concrete age has nothing to do with it. 🙂 hope your well too hun xx

[Dizzytwo Moderator]

Hi there, age is no barrier to getting fibro. Children have been known to suffer with it. I myself was in my early 20s when I became ill I'm now 64 🙄😂 But it did take about 10ys before I got diagnosed. But that was back In the day. You may not believe it but things have moved on and most diagnoses are speedier these days.

But even if Doctors do not think someone has fibro they really should rule other things out just so they don't miss anything that's treatable .

[m1keym005e]

Hi Louise sorry to hear your not well. It sounds to me like you need to change your Doctor. Most are helpful and sympathetic, however there are some people ( Doctors included) that just stubbornly wont believe that you have a problem. Especially if they cant see it.

[BlueyGreen58]

Hiya, sorry to hear this but l totally understand as l had a Dr like that. I stopped seeing him and went to see a lady Dr and my 1st time seeing her,, crying and explaining about all what was going on with my body,,,, straight away she told me l sounded like l had Fibromyalgia and l hadn't even heard about it. I was then sent to a Rhumatoligist and it was confirmed.So my advice is dont see any old male Drs,,,, as they dont believe in it,,, and try to see a younger lady Dr as they have been taught all about it,, l think.

Also lm on a Fibromyalgia site on Facebook and one day l asked did l only have fibromyalgia because l was old (54)and fat?

I got 268 comments from ladies telling me stuff like they were only 22,,23,,24,etc,,,,,they were size 8,,10,,12,,etc,,, ladies telling me they only weighed 7,,8,,9,,10,stone etc and one older lady like me told me she had lost 10 STONE!! WOW,,,, But that it hadnt made her pains disappear,,,, she was still in a lot of pain. So,,,, l hope you can see that it does start off even in young skinny girls,,,

So your age, 40 is definitely an age you could have it. Mine started when l was about 38,,,im 58 now.

Tell ya Dr to get lost.. 🤣

And move to a new one.

Good luck. 🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻🤞🏻

Hope you find a nice new helpful Dr. X

[desquinn Partner Volunteer FMAUK Trustee in reply to BlueyGreen58]

Just wanted to add that a younger doctor is possibly going to be a better bet than an older one on average. But, different doctors will be different and gender of the doctor will not play a part IMO.

Also fibro affects all types of people be they fit or overweight, be they male or female, old or young. But, having less weight or a healthy weight to be more accurate will be better for you in general health than being over your BMI.

[skit]

Hi Lousie Welcome to the forum. I expect the appointment was satisfactory now you have joined us on the forum.

I wanted to add that sometimes Fibro is inherited (boohoo) I discovered this a bit late. I understood my mother had the pre word fibrositis way back in the 1960s. I never realised

[Midori]

Hi and welcome.

All of us here have Fibro, and many of us have been told things like, 'you're too young', or' it's all in your mind', or 'you're depressed, here, take these pills', basically, go away.

If you think your GP is cruising down to retirement, see another, and preferably younger doctor. Change surgeries if you have to. The younger GPs seem to be more up to date with things and more inclined to do their research.

I'm not slagging off GPs in general; Just the ones who are pretty much burned out, or can't be bothered to keep up with the latest research. As a retired nurse I know that many older doctors (not all), become disenchanted and get depressed themselves, then fall into the trap of making assumptions about the patient in front of them.

The Automatic assumption of depression is the one that makes me angriest; I'm not depressed because I'm depressed, I'm depressed because I am in a lot of pain.

There is research which says that many of us, especially if our Fibro is partly the result of previous abuse, or we have PTSD, have Adrenaline glands which are always ON, and at the slightest reason (even a phone ringing close to you) will pump out the adrenaline, causing you to jump, and get prepared for fight or flight. I have this, due to an abusive husband, who, fortunately for me, committed suicide. This happened 30 years ago, and even now, I have an exaggerated startle reaction, if I don't hear someone come in the room. A bout of Shingles kicked the Fibro into high gear. Shingles can give you longlasting nerve pain.

I was fortunate to have two small children, who managed to keep me relatively sane. My daughter is married and I have a grandson, and my son has given up his chances to be my carer, (for less than £2 an hour!) This is for 35 hours a week, but he is on duty 24/7, which brings it down to pennies per hour!

I'm going to suggest you look up The Spoon Theory, its a great way to educate family and friends about Fibro and its effects on us.

When you are trying to get though your day, work in short steps, then rest for a few minutes, then work again, rest and repeat. It works better than trying to do it all at once. If you drive, try to keep trips short, and rest between, as you will probably find you are stiff after about 20 minutes in the car.

Well, I seem to have written quite a screed. I hope some of it is useful.

Cheers, Midori

[Chloe_x]

Hi I just wanted to say I'm so sorry to hear about your struggle. I was a child when I got fibro (I'm 19 now) and faced the same discrimination, being told I was too young and too skinny to have it, that it was an "old woman's" condition (to which I responded that I felt like an old woman, lol!). I would definitely ask for a different doctor if you can, or ask for a referral to a specialist.

I was eventually diagnosed by a rheumatologist if I remember correctly, but a wonderful female doctor was the first person who listened to me when I said I thought I had it. Honestly it seems to be the luck of the draw - if there's a way to bounce around to different doctors that may be good (comes with it's own problems, but at least you won't be stuck with one bad one).

Good luck and god bless x

[Jonn9]

Hi Louise I had same experience as yourself and after more than 2 years my mental health was deteriating badly. Cut a long story short....I changed g.p and today I have compassionate and understanding female g.p who told me on first appointment it looks like you have fibromyalgia. Take care

[Louiseparker]

I would like to thank everyone on here for the the advice it’s been really good to know I’m not alone. I have since been told I have an under active thyroid and low vitamin d not sure what that all means yet as I need to see my doctor as I was told all this over the phone.. but I want to thank you all so much for the advice really appreciate it xx

[CopingwithEx]

Hi I’m 21 and been diagnosed with fibromyalgia. Defo see a new doctor x