After years of all sorts of health problems and countless wasted trips to the doctors who've said "its her age" or "she'll grow out of it" my 18 year old daughter is at her wits end. As I was talking to a new friend and told her about my daughter, her immediate response was "sounds like she's got fibromyalgia like me" but how do I approach the GP on the subject? When someone else suggested it sounded like chronic fatigue I mentioned this and he said there's lots if things it could be and we have to rule them out first and more or less brushed it aside. I know there's no treatment, but to have a diagnosis would be very helpful when she has to have time off work due to being in so much pain, and as it is, she's only working part time as she's so exhausted all the time. I think everything else has been rued out and I think fibro fits in with all her symptoms - all the posts I've read could be her writing them! Any ideas would be very welcome.
Many thanks from a very worried Mum!
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caz1812
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Try this method - Firstly write to your GP listing your concerns and asking for a referral to a rheumatologist. This letter will form part of your daughter's notes and won't be ignored or not noted on her records. Then follow it up with a telephone consultation and request the referral again. During the telephone consult again list your concerns. This worked for me, as I had been asking verbally for a referral to the fibro clinic and the doctor kept resisting.
If this doesn't work - change doctors or if you can afford it perhaps seek an appointment with a private consultant.
It really is an uphill slog for a diagnosis and please realise that everything else has to be excluded before a fibro diagnosis is given and some of us wait many years before finally the fibro label is pinned on us.
my diagnosis came out of the blue but it was a rheumatologist who diagnosed it.I thought he was mad but he is the professional .He did all sorts of tests which a gp cannot.
Hi Caz. I'm so sorry your daughter is going through this, I really can sympathize with her.
My pain, fatigue, etc, started in my teen years. I too was told it was my age and that I would "grow out of" my knee pains. My symptoms got worse and worse and my biggest problem according to the GP was my IBS (it seems to accompany Fibro a lot of the time, especially in women) so I was referred (after three months of constant diarrhoea) to Gastroenterology at the age of 23.
After they couldn't figure that out for five years and many tests later I wrote all of my symptoms down for the consultant including all the muscular skeletal, sleep, bruising problems and asked for it to be kept in my file. I got my records from the GP and wrote all the dates I'd visited with any of these issues to show how far back and how long I had been suffering. I was finally passed on to the Rheumatology department (sadly COVID hit just then though and the world shut down 🤦♀️)
I was diagnosed with Fibromyalgia in January this year, at the age of 30. I'm not saying this is the right way to go about it at all, but it seemed like being on record at the hospital, even to the wrong department, was a bit of a gateway to Rheumatology for me. If I'd have just kept going to my GP I know he would have kept ignoring me because I was "too young".
You're never too young to know how you feel and your daughter deserves answers as to why she's in pain. I hope with my whole heart you both get some answers. I can only imagine how heartbreaking it is as a mother to watch her suffer, something my own mother has also done for many years too.
Hi Caz, I can absolutely relate as another worried mum 😔. I got fibro diagnosis about 2 years ago after not feeling well for a long time. I have a 22 yr old who is showing fibro symptoms. We have a long road ahead. At the mo her vit D is low so we are working to get that up and then it's back to the GP for the next step. Looking back my mum also suffered the same symptoms. She was always unwell my whole life. I feel sad she suffered not knowing what was going on. Best of luck with your journey. Be persisted. I do find private helps but it's pricey X
A very helpful reply from Dinkie, it cannot be ignored and differently seek another doctor if your hitting a brick wall, some very helpful replies from members, I wish your daughter the very best in going forward xx
Keep a diary of symptoms and don't give up. I have been tired (now exhausted) most of my life. Only 2 years ago was I tested by a Rheumatologist but all my bloods were negative bar DSDNA. Because I had a list of symptoms and listed my past history I was diagnosed with Sjogrens Syndrome, with the positive DSDNA I was then diagnosed with Lupus and just recently also diagnosed with Fibromyalgia. This may be a journey of long or short duration for your daughter but don't give up. Just be aware that for any autoimmune conditions, negative bloods are common. It is worth keep fighting as autoimmune, whatever it is can often be medicated which helps stop internal organ damage but the old dilemma comes in of being diagnosed to get the medication! Anyway if you can get to a Rheumatologist, private (about £200 for an hour) or nhs, a lot of us take a private trip firstly to an autoimmune specialist get the bloods done as they take a more comprehensive set of bloods than the GP explain the symptoms and see what happens. A good autoimmune specialist can diagnose from symptoms not just bloodwork. If she's tired all the time, her body is fighting something, you just have to find out what that something is. I liken the exhaustion I feel every day to living many hours a day like its 2am in the morning. I do hope you find answers soon, I fully understand your struggle, mine was 30 years and I lost a kidney and had a brain hemorrhage before finding out what was wrong.
I can understand your worries; it took 20 years for me to get diagnosed, but it is usually quicker now. Ask your Doctor to refer her to a Rheumatologist, they seem to be the most likely for a relatively speedy diagnosis.
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