I’m new here so thought I’d quickly introduce. I’m Becky, 26 and for the last 2 years I have suffered ongoing symptoms which support the likelihood of fibromyalgia or chronic fatigue syndrome.
I’ve been tossed around from doctor to doctor, irrelevant referrals and next to no help at all. It’s taken years but I am finally on Gabapentin which has helped with my back pain. I’ve requested a trial of muscle relaxants, body imaging tests to be done and god knows what else! However, the doctors always end up dismissing this. It has been 2 years and I’ve not had any tests such as MRI’s, CT, etc. My last appointment was with Rheumatology and I was told it was just age related, I should try Tai-Chi and there was nothing more they could do.
I am fighting for a diagnosis and a second opinion but I was hoping some of you lovely people may have any tips? I feel like my GP dismisses me too early due to age, weight etc but my whole identity has changed rapidly in the last 2 years, I just want to be heard.
Thankyou x
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TabSim12
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I'm sorry to here this about the doctors. I would keep a diary of all the symtoms of what you can. But I would keep asking for another opinion intill you get the answer.
My daughter is also twenty six. She as been having problems since the age of twenty and was only diagnosed with fibromyalgia and or chronic pain syndrome earlier this year. For the first two years my daughter was ignored then I went with her and due to her mother's numerous problems she was referred to a rheumatologist.Is there anything in your family history which could be genetic especially arthritis. This could open doors for scans etc. For example the rheumatologist was very dismissive when I suggested my daughter could have psoriatic arthritis. "Too young". Then I said her mother was diagnosed at 26 and both her Aunties in their early twenties. He then said Bloods were negative to which I replied her mother's bloods were also negative etc.
To cut a long story short she then had a MRI of her back which showed a prolapsed disc and swelling to nerve canals which explained the back pain but not the pain in the other areas of her body and the constant fatigue etc. Happily this gave us more ammunition to ask for other scans. Which showed nothing but allowed a diagnosis of fibromyalgia.
My niece is twenty eight and after two visits to the GP and getting nowhere just goes to A&E. It appears going to A&E speeds the process up as it only took her 18 months to get diagnosed.
All I can recommend is to write to your GP with your requests. Once in writing it forms part of your notes, if you just request it in conversation it sometimes gets missed off your notes. Follow up a week after sending the letter with a telephone consult. I had to use this way to get a referral to the fibro clinic at Guys and St Thomas's after two years of verbal requests. During the telephone consult I had a meltdown which wasn't intentional but hey presto one referral😊. Worth a try when all else fails.
Hello, @welcome, I am sorry you have been going through all of this, normally the Rheumatologist will give you an answer ,but if you feel like you want a 2nd opinion I would still go for it, it took me awhile too get a diagnosis of CFS as people didn’t listen but eventually a good doctor did. I’ve even known some people too change surgeries and hopefully get a doctor who is in tune with what your saying and not dismissive, im guessing they have given you recent blood tests that would rule other anything else going on ? Feel free too read the posts here as lots of helpful information and chat going on xx
It's soul destroying, I know! My first symptom was numbness in my hands wakening me during the night. I was told I was lying on them, carrying heavy bags etc .... eh nope! 😫
Then the arms joined the party, feet & legs were feeling a bit left out so they crashed the party too shortly followed by the rest!
Get yourself a good sized diary and record everything, absolutely everything. Where you're having pain, type of pain, severity of pain, how long it lasts. What foods you ate, drank. Any appointments, blood tests etc ... Try to keep it factual and to the point, you'll need it for future reference at appointments.
My first appointment was rheumatology and like yourself I was pretty much dismissed. Neurology appointment was like a memory test, so many questions!
He told me to give him a full history, factual, timescales, no waffle! How I did it I'll never know but he actually told me I gave an excellent history 😳
First diagnosis - Peripheral Neuropathy. I burst into tears in the car, somebody actually believed me. I hadn't a clue what it was but I wasn't a hypochondriac after all.
We know our own bodies and We know when something is going wrong. The problem is We usually know it sometimes years before they are able to See it and Diagnose it.
Totally appreciate how difficult it must be for them as there are so many things it could be but that feeling of being dismissed, of not being believed is just awful.
Good morning TabSim12 and welcome to our lovely supportive group which unfortunately none of us wish we had to belong to. Sadly the reality for most of us is that it has taken years for a diagnosis in many many cases. Mine personally was 20 years and some probably even longer. Even when if you do get a diagnosis of fibromyalgia from a rheumatologist it is the same outcome, there is nothing they can do. I do not wish to sound all doom and gloom but this is what the outcome is, certainly was in my case although obviously I m not speaking for everyone. The hope is that you manage to find a gp who is at least willing to listen to you and be supportive. Trying to find meds that will help with your pain is trial and error. Belonging to a supportive group like this can be truly beneficial and you will find that others can offer advice from their experiences and often give you answers to questions you will have which are invaluable 🤗🎄x
It is a very long slog to be heard. I started the medical trail in my twenties, got diagnosed with Fibromyalgia in my fifties and Ankylosing Spondylitis in my mid sixties. I had debilitating symptoms starting when I was about 22. You must become a noisy nuisance to get anyone to listen. Good luck x
A symptoms diary really helped my GP understand what was going on. I recorded brain fog, pain and where it was and any other symptoms (stomach, headaches, palpitations etc). Over time if formed a really interesting picture.
hello TabSim Welcome, I’ve had fibromyalgia for many years now and honestly I do not think the people in the medical organisations understand fibromyalgia or don’t know how to help us sufferers it needs more research so that it can be treated. More and more people are getting this dreadfully painful condition and the pain is relentless if you get some kind of relief then it’s sure to be back with a vengeance. I’ve been to rheumatology and physio sessions all have had little if no effect as the pain comes back and turns me into an invalid making me breathless as the pain is all consuming I rest and my body feels like it has dynamite all over it exploding. It’s a condition I have learnt to live with and when I cannot walk I cancel everything , people who know me , true genuine friends will understand others don’t and these people are not worth knowing. I send you my very best wishes and truly hope there is a cure for all of us sufferers soon.x
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