Getting diagnosed

[Cavaliermum]

How many off you found it hard to get diagnosed. I've suffered for about 3 years now and have all the symptoms of fibro but Dr's keep ignoring me and say my weight is the problem. I feel so poorly most days.

[Collie-Dog]

When I was diagnosed, it was almost a relief, as all my symptoms now had a reason for being there, if you know what I mean? Very difficult to have the diagnosis confirmed, trying acupuncture now. 'Hit me' when I realised this condition is 'managed', not cured!!!

[Dinkie]

Almost impossible to get a diagnosis in my case - from symptoms pre 1987 when I finally went to doctor to two years ago for diagnosis, nearly 30 years. It's not an easy ride. Athough some will get the diagnosis much faster. Everything else is ruled out before fibro is diagnosed if you can get that golden ticket for the referral to the rheumatology department. It's a case of not giving up and keep pestering for answers. Usually it starts with blood test - worth checking vit D levels as low vit D causes muscle pain. I lost 4 stone post diagnosis in the hope that some of the symptoms would be easier to deal with and to be honest it has made a difference but I put it down to eating a processed food free/refined sugar free diet not the actual weight losss. Fibro is individual to all of us so what works for one may not work for another. Symptoms one person suffers another may never have to endure. The label fibro didn't make any difference to me, it was just a name for the way I was feeling. I was still the same person with the same aches and pains. All I can suggest is either change GP or ask for a referral to the rheumatology department. It has taken me a couple of years to get the referral to Guys Fibro Clinic and my appointment has just arrived only to be cancelled this week. So even with the diagnosis we are still hanging around waiting for appointments! Good luck in your quest for answers.

[Treewade]

Because it's only diagnosed by ruling everything else out it seems to take forever for a diagnosis but like with the doctor blaming your weight no matter what you go to docs with after you get diagnosed fibro is always the cause. Honest your leg could fall off and you go in waving it it would be fibro related, enjoy the investigations I hope they are investigating and don't be fobbed off if it's fibro ok but if it's not you want to know what it is. Lupus ms Lyme desease as well as others have similar Symptoms that's why they have to eliminate don't think there's a sure fired test for fibro yet. Good luck keep booking those appointments till he/she listens xxxxxxx

[Hidden]

I think I must have got a diagnosis quite quickly , though it didn't seem it at the time.

Went to GP with dizziness, shortness of breath and fatigue. The shortness of breath was the worst symptom and was fire at the time. He did order and an ECG and blood tests and said everything was 'normal'. Said he would refer me to a Respiratory clinic. In the meantime I did private blood tests which showed low B12, tried patches and tablets, no improvement so self injected B12. Bingo, improvement in balance, tinnitus disappeared, hadn't realised my finger tips were so numb, breathlessness improved greatly. I almost cancelled the respiratory appointment but glad I didn't. Dr was very thorough, CT scan, breathing tests, I think I counted over 40 things tested in my blood and he queried connective tissue disease so referred me to a rheumatologist. I don't think the GP would ever have got around to that, his parting shot was ' I expect it's post viral fatigue'

Only thing I can suggest is picking apart your symptoms in the hope that the GP will refer you to a specialist. They seem more keen to refer you on if they can't diagnose.

I did see a rheumatologist privately as I was concerned I might have lupus. It was £220, exactly same examination and questions I later got from the NHS Rheumy but got the appointment in a week, as opposed to 8 month wait for NHS.

[penny]

I’ve never had a diagnosis of fibromyalgia, although I’m sure I have it because of the overall pain, but it took 30 years to diagnose my hypothyroidism, a private diagnosis which my GP doesn’t accept.

[Cavaliermum in reply to penny]

That's how I feel. Dr insists there's nothing wrong but I in constant pain and discomfort. Can't all be weight related.

[Al10]

Mine took 30+ years. Gotta rule everything out first. Your GP is bound to get hung up on something. For me it was my bonce. For you it is weight. There is no effective treatment or cure so just keep tackling the symptoms. Natural treatments can help. Probiotics for tum and mood, non sprayed foods, magnesium, turmeric, B12, D3, K2, you know the stuff. Look it up.

Trying to keep active will help. Even if it is just pottering about, rather than sitting, lying, snoozing etc. We must move else we get stiff and achy. Losing weight is tricky if you can't exercise. Doubly so if you take meds that affect your weight. Obviously excess weight can make moving around harder but that shouldn't be a stick your GP uses to beat you with.

I'm skinny and I hurt too. Being thin wont cure fibro. In fact, get too thin and there is no padding to protect your bod from pain at all. I get a bit cross that DRs are so FAT fixated. When I said I'm too skinny I need help, (and I really did!) my GP said I was lucky. I wasn't lucky, I was emaciated and couldn't even lie down without pain. Fibros are desperate for understanding but it still looks like this is a long way away yet. Keep reading and researching, you know you best and can maybe be your best doctor. Obviously dont go swallowing stuff without fully researching, you don't want to make things worse by poisoning yourself!

[Cavaliermum]

Thanks for the reply. It's such a horrible thing. Cant remember feeling well.