Getting a diagnosis

[Maddie21]

Hello,

How long has it taken people to get a diagnosis?

I am really struggling at the moment, I am struggling at work and with my personal life. I can't even go on a date without things getting in the way.

[Horsesgalore]

It took about 18 months for me, I saw one rheumatologist twice who said it was back pain, despite me having widespread pain, my GP then rereferred me and queried fibro and I saw a rheumatologist who specialises in fibro and she diagnosed me. I am now under the care of my GP, he is ok, doesn't know a lot about fibro, but he listens and is happy to be led by me. The rheumatologist who diagnosed me also referred me to hydrotherapy which was great and I am waiting for a place on the pain management course at St Thomas in London. Good luck getting some answers.

[Maddie21 in reply to Horsesgalore]

Thank you, I have been to Neurology, Rheumatology and I'm currently at physio as I also have misalignment. I have been trying to get answers for about 3 years at least and I just feel like I'm getting no where. Thank you for getting back to me.

[Hidden in reply to Maddie21]

Wish I saw this first, my bad. Ok, see a holistic doctor. That’s who actually diagnosed me then the rheumatologist agreed. He took a long time and even discussed wonderful options. The issue is he doesn’t take my insurance, so I couldn’t continue to see him. But, he was like a breath of fresh air! Please, don’t get discouraged!

[Maddie21 in reply to Hidden]

I live in the UK and can't find one here sorry

[Hidden in reply to Maddie21]

Good luck, sweetie. I hope someone will finally be able to help. I had to go to so many specialists and they all kept passing the buck. Don’t give up!Sending good vibes and gentle 🤗

[Hidden]

Fibromyalgia had it 15 years Took 6 years to get diegnosis that only me some people get it Quicker

[Hidden]

13 yrs 😭😭😭 don’t be discouraged, tho! My primary care physician failed me and kept saying I was fine. My advice is to see a rheumatologist first. And if you feel like you aren’t being heard or you know they are wrong...drop them and get a second opinion! It took me so long bc I kept getting discouraged. You know your body better than anyone else! Make sure you find someone who listens and takes the time to examine you thoroughly. Good luck! 💜

[Hidden]

can I ask how old you are Maddie21 ? we,ve all been down this road- how many hours do you work and what do you do? Have you thought about reducing your hours with the support of medcis who you are under? You could then try for ESA to support your income/

As for diagnosis-is it fibro you are waiting to hear about? Blood tests ct,s xrays dont give the diagnosis its the consultants who decide from negative results and your input that make this decision. when was you assessed?

[Maddie21 in reply to Hidden]

I am 21, I work in Admin 37hrs a week (a reduction in hrs would mean less money and I need the money). I am under NHS GP's.

As I don't have a name for what is going on ESA won't touch me.

I am waiting just for any diagnosis at the moment, I think it might be fibro as alot of my symptoms match and others who know people with it say it looks like I may have it.

I have had lots of blood tests, X-Rays and a head CT to no avail.

Doctors just seem to have stopped listening to me after going to physio.

[Dinkie]

Hi Maddie, Probably not what you want to hear but from 1987 to 2 years ago. To be honest having a label doesn't exactly do anything - you are in exactly the same position and exactly the same person with or without the label. A fibro diagnosis is given when all other avenues have been explored and been excluded. I know it is very frustrating but the wheels of the nhs grind incredibly slowly. I am still in the same position having to fund chiropractor and hypnotherapist when I can. Once I was diagnosed I was actually worse off because the rheumatologist just discharged me back to the GP as apparently our local teaching hospital doesn't treat fibro. If you are finding work difficult you can ask for a reasonable adjustments meeting to discuss what could be put in place to make it easier for you to stay in work. I had such a meeting and although I didn't want it in the first place it was helpful to have agreed a reduction in hours, a carparking space nearer to my place of work, modified uniform, grab rails, different chair. All fairly minor for the company but make an enormous difference to me.

As you know fibro is different for all of us so with or without the label you could try to see what works for you. I do not eat processed foods or anything with refined sugars. If I stray from this then I pay for it. I take various supplements too including vit D. Have you had your vit D levels checked? as low vit D can give muscles aches and pains. I also use a produce called biofreeze which my chiropractor recommended. Epsom salts in the bath help too. Case of trial and error. I am sure others will be along to give their help and advice too. Good luck

[Maddie21 in reply to Dinkie]

I have had my vitamin D checked and they said that it was fine.

[Pilipala18]

Hi Maddie,

I was diagnosed last week. It’s taken 8 months which seems to be a lot quicker than most people. I did go to see a rheumatologist privately the first time and I’ve seen him twice more on NHS. Think I might have been diagnosed quicker but the appointments for my MRI and CT scan got lost in the system so had to order them again. I agree with Red Maple about the double edged sword. At least it has stopped everyone I know (without a medical background) trying to diagnose me. Best diagnoses I had though was a quorn allergy and gas leak. 😂😂😂

Hope you manage to get a diagnosis soon.

Cath 😀

[mr-jingles]

7 years for me