Confusion about Diagnosis

[Cassi0]

I think I've been diagnosed with Fibro but part of me is not sure. Ive had symptoms for 8 years now, all of which were treated separately up until now. The pain, mental health, sleep, and other symptoms was often blamed on puberty and hormones. The past few months the pain has been getting worse and a friend pointed out that it wasn't normal, and I'm 22 now, I cant be blaming stuff on puberty and hormones anymore. So I went to a GP 3 months ago. From the first appointment, my gp said they suspect fibro, and did a physical examination to rule out arthritis. I had blood tests done to rule out whatever else, and had a few more appointments to see how I was doing over those months. I had to move house so on the last appointment I had at that GP, I asked if it was an official diagnosis now (so I could start getting treated properly when I moved away), she was hesitant at first but said she'd write it down as a diagnosis in my record for me. So I moved to a new town and got signed up to a GP here (about a month ago). I finally got a phone appointment today and the doctor said in my county/area, the only diagnose it through rheumatologists/hospital doctors. They haven't got all my records through yet cause the NHS takes a while to do that, but now I'm worried I'm going to have to go through the whole diagnosis stage again, but to be honest, I'm worried they're going to tell me I don't have it/not believe me. I don't want to have fibro, but I just want to get on with my life and I can't do that until I get treated properly. I also feel guilty for some reason, I've told my close friends and family that I have this condition, what if this new doctor turns around and says I don't, and they think I was just attention seeking or over exaggerating? Apparently, that waiting list for an appointment with the rheumatologist can be up to a year, I don't know if I can wait that long, but I don't know if there's any quicker way of getting help? The support groups in my area have also stopped meeting due to COVID so I don't know who to talk to. This whole ordeal has been stressing me out, to be honest.

[Mosaic2021]

Hi my advice would be to try and scrape some money together to go private. Maybe family and friends could help you. I paid £220 for a private consultation as back in April I was referred by my doctor . Despite 2 doctors making me an urgent case (I was in a lot of pain and off work for 3 months) they still couldn’t see me until September. There was no way I could wait that long and also like you I needed to know what was wrong with me and so did my workplace. I had the private appointment in June and was diagnosed on the spot. It was a very thorough exam and I also forwarded lots of notes about all my symptoms and tests so we made the most of the time. It was money well spent as I could get more treatment and advice and put changes at work that have helped me cope.By the way my doctor put me on amytriptyline back in May even without a diagnosis and it really helped so when you see the doctor I would get them to prescribe something for you.

Good luck and be persistent . I kept badgering and ringing as I was in so much pain and no-one should have to suffer like that.

[caico]

I agree with Mosaic that scraping the money together for a private consultation is the way to go forward in these current times. Ask your GP for a private referral- I've never had a problem with this. You could also consider looking at your diet - gluten/dairy/caffeine/alcohol/restricted sugar/msg as these can be triggers for some people with fibro- like myself. Stress is a real no no with fibro too - so have a look for classes (online?) - meditation/yoga/tai chi, etc. Good luck and please take care

[Queenielot]

Hi I wet to see a private doctor in London Chris Jenner in harley street cost about 300 quid but he sorted me out turned out was on wrong tablet so if you can afford go see one and good luck

[Roo1972]

Referral to a rheumatologist is likely to help rather than hinder here. They are probably better placed to provide a diagnosis and to rule out other autoimmune conditions than your GP (although some GPs may have that level of detailed knowledge). Waiting times can be significant BUT there are medications (if this is the route you wish to go down) that can be prescribed without that formal diagnosis but based on the symptoms you present with and clear blood tests. For example I was prescribed duloxetine and then gabapentin without the 'green light' from a consultant. I chose not to go down the medication route and have been able to control my symptoms with other things such as myofascial release (from a physiotherapist), acupuncture, physio, yoga/light exercises to improve nervous system function. These may or may not work for you as I've found fibro has some commonalities but also is very particular to the person in terms of what works for them. My advice (though not a medical piece of advice) is agree to the referral, identify waiting times and see if you can go private if the wait is significant, chat to GP about what you could try whilst waiting and then explore other options beyond medication. x

[Yassytina FMA UK Volunteer]

Hello. I am glad you came to chat here with members just good to get some advice from others which paths they went down, yes private is an option , not sure if you have to have a referral from a GP 1st , I have when I’ve had to go to Nuffield private hospital. Can your new surgery contact your old surgery to get your notes ? I am sure people who know you well won’t judge you and realise you’ve been trying to get sorted so you can move forward with your life and get the right treatment. I hope you get help soon and then you will not feel so stressed in yourself , take care xx

[Kaza246]

Hi if you lay on floor or bed and get someone to press with there finger on the tender areas such as front of your shoulder bone area and it hurts you probably have got fibro and if your muscles feel tight and ya body feels like it's all inflamed that's what I felt like plus all other things that go with fibro brain fog no concentration and all others things aswell look on Internet symptoms of fibro I did and I have all the signs of fibro took me about 15 yrs before I was told I had it hope you get sorted

[Kryton]

Hi I’m just catching up on posts - I can say my GP gave me the diagnosis- I’ve not seen a specialist ever. Should I ? . it’s in my notes and I thought that would be sufficient- (it’s me that has difficulty accepting it) my GP prescribes me duloxatine I don’t think it helpS the pain at all but I don’t care as much 🤣and amitriptyline to help with sleep (i only take it if I’m desperate for sleep) I take co codamol parcetamol and ibruprofen to try to ease the pain.

In short I guess I’m saying the only diagnosis I have is from my Dr.

B.xx

[Cassi0]

Thank you, everyone, for your replies - It's been really helpful. I'm definitely going to look into getting a private appointment now so I'll see how that goes.

[Cassi0]

Just thought I'd update, and thank you all again.I went privately recently and pretty much instantly got the diagnosis confirmed. It's a bit overwhelming but I'm relieved to have an answer at least.