fybro diagnosis

[Lorilal]

I have advanced osteoarthritis on hands elbows and wrists that has been confirmed however I have also been experiencing various other aches and pains along with strange symptoms such as high sensory issues, extreme tiredness and various others. I have had numerous bloods tests for rheumatism, MS lupus etc and all tests came back satisfactory so was suggested to me by GP she suspected Fybromyalgia and referred me to Rheumatology. I have just had a call from GP surgery this referral was declined by Rheumatologist and GP will call me in 2 weeks. I suffer from anxiety and this has left me worrying why the referral was declined and where do I go from here or can GP make the diagnosis of Fybromyalgia ?

[hazelcats]

Hello, going from my own experience, my GP originally suspected chronic fatigue syndrome and referred me to a ME\long term pain clinic. That doctor diagnosed fibromyalgia. But as I was having significant additional pains, asked my own GP surgery for further tests ie scans and x-rays, the referred to a rheumatologist.I already knew I had osteoarthritis in hips and knees but the rheumatologist confirmed OA i. Hands too, along with inflammatory arthritis.

However the thing is in our area at least, the rheumatologist quite openly said they no longer deal with fibromyalgia ( or OA!)

So, that could be why your rheumatologist declined to see you?

Maybe take the time to make some questions for your GP appt, and ask who you can be referred for a diagnosis, maybe lime me, there may be a long term pain clinic who can help.

[Lorilal in reply to hazelcats]

yes I’m hoping to get a diagnosis for peace of mind if nothing else and will ask about pain management clinic as I am on a lot of meds for heart disease and meds for colitis along with high dose gabapentin and amitriptrilyne so if there’s anything that can be changed to help with pain I’ll take it haha !

[SpikeDinosaur in reply to Lorilal]

GPs can diagnose fibro - so some rheumatologists expect that if tests don't indicate another diagnosis then the GP should diagnose and manage. Pain clinic might well be the best thing to try next. Hope you find something to help.

[Loobielu]

Sorry to hear you're going through so much, including such uncertainty which is probably down to the fact the NHS is at such crisis 🙄. Even when Rheumatology does diagnosis Fibromyalgia they only bounce you back to GP to manage 😕. I suspect GP's refer us to Rheumatology to get you off their hands for a bit anyway, but then I'm a bit cynical! It sounds like you're already on quite a bit of medical pain management already, I'm not sure what your GP would be brave enough to add. Ironically once you're labelled as having Fibromyalgia, it's not exactly the golden ticket to feeling better. I agree with above pain clinic is your next best step. In the meantime selfcare is the only thing left, so try and research this. Best of luck. Hugs x

[Lorilal in reply to Loobielu]

I’d be happy to come off some pain relief if possible so yeh totally agree self care must be the way forward and hopefully I can self manage pain going forward these pain meds are having an impact on my colitis awaiting gastro appointment but again with the NHS crisis this won’t be anytime soon even though it the appointment was ungraded to urgent recently after already waiting nearly a year. I lost nearly 2 stone in 3 months but since pain meds have been increased I’ve put that back on in 3 months so life is a bit of a rollercoaster now.

Even had to give up work !! not too worried about that now lol

[Ellenindigo]

I ended up paying £200 to see a private rheumatologist as I just couldn’t make it up the stairs at work one day and had a “right this is ridiculous,” moment.

I had had years of surgeries and hospitalisation for separate joints and it was niggling me that something more was going on as the pain was constant but shifting.

In half an hour she confirmed it was hypermobility, OA and fibro.

I basically stopped work that day. Life changing but I needed the sanity of knowing it wasn’t in my head!!

Wishing you well with whatever the outcome

Ellen x

[Lorilal in reply to Ellenindigo]

Thank you and this is exactly how I feel at the moment I’ve went to different GPs throughout these past months thinking I am losing it ! some dismissive GPs but one mentioned fybro and when I researched that I felt a ray of hope and she has supported me but obviously thought she should refer me so I’m keen to speak to her next week and see what the explanation of the declined appointment is and as I’ve mentioned to my husband I just need clarification this isn’t in my head so if it means private then so be it x

[Ellenindigo in reply to Lorilal]

Well let us know how you get on - this is a supportive place and I have learnt so much from others people’s experiences

x

[Lorilal in reply to Ellenindigo]

Yes I’m so glad I found it and it certainly makes you feel your not isolated albeit I have a friend who has fybro diagnosed last year and I remember her stress and anxiety not knowing what was happening to her body she felt so alone and I think I was in denial when she mentioned to me she thought I maybe the same as I saw her at the start of her journey being so unwell and I didn’t think I was but in her eyes I was the same as her. It’s a strange one I will tell her to get on here as we need as much advice and support with this condition simply because we are all basically left to get on with it 😞

[Ellenindigo in reply to Lorilal]

Yes we are. Luckily there is a whole Fibro army here.

I meant to say, I did get referred via the NHS but the GP said it could be up to a year. Then I had my moment and had a single diagnostic appointment privately .

When I did see the NHS consultant she was lovely but did say - sorry you had to wait 18months for this but there is nothing we can do clinically so your GP is your source of support.

But like you it was the relief of knowing that helped me the most - I don’t regret it!

[Lorilal in reply to Ellenindigo]

If I have to go private I will as you say along with many others including my friend the relief helps with acceptance so yes I hope to forward with whatever my GP says or doesn’t say !

[Labradoodlelove]

Hi Lorilal, I feel your frustration. I suffered pain for four years until we had a new female doctor who referred me to Rhumetology, although it helped to explain what my symptoms were as I had osteoporosis in my hands, ankles and shoulders I was also told I had fibromyalgia, unfortunately that’s where the help ends! You are given a leaflet explaining fibromyalgia sent for hand physio and physio (in all honestly a waste of time ) the pain clinic was where I went four years ago, a 45 min journey to sit and tick boxes on how I was feeling!!! I then decided to take action myself, changed my diet so cut our sugar ( very inflammatory) and only eat fresh fish, vegetables and pulses. I also started weight training at the gym build those muscles to protect those joints and never too late as I’m 69. I’ve noticed a huge improvement, not only have I lost weight but I don’t take painkillers anymore, I sleep so much better and although I still get some pain it’s manageable. It’s very hard to begin with but now I don’t think about raiding the biscuit jar as when I have lapsed it’s amazing how the pain returns. Good luck in finding something that suits you but I’ve found that once you’ve been diagnosed that’s their job done

[Lorilal in reply to Labradoodlelove]

That sounds the road I need to go down thank you for your reply and hope you continue to stay on a plateau with your health x

[Ellenindigo in reply to Labradoodlelove]

An anti inflammatory diet has been life changing for me too. And weight-diminishing which also helps my knees 😂

[Iamthemedicalmystery]

I had exactly the same as my GP diagnosed me and then referral declined because the Gp had diagnosed me.

[Lorilal in reply to Iamthemedicalmystery]

Just getting the diagnosis for me will help my mindset so fingers crossed 🤞

[Astonvilla68]

Hi sorry to hear of your troubles and pains, a lot of the drugs for fibromyalgia are not great and don’t work very well with lots of Take a look at something called L doctor will not prescribe it because it’s not licensed for neurologist recommended it to me and it’s the best thing I’ve ever is made such a difference. Personally I would give all the other drugs a mess they problems and don’t really LDN worked amazing for me with virtually no and it’s a very safe drug. It’s just doctors and not make any money out of it that’s why it isn’t prescribed. You can get it by a private prescription at Dicksons pharmacy in Glasgow. Good luck I hope this helps as I wish I had found this before all the other useless medications. 🙏

[HyacinthBouquet1]

You are allowed to ask for a second opinion. There are two specialist fybro clinics in London. One at the great ormonf street hospital and one at St Thomas's hospital, I think. Look up online ask for a referral to one one of them. Sad that we have to push so hard for help. Good luck x

[Lorilal in reply to HyacinthBouquet1]

I’m in Scotland will see what my GP has to say next week take it from there