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.

[Cotswolds25121 in reply to hazelcats]

Rheutmologist not dealing with Osteoarthritis?? 🤔 I cannot understand why this is happening. What are they dealing with then🤷‍♀️🤦‍♀️x

[Lorilal in reply to Cotswolds25121]

Exactly I’ll go private if GP doesn’t diagnose albeit she mentioned fybro to me whereas the male GP who I had been seeing seemed to think my widespread pain was coming off my colitis and I’ve been waiting 12 months for appointment with gastroenterology even after GP requesting “urgent” referral 3 months ago. After colonoscopy and endoscopy both surgical consultations I was diagnosed with this colitis and referred to gastroenterology because of huge weight loss and continued diarrhoea and 12 months on still waiting 🤔

[Cotswolds25121 in reply to Lorilal]

Hi, thanks for your reply. It’s just awful isn’t it 🤦‍♀️when you think it can’t get any worse, it does! I was referred for swallowing difficulties a few years ago and choking on everything. It took 4 years from start to finish as they moved departments and said they had lost my records after the first year 🤷‍♀️how that’s possible I don’t know when everything is on the computer, anyway three years later the outcome was the consultant advised me to drink sparkling water 😡I was already doing that as I like it anyway! And was removed from the list and left to this day still with the problem, most of my tablets are still getting stuck in my throat and it’s horrible as it causes me to wretch and feel sick and panicked every day I take them😢not pleasant whatsoever obviously. I feel I’ve been fobbed off without any help or support at all. I’m sure without a doubt there are so many people in our situation and it’s just not right or fair xx

[Lorilal in reply to Cotswolds25121]

I worked in NHS for 24yrs had to retire early in April this year due to my health and even with being staff and OH trying to expedite my appointments I’m no further forward in what I was told “my colitis would be manageable with a proper plan” what chance have you got ! I’m on so much medication with no let up in symptoms but at least if I’m diagnosed with fybro I know I’ll need to get on with it that’s fair enough it’s the fact all these painkillers and steroids can’t possibly be helping my bowel issues I just want to live my life as best I can with proper management!

[Cotswolds25121 in reply to Lorilal]

Lorilal, I’m so sorry you are going through all of this. It makes me angry and sad at the same time but also extremely let down. I am a Carer for people with disabilities have been for the past 16 years I’ve been struggling for years in work and outside of work. So much that approximately 18 months ago I had no choice but to drop 1 day a week. I am feeling worse now and could really do with dropping another day but I’m on one wage and don’t know if I can afford to. I should have been retired over 3 years ago but because of the change by government I am having to still get up when I can barely move and get ready at 7am! And work 7 long hours supporting others, who are physically in better health than I am and don’t get me wrong I loved my job but am at the point where I’m feeling so exhausted physically emotionally and mentally that it’s taken a huge toll on me and it’s making me depressed and anxious which I’ve had in the past over the years and wouldn’t feel this way if I didn’t have to few so incredibly stressed and angry about having to still work with my health the way it is, sorry for the negativity but it’s how a lot of us feel I imagine xx

[hazelcats in reply to Cotswolds25121]

Not much it seems Cotswolds! I saw consultant in April and had zero contact with a rheumatologist since, only with nurses. He has since left so maybe (if ) I see his replacement I may have better luck. He would only look at the inflammatory side.

I did see a GP as I was finding it so hard juggling the inflammatory arthritis, the fibromyalgia and OA, who took me seriously. We worked on fibro nerve pain meds.

I should soon have contact with a pain clinic who will look at me, and help with the overall conditions and symptoms and their combined effects rather than just one condition.

[Cotswolds25121 in reply to hazelcats]

Hi, good to hear from you 🤗goodness knows what is going on 🤦‍♀️🤷‍♀️it’s really appalling hearing others who aren’t getting any support so I was so pleased to hear that you saw a good gp, atm I’m very lucky in that regard too 🤞can change so quickly though. I am interested in what you have said about fibro nerve pain meds🤔I shall ask my gp about this for more information so thanks. I have OA as well along with like most of us many other chronic conditions. It is son helpful to be treated with every other condition and symptoms so everyone is on the same page and hopefully 🤞 a better understanding and outcome. It’s very very draining to say the least when you have to keep going over and over the same old explanations about what you are suffering with and especially to a different dr who knows nothing about your medical history or conditions on top of being in constant pain with one thing or another or both/all at the same time xx

[hazelcats in reply to Cotswolds25121]

Hi again, luckily I am mostly able to be in touch with the same GP if I ask, even if it is by phone or text.Whilst of course it would be irresponsible to recommend or advocate a medication, as we are all different in how we respond, or need to ensure a med is safe to use with a DR overseeing and prescribing, like others with multiple health conditions I was working on the basis that attempting to improve a symptom even a tiny bit, this should have a knock on effect on other conditions - fibro of course seems to love ramping pain of all types ups so much.

So I started by getting my hrt right( nightmare!) Then I was having physio on the OA in my hips, 3 years ago, but when other symptoms appeared he stopped whilst investigations took place.

Last Dec fibromyalgia was diagnosed, swiftly followed by inflammatory arthritis! The arthritis needed sorting, still trying to get that right. Then a couple of months ago I discussed the nerve pain with the GP. There were a few options he suggested and I had done some research and I started on amitriptyline, currently on 40mg.

As I say, with fibromyalgia in particular it seems reactions to meds can vary so much. I strongly believe in my own research from reputable websites.

I hope you manage a productive discussion with your own gp if you decide to go that route.

I am on other meds for various other conditions too. Grrr. Its been an eventful few years to say the least...

I wish you well

[Lorilal in reply to Cotswolds25121]

Hi update GP has called explaining referral being declined and many had previous stated rheumatologist no longer taking referrals for potential Fibro patients due to overwhelming waiting lists, however, going by info given by GP initially my GP was guided to agree and diagnose due to meeting most of the criteria to diagnose fibromyalgia so at least that bit is done. GP is sending me documentation of various self help groups in my area and other info on potentially coming off some of my pain relief if possible at my request now whether this will be beneficial to me I would certainly like to try as I don’t think gabapentin and amitriptyline is doing my IBD any favours and in turn flare ups of IBD interact with my heart medication! Vicious circle 😖

[Cotswolds25121 in reply to Lorilal]

Hi Lorilal, it’s certainly never straight forward is it 🤷‍♀️good to hear that you have at least got somewhere with the gp, and than you for sharing your update. There’s always a spanner in the works eh. I had my flu jab after work on Friday and always have it due to my chest being one of my main weak spots with infection etc and I don’t have any issues but this one has given me a rotten sore throat, like swallowing razor blades 😫and an awful cough although the headache has worn off thankfully, could be coincidence I suppose but I feel terrible, drs were good today when I finally got through and she could hear how bad my cough is so has fitted me in at 9.30 in the morning and I have a blood test at 10.20 and then acupuncture on my knee back at the same area at 4 🤦‍♀️so I’ve called in to work and taken the morning off otherwise it’ll be to stressful. Please let me know how you are and have a nice evening if possible xx

[Lorilal in reply to Cotswolds25121]

Hope you feel better soon I had mine last week sore arm for days and I know a few of my friends have similar symptoms to yourself xx

I’ve developed an abscess on my breast now very sore too hah x

[Cotswolds25121 in reply to Lorilal]

☺️ thank you.. ooohhh, I had an abcess in the same place during one of my pregnancies, sooo painful. I walked to the hospital in the early hours of the morning, this was many years ago, as I couldn’t stand it any longer. I had a antenatal appointment early the next morning and they said to deal with it then🤦‍♀️so back home I walk 😡and had a bath as hot as being pregnant allowed and 🙏it burst, I can’t tell you the relief. I hope yours doe, maybe antibiotics? Night night and take care, I do feel for you 🤗xx

[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

[Cotswolds25121 in reply to Loobielu]

Yes, utterly deflating is an understatement when the rheumatologist gives you a diagnosis, it’s a lot of relief in 1 way after years and years of so much pain and not knowing why but when they say those words’ there is nothing we can do for you’ it’s like you are in limbo and don’t know what to do or where to turn 😢

[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