My GP referred me to rheumatology in December for an 'official' fibromyalgia diagnosis and POTS investigation.
I was on Patient Access yesterday to check the date of the referral and chase it up, when I spotted a document I hadn't seen before and clicked on it to see what it was. It was a letter from the rheumatologist to my doctor, just days after the referral, saying:
'This department is willing to see patients with chronic pain syndromes for the purposes of diagnosis but cannot provide ongoing care. Please note that chronic pain syndromes and fibromyalgia are synonymous therefore this patient appears to have an established diagnosis. POTS symptoms are best managed by self management strategies. Please direct her to access information on this which is easily available on the internet. As such I have not booked her a rheumatology appointment'.
This was addressed to my doctor and I never got sent a copy or contacted by my doctor, so I'm very frustrated. She won't give me specific medication to help me with fibromyalgia, as I'm on co-codamol for gallstone pain, waiting for a date for gallbladder removal. But I'm not supposed to take the co-codamol for fibro.
So I'm left in situations like now, where it's 5.30 am and I've been awake since 3 am due to pain.
This is mostly me needing to rant, as I'm not sure that anyone can help here.
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NaturalDyer
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Hi there, I personally agree with what the rheumatologist said about the fibro pain etc. But I feel not been informed by your GP is wrong . I have had this happen to me on occasions. I think it happens to many people. More often than it should IMO.
In my case I wrote a letter to the surgery manager and asked if this could be chased up and why I had not been informed in the first place.
I also said a phone call or a reply within the week would be appreciated.
But yes I definitely would take it up with your surgery manager xx
This is brutal and unkind treatment and if you have the strength you should make a formal complaint to both services. I don't know where you live in the UK but I know of at least two dedicated fybro clinics. There may be more. UCLH and St Thomas's in Westminster. Ask your GP if they will refer you to a dedicated clinic...I feel your pain and send you a big but gentle hug xx
The one at St Thomas's gave a formal diagnosis and had different disciplines on hand. The one at UCLH seemed more muscoskeletal based. Offered Autogenjc mindfulness training, Tai Chi, can refer you for acupuncture. May also offer more. You can look them up on the NHS website.
Hi NaturalDyer, I hope you are feeling better in yourself today. I was diagnosed and discharged from rheumatology nearly 25 years ago now. They told me I had arthritis and fibromyalgia and there was nothing more they could do for me and that was that. I have been working with GPs since then to try and manage my pain. Try and do a little research on managing it yourself and then speak to the doctor again, or try a different one. Painkillers alone in my opinion don’t work I have a mixture of of muscle relaxers and anti inflammatory meds as well. Unfortunately not getting results and letters seems quite common. I didn’t get a letter about a brain scan until 5 months later when I complained. Take care.
My rheumatologist always says " it's not my remit" when I mention fibromyalgia yet she diagnosed me! I see her for rheumatoid arthritis but can't say I'm impressed! Personally, I haven't found any meds which help but we're all different. Good luck x
I have been on co-codamol for years for pain as well as other anti-inflammatory meds and injections, is there any reason why they are now suitable for fibromyalgia as you are already taking them?
I think that too, but every time I ask for another prescription I feel like I'm interrogated about how I'm using them, so I feel guilty if I take a dose when I don't have gallstone pain. But I think at this point I need to just start taking them when I need to for the fibro pain and then deal with the doctors if they say I'm using too many. I'm only taking an average of 2 x 30/500 per day at the moment, which leaves me struggling a lot of the time. To be completely honest, I'm scared they'll stop prescribing them if I start taking more, and then I'd be left with nothing.
Hi everyone, coming up to the eighth year for rheumatology appointment, I have phoned and been told they are working through the list,I have learnt to not get frustrated, everything happens for a reason, I really hope you can get this resolved,have you been on pain management courses, I found them really helpful, take each day as it comes and be guided by your body in all you are able to do in one day at a time x
I'm on list for Pain Clinic but not sure how long that will take. Thank you, I agree about one day at a time, what else can we do? I hope you get your help soon. x
I ended up (on the advice of an endocrinologist) booking a £200 private appointment with a rheumatologist and got a diagnosis, and a huge amount of helpful advice from the consultant. 18 months later the NHS appt came thru and the consultant was apologetic for both the delay and the fact that I had, “…had to take matters into your own hands”.
Both consultants said they didn’t see people with Fibromyalgia and the care was now GP driven. I got the impression the NHS is simply overwhelmed.
My GP followed the route that both consultant suggested:
Medications:
Amitriptyline, if that didn’t work (it didn’t) Duloxetine, if that didn’t work (it did) Gabapentin/pregablin.
Swimming, Pilates, gentle walks, push thru the pain (first two have worked wonders for me but I’ve learned to do a LOT less pushing through pain and a lot more dozing on the sofa).
Pain management groups/CBT. (Not for me)
Both consultants also said that opioids (Cocodamol) would not be effective for fibro but might help with my Osteo arthritis after an op etc.
My GP is brilliant about osteoarthritis (highly skilled at steroid injections) but unbending when it comes to me presenting to him in desperation with Fibro.
I got, “What would you like me to do about it” twice and it shook me up. The third time I saw a different GP and tried some questions which I saw on Tik Tok of all places helped and have shared them here once before… here they are if they help:
“This is having a significant impact on my quality of life. It is keeping me from doing normal day to day activities.”
“I have had to take time off work because of the symptoms I am experiencing.”
“I have gone to all reasonable lengths to self manage this situation and I now need to escalate it.”
“I have struggled to get appropriate care for this problem.”
“Can you please send a copy of my medical records to me. I would like to understand why the consultant has denied me any treatment.”
”I am looking for a reasonable outcome from this appointment - whether that is being referred for a second option from an alternative specialist, being prescribed appropriate medication today, or being referred to a pain clinic.”
You can also download and print an about Fibromyalgia pack from FMUK and hand it to them.
If I had been denied treatment I would still be bed bound - it’s seriously not OK to be treated the way you have been. I now no longer work but am able to live a far better life as the pain seems to be more manageable.
Thank you so much for that reply. I hadn't thought of going private but I think I will look into that. So much useful information and advice, thank you. x
Hi NaturalDyer , this isn’t what you’ve asked about but I was struck that you have chronic pain and PoTS symptoms. Are you hypermobile too? If so then your GP might want to evaluate you for symptomatic hypermobility syndromes like HSD and EDS. That was how it became apparent I have EDS - fibro diagnosis, PoTS diagnosis… then EDS diagnosis. It’s not something to worry about necessarily just a potential jigsaw piece to rule out maybe? Lots of hypermobile people are only being thrown into having symptoms like pain and PoTS having had viruses namely covid. Hope you get your referral to rheum sorted out via your GP either way. Good luck 🤞🏻
Sorry if it was info overload - you have enough to contend with already! Your GP is better placed to ask these questions than anyone else and is steps ahead I’m sure - hope you get a resolution to your referral soon!
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