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.
SAME HERE ! been onj oxycodone for 5 yrs........ some relief..... tried everything,,,,,,, reumatologist said she cant do any more for my FM ! Im also dealing with RA and am in remission with breast cancer. ive been to every kind of doctor.
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!
I have fybro, raynaulds, sjorgrens and UCTD… and a constantly raised ANA … last time I saw a rheumatologist she dismissed all my pain as musculoskeletal and discharged me!
I haven’t bothered fighting the system any longer… it’s too exhausting.
That's awful! Yes these days with a lot of things I do end up self-diagnosing and then using the internet to see what I should do but unfortunately I can't prescribe myself medication. 😂 Thank you and good luck to you too. x
I’ve not been a member very long and have not had a diagnosis but I find the abreaveations very confusing as I don’t know what they mean pots uctd haven’t a clue what they mean I’ve only had one x ray on my neck which dr was wear and tear now got pain in neck back ove my head and Into my eyes I have been on steroids for. Nearly two yrs for. Uveitis in eyes. Have had headaches as well since then also had problems with auto immune system my eyes are clear had inflammation in eyes three wks ago but that’s clear to but pain in head and eyes has not gone away steroids stopped about 4 months ago been given pregabilon anatriptalon and few others take eight co codomola day but awaken up evry night about four in morning with pain but can’t take more pain relief hes now sending me to orthapedic but 12 to 18 month waiting list I can’t suffer this pain much longer can’t watch tv I pad read but the pain starts my mobility is not good either dr not helpfull thinking of going private not got much savings but don’t know how much it would cost for consultation iif I would have enough have to do something also have flushes about four times a day my body itches a lot especially my face and scalp just wake up evry morning not knowing what else has started have chronic fatigue mental health problems depression anxiety to don’t know how many times over the yrs been told imagination or I look to well to be depressed these people know nothing so should say nothing sorry I’m all over the place but pain so bad .Wee Jinty.
Hello, I think Dizzytwo s reply is spot on, differently get a letter into the practice manager. The trouble with my surgery now is when we go for an appointment we see someone different every time not like it used too be where you got too know your doctor/doctors, I’d want too rant as well as it’s not good enough when information is missed, it’s happened too many people including myself. Xx
Yes same here, I have spoken to so many different doctors in the last 6 months and each one has a different attitude. Sorry you've been through the same things. It's so good we can support each other. x
I am lucky I guess, as I book an appointment a month in advance see same Gp… not an easy straightforward process but I fight on. You have to demand it… sounds harsh but works I wales.
Just an update, if anyone is interested - and thank you so much for all the replies, they have really helped so much. I sent in a message on Patient Access yesterday, which said:
'I was checking the referral date [to rheumatology] on Patient Access so I could follow it up, and then noticed another document which was a reply from the rheumatologist to the doctor, saying they would not see me as I already had an 'established diagnosis'. I had not been informed of the rheumatologist's reply, which is concerning as I believed I was on a waiting list. I now need a referral to one of the Fibromyalgia clinics in London (I know of UCLH and St Thomas) as I am struggling and have had no help.'
So today I've had a message from my GP surgery saying that I have a phone consultation with one of the doctor's (so many different names I have no idea if I've spoken to this one before) on 8th April. They clearly don't see it as urgent. But at least it's something. I will insist on a referral to a fibro clinic - there have to be some perks for living in London, since I can't actually get out to enjoy the galleries etc any more. 😂
And I've decided to take the co-codamol for my fibro and deal with the doctors if/when they tell me off for increasing my usage. (I'm on some now which is why I'm so chatty).
Be careful with the cocodamol- I took them for over 15 years… following 3 failed neck surgeries ( well last one immobilised me!) I now have a dysfunctional bowel… may end up with a colostomy, obviously trying to avoid.. but it’s very difficult..
I’m going try CBD prescription meds.. anything to escape this pain.
Please let us know how you get on with fybro clinic.. I’m not well enough travel to London atm. Take care. Wishing you all the best.
Oh no! I hope you get to try the CBD and it helps, I've read about it and definitely want to look into it too. My bowel is definitely not healthy but then it never has been, and I'm hoping I'll be able to explore different medication after I've had the gallbladder surgery - I did get a date through for 10th April which I think is pre-op so hopefully the actual surgery will be not too long after that. Yeah travelling is hard, we have to take cab door to door and it costs the earth these days! Look after yourself too. x
hi I was referred to rheumatology for diagnosis years ago but my son was told three years ago there’s no need to refer to rheumatology as GP’s are more up to date on fibro now.
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