Fibromyalgia Action UK

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trip77 profile image

Does anyone else here see or have regular appointments with the above?

I was put under a rheumatologist who was the person to diagnose me with fibromyalgia. I have had 2 follow up appointments, 1 after 6 months and the other was almost a year later due to covid.

I had an appointment with him in February and he discussed with me the results of my nerve tests regarding carpal tunnel, which I just had surgery on last month, and also that I will be having further mri scans etc, to check for ankylosing spondylitis among other things.

I've heard from some people that they struggle to get seen or once they have been given a diagnosis, they are just fobbed off with pills etc. I guess I'm wondering how many other people are in the same situation as me to have a specialist to keep an eye on things or if they receive no help at all.

I guess it's also a matter of where ye live and how much more busy/ how many patients yer consultant has.

38 Replies
Yassytina profile image
YassytinaFMA UK Volunteer

Morning, I am glad you have follow up care, hopefully other members will post with their experiences, I was diagnosed by my doctor and never saw anybody else x

Hello trip. How lucky are you? I eventually paid privately to see a specialist. He diagnosed fibromyalgia using the trigger points - I scored top marks. And I never come top in anything.

I couldnt afford his fees - but he wrote to my then GP giving the diagnosis. The GP said - you go private you stay private. I wrote to rheumatologist at hospital asking for help. She sent me on a Pain Management course. And that was it.

I have since changed to a different practice. But they don’t really show much interest in my fibromyalgia. Just recommended 8 paracetamol a day (I go as far as 4 - figure that’s enough).

So I jog along as best I can. Have got lots of help on this forum. I’ve discovered stretching and pacing (really do help). And I’m very careful with my diet - no alcohol or coffee. Try to keep stress levels down - easier said than done.

So - all in all - be grateful you have a sympathetic consultant who you don’t have to pay £250 a session. Yes - that’s how much it was!

Best wishes xxx

Hazel_Angelstar profile image

Generally speaking, fibromyalgia is managed at primary care level (gp) without the need for specialist input unless the gp feels they have tried everything they can offer - then there may be referral to pain clinic etc.

They sort of leave you alone after a while, hoping that eventually you will stop whining and vanish into that mass of suffering that just goes on and on without any real hope of cure or any real care.Meanwhile the human body built to survive most things thrown at it keeps on going.

Depressing nope, just plain fact, one day someone is going to find out what is going on and I hope they get a Nobel prize or at least a bun.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Makie-Uppie

We are each responsible for our own well-being and symptom management. I don't think blaming medical professionals for not having a "cure all pill" is helpful.

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

Sorry not clear enough obviously, I am not blaming the medical people they are mostly absolutely brilliant.It is what they are up against, something they help with when they can, but if they did not manage to distance themselves and adopt a cold and 'clinical' approach to their patients with the F-word and all the other problems we have.

If they did not leave us to help ourselves until things get really bad, they would go nuts and the system would probably collapse.

It is the way things have to be and I'm quite happy with it.

Arymretep profile image
Arymretep in reply to LisaSnow

Actually I thought that’s what our Doctor was for, to oversee our health, we’ll all be diagnosing ourselves before long anyway the amount of trouble it is to get a Drs appointment at the moment. They do have a duty of care

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Arymretep

With the pandemic, non-urgent medical appointments are moved to web based or telephone appointments. This is necessary in order to preserve resources while protecting everyone from the novel virus. Fibromyalgia is an unique disorder that diagnosis is based on ruling other medical disorders FIRST. Even without the pandemic it would take a few years (on average) until a conclusive diagnosis is offered. This is the responsible approach as you don't want a tumor to be missed or mislabeled as fibro when you actually have RA. Once you get the diagnosis is actually when the real "battle" began. Existing medications do not and will not cure you of pain. It is the lifestyle management in combination with medical support that will make a difference. Even then, the disease course is known to come and go in flares, so ultimately how successful you are at pacing and taking care of your health has much more to do with your outcome than the pills you can get.

Be patient, accept that you have the power to make a difference and work hard at it, and don't take frustration out on professionals who can only do their best to help you.

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

I can really only speak personally though I do have a few friends who are in a similar boat. I became ill about 25/6 years ago and despite everything I tried the jobs (yes there were 2 sometimes3) and the marriage and home went and that is when I was told by a benefits advisor that I was making it all up. it is only in the last 6 years that the F-word was raised, before that it was CFS or an over active immune system and that was from my GP who was pretty sympathetic others not so. I had a pain threshold test done and due to a lack of response a hospital consultant punched holes in my legs to a depth of a centimetre 6 holes in each leg and he still did not get the result he wanted.

Another consultant reduced the amount of pain medication (actually he just took it off me) and I had a pain induced heart attack so the people who say pain medication does not help are not living on my planet.

I am quite used to that glazed over the eyes look some people in the medical profession have when you mention the F-word, CFS, autoimmune disorders, neurological disorders and a host of other minor ailments. People have even gone to the extent of telling me to man up and it wasn't going to kill me, oh yes that was the guy that stopped my heart.

There are money men who would like to see the bill for pain medication go down as chronic pain is quite a large cost to the NHS and they just make stuff up as it suits them.

They would be better looking at the charges the pharmaceuticals are levying as apposed to production costs that would probably be an eye opener

Whilst I agree that some aspects of exercise and diet and and life style have an effect on the F-word in some cases the added support of medication is required.

Again personally if I do not take what has been prescribed I overheat, this heat is generated by restless leg syndrome and an increased heart rate due to pain, then I either have a heart attack or a febrile fit, both are not good since I spend most of my time alone.

Again medication helps in my mental health which is the latest buzzword it allows me to think to some extent clearly, hard when a poison goblin is dancing around inside your head and his troll cousin is trying to drive a stake through the top.

Medication and the health should not be ruled by money men, unless they are prepared to listen to both the patients and their GPs, who make broad sweeping generalisations based on their latest pretty chart.

Even before this pandemic broke out my medical centre was moving onto the web and so this is a natural progression that the pandemic has accelerated. I didn't mind this having a background in biotechnology and microbiology so it is kind on in my nature. What I couldn't take was all the jumping on the bandwagon and rush to grab the latest buzzwords, the lock down became a circuit breaker lockdown and mostly all people did was talk about a new virus that I studied in cats 20 years ago and is probably that old it gave the dinosaurs a runny nose.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Makie-Uppie

What was it called in cats?

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

Sorry that should be 30 years ago, I just saved myself 10 years. It was called coronavirus, it is a very common virus, very old and with a very large number of variations. As soon as it enters a new body it mutates to suit, no wonder the conspiracy theorists are going mad. Personally anybody would be nuts to mess with it, no control it would just change.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Makie-Uppie

Coronovirus family has been around long before. I thought you were studying an unique species dangerous for cats?

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

Probably as long a cellular life has existed bit of a chicken and egg thing which came first the virus or the cell it infects and some coronsvirus strains can be dangerous to just about everything including us and our furry friends after all we all basically the same.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Makie-Uppie

Another virus horrible is herpes simplex family. My poor kitty had blisters all over his mouth and nose and all we could give him was L lysine. Hate seeing my babies suffer like that.

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

No one mentioned cat grass, it is really just wheat or oats but as well as giving them roughage it gives their immune system a boost, so my cat friends tell me and on their advice I have two very shiny cats. viruse want to spread, old ones just make us a bit ill, that way they get to spread from sores or our kissy bits or the private areasNew ones are the scary ones, they make us that ill we die but they burn out quickly, nature is just one big machine, god machine if you want but a machine.

Merlio18 profile image
Merlio18 in reply to Makie-Uppie

Hi have you got more info on the below as I feel this is similar to what i have been experiencing what is the connection are there research papers,

I get restless leg symptoms when I am chronically exhausted, heart issues and I have trouble managing my heat tolerance

"Again personally if I do not take what has been prescribed I overheat, this heat is generated by restless leg syndrome and an increased heart rate due to pain, then I either have a heart attack or a febrile fit, both are not good since I spend most of my time alone"

What medication did they prescribe you, how do you manage it?

Makie-Uppie profile image
Makie-Uppie in reply to Merlio18

Like I say you put it out there and suddenly your not alone. Sorry to hear you having some of the problems I am, it's pretty miserable. For pain I take Co-codomol 30/500 six of those and gabapentin 300 mg six of those. These are spread through out the day and as a side effect they keep the legs under some control. Incidentally I get restless hands too, same sensations reall y really annoying. Heat I have and air conditioner and 2 powerful fans and these are added too by cool showers. I spend a lot of the summer mostly naked so it is lucky I'm mostly alone except for my cats that I think are immune.

As for more information I just roam around the Internet and see what is said, I don't think a lot has been done. As I have said previously a lot of medical people's eyes glaze over when you mention it.

And the tidiness is really quite wild sometimes. I can be that tired I can't move or even sleep, my eyeballs feel like their going to fall out of my head.

uggycat profile image
uggycat in reply to LisaSnow

We are all responsible you are right , But there are good Doc and Bad ones , in the NHS like any job , and we literally put our selves in there hands, if we are ill, because we need help to get well. and that is there job, and for so long they led us to beleive a pill cured everything, And you try getting off those pills, one needs a lot of help, but there is a lack of it.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to uggycat

Often people dependent on pain pills need more pills to get off the first one. Pretty scary. This is why it isn't easy to get the strongest kinds that mask pain anymore.

Makie-Uppie profile image
Makie-Uppie in reply to LisaSnow

I know, you get people who shall in and demand, they want no pain or an antibiotic to cure a viral infection and telling them it is useless does no good. Same kind of people are punching ambulance and hospital staff. I am on just enough to function I have been offered more especially as the old ticker misbehaves but I don't want to be a vegetable either the F_word has me firmly planted in the allotment half the time anyway.

Maud-ie profile image
Maud-ie in reply to LisaSnow

Ouch. Very school teacher -y reply and not particularly kind

desquinn profile image
desquinnAdministrator in reply to Maud-ie

maybe matter of the fact but certainly not personal like yours. intent is hard to discern when text mediums like this are used so best to give the benefit of the doubt. Also people are all different kinds from all over the world so some conversations come across differently at times.

Maud-ie profile image
Maud-ie in reply to desquinn

Absolutely. I understand

I was undiagnosed , for 4 years diagnosed by rheumatology in 2020 with fibro referred to pain clinic after asking Gp . I take minimal meds & rely on lifestyle stuff, supplements not having drama people around me, aromatherapy magnesium salt baths .I pay out of my own pocket for spa days, massage hot tub etc swimming .

I'm interested to see if pain clinic , can offer me anything .Hope you find some relief, for your symptoms

Having had fybromyalgia and arthritis for over thirty years I can assure you that I have had and do have plenty of patience with the medical profession over the years, no one on this forum is medically qualified so we have to be very careful when we make statements about existing medications

I see you are in America , so maybe the treatment is different to the U.K.

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Arymretep

In case you misunderstood, I wasn't making a recommendation about how to use medications. I was describing the systemic reason (deadly opioids abuse) why doctors are becoming more and more careful about prescribing pain medications.

Arymretep profile image
Arymretep in reply to LisaSnow

I understood perfectly, unfortunately some people have no alternative as they are just left with no answers

I just get left struggling as I refuse pills as they stop working eventually I shuffle around the house on two bruised feet popping knee cap and swollen hands but just carry on breathing

LisaSnow profile image
LisaSnowFMA UK Volunteer in reply to Roseie1

I am sorry you are struggling. In my own experience after taking a little break, the same med that didn't work anymore before can work again. Maybe that is an option you want to discuss with your doctor ?

Maud-ie profile image
Maud-ie in reply to Roseie1

Gabapentin stopped working. Cymbalta did not work. GP's get bored with you. Insisted on an MRI - I have advanced Ankylosing Spondylitis. All put down to Fibro which I also have. My heart attacks were initially put down to anxiety and indigestion. GPs only have the same Google as us.

desquinn profile image
desquinnAdministrator in reply to Maud-ie

"GPs only have the same Google as us." or GPs are human too and make mistakes. The are also good ones and not so good. Their experience and skill does not equate to anyone else searching google. But, once they have something outside their knowledge they do need to consult others.

I too was diagnosed by a rheumatologist I had one follow up appointment with her and have not heard from or seen her since

Patdoyle profile image
Patdoyle in reply to Dylan62x

I never even got a follow up appointment just handed a leaflet on fibromyalgia

After hospital and being diagnosed my gp took over my care apart from the times where they have rushed me back into hospital then had follow appointments when I was released with the spinal team but then they have discharged me 3 times and GP took over my care seeing me every month and just handing me the same pills everytime he then left the practice and when home to Germany from then on it was hit and miss if anyone helped me only getting appointments if I had any new symptoms and my new surgery I have never met a single doctor they cancelled my first appointment after waiting 2 weeks then they called me and she had my medical records but had not read them and wanted to take me of my meds she then told me that a scan I had they found nothing when they actually found a 6.5 cm tumour which was removed 7 weeks ago and now having to have ongoing treatment at the hospital she even called my consultant who wrote to her and sent me a copy of the letter saying they are dealing with my treatment and they will let her know how my progress is that they remover a serious tumour and ovary and tube and thatvthey will be operating again to take the rest so GP I find now are a total waste of time hospital can only see you so many times there is nothing they can do with me with regards my fibro and spine etc so they just let you sit and stuffer with pills and morphine and tge new doctor wanted to take me off my pain meds cause she said nice have stated so I was fuming with her she took my hrt and refused to give it back consultant told her she had to prescribe it I have nearly got to my wits end with them all

I was diagnosed in A & E with osteoarthritis in my knee about four years ago and since then I haven't seen a consultant. It doesn't bother me too much, partly because I had a dreadful flare and got over it and because I have been dealing with spinal compression fractures. I am being treated for osteoporosis but have not had a diagnosis for that.

Hi I was diagnosed 6years ago . Have seen the rheumatologist once . Doctors don’t ever ask so really not any aftercare.

I was diagnosed 15 years ago at same time as rhuematiod arthritisI get no follow ups. My rhuematiod is in remission which is great but fibro and spondylosis have really went to town. I'm in fife Scotland I think we are yhe worst for any rhuemy care of any kind now.

desquinn profile image

trip77 it looks like your follow-ups were none fibro related ie AS and carpal tunnel surgery. This is normal for this sort of thing as there is a need for monitoring and interventions potentially.

With fibro I see others talking about not having follow-ups at a rheumatologist clinic. This is also normal as they are performing a diagnostic screening function initially and recommending perhaps a course of treatment initially. However, at present primary care is where it happens for fibro patients i.e. with your GP.

When your condition changes or the need arises then a referral to a pain clinic may be appropriate. We do not have a clear fibro pathway at present and the variety of patient presentations means this is someway off. There is so much trial and error which is why a good working relationship with your GP is needed. Attend your local fibro support group when it reopens and see which GPs they recommend.

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