Appointment last night

[Carebear92]

Hi all,

I went to see a rheumatologist privately last night finally. It was… strange. He checked my history and did a physical exam and said I’m suffering with chronic fatigue and said I have joint hypermobility, which explains some of my symptoms. When he gave me information leaflets on it and talked about my sleep disturbances etc, he tossed over a booklet on fibromyalgia and said “call it fibromyalgia if you want”!?! I found it such a strange, throw away comment, he didn’t delve into it any further and most of the questions I asked, he just repeated what he had already said. I felt like he doesn’t believe fibro is real so now I’m not sure if I have that as a diagnosis or not? Anyone else had an experience like this?

I’m waiting for his letter back to my GP to see what, if anything, he puts in there about it. But yeah… it was very weird!

[Yassytina FMA UK Volunteer]

Yes agree , gave you diagnosis on other things which was helpful but you were there to also find out if you have fibro? Like you say read the letter and if your not happy have a word with your doctor which route to proceed, x

[Carebear92 in reply to Yassytina]

Yes I was, it was the main thing I wanted to find out, so it’s a bit confusing. Hopefully the letter will be more clear

[Trappedmoth in reply to Carebear92]

What's in a name? A rose by any other name would smell as sweet ...

[Jaycee18]

Unfortunately I think like with many people some rheumatologists are dismissive of fibromyalgia. I saw one years ago who as soon as he decided I didn’t have rheumatoid arthritis was completely disinterested. He left it to my gp to diagnose fibromyalgia and start a treatment plan. He wasn’t interested in my pain at all.

However I saw one very recently who was completely different. This was also privately and I looked up in advance for one who listed fibromyalgia as one of their interests.

I’m waiting for the results of some blood tests and have an MRI booked to check for a couple of other things, but for the fibro he has reviewed my meds and also recommended to my GP that I am referred to a fibromyalgia coping skills programme.

See what the letter says, hopefully he is someone who communicates better in writing than in person and your GP can take over from there.

[Carebear92 in reply to Jaycee18]

Oh wow, I’m sorry you had that treatment initially! Glad you found someone who is more supportive! I was a bit concerned that the consultant I found didn’t list fibro as an interest but had faith that his interest in pain management might have been a suitable alternative! I do hope that’s the case. My husband and I left the appointment a little confused but didn’t seem to be getting anywhere with our questions

[LiimaY in reply to Jaycee18]

Hi can I ask is this private doctor is in london and how much it causes I am thinking to go private NHS waiting is too long and I am in lot of pain can you please share with us thanks 🙏

[Jaycee18 in reply to LiimaY]

Hi no it was in Bath. I have BUPA cover luckily but I think the charges were Initial consultation £240 follow up consultation £120 plus blood tests at around £90, not sure what the MRI is going to cost yet.

[Trappedmoth in reply to LiimaY]

If you trust your GP, ask them for advice. That is what I did and my GP was really helpful. When I explained to the rheumatologist that my appointment was being paid for by my 100 year old mother because I could not get an NHS appt, he immediately moved me onto his NHS books and promised to keep me there. He is also a researcher into chronic pain. And he is really lovely.

[Carebear92]

I’m not sure this response has been posted to the right thread? Just wanted to let you know rather than ignore it so it gets to where it’s supposed to be 🙂

[rosewine in reply to Carebear92]

Thanks for noticing. I know I definitely posted to the right thread as at the time I was the only one who replied. How strange I don't know what has happened will try again.x

[Carebear92 in reply to rosewine]

No problem. Technology is weird 😂

[LhasaMomma]

Hey, I had one NHS charmer who told me that the problems were all caused by my being fifteen pounds overweight and I would be better to go back to school, get some GCSE's and a job .... I sat there stunned for a minute during which time he walked out with a smug smile on his face. I wrote to the Health Authority .... Included my qualifications, degrees, medical background, thirty years of work experience ... And asked what GCSE did he think might improve my health? In the end, I figured that he was most likely a rather sad individual with illusions of grandeur. Just remember that it is him that has the problem and not you. If you are going private then do the same as another member suggested and find a consultant who works with fibro sufferers. The reality is that some medical professionals want to make easy money by simply dealing with illnesses that are straightforward ... They don't want to take on an illness where it isn't a case of blood test, diagnosis, write a scrip. Let's be frank, fibro isn't easy or simple.

[Carebear92 in reply to LhasaMomma]

Oh WOW! The smug smile would have boiled my blood! I’m so sorry you had to experience that. So glad you had the strength to not take on his bullshit personally. Yeah I don’t think I’ll go back to him. It’s a very sad reality that we have to experience this

[Badbessie]

From the experience of my wife there are still some rheumatologist who do not believe in fibromyalgia as a diagnosis. She has hyper mobility syndrome, PSA but her other symptoms did not fit those conditions. We saw three consultants before she finally got a diagnosis.

[Carebear92 in reply to Badbessie]

It’s a shame really because I really feel like the understanding and the way you go about treatment is a mental thing and when you feel invalidated, it does affect your motivation! 3 doctors for a diagnosis is just awful!

[Trappedmoth]

In my experience, no specialist likes to use the word 'fibromyalgia'. That is not because they don't believe that I am ill. They just don't like the word used to describe the illness. I had one doctor calling it 'wide-spread pain syndrome' but that isn't accurate either and most ordinary people don't use it. There are also debates about whether CFS/ME is a separate illness or part of fibro - or visa versa. It seems to be that your rheumatologist gave you a pretty thorough examination and I think that that is what is important. Fibromyalgia is a word assigned to a bunch of symptoms. It's not an actual illness as such. The way I describe my fibro is: one part chronic pain to one part chronic fatigue to one part PTSD.

[Carebear92 in reply to Trappedmoth]

Thanks for the different opinion, it’s nice to hear the other side. I guess I have just had a LOT of issues with people not believing me to be ill with one thing or another and it may just be that the importance of a diagnosis is so that I can just simply explain it to other people. I’m sick to death of people saying “so what is actually wrong with you?” and expecting a name rather than a list of symptoms, it’s lead to a lot of mistrust among my colleagues which has given me a lot of anxiety. Did a doctor validate you by saying they agreed with your symptoms being referred to as fibromyalgia or is that a name you choose to use to make things simpler?

[Trappedmoth in reply to Carebear92]

I just re-read the letter from my rheumatologist (he always sends me a copy) and he does refer specifically to fibromyalgia, but then lists the various other 'syndromes' and symptoms. I think that a lot of doctors are using fibromyalgia because that is what most people understand.

My illness is the result of workplace bullying and harassment. The people I am angry with are the bullys and the people protecting them; not the doctors trying to help me. Some doctors really are useless, but most really do want to help. Fibro frustrates everyone. Take care.

[Midori]

He gave you a diagnosis of CRS and Hypermobility, and they do go together. I sometimes feel Fibro and CFS are basically the same thing, the Chronic fatigue along withthe fibro.

[Carebear92 in reply to Midori]

The flippant comment just confused me and wasn’t explained at all even after I questioned it. Seems everyone has their own way of making sense of, explaining and managing their symptoms, I just need to find my own I guess

[Fibrokim]

Hi Carebear92. My son was diagnosed with ME when he was 11, no-one believed him! He missed all of Year 7 from school and most of year 10. He was on crutches for a year and spent an awful lot of time in bed other than physio 3 times a week. We eventually took him to Turkey on holiday where he was able to swim everyday and the hot weather helped. It went away for a couple of years and has come back again, much worse in the Autumn and Winter. I think people find it hard to believe that ME and Fibromyalgia are real symptoms. It took a lot of almost begging doctors to come up with a diagnosis for my son. I do find it strange though that I have recently been diagnosed with Fibromyalgia, I wonder if there is a connection. I started suffering with different symptoms with pain in multiple places in my body when I was in my early twenties and and now 61 and have only been diagnosed recently.

If you are not happy with one consultant ask to see another. Good luck x

[Helensumber]

Originally I was diagnosed with chronic pain syndrome, this was years ago and I don't know if the name fibromyalgia was used at all back then, I was also diagnosed with ME/CFS a little while after, a few years ago another consultant changed the diagnosis to fibromyalgia, I can fully understand where you're coming from because the way people react when I reply to the question "what's wrong with you?" Has changed dramatically since my reply changed from chronic pain syndrome to fibromyalgia, whether this is because more people are aware of fibromyalgia or whether the word sounds more like a type of illness compared to it being a syndrome, I don't know, but if the letter doesn't make things clear, go and speak to your GP, good luck.