1st Visit To Rheumatologist Just As I Had Feared. Fibromyalgia, Yes - RA, Inconclusive

Sorry to moan, but i'm so upset and angry.

After originally seeing my GP back in early February, I finally saw the Rheumatologist this evening.

He was the coldest, horriblest Dr that i've ever had the misfortune to meet.

Despite my meticulous pain diary (that he didn't even look at) and the pictures showing all the swelling my GP and the MCAT Dr insisted I show him, because the joints on my hands are not visibly swollen today, he will not diagnose RA.

I asked him what about all the other evidence, but he was only interested in visible swelling today.

He pinched my knuckles, I yelped and cried. He manipulated my ankles I cried out in pain.

No 'oh sorry I know it must hurt', no kind of understanding comment, nothing. He told me to put my socks and shoes back on and got impatient with me, I had to apologise and explain it was hard to do it quickly because I am so stiff and in pain.

I asked him what about the fact I can't fully make a fist? Can't do yoga, walk, snowboard, kayak or go to the gym any more. What about the fact that I can't use a knife and fork or brush my hair some days.

He said if the swelling comes and goes, then it is unlikely to be RA and he would only diagnose RA if I had constantly visibly swollen finger joints for 3 months. Not being able to get my rings on, heat radiating from my knuckles and pictures taken when my knuckles were bright red and I had classic sausage fingers, mean nothing apparently.

He told me I have Fibromyalgia, which I was told 3 months ago. He didn't offer me any advice or course of action or any information on how to deal with Fibro or what to do next. I was very, very visibly distressed, I was calm, very withdrawn, but communicated all the key points I wanted to get across, but I was clearly very distressed.

There were no words of advice, nothing to reassure me that he'd get to the bottom of it, just a flat statement telling me sometimes problems can't be seen so he wasn't ruling RA out entirely and was sending me for more tests to be certain.

I asked what I should do to deal with the pain day to day, he just told me to carry on what i'm doing (which is nothing, which I told him), he mentioned the pain clinic. I am already familiar with CBT, I already use meditation and breathing to help with the pain, i've had acupuncture in the past and fainted. I work full time. Going to pain clinics and appointments all the time isn't simple and only something I will do If it has a chance of being useful. I told him I wasn't sure it would be massively useful and asked if there was anything else, he said Amatryptaline which I had already told him I was already on and have been on for the past 20 years.

So, xrays, chest scan and 2 more blood tests. However, the last one came back clear, so there is no reason to assume that this will be any different, which in my mind makes it pointless.

Family history, the sporting injury that brought it on, the fact i've had reactive arthritis in the past, high levels of pain and stiffness in the morning, loss of motion in ankles and wrists, swelling in ankles that has appeared out of nowhere (apparently soft tissue, not joint according to him), all my joints clicking, high levels of pain, constantly in my wrists and ankles, inability to walk due to pain in toes and feet....I could go on and on. None of this is RA because my knuckles did not appear swollen today.

I would perhaps have taken this better if the man had actually shown some empathy, but he was horrible. I have to go and see him in 3 months time and I don't want to. He seems happy to write me off with Fibromyalgia and is doing more tests, it would seem as a formality.

Another 3 months with no pain relief and no start to treatment, with absolutely no consideration of the impact this is having on my life. I've not seen my friends in months, i've wasted hundreds of pounds on activities that I had booked this year that I have simply been unable to do, and I was so hopeful that finally, I'd get on my way to getting better and getting on with my life.

I don't want to see that Dr again, he was horrid :'(

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39 Replies

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  • I'm sorry he was so unempathetic. Have you had any scans? Were all your blood tests - inflammatory markers included - all normal?

  • I've had one blood test which was normal. Nothing else as yet x

  • Hi,

    So sorry that you've had such a horrible experience. I wish there were some words of wisdom I could offer that would help.

    Is there any chance you can ask your GP to refer you to someone else for a second opinion? I'm sure that you are within your rights to ask to see someone else...however, don't quote me on that.

    Sending (gentle) hugs of support.

  • Thank you x

  • I have Fibro and RA, everytime I see my rheumy he checkes the Fibro first and then the RA.

    When first diagnosed Fibro I didn't receive any info at all either and I think thousands of other sufferers don't get any info about the condition and the best thing to do is to see your GP and tell them the outcome and he should then give you painkillers and or other Fibro treatments, did they not do any scans of your joints to look for the swelling that way?. With Fibro alone there is no swelling but as you say there is swelling then surely there is something else at work other than Fibro, best of luck with the Rhuemy next time.

    Fmauk.org is the main charity for fibromyalgia and you can get some very good advice but saying that lots of us on here have fibromyalgia too so I'm sure there's plenty of help here to.

    Philip

  • Thank you Philip. Shocked with their cavalier attitude. Now my routers decided to stop working just as I wanted to do some research. Grrr.

    I have some typical fibro pain points, but all the rest are joint pains that I've never seen connected with fibro.

  • They are all the same lol maybe one or two exceptions, fibromyalgia is the muscle fibre and muscles tissue and can cause joint pain but you have some swelling so really there has to be something else.

    Best of luck, I know how hard it is getting someone to listen but I'm sure you'll get some help and support from somewhere, DONT GIVE UP JUST KEEP PUSHING.

  • Hello, What's happened to you sounds horrible. If the GP has only done a Rheumatoid Factor test and it's negative then I'd ask for an Anti CCP test to be done. My RF was negative but Anti CCP very high and that coupled with the number of joints affected and how long it had been going on for gave the diagnosis. Hope this helps.

  • Thank you baldybeaver. I have some paperwork for ccp sat here. Thanks so much for letting me know about your experience.

  • Hi ShellyWelly I am sorry to hear about your experience it must have been so distressing for you. I had exactly the same thing happen as BaldyBeaver with all negative tests but a high Anti CCP test with painful joints and was then diagnosed. Maybe speak to your Doctor to see if they can do the Anti CCP test for you. Big Hug xx

  • Thank you Lainee, appreciate your help x

  • Hi Shelly Welly, I look on this sight as my Daughter in Law has R.A. and fibro, so I like to keep up to date with what is happening to her, so I don't often say anything, but the way you have been treated, I am sure you can insist on seeing a different rheumy, my D in L has similar had similar problem and told her G.P. that there was no way she wanted to see the same one again,and asked for a second opinion which she had,and was treated completely differently.

  • Thank you, I think that sounds like my best route of action. I'll call my Dr tomorrow and see if I can get an appointment to talk to him as soon as possible x

  • You don't have to see him again I,have been in this position..... Not sure which area you come from? Do,you have a PALS service? If so make a complaint and ask for a second opinion with a different consultant. Good luck

    Steph

  • hi that must have taken it out of you going hoping for some help and being pushed aside ,some of the doctors can have very tunnel vision ,they are only looking for a set of symptoms that tick there boxes. a more holistic approach would help ,but time is not on there side , don't get me wrong you were made to feel uncomfortable and let down and this can happen a lot I have found let them do what they have to do let them ask you what they need to know , then fire you questions at them they don't feel that they are being bombarded and I find more interested in what you have to say . hope you feel better soon ,most of us have been there at some point .

  • Hi ShellyWelly, feel really sorry for you! you must have the same rheumy as me, ha ha I am in NZ so dont think so but mine is so awful that he has me crying, even staying respectful to him does not incline him to be anything other than dispicable. The nurse in the room with us last time ran after me and handed me a "patients rights" leaflet, I felt too unwell to follow up and like you do not want to go back to him. wishing you well.

  • I am so sorry to hear about your horrible experience , some people just shouldn't be doctors , what more evidence does he want , my swelling comes and goes , isn't particularly visible , but I can see and feel it , my bloods don't show much , but my doctor diagnosed RA by looking at my symptoms , I hope you get some answers soon,x

  • Oh heck you poor thing. I agree with Philip that if you have swelling it is less likely that Fibro alone is at play. If I were you I would try to see your GP (I hope you have a good one perhaps) as soon as possible. When you have talked things through with them fully I also suggest you ask for a full blood count with your inflammatory markers (ESR and CRP) taken and get print outs of these so you can keep your own record of how your bloods are too. If it is Fibro alone then your inflammatory markers should be in normal range.

    By the time I was diagnosed my knuckles and finger joints were permanently raised and my fingers were locked open with swelling, but that was after a nine month wait - having heard "inconclusive" the first time - in a fairly cold and brisk manner.

    Noawadays - three years on - I have no swelling in my hands apart from one permanently raised knuckle and some early OA. I'm told this is because the drugs have kicked my RA/ RD into the long grass and if I stop taking drugs it will come back. And my inflammatory markers still soar sometimes and are always raised. I do hope your GP can help you now and that you can be referred to another more pleasant rheumy. Twitchy x

  • Not a good experience to put it mildly. I could sympathise for hours but that wouldn't do you any good, so just to say that it really, really is tough when this happens. I think unsympathetic doctors who are poor communicators leave us feeling very confused. And confusion is most definitely not what you need right now.

    However, this sort of experience is not uncommon. Many of us have been in a similar place, I think. Whatever is happening to your body, you will be wanting clarity and a clear treatment plan. It is possible to get that, but unfortunately it can take a bit of a mini-campaign on the part of the patient. You can ask for what is euphemistically called 'a second opinion' which as far as I can work out means 'for heaven's sake get me a different doctor!' If you are very sceptical about the rheumy's diagnosis it might also be a good idea to ask to see a doctor in a different hospital as colleagues might be inclined to back each other up rather too much.

    You might have to put in a bit of work finding doctors who are highly recommended. I don't know if any rheumys are likely to specialise both in fibro and RA, but some might have a particular interest in both. That's the sort of thing you might want to look for.

    I've had a battle royal finding a good rheumy. And boy oh boy did it pay off in the end. I was very surprised by that, I'd thought I was doomed! If I can help at all, message me and feel free to pick what is left of my brains!

  • Sorry I can't repond to all individual messages. My router at home has packed up so just popping on briefly at work whilst I can.

    THANK YOU SO MUCH for all of your advice and general awesomeness I really appreciate it.

    I've had blood tests and xrays this morning. The bloods will take 6 weeks for results and the xrays I won't know the results for 3 months when I have my next Rheum appointment. I have called my GP surgery, but they only have appointments during work hours. I've already had to have time off on 2 days this week for appointments so can't have any more time off, so i'll have to wait until Monday's late night surgery and try to get an on-the-day emergency appointment.

    I've asked them to send a note through to my regular GP to refer me to a different Rheum and I have collected the appropriate access request forms so I will have full details of all my recent notes and test results.

    My mum and dad have offered to pay for a private specialist consultation which is £170, so i'm going to wait until I've had the latest bloods back and then get that booked.

    The thing I am most shocked about is that I mentioned what's going on to friends on my Facebook page, and the number of friends who have come back and have said they have recently been diagnosed with Fibromyalgia is astonishing. Anyone would think it was a communicable disease and we are in the middle of an epidemic! Such a lazy diagnosis. I don't doubt that I do have it, but that does not in any way explain 70% of my symptoms.

    Anyway, thanks again for all being so utterly amazing.

    Have a good day xxx

  • Disgraceful! Even if doc didn't think you had Rheumatoid that's not a reason to treat you so poorly. I sometimes think this is a self-service disease as so many of us have to push and shove to get properly treated.

    You've had some good advice, particularly about keeping your own records of ESR/CRP and the anti-CCP test. I hope you get to see a second opinion doc soon, so keep badgering your GP too.

  • I will do, definitely.

    The man showed no compassion whatsoever. It's distressing enough being in such pain, without being treated that way and then told that whatever is going on, i won't be treated for at least another 3 months!

    I agree with a previous comment, some people just shouldn't be Drs. If they are not interested in dealing with people and have no empathy they should stick to research because being a good Dr isn't just about analytical diagnosis, it's about dealing with people.

    He did not take into account any of my symptoms or family history, just swelling visible on the day. Absurd.

    I have my fingers crossed for the anti CCP test, 6 weeks for results though which seems utterly bizarre. But only 70% of people with RA are positive and 10%-15% of people with RA are negative for both the anti CCP and the rheumatoid factor. I seriously hope I don't end up in that category and am hoping that my anti CCP is positive.

    Thank you x

  • So sorry you had such a bad experience, especially when you had such high hopes. I've been there, I had to get a second opinion for my foot, and later for my knee. On both occasions I was met with sympathy, concern, and an appropriate and correct diagnosis. So infuriating that it didn't happen with the first consultant.

    You are entitled to a second opinion. I hope that you have a similar experience to my own, and meet with someone who is both knowledgeable and caring.

    Please keep in touch! M x

  • Thank you, I felt I needed the hope of a possible resolution as I was getting so down. I needed to try and be positive and believe i'd get some help, based on what I felt was very strong evidence of RA. I know he is the expert and not me, and that they need to be sure that they don't start treating something for no good reason, but when you have to wait so long to see someone surely its 50/50 as to how visible your symptoms will be on any given appointment day?!

    My partner has epilepsy, very badly. When he first went to see his specialist and reported his symptoms, that insisting that because he didn't have a seizure whilst at the appointment, that he doesn't have the condition, which is rubbish!

  • Hi Shelly, just read your post from last night. Definitely request a second opinion!!! And if you have the energy, complain about the rheumatologist who treated you like that. It's appalling. Unfortunately, I'm very good at telling others what to do, but not doing it myself!! Your story took me right back to one particular doctor in my GPs practice, who I saw when my serious foot pain started out of the blue last year, long before any tests, long before anyone uttered the dreaded words RA. He said "it's probably just arthritis". Confused and bewildered, and in such pain, I said to him "But why would it just start out of the blue?" He sat back in his chair, shrugged his shoulders, and said "Why wouldn't it?" !!!!! And meek little mouse that I was (then!), I just sat there and didn't question him. (I did eventually tell the senior partner about what he said, but doubt if she did anything about it.)

    I can't count the times people have said to me, or I've read it, (about inflammatory arthritis etc) - "You will HAVE to fight them every step of the way, you'll have to be persistent, argue with them, demand the best healthcare", (you'll be able to work out who 'them' are !!) - and at the start of all this, I didn't believe it, and thought that I couldn't be like that anyway!!!

    Huh. Older and wiser.......! So, try to battle on. WE are the experts on how we feel, right?

    I suppose, as I am a Christian, (and believe me I'd needed to be, this last 16 months) - I should say something like "maybe the man you saw was having a seriously bad day; maybe it was a one-off and you just happened to be the unlucky one. Maybe his wife just left him or something like that". But even if that were true, you should still tell someone about the way he treated you.

    Someone on this site told me a while back (sorry, can't remember who it actually was. Hoping my memory probs are down to Brain Fog, but at my age (62) a bit fearful about dementia too......) - anyway, they told me about a book called "Conquering Arthritis - What doctors don't tell you because they don't know!" , by Barbara Allan. I decided it couldn't hurt to read it, and bought a "used" copy off Amazon becos it is quite expensive. I haven't read it all yet, but it's certainly an interesting - if daunting! - story. She's American, but don't let that put you off if you fancy reading it.

    NB - HEADS UP TO EVERYONE!!!! - I am NOT suggesting what Barbara Allan did is some sort of "miracle treatment", and we should all throw our meds away and do what she did! DON'T DO THAT, OK?!!

    But I am interested in the link between what we eat and drink, and inflammation.

    Shelly, I'm just wishing I could give you a hug! Good luck with asking to see another rheumy., and hope that doesn't take too long. xx

  • Thank you for your lovely message, and hugs, real or virtual are always massively welcomed :)

    Sorry to hear you struggled early on with a Dr with a bad attitude, it makes a hard and often intolerable situation even harder doesn't it?

    I've left a review on the NHS website of my experience and have spoken to my Drs surgery who are going to try and get me referred to someone else instead, back to the waiting game now!

    xxx

  • I just wanted to add, having thought about what this awful doctor said to you about swelling being clearly present for 3 months, that even my rheumy always acknowledges that this is a fluctuating disease!

  • Thanks Twitchytoes, that is what I thought too!

    It's definitely what I have read about it, but he was adamant that he wanted to see swollen knuckles for 3 months. Totally ignorant of the fact that months before when I first started getting really bad they were swollen for almost 2 months, but of course I had to wait months to actually see him. Thanks for pointing that out too, appreciate it.

    I've spoken to my GP surgery again and they are sorting out an alternative referral for me, they have been very helpful and understanding, thankfully.

  • Hi ShellyWelly,

    Sorry to hear about this horrible appointment yesterday. It's good to see you've had lots of support here and I know my colleague Beverley suggested you call the Helpline on your other post. The team are here on 0800 298 7650 if you want to talk about the next steps.

    Take care,

    Ruth Grosart

    NRAS Digital Media Coordinator & HU Admin

  • Thank you Ruth. I'm going to try and fit a call in tomorrow during my lunch break. I'm prepared to accept the specialist knows more than me, but i'm not happy that he asked the enough questions and is basing his opinion on too narrow a focus.

  • So glad your gps are supporting you, and you're going to get a second opinion. My own gp has been golden, I don't know where I would be without him! Hope you find someone good! M x

  • Does or has anyone else had to wait 6 weeks for blood test results? I went to the hospital this morning and I asked how long the results would take and I was told 5-6 weeks. This seems excessive to me, anyone else waited this long for anti CCP results?

  • Hi ShellyWelly,

    I have my monthly bloods taken at my GP surgery. I can normally phone and ask for my results 2 days later. If things are going well though I just wait for my next test, but 5-6 weeks is ridiculous!

    I know how you feel about your Hospital RA consultant - Mine needs a charisma by-pass that's for sure. You only have to listen to people outside in the waiting room and they all say the same. They all say the same - obnoxious, talks down to you, hardly every looks at you when he is speaking to you and they all hope they will get to see someone else! He makes you feel like NHS trash! Luckily, I mostly see one of his underlings, but she blows hot and cold too! She wanted to call him in 2 appointments ago as she wanted to changed something, and I told her I didn't want to see him, but I trusted her judgement. So she went and spoke with him instead, came back and he ok'd her judgement. I did look into going to another hospital, but he is there as well and at the Bupa hospital.

    The RA nurse can never give you an advice on anything if you phone. Her stock answer is "I don't know, I will have to ask Dr. ........ when I see her next week, or go to your GP" Like you, I get more information and help off of this website then anywhere else.

    Wishing you well ShellyWelly.

    Smiler53

    ps Thank you HealthUnlocked.

  • Smiler53 yes, 5-6 weeks does seem excessive. I've looked at private consultations but the 2 specialists I like the look of charge £250 a pop :( Such a shame to hear that empathy seems to be a common skill that is lacking in some specialists!

    Thank you for the well wishes xx

  • Hi. Everyone medical thought my husband had RA, but tested negative each time they tested so they diagnosed fibromyalgia. Things continued on a downwards spiral and eventually my dad paid for a private consultation with rheumatologist. It turns out he has psoriatic arthritis! 4+ years of serious pain but at least he now has diagnosis (even if it was totally missed by what feels like 100s of doctors!). Not responding to meds but hopeful he will soon. He now sees the doctor in her nhs clinic. £150 well spent for a very thorough hour long consultation. Good luck!

  • Hi Bugmob, so sorry to hear about your husband being misdiagnosed and it taking so long, but also very happy to hear he did eventually get a correct diagnosis, that's good to hear and thanks of letting me know x

  • Dear ShellyWelly, Please go see another doctor. Get a second opinion. Even if your present doctor is correct, there doesn't appear to be a good match for the two of you. You can have your records and the latest test results sent to someone else I believe. I'm so sorry for you. Get going on this immediately.

    Jillofthe hill

  • I cryed reading what you wrote. Im going Through the same pain as you. I have Fibro and RA.

  • First of all... Too many people think that doctors are God. I don't put up with any s*** from any doctor. They put on their pants just like you do. And remember you're paying their bills to treat you and treat you with respect. I worked in the medical field for 20 years... And oh the things I have seen. A lot of people are afraid to stick up for themselves when it comes to Physicians of any type. Like I said I'm paying their bills and if they don't want to treat me with respect then I can just find another doctor and pay their bills. But I hope you get some answers and feel better soon

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