Hello

Hello

Sorry about the long post. I wanted to drop in and say thank you to all those people who responded to my post about leaving the group. I had no idea so many of you read my replies hahaha. It was very supportive and I appreciate that support enormously.

I was very very distressed by the nonsense I was going through with a registrar who insisted that I did not have RA and only had FMS which I vehemently denied having. I was n a place where i just needed to withdraw and regroup. Well here is the story and should be a warning and lesson for us all. I stuck to my guns and said I refused to accept that diagnosis, argued on the phone with the registrar, told her repeatedly I did not have FMS as I did not have any of the symptoms apart from pain in my hands and wrists, which I have had since 2012. She continued on repeating the same thing that I had FMS and started discussing lyrica etc which I had already told her I cannot tolerate and wouldn't take and on and on it went, until I said after about 10 minutes, "well we are getting no where and I have better things to do" In my gut I knew she was wrong and I didn't have FMS. I went home and emailed the rheumy nurse and said that I had spoken to the registrar who insisted that I had FMS but I do not accept that and never will as a diagnosis when I have none of the symptoms. She called me the next morning horrified by what I related to her and said she would talk to head of Rheumatology. I then got a call later that afternoon from him. we talked about the situation and waht had occurred with the registrar, he confirmed that I still have RA, but it is not causing any inflammation at the moment and that I probably have myofascial pain from being in pain for so long and nothing working well, but I do not have FMS. I was brutally honest and he listened when I talked about what sort of affect his registrar had had on me and luckily I am a bloody minded person and stuck to my guns or I would have been labelled with something I do not have and then lost in the system. I talked about the stigma attached to people diagnosed with FMS and while it might be a safe and friendly thing to have within the confines of rheumatology, that other medical professionals treat people with FMS and CFS with, shall we say less than the respect they are due. I told him that if I had been diagnosed with that I would have never told any other medical professional that was my diagnosis and I would not have accepted that diagnosis. We had a very frank and honest discussion and hopefully he will be talking to the registrar who has a lot to learn. I am glad I stuck to my guns, I am glad I am bloody minded and stubborn, or things would have been very very different. So please if you don't think it is right, speak up, talk about it, keep seeking the answer until you feel that it is the correct one. Don't be bullied by medical professionals who are overworked and time poor, you know your body, you know what is and isn't right. Most of all seek support from others and stay strong.

52 Replies

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  • Well done you for sticking to your guns. ! I'm glad you spoke to the consultant and he can sort things out for you now . And even more glad you are talking here ! Good lesson for the rest of us !

    I think this is such a supportive group and they are there for the times such as you just went through !

    So enjoy your Christmas now in the sun!!!

    Love A x

  • Thanks Allanah. When I get that upset I need to remove myself and regroup so I am strong enough to take on the fight and boy what a fight. I feel like I did three rounds with the registrar. I am glad that I have a reasonable relationship with the head of Rheumatology so that he listened to what I had to say. I have had cause to write to him once before about a registrar who also wouldn't listen to what I was saying. After talking to him I also found out that she made stuff up about what symptoms I was experiencing to fit her theory. It is so frustrating that I keep hang to have these battles.

    And yes I leave tomorrow for warmer climes and 7 grand kids! hahahah

  • Good on you for having the strength to stick to your guns - as you said,you know your body better than anyone,and certainly better than a so called 'professional'' who acts anything but!

    I too had a not too dissimilar experience at the start of my journey - after months of tests and the GP basically not knowing where to go next,he decided that it was all to do with my spine and that I needed to be referred back to my spinal surgeon.... I had an argument in the surgery telling him that my back issues had been nothing like the pain I was in,and asked how could my back affect my hands,wrists,elbows and shoulders as badly as they were - he just stared at me blankly,again said that my test results had come back clear(yet more bloods for viruses) and that he was doing nothing but referring me back. I insisted on a second opinion,and within a week I had a referral to see a rheumatologist !! Only we truly know our bodies,and if something doesn't feel right,then it probably isn't!! I only got the treatment I needed by being so bloody minded like you,so here's hoping others aren't as intimidated as the doctors try to make you feel x

  • I have had a few experiences now and I guess I just get so frustrated when it happens again out of the blue. I agree be strong and stick to what you believe to be true.

  • Good for you! I admire your tenacity.

    I've been mistreated by so many docs that I just don't tell them anything anymore. I don't have your fight.

  • Which is why they get away with it. Challenge them. If you were buying something and it was faulty you wouldn't accept it or think of it as taking your car to a mechanic. If he cut your brake lines and put you in danger you wouldn't accept being put in that positions either. start the conversation with them if you don't agree, they need to learn to listen as well as talking

  • You know what? I don't have the emotional energy for all that. Seriously!

    I have the added fun of being bipolar too. I could walk into doctors office with a raging fever covered in a rash, and it would be still all in my head!

  • Sadly I understand that sometimes it is just too hard to take on those battles. I hope one day that you find a Dr who will treat you with the respect and dignity that you deserve.

  • Well done for sticking to your guns, I remember about 2 years ago I had an emergency appointment with my Rheumy consultant and when I walked or hobbled into her room it was one off her registrars that was doing the examination and she said to me as I walked in, what have you got the walking stick for and I replied well without it I wouldn't be able to walk, that set the tone off for the rest off the appointment, what a stupid question to ask anyone , I'm glad to say I haven't seen her since

  • I wonder sometimes why they choose a caring profession if they have attitudes. Sadly I keep hearing more of those sort of stories

  • Well done you and i hope that means your not leaving us.xxxxx

  • No I thought that I needed to for various reasons, and also to regroup and get my head together to fight this, but I can stay now.

  • You coluld have stayed before darling.xxxx

  • Love the photo and awesome job of advocating for yourself!

  • Thanks Nitrobunny the whole thing is we shouldn't have to do that and have to fight so hard.

  • I wholeheartedly agree. In the last five years I've been truly fortunate to have some amazing physicians. As far back as 97 with my initial cancer diagnosis, not only did my first doctor not listen to me, he failed to interpret my labs correctly, nearly costing me my life. My first autoimmune disorder showed up in 2004 and my GP made the initial Dx which proved to be true despite a specialist saying otherwise. I dug my heals in too and found another rheumatologist and received very good care. I ended up moving years later and started the process of building a healthcare team again however I still have specialists that I will fly cross country for. What concerns me most is proper care and treatment for those too sick to advocate for themselves.

  • Yes I whole heartedly agree and it really shouldn't be that hard should it. You have had a tough journey. You must amazing resilience.

    Starting over with Drs is the thing that puts me right off moving! Haha

  • I am so relieved on your behalf SOM. I was so sure as you were it was the wrong way to go, particularly rediagnosing RD, it just didn't ring true with your symptoms. So pleased you eventually had contact with the Rheumy nurse who was concerned enough to bring in the HoR who I have to say by normal standards responded promptly! His thoughts on myofascial pain sounds reasonable & I hope that can be addressed at your next appointment because that's no fun at all.

    Since I returned to the UK I've been seen more regularly by Registrars than my Rheumy, something I've never been comfortable with & with just cause in every case except one, my latest who was I have to say excellent. My previous Consultants never ever allowed Registrars to take the lead in appointments. Whilst it was a university teaching hospital the Consultant was the only one who saw his or her patients. Only if approval was asked for & received was a Registrar included in the room for the appointment & then he or she took a back seat & made notes & occasionally asked questions. If appropriate they were allowed to perform examinations but that only happened the once in my 5 years under that hospital.

    Anyway enough of me gabbing on, as you say a lesson to us all & why I think it's so important to understand how the disease affects you personally, nobody knows your body better than you. I hope the Rheumy does follow up on this debacle & the Registrar is told in no uncertain terms exactly where she went wrong & she learns from this, I suppose it's too much to ask to receive an apology but I do think one is due. I also hope it's the Rheumy you see at your next appointment, it's about time you did see him. Right, onward & upwards & I hope now that leaves you to enjoy Christmas not having to feel you still have a battle on your hands. Enjoy the warmer weather, not envious at all!!!

  • Thanks No more heels. I am now thinking if I don't have to be on biologics I am going to ask if I can go back to seeing him privately. He bulk billed me before so I am hoping he will say yes and I can go back to doing that. That way I cut out the registrars.

    You have a lovely Christmas too

  • Very glad to hear that things have worked out for you.

    I'd like to add that I know a couple of people who do have fibromyalgia (one who has fibro only, one who has it alongside PsA) and as far as I know their condition has been taken seriously and they are satisfied with the treatment they've received. I don't see it as a junk diagnosis per se and it seems to me that understanding of it has at least improved in recent years. But clearly you felt this WAS a junk diagnosis for you, i.e a completely wrong one and you've done brilliantly to challenge it so effectively.

  • Thanks Postie, yes it was a junk diagnosis for me and yes I know it is a debilitating syndrome but I think too many people are put in that box when it gets too hard and then no further investigation occurs. It is just wrong to condemn people to a life of inadequate assistance like that. The unfortunate thing is that outside rheumatology the general practice and A&E Drs look on patients with FMS as drug seeking drama queens and have an unconscious bias in how they then treat them.

  • That's good news there is nothing worse than not being understood you know your body and life is not tick's in boxes that can stick unwanted lables on you welcome back

  • Thanks Junebee. Yes I agree totally

  • That's good news (well, having RA is not preceisely good but you know what I mean). I hope 2017 is a better year for you.

  • Thanks Helixhelix. Yes I know what you mean hahaha You know in the end it may end up I have lupus or something but at the present moment it aligns with RA and at least I will get the correct treatment instead of being condemned to a life of inadequate treatment. Yes Bring on 2017 this year has been one hell of a ride and not in a good way.

  • So pleased you had the strength to sort this mess out, and stay with us. I have been very lucky over the years with my rheumatologist's. I can however emphasise with you. I was in a very dark place last year from the end of August I got a UTI, having suffered with them over the years although not so much in the latter years. I was in a great deal of pain and discomfort, needing to constantly go to the loo, I saw my GP and the dip test said blood in the urine, so was given antibiotics, normally this does the trick sometimes a second lot was needed. A urine sample sent off came back negative, a second one did as well. However the symptoms continued my GP referred me to a urologist, whilst waiting I had more antibox, GP not happy though to prescribe them without an infection. To cut a long story short this went on with tests at the hospital. I lost so much weight as I was convinced everything I ate or drunk affected me. I had to cancel a holiday to the states, it was a tour of New England in the fall. I was just so ill, my family thought I had lost the plot. The antibiotic's gave me constipation and sometimes diarrhoea. In the January I had my ureatha stretched under Anaesthetic, this made all the difference. When I saw the consultant in the February he said I had an infection in spite of the lab results. I knew I was right all a long. But so frustrating. Touch wood all ok now. Just have to persevere when you know your own body. Wishing you a wonderful Christmas and a much better 2017. Hugs G x

  • Oh I can sympathise with that. Mine ended up being kidney stones! I am glad you got it sorted though. I hope you have a lovely Christmas too.

  • Ooh dear you do go through it. Thank you for you wishes. We always have a great family Christmas. Take care xxxx

  • Wonderful. I am having my first christmas with my daughter who I adopted out as a baby. We made contact nearly 10 years ago but have never quite managed to get together for christmas. I am very happy to finally be making it happen.

  • Wow ! That is such great news. So pleased for you. Hopefully now things will improve for you and you can just get on with life.

    I have 5 grandchildren and two great nephews and all of us will be together on Boxing Day, 22 of us round my eldest sons. Champagne breakfast Christmas Day at his, they have 3 boys. My youngest son has 2 girls and they will spend Christmas Day with their mother and with us on Boxing Day. 12 of us at my adorable sister's on Christmas Day.

    Wishing you the best of times. Hugs xx

  • Oh lovely. I have 10 Gkids all together. I come from a large family so if we sll getvtogether you have a whole disco by yourself without any extended family members. Haha

    I have two daughters and had two sons, one died of cancer as a child. I am very much looking forward to having 7 if the Gkids around on Christmas morning. It is always more fun.

    Sounds like you are going to have a busy fun time!!!

  • Sorry about typos using my phone keypad aghhhh

  • I'm really so glad everything has come good for you. It's not the doctors I have trouble with but their secretaries .....I have been waiting since Monday for a reply to an email to a medic I see privately ....when I try to speak to her she carries on as if she is the doctor......& there is no way I can check if she has actually passed in my question to the doctor. I blew it yesterday & have made an appointment with another doctor whose secretary is a normal polite human being who doesn't try to intimidate her boss' patients....I will find a way to tell Doc No 1,why I stopped seeing him.In the meantime will have to see GP before the whole NHS closes down for Christmas.....

    I hope you have a lovely Christmas break with your grandkids!

    AC

  • I have a theory that they go to secretary biatch school to learn to be so incredibly condescending, officious and down right obstructive.

    I hope you get in soon and get what you need. Maybe make an appt with dr no.1 and just tell him how obstructive she is.

    You have a lovely Christmas too.

  • The best phrase I ever heard was by someone not too long ago - it's something like

    'It takes doctors 7years to go through school etc to become one,yet a Drs receptionist 7 seconds to THINK she's one!!'

    Think that pretty much sums up all the bad ones out there,and yes,I know there are some fantastic ones too,but as always,it's the minority that give the others a bad name😀 X

  • That is so true.

  • Unfortunately if I see him I pay him! But Dr No2 knows him & I'm sure will pass on my feelings

    When I was still at work I moaned about an inefficient secretary & said I was going I mention it to her boss....one of the directors said telling someone that was like telling him he had an ugly wifeI!

    Maybe I'll keep Schtum.

    Merry Christmas....πŸŽ€πŸŽ€πŸŽ€πŸŽ€πŸŽ€

  • Hmmmm even still if they don't know they can't fix it either. Not everyone likes everyone and sometimes I think receptionists take a dislike to people. I would still mention how obstructive she 'appears'to be. Maybe broaching it from that point of view may get passed on.

  • It's sorted ...I went to a Christmas lunch & doc No 1 was there ....he said he had emailed me early this morning & sure enough when I got home there it was under business mail....I must get my mail boxes organised...anyway I got a flea in my ear & have to get my arm .Xrayed tomorrow as I'd taken it out of the sling (to get on some decent clothes to go to the lunch.)

    So caught out...but at least the sec must have given him my message! So cancelled doc 2 with the nice friendly sec. I never knew a broken bone could be somuch trouble ! Now got to sleep sitting up with arm still in sling! Go Figure!

  • Oh no. I commiserate, i spent a few months sleeping in an almost sitting position after shoulder surgery earlier this year. Funny though, I sort of got used to it after a while. Glad you had a sort of positive outcome

  • I'm glad you are sticking around here. Your experience and opinions are very helpful.

  • Thanks Suzannedale. I appreciate your kind words.

  • Well done SOM. Let's hear it for the fighters! Have a lovely Christmas.

  • Thanks Stbernhard. It seems to be the only way to get listened to. The whole conversation pretty much went "you have fms" "no I don't" for about 15 minutes. Hahaha

  • Lets hear it for the 'thrans' - ulster or irish word for bloody minded, pigheaded etc lol - good for you it will hhold you in good stead - i'm all for refusing / arguing and wish your the best of luck and hopefully, health. I have it too - him indoors went and bought w/chair 4me for trips, airports etc. Guess what - just back from much needed sun in t'rif e [again] and didn't take it, walking and swimming better than for abt 2 years lol. I screamed at then for taking away my mtx but am doing ok now on ssz. Happy midwinterfest to all, hoping 2017 will improve life for y'all xx

  • Thanks GranAmie. Sounds like you had a l8vely time. I do so m7ch better when I am warm than when it's cold. Have a lovely Christmas.

  • Well done!

    So pleased you stuck to your guns and fought for yourself and what you knew to be true.

    The worry is that some people who are less confident and who don't have this network for support would just roll over and take it!

    Wishing you all the very best. 😊

  • Thanks and yes I agree. That is why I encourage anyone who knows in their gut that what is happening is wrong, to speak up.

    You have a lovely Christmas too.

  • I'm lost in admiration and vastly inspired to continue fighting.

    I've been feeling down as I don't think my Rheumatologist listens to me....she talks at me. Then I had my first appointment with the Rheumy nurse with high hopes....but it was not to be. My appointment was 4.10pm, I arrived 3.45pm. I went in to see her 5.20pm. Throughout the consultation she was yawning and appeared ready to go home. When I mentioned my sore hands with numb fingertips she said that could be a problem with my neck and as for my feet ( after looking at them without my socks on ) she said nothing.

    My Rhematologist popped in to say MRI of hands showed OA only and told me to buy Glucosamin and Chondroitin from Holland & Barretts.

    When I left the clinic , I felt like I was just making up my pain & symptoms.

    Positive note...the current Rheumy leaving and I asked to see my original Rheumy who diagnosed me 3 years ago....but not till April 2017!

    Sorry for rant but I'm hoping 2017 will be a better year for us all to be pain free. Merry Christmas and thank you all for the advice, information and sharing.

    Love & Light πŸ™πŸ»πŸŽ„πŸ’“πŸ˜€

  • Good on you and even though April seems ages away it will fly by. I am considrting going back to mine privately. At least you get seen by an experienced one.

    Have a merry Christmad and hopefully less painful.

  • Good for you! I admire your determination. You know your body feelings and what pain you get. I too have and am having problems with a Reg. I am changing hospitals with the support of my G.p private physio and my Rheumy Nurse.

    Best wishes. X

  • I am glad you are. If we put our car in for a service and it came back worse we wouldn't accept that so why do we accept it from doctors? we are consumers and entitled to be treated with respect. I hope that your new hospital works better for you. I am stuck with this one or see him privately which is what I am going to do.

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