Next step?

Appointment didn't go well - no referral, no pain relief offered and I've made to feel like it's all in my mind.

Blood results all not back in but the Lupus negative therefore in his eyes is categorically not any form of Lupus. 10 years ago they pushed me down the CFS / depression route and I didn't agree with that at the time but you think your doctor knows best and you're so exhausted that you can't question their decision. All they offered me for CFS was CBT which made me worse.

This episode is far worse than any other but he didn't want to listen - my joints are affected but he didn't even examine me - just looked at my history and surprise surprise...are you depressed?? His clinical decision is based on my past history and from asking pretty stupid questions about 'are you depressed'. Not depressed but pretty well I'm the way to being there, I am pretty upset that he hasn't listened to me and offered any kind of next step apart from now go away and think about it for a few months and if you're still no better, come and see me.

My partner is fuming, he cannot believe how my GP was so dismissive without all of the facts to hand. We were ushered out of the consulting room before I had finished asking my questions and the next patient was opening the door to come in. All in all, not a good day.

Not sure what to do next - I know my body, I'm not depressed, I know it's not CFS or a virus or in my head. I welcome all thoughts and advice as I feel like I've been backed into a corner.

Thanking you all in advance.

C

16 Replies

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  • Just wanted to say I've had the exact same experience, in fact I think most of us on here have been told we're depressed, anxious, need a psych referral. Made me absolutely crazy with rage but also more determined :-) I switched GPs until I found one who was more sympathetic - and I recommend actually telling them that ie I've been ignored by Dr X so I'm looking for someone who is willing to help me'. I did find a GP who has been excellent but in the meantime I also paid to see a rheumatologist privately, who treated me on the spot and said they wanted to see me in their NHS role. Once I told the GP that they were happy to refer me. It so should not be like that but for what it's worth that's what worked for me. Hope you get some help soon xx

  • Hi LuckJC,

    Thank you so much - sometimes I feel like I'm alone but this site has made me realise that I'm not so thank you.

    I definitely think it's time to take charge, I'll see about going to a rheumatologist privately - I didn't know you could do that! You have made me feel so much better knowing it isn't just me but also heartbroken knowing that I am not the first but I also won't be the last made to feel like an inconvenience.

    Thank you from the bottom of my heart

    C xx

  • Hi Charliebear68,

    It may be worth looking at changing to a different GP to see if they will be more understanding. Hopefully they would be happy to refer you to rheumatology for further investigations. You can find more information about changing GP towards the end of our article here - lupusuk.org.uk/getting-the-...

  • Thank you Paul - this is really helpful

    C

  • Hi. Sorry to hear that. You know my doctor did that too. He only checked from my blood test result. When I said I got hair thinning he didnt really concern about it and said it was okay. I think its because lupus attacks everyone in different way and theres no drugs right now that used specialty for lupus. Lately Im searching about the alternative way to cure my own body. I got an advice about anti inflammatory diet. I dont know it will work or not but I will give update about it.

  • Hi Babymilo,

    Im so sorry that you have also had the same experience. The more posts I read the more you see that our experience is more the norm than not. I know I'm really frustrated at the minute because I can't do anything I want to do! However, I'm more determined now to get some kind of answers.

    I'll keep an eye out for your updates on the anti inflammatory diet - good luck!

    C x

  • Yes maybe we cant depend on doctor. We have to be active looking for answer by ourselves. Dont worry my aunt has lupus too even worse than me at the beginning but now she is so okay and even better than me. It means that we all could get better.

  • CharlieBear, late to the thread, but I just had to respond to you. The others have given you great advice, and I hope some reassurance. When you consider the average diagnosis of Lupus is around 7 years, I think it reasonable to say, that most of us have been/experienced the dismissals by medical professionals.

    In my case diagnosis took nearly 12 years, I was fortunate that I had a fantastic GP who never wavered in his belief that I was suffering with something more than depression. I have a history of depression, and my experience was the moment consultants saw that, they were closed off to even remotely considering there could be something else.

    I admit the journey was long, arduous and many times I wanted to give up, I got to know how appointments were going to pan out, by the looks these consultants look and general demeanour. If they did not look up as I entered the room, or had a glazed look on their faces, or as in one case, looked at their watch as I was explaining something, I knew was wasting my time and theirs.

    I may have many medical conditions, and I am very finely tuned with my body, and I knew that I could not feel this awful for no reason, it was stubbornness and tenacity, mixed with a lot of indignation that kept me determined to pursue for a diagnosis, I ended up with 3 primary, and lots of co-morbids.

    Key in all of this is solid support from your GP, so I agree with everyone else, find a GP who is willing to listen, who you find approachable, but most crucial, is if referred to a Rheumatologist, try to find one who specialises in Lupus/mixed connective tissue disease. It is also key that said Rheumatologist is prepared to take into consideration your physical appearance as well as any blood results, blood results do not always depict what is really going on with you.

    Sorry for my waffling, I just want to offer you loads of support, I know how draining this journey is, it can leave you feeling alone, sad, angry, lost and defeated, I would say for me indignation and anger became my friend, they spurred me on to get someone to take me seriously, and that happened on what was in all liklihood going to be my last chance saloon referral, to Rheumatology, where I had been already, who dismissed my aches and pains as psychosomatic due to being depressed.

    I saw a lady Rheumatologist and she had me diagnosed and under treatment within 15 minutes, and has been of immense strength and support to me. Happy to privately PM you her details if you would like them.

  • Aww bless you - you've been through the shredder. Your strength gives me such hope and I would be delighted if you could let me know her details.

    C xx

  • Yes, shredder good analogy, but look, still here, still fighting, and if my experience helps you, or anyone else, that fills me with joy.

    Privately messaging you with Rheumatologist details.

  • I like your reference to CBT - it seems to be the new wonder therapy according to many GPs... I've had 5 lots of it and at one point asked the GP when we could say that CBT does not work for me and start to look at other treatments. He said he could refer me for more CBT and up my dose of amitriptyline. I declined the CBT and although I let him increase the meds I recently took myself off it - I noticed no difference in my symptoms after. I had taken it for about 5 years with NO follow ups with my GP. Scandalous really. When I went once because my repeat prescription said I was due for a review I was made to feel that I was completely wasting his time.

    I have no diagnosis as yet and only saw a rheumy for the first time last week. This referral only came about because a blood test finally came back positive - HLA B27. I have many lupus symptoms but stubbornly negative bloods. The rheumy x-rayed me and did a few blood tests. She said the symptoms I describe fit ankylosing spondylitis and Sjogren's and she asked if there was any family history of "anything like lupus" so we will see what happens at my next appointment...

  • You mean your GP decided that your problems were entirely "in your head" - and that a psychotherapeutic approach would cure your problems?

    When a patient has the symptoms of autoimmune disease they need to see a specialist for ruling things in or out - not have a GP wasting time which may lead to more serious damage.

    Once you have a decent diagnosis I would go to the effort of filing a complaint against a doctor who was so lazy and make every effort to find another practice if necessary.

    Been there, the GP concerned nearly killed my husband with his apathy and had I not walked out would have left my older daughter suicidal. Moving practice was the best thing I did. I was too overwrought to complain though - I have always regretted it.

  • Yes - that is exactly what I mean :) I've had the "anxiety / depression" tag associated with me and it is very hard to shake off... Hopefully now getting somewhere, but if no luck with this rheumy I will be going straight for a second opinion. You don't really need to be battling with your GP when you and / or your family need medical attention. Forums and the internet mean people are now questioning GPs and not just taking their word as law.

  • My GP insisted he had no idea what was wrong for 5 years purely because my blood markers were normal. He never said "all in your mind" but I did get the "at your age..." - I was a whole 51 at the start! I knew there was something wrong - but when I did work it out for myself I went back to him. At least he referred me - to a prat! Had I seen one of the part time women I would have been sorted years sooner - but she was on maty level half the time and when she was there, appointments were like hen's teeth!

    Never mind - now I have access to 2 lovely women GPs who treat me as an equal most of the time. And a system that means you see you them same day. :-)

  • ha! I was 18 when my problems first started after a severe case of glandular fever. My mum came with me to appointments in the end as I was being fobbed off. She suggested lupus and the GP's response was "If we are going to talk witchcraft we may as well part company now"... He told my father it was all in my head although he never said so to me. Through successive GPs I have been treated as though I am making it all up, although no one has questioned why a previously very active 18 year old was suddenly practically bed ridden and why I would imagine all this stuff for my entire adult life! Or why these symptoms are very prevalent on my maternal side - or why when we were contacted by cousins I never knew I had as their mother was given up for adoption as a baby one of the first things they asked was "Is there any auto immune illness in the family?!" Totally independently of each other we have all imagined the very same things! Amazing!!

  • Oh my giddy heart!

    Thank you guys for the information on your experiences - what an eye opener, I most certainly will be looking for a new GP ( thank you Paul for info on how to go about it). You wonderful people are utterly amazing and are giving me the strength to carry on fighting - I have to admit that I was losing hope.

    I'll keep you posted on my 'journey' (crikey, I hate that blinking word!) Please keep on posting with your advice - it really does make a difference.

    Hope you have a restful and pain-free weekend,

    C xxx

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