Suffering in silence due to GP saying it's all in your head!!

Morning everyone has anyone else been told by their gp that the pain is all in your head? I was told this 3 years ago and have suffered in silence since. Until joining this community and reading all your stories now I feel confident enough to go and tell my rheumatology consultant and nurse how I really feel I've been struggling on the meds anyway with only having one kidney they cut me down to bare minimum which I can't believe they thought would help when most of my week was bad days on 25mg meth injections and hydroxy chloroquine twice a day and pain relief I've been given 6 weeks steroids at the minute to try and help me through. Compared to what half the people on here are taking there's no wonder I'm struggling.

9 Replies

  • It isn't just with lupus - a lady on another forum has just said her GP accused her of drug seeking and being an alcoholic!

    I do hope you have found another more empathetic GP - if you haven't it is high time you did. If, however, that isn't an option because there isn't another to go to, I would take someone with me to appointments who knows how I am day to day - whether it is right or wrong, that seems to concentrate their minds, especially if you take a male partner with you. It's disgusting it happens but it does.

  • join the club mine seems to like pushing it on to the Asperger's i have so in my head when i know far more on many medical things that she does as did coaching/sports science and worked with many top end medical people over the years and could make her sit in the corner crying her eyes like a child with things so far higher then any GP know's but i don't!

    Even had an old Quack arguing with what a specialist said like she know's when just come out a med school still scratching her lower bits!

    GP/Quack= Someone that knows a "Little" about a lot but not alot about anything!

    Specialist=Someone that knows a lot about something but not a lot about anything!

  • Hi! Very sorry to hear that. I had a bad experience with my GP too. I was going through a Lupus flare, that flare wasn't diagnosed yet, I wasn't feeling well so I went to the GP who prescribed me Iron tablets for the anaemia I had. I pushed that I had Lupus and that my anaemias weren't just that, it was always Lupus. GP didn't do anything about this, and days later I had a clot in my leg. Thanks to A&E didn't go beyond that. After that I pushed and I was referred to a great group of rheumatologists who saved my life. And they treated it rightly, and what I really had because the Lupus flare: hemolysis.

    So, my advice is: If you think that you're not getting the right care or diagnose, try to change GP or talk to the manager, it is your health and time is very important when we talk about Lupus.

    Hugs and blessings!!

  • Thank you. I'm booked in to see a different gp tomorrow morning I'm hoping she will help me this flare up is really taking it out of me although my husband helps me a lot it drives me mad when I can do even less than normal my eldest son has just made himself and his brother tea cause I can barely stand with pain and exhaustion that makes me feel even worse.

  • I was told I was depressed and put on antidepressants and with a counsellor - I didn't believe I was depressed and ended the counselling after a couple of weeks when it was not helping my physical pain at all! So many of us have had such awful reactions and no help!

  • Antidepressants are given out like smarties these days as a cop out for poor Quack practice and they mess your metabolism up so then you put on weight they moan your fat! well yes because you gave me X! Der.

    Amytrypline is a classic raises T in females lowers in males makes you put weight on.

    Which quack couldn't see yet Chemist said if take these will make you put weight on!

    Know a lady that was on them put her into premature menopause!

  • Thank you for posting that I was on amytrypline not for depression tho I didn't know they used it for that they gave it me to help at night I should ave read the info sheet anyway I stopped taking it as it didn't do anything and just kept telling me to up the dose I got to 6 at night and gave up glad I did now you've said that. We basically have to have medical knowledge before visiting a gp it's best to tell them what's wrong. And yes I've put loads of weight on they didn't mention that either.

  • For ten years my GP insisted I had stress and anxiety. All the aches, pains, rashes were put on my notes that I was psychosomatic. I tried all the latest SSRIs to no effect, and one, Prozac that made me feel suicidal. I was put through counselling, which I dropped after several appointments on the recommendation of the counsellor, who could see my condition was physical, not mental.

    I think my GP was so focused on my mental health she refused to consider that there was actually something seriously wrong. The worst thing though was that I trusted her and never questioned it, the old "doctor knows best" syndrome.

    Eventually we moved home and changed GP surgeries and a new GP saved my life by referring me to a rheumatologist.

    I didn't care that I had lupus, just that it was proved it was not in my imagination.

    I am sure there are many on this forum who share the same experience, and sadly posts I read now show that it is still going on, it is disgraceful.

  • The thing is that GPs are just meant to be the gateway to specialists - not to show prejudice and look for evidence to support this. And of course if you feel doubted then you exhibit behaviour that further supports the prejudiced doctor's mindset. I think the only way to get anywhere is to research your diagnosed condition - if you have one. If not then research the ones that your symptoms most correspond with. Knowledge is power and key to self management.

    If a doctor makes you feel like a hypochondriac or believes you are someone with a psychiatric disorder, and you don't believe they are right, or think there's more to your symptoms - then pin them down, stare them right in the eye and demand that they explain why they believe this to be the case. If their reasoning appears to have validity then ask them how they plan to help you address your so-called psychological issues. If not, and you feel they have belittled your problems, then write to the practice manager saying so.

    If you have been diagnosed with Lupus then it is possible that you have secondary fibromyalgia but I don't think a GP is qualified to diagnose this. Or maybe they are but I don't think I'd accept it for myself unless a specialist confirmed it.

    Lots of people get prescribed Amitriptyline for many different symptoms including bladder control and nerve pain . It's not really used for depression these days because it makes people too drowsy at the high doses required for it to work as an antidepressant. It worked really well for three years for my nerve pain but finally gave me severe heart palpitations so I had to stop. I miss it a lot.

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