I've been sitting on this for six months. I went to see a rheumatology consultant after moving to Wales. He said he couldn't believe I hadn't tried to come off steroids (I've been on 5mg for 28 years) My old consultant had never suggested that I should come off them. He seemed to dismiss that I had Lupus and said I had Fibromyalgia, which I refute. I have had seizures, pleurisy, depression, sun sensitivity, fevers, chills joint problems and debilitating fatigue, in short, Lupus. My baby died because of my Lupus. I did taper the steroids off very gradually but then had a flare.
It took 13 years to be diagnosed after being dismissed by medics and called 'anxious, hysterical' etc.
The letter he wrote to my GP and copied to me had question marks after what I had said and my list of symptoms.
Now I feel as though I'm back to the beginning. After 40 years of symptoms I am being gaslit again. I'm angry and depressed.
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kt11
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My heart goes out to you. Honestly I have had similar dreadful experiences. I live in South Wales and the majority of my Rheumatologists have been abysmal. I was diagnosed with Lupus in 2009. In 2010 my diagnosis was changed to Bechets, then Low Grade Lymphoma with a potential four year lifespan. I went to St Thomas’s and they diagnosed SLE. The next Rheumy at home said maybe Lupus and maybe Bechets and definitely Fibro which I dispute too. Next a new Rheumy said Fibro and “ hysteria”. The next said no Fibro but UCTD. Due to Covid I have not met my current Rheumy but at least he is treating me for the fatigue, ulcers and pain and he listened to me which is a positive. Which area of Wales are you living? I am so sorry that you are experiencing this appalling treatment too. I know Wendy and Lupus UK are lobbying for a Centre of Excellence in Wales but in the meantime that is no consolation xx
Thank you Cecily. O my goodness, you really have been given the runaround, I'm so sorry. It must have been so horrible and frightening to be given the diagnoses of Low Grade Lymphoma. I live in Abergavenny. Maybe we had the same consultant who is really into Fibromyalgia. I don' think the Rheumys' here like diagnosing Lupus, even though you were diagnosed at St Thomas's Lupus Clinic, and I was diagnosed there too by Professor Graham Hughes who practically invented SLE! 'Hysteria' is such an insulting and sexist word. They would never call a man 'Hysterical' Lets hope for a Centre of Excellence or at least permission to go to specialists in England as there is no provision here in Wales.I'm glad you are being listened to by your current Rheumy. Take care Cecily xx
If you are in Abergavenny I can bet you saw the same Rheumy as I refused to see again after I asked him if he had texted me for APS. He sneered and said so you have read it on the internet have you. I was early into being sick then and said how dare you I cannot work with you and left. By the time I had driven the thirteen miles home he was on to my GP telling her to start me on aspirin as I had tested positive for the antibodies nine months previously 🤬 Over the years I have become worn down by snide remarks and “ lifestyle choices” comments but my new Rheumy is based in Abergavenny and is at least far better than the others. He has me back on Hydroxychloroquine and Colchicine , has given me a years supply of soluble antibiotics, prednisalone and Nystatin to make up a mouthwash which really does limit the duration of the mouth and tongue ulcers. The worst Rheumy I had was at the Royal Gwent in Newport. Ironically he considers himself a Lupus specialist. Initially he decided that I needed to up my Hydroxychloroquine to 600 mg . Then when it caused macular oedema he said there was nothing wrong with me except Fibromyalgia and hysteria whether I liked it or not and added as I got up to leave if you get sick you will prove me wrong 🤯. I got sick a few months later but he had discharged me. My GP fought for an urgent appointment and I saw another Rheumy in Ystrad Mynach who said it was mild UCTD and I should be thankful and get on with my life. It is worse than the pain and discomfort of the illnesses to be so patronised, ignored and ridiculed isn’t it. I will send you a PM with the name of my current Rheumy who might be able to offer you sone support. He is back from paternity leave next month I believe. Xx
I'm so glad you've got a decent Rheumy at last. You really have had an awful time, made so much worse by your terrible treatment at the hands of 'professionals'. Like you say, it' worse than the illness to be treated so badly. Take care xx
Thank you yes it is. I hope that you find a Rheumatologist who finally helps and supports you. It makes me feel so angry and distressed the way we are treated xx
Oh gosh, this is awful. I had a horrible experience yesterday with my rheumatologist, he hadn't read my notes, didn't even have the computer on. Proceeded to diagnose me with fibro, despite me being diagnosed 8 yrs ago! Told me my bloods were normal, I then got a phone call to say I needed the bloods repeated as they had insufficient blood to do them!
Bless you I have had that so often. When I was initially diagnosed by a Rheumatologist, confirmed by a Haematologist I was treated with compassion and respect but as soon as the diagnosis was challenged I have been treated abysmally. Which part of Wales was your private appointment? I am so sorry. I understand the frustration and demoralisation this causes. You need help and are just dismissed. The more you protest and inevitably get upset the more they use it to confirm that you are a typical Fibro patient. Such ignorance and lack of compassion is truly dreadful. Xx
I'm so sorry to hear what you went through and for the loss of your baby. It's so awful when we are treated this way. I live in South Wales and had a private appt yesterday which was horrendous. I don't know where to turn next. We're you referred to St Thomas'?
Hi Cariadrose. No, and that's the heartbreaking thing. just half an hour walk away, Professor Graham Hughes was running his baby clinic, I'm sure she would have survived if I had have gone there.
I'm so sorry you are going through this, the consultant sounds a lot like mine, no notes computer not on....my consultant does private work too. I wonder if you go privately you could complain more effectively as you are spending a lot of money and have been treated shoddily
It's strange that there seems to be a lot of Fibro diagnoses going on . I hope you manage to get the right treatment Cariadrose. Take care xxx
It was a private appointment I went to, I had thought they would be more thorough. I'll wait and see what these bloods show. I have joint pain, dizziness, a rash on my face which worsened in the sun and has left scarring. The rheumatologist was more concerned about past traumas and kept pressing and pressing for me to say I had trauma. I said I had but I wouldn't go into it because that was not what I was there for.
I hope so time in the near future we get a better service in Wales. Thank you for replying. X
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