So in May 2010 I was diagnosed with Lupus. Several years ago I queried Fibromyalgia with all the symptoms I had but was told by the Rheumatologist to go away, read up about it and go back to my GP! I couldn't believe what I was hear and just left it and carried on. In March 2023 the Rheumatologist (a different one as they usually always are) asked if I had every been diagnosed with Lupus as my bloods had been good for a while! Really! And had they ever diagnosed Fibromyalgia! Really! After having my meds changed and not feeling with whatever I have and the menopause I was absolutely broken. I saw the Rheumatologist again as I really wasn't doing great (I managed to get a cancellation) and she explained that long term auto immune conditions can turn into Fibromyalgia! I've never heard that before, has anyone heard that before? I just feel toally neglected as I don't get yearly reviews on my medication or on how I'm doing. At my last Rheumatology appointment I was told to reduce my Hydroxychloroquine by half and I wouldn't need my bloods doing next tume, and that Ophthalmology don't do the eye test any more so go to an opticians and pay to have it done! And we now have trouble getting our medication! It is just unbelievable and soul destroying tbh.I was asked to try one of two medications that I had had 10 -12 years ago which I was dubious about as I must've had issues with them (as I hadn't been on them for long) but I couldn't remember why and the Rheumatologist said there was nothing on the system to say I had any issues to which I was annoyed to think someone didn't bother to note down my issues. I was asked to try it for 5-6 weeks then it would be reviewed. Prior to starting the medication I sore a GP, she asked if I had started the Duloxitine and I said I thought I was there to discuss which medication I would try and if there were any previous issues as they must've been prescribed for my Lupus in the past, she replied it had already been prescribed and was waiting for me to pick up. I had weaned right down on my Gabapentin ready to start the new medication the following week but when I went to collect it, it hadn't been prescribed so again I was very frustrated and not feeling well at all, let down yet again. I really do despair! I really don't know how I carry on sometimes. Why is it just so difficult all the time?
Apologies for the very long post but I guess I needed to vent and see if it's the same for everyone....I do hope not. 🙏
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smudge
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I completely understand the feeling of neglect and my journey is very similar to yours.
I was diagnosed with Lupus in 2016 after about 5 years of going back and forth to GP and being sent to A&E. HCQ prescribed at 400mg which helped a little a got my life back on track.
In 2021 I had a huge flare and still haven't recovered. I hadn't had a routine appointment or any other for that matter(!) since 2019. I was finally given an appointment in Feb 2022, with a new Dr who told me I should reduce HCQ and start Duloxitine as he thought I had Fibromyalgia not Lupus, he came to this decision without blood tests or scans just by meeting me for 5 minutes. I disagreed and asked for blood tests and a scan of my neck as I was having so much pain and trouble swallowing which he told me was anxiety.
I got the scans which showed a 4cm thyroid cyst pressing on my throat and 2 herniated neck discs. Bloods showed low C3 & 4.
I asked to see another Dr and in June 2022 I was feeling worse with mouth ulcers, face rash, exhaustion, saw another Rheumatologist who said I had 'probable lupus' and said I could continue on HCQ if my eye test was ok. I'd never had one before. It turned out fine by then eye Dr told me I had to reduce HCQ as it was 'bad for me'.
Now it's a year later and things are even worse, trouble with rashes, ulcers, pain, heart rate issues, pain, exhaustion and I've literally cried down the phone to rheumatology nurse.
Still no appointment
I honestly think they reason they changed my diagnosis based on a whim was because they'd done no routine monitoring for years or followed guidance for treatment of Lupus.
Now I am making a fuss and sending photos of the rash to my GP and hospital they've changed diagnosis back to Lupus, still not actually seen me though!
I'm so sorry this is happening to you, I understand your despair.
Don't give up fighting to feel better, you deserve to feel better.
It's disgraceful how you are all being treated - can I ask have you had your thyroid checked because I am a Lupus patient but my main issues were brought on by low thyroid hormone. PALS I find are weak although I suppose you would get your point across that Drs. are treating you badly. Good luck
Thank you I think we all need it.No I don't think I have, I don't recall my thyroid be mentioned before. Worth checking I guess. They don't even check my vitamin D level anymore.
I copied in Healthwatch when I emailed PALS. Worth doing but they said they only had a few staff. If they receive similar comments from different people they can influence things I think.
Compliants worked the best even though I had not emailed them. More staff, great contacts with top managers etc.
Sorry to hear your story, it sounds so frustrating. I have lupus and secondary fibromyalgia. It is possible to have both, I’ll share my story in case it helps.
I was diagnosed with lupus in November 2019, the rheumatologist used blood results and symptoms to make the diagnosis.
I started hydroxycholorquine but that wasn’t controlling it, so went on to methotrexate and also Celecoxib on bad days.
It was mostly fairly stable, but when it wasn’t I also had steroid injections to help me out and keep me able to work.
In the winter of 2021 I had a big flare and couldn’t stay well! I had my steroid injection (which in the past had always guaranteed at least 6 weeks of feeling a bit better) but that didn’t work, also tried steroid tablets that made no difference. It was a really rough time as it was a very busy time at work for me and I couldn’t stay well. (I was a general manager so my job was pretty stressful) in the end of had to give up my job because the only thing I could think was that the stress was making it worse, and I was taking all these meds and nothing was helping!
By the spring I still wasn’t any better despite not having the stress of work. I started noticing that the symptoms during this time were a bit different to normal, more neurological, legs itching, feeling like things were crawling on my skin, left arm suddenly not working but then being absolutely fine 5 hours later. Very dull pains that would move around my body. Amongst many more! I had also started a head twitch!
I went to my rheumatologist (desperate!) and she said she thought it was secondary fibromyalgia and told me about 25% of people who have lupus went on to develop secondary fibromyalgia. I also had an appointment with a private neurologist, so she suggested I explain my symptoms to him and see what he thought. He sent me for an mri and when that came back clear he also said it would definitely be secondary fibromyalgia. I had never even heard of this but was pleased they both were on the same page and someone understood what was happening to me.
My rheumatologist explained that steroids don’t work for Fibro and you need to take anti depressants that help stop the brain. signalling.
I recently tried a trial off my methotrexate but all my lupus symptoms came back in full force so I had a steroid injection which worked as it was the lupus causing problems, and am going back on methotrexate. I have found that acupuncture has really helped with the fibro, I have a great Chinese doctor for the acupuncture who gives me all sorts of herbal meds too. That has been such a help! And I also find a Thai massage every few months really helps if you can.
Apologies for rambling, hope my story helps a bit and hope you can get the help that you need.
Keep pushing to get the answers, help and support you need. I know it’s exhausting.
Oh my you have been trough it! Sorry to hear sbout your journey but Glad it's getting better for you. We certainly are warriors!I was initially diagnosed with Lupus and then Sjogrens too. Then the change of more like Fibromyalgia!
It is frustrating to get the medication and help we need when they know what we have let alone when we don't. I would say it's all that stresses me out 🤦🏻♀️
I relate to all here you and your replies from others and agree its scary. The only thing id be wary of is pals, it seems only right that there is somewhere we can get heard and you'd think it pals but after I made a complaint a fair and just one, about rheumatology from that day my treatment or I should say lack of changed. I used to think I was paranoid but even other departments id seen were great until all went back to rheumy then seeing them again I was treated totally different and I suspect al relates back to that and I think has clouded the whole of my journey which is ongoing. I went back to pals and spoke to someone and said of this and her words were you didnt hear this from me and it shouldn't happen but sometimes yes a complaint will go against you. From my point of view there is corruption and neglect in everything and nhs im talking of is no different, if you experienced what I have you would understand and I have suffered neglect for certain except from one department. I would not want to be treated at this hospital by same department and I fear my deterioration is from the neglect as a result of this but I cannot prove anything butforall the good docs there are this is very sad as in any walk of life and I don't want to generalise but health is one area this just shouldn't happen
Thank you for your feedback but sorry to hear this happened to you, is certainly isn't ok for this to be happening.I also work in the hospital that I have treatmant at! Maybe if I wait to do a survey or feedback!
It's difficult as it's all different for different people and different areas but it most definately is something to be wary of. If I had my time again would I complain? I don't know thats tough to answer as I had every justified reason to make my complaint so yes most definitely but to be led this unjust drama and my health suffering as it has then definitely no morally.My only fear and why I answered is that there seems to be some wrong in health systems besides all the good , but health setting is not a place for wrong doings and there's nothing we can do about it but just to air caution and put your health first ,it doesn't make it right and yes a complaint should be able to be made where its needed but I wouldn't want it to happen to anyone else though undoubtedly it has, but one less makes it worth airing.
Gosh, change your Rheumatologist! We have to stand up for ourselves and if the care isn't there then find a new one, even a new hospital. I am lucky I am going to a Lupus centre of excellence under the nhs at Bath Hospital but I know others are not so lucky. I would say travel a bit if you have to to find a Rheumatologist who knows what they're talking about (I travel just under an hour to Bath). With Lupus we have ups and downs with blood tests, I am negative for all at the moment but have all the symptoms still of Lupus and Sjogrens. Fibromyalgia is just another syndrome that runs alongside other autoimmune conditions, Lupus does not morph into other things, other conditions can spring up because you have Lupus. I have just been diagnosed with Fibromyalgia as well when I thought it may be peripheral neuropathy but she said if your pain comes and goes quite quickly and you seem to feel pain more than is proportionate to the injury etc.. then its Fibromyalgia. My Rheumy is sorting out physio and occupational therapy and dermatology for my skin rashes. This is what you should have a complete approach (including your eyes, especially if you're on hydroxy, every year you should be tested because of the eye damage).
You need to educate yourself on all the latest info to do with your conditions. Listen to podcasts on Lupus uk and the Royal Institute for Rheumatic Diseases in Bath (BIRD) have many podcasts on Lupus and Fibromyalgia. Join a group near you from Lupus UK (if you haven't already), they are so supportive and helpful especially when looking for a good Rheumy in your area. We have many talks on zoom from experts in the field in our group. Be your own advocate, don't take a poor service with healthcare, its your life you're fighting for after all. That's why we're called Lupus Warriors we have to fight for a good service of care as well as fighting our condition. See a sympathetic GP and find out if you can go somewhere else for better care. Research hospitals and what the Rheumatologist's specialise in. I feel for you that you have had such an awful experience. It really seems below par. Good luck
Thank you for your advice much appreciated.I think I need to fight more than ever as I feel I lost a lot of precious time in the last 15 years of my life by locking myself away more often than not and I refuse to lock myself away anymore as I've missed out on so much.
I think I will enquire at another hospitalas I have seen most of the Rheumatologist here and I'm not impressed by any of them tbh.
Hi Smudge, I am so very sorry. I too was diagnosed with Lupus in 2009. Then in 2010 a new Rheumatologist said not Lupus but Bechets. Next they diagnosed Low Grade Lymphoma with a life expectancy of 4 years!! I then went to a Lupus Centre of Excellence who said definitely Lupus. Six months later my diagnosis changed to UCTD and Fibromyalgia. Then MCTD and Fibromyalgia. Then Fibromyalgia and “ hysteria”. Then no Fibromyalgia but mild UCTD ..go and enjoy your life . Now it is highly indicative of Bechets but not ruling out Lupus and Fibromyalgia. I am almost scared for the next appointment in case once again it changes. I think you have a right to get a second opinion but my advice would be to get one at a different hospital if at all possible.
Our journey through chronic ill health is never easy it seems but this wonderful community will help you in ways that you just cannot get anywhere else because we all understand. Be kind to yourself xx
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