So I’m sure you have loads of people posting on here about their frustrations with the NHS/GPs etc. therefore I won’t bore you with all of the details.
My journey began in Dec 22 with what I thought was a bout of viral infection-induced joint pain in my hands. Fast forward 11 months and I still have the joint pain except for now it is in my wrists and feet in addition to elbows, shoulders and occasionally knees. It’s generally worse when I wake up in the morning but I am sometimes woken up in the night too.
I have been experiencing hair loss too for the last month or so 😢 which as all of you probably know, is quite upsetting. There have been other things too but as I say, I won’t bore with the gory details!
Needless to say, I’ve been getting pretty much nowhere with my GP (I’ve recently changed because my previous GP just kept on recommending kimchi to me and I was eating so much of the stuff I thought I was going to turn into pickled cabbage 😅) it got quite frustrating! I have been told that it must be hormonal/leaky gut syndrome/stress/fibromyalgia. I have tried gluten free diet/high fermented food diet/
Beef-free diet/dairy free diet > all at the recommendation of the GP. None of it has really worked.
I am fortunate enough to a)work in a large hospital and was able to get some blood tests done by a rheumatologist (ironically one that decided I had fibromyalgia without even meeting me in person let alone examining me or running any tests and b) had the means to pay for private blood tests too (this was before the hospital ones and it was these results that allowed me to convince the rheumatologist to do some blood tests of her own. I also had an ultrasound of hands and feet with showed generalised inflammation.
The tests didn’t reveal anything glaringly obvious I don’t think. But did show ANA + 1:320 homogenous. Low C3, low C4, low IgM and slightly elevated CRP. I d/w a colleague at work who was the first one to suggest ?Lupus (I thought maybe rheumatoid arthritis as that runs in my family). To be honest whenever I hear Lupus it makes me think of House M.D ‘it’s never Lupus!!!’
So anyway, I’ve been trying to reach out to my GP and also trying to get the hospital to send my blood test results to my GP so that he has them and can hopefully do something to help me however so far, I feel like they all think I’m a crazy hypochondriac. And maybe I am but this joint pain just isn’t relenting so my gut is telling me that something is going on underneath the surface.
I guess what I am looking for is either ‘quit while you’re ahead because it sounds like you are crazy’ or ‘keep bothering your GP because you might be onto something’
has anyone else experienced these symptoms and / or this much difficulty with medical practitioners?? Should I keep pushing and if so, what more tests can they do??
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Rocinante_89
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You’re not crazy but gaslighting is common amongst lazy/incompetent medics!🥹😱 ( to make us all sound crazy and doubt ourselves? )
There are some certainties 🥹🧐?? with lupus diagnosis, treatment and the whole process of even getting a proper one to start with! Why?
IT’s most irritatingly difficult and very frustrating :
1. GPs as generalists usually never diagnose lupus unless exceptionally well trained and/or experienced, hence they need to refer you to a consultant physician who knows all the relevant tests for a definitive diagnosis!
2. Hence GPs should be largely seen as our “gatekeepers “ to refer us on to more knowledgeable and specialist medics! Or it will be a total merry go round of umming, aahing and more head scratching by them!? Sadly too many of that ilk around.
3. Lupus has myriad manifestations of all sorts: tissues, organs, organ systems etc and even then lupus affects us all differently hence the need for referrals!
Keep records, take photos, keep a “ lupus” diary. Many lupus type rashes can come and go/wax and wane, hence the need to document all our signs and symptoms.
WE loopies all seem to have different journies!🥹😱
BTW never quit and give up ⬆️! We all here need professional quality answers to complex medical questions.
Keep going, you’re not crazy, it’s worth pursuing! Welcome to the forum, glad you’re reaching out and seeking answers for your questions. The pain you’re going through is valid, you’re not exaggerating it, but unfortunately many of us have had our symptoms minimised or altogether dismissed! Don’t let that put you off; your suffering is genuine and you deserve answers.
The rheumatologist is the go-to specialist for lupus, RA and similar autoimmune diseases. A word of warning: it can take a long time to get a diagnosis, so don’t let the wait put you off. It takes lupies an average of 5 years to get a diagnosis of lupus. But some take longer: mine took 8 years! That’s because lupus often masquerades as other stuff, and because many tests need repeating; they won’t diagnosis on the basis of a one-off result, but instead look for a pattern of results over a period of time. They also diagnose only once they have ruled out everything else.
It takes forever, but it’s worth it! A diagnosis gives you clarity and credibility as a patient, confidence for your doctors, treatment options and prognosis info. I found it immensely helpful just to have a name for the madness!
hi, the advice you have been given has been great, just keep a log of everything that is going on with you but keep pushing for a Rheumatologist appointment, it took me 10 years to get diagnosed, I had many strange illnesses over that time, but it took a skin biopsy the last time, I guess I was in the right place at the right time. My bloods never showed anything when I got them and my Rheumy is a stickler for bloods. Hang in there, it’s not an overnight diagnosis. Xx
Thank you everyone for your replies! I’m actually so shocked that it has taken many of you such a long time to get a diagnosis! It must have been hell. It has obviously only been a very short time for me so far in comparison and I’m already climbing the walls and ready to throw in the towel 🙈
But I will not throw the towel in just yet and will keep persevering with my GP! So it has actually not really helped that much I’ve found, in terms of going for private blood tests and reaching out to a Rheumatology specialist at the place I work at. The reason being is that my NHS GP won’t accept the results from the private GP (I gave them a print out of my results) and then when I did the same thing with the Rheu consultant, she arranged her own blood tests but then never shared them with my GP. So until those results are shared, technically my GP doesn’t have much to actually go on! Although I know the results so that has been useful, the way the NHS is sort of set up I guess, has probably made it more difficult for me in some respects. I really don’t know 🤷🏻♀️ it’s all a bit confusing. I may have made things worse for myself!
Sadly your post is not unusual. Have you written to your GP…..telling him/her briefly what you say here? If you have hard copy of your blood results, include them in your correspondence.
When you are being given the run around, putting it in writing cc the practice manager often gets things moving.
Hi Rocinante, firstly you are sick and sadly many GP’s and Consultants will not try hard enough to find the cause or diagnosis. Most of us here will have been through years of medical gaslighting and indifference before we get a physician who will listen and try to help. I was diagnosed with Lupus fairly early on in my ill health but then had the diagnosis overturned by a new Rheumatologist, only to be reinstated by the third Rheumatologist and it continues to this day. My symptoms remain the same, my treatment has altered.Are there any Rheumatologists at your hospital who specialise in Lupus or other Autoimmune Diseases? If not look for your nearest centre of excellence and request your GP does a referral based on your blood results and history. Don’t doubt yourself or give up. It is not in your head, they just need to find what is wrong.
Firstly never give up. This is why Lupus is called the great pretender as it mimics so many other things. Have they done a dsdna blood test?, that is more specific for lupus so I was told. If not it might be worth getting one done. By your GP of course.
I have been fobbed off by so many GP's regarding my lupus and most of it down to, I am assuming their lack of knowledge. Go armed with some facts and be firm.
Good luck and keep us all posted. This group is amazing for support.
Welcome to the LUPUS UK Community Forum, I hope you are finding it useful so far. I am sorry that you feel your GP and Rheumatologist have not been helpful.
As another member mentioned below, there are centres of excellence around the country and their Rheumatologists are specialists in lupus. Your GP can often refer you, although, as you probably know the waitlist can take time. However, you can see them privately, if you have the means to do so. I have attached a link to the ‘centres of excellence’ page on our website below:
You have had lots of good advice already and I just want to add that it is worth asking your rheumatologist to also run a blood test for the anti-C1q antibody. This test is often overlooked, even by the 'best' drs.
I had this test after 18+ years of sickness and symptoms like yours and my test was highly positive. I was then diagnosed with a rare form of vasculitis which causes symptoms like lupus (urticarial vasculitis syndrome). My low C3 & C4 backed up this diagnosis. My CRP and ESR were never raised. I'm treated with Hydroxychloroqine.
It has been a while since I’ve been on here as I’ve been so busy at work and I’ve not been well. My job may not be so compatible with my health at the moment but there has always been a level of expectation to push through the pain as our patients need us. I think I’m so used to pushing through the pain now.
Anyway, I saw my GP again a few weeks ago and he finally had the results from the Rheumatology dr at my hospital and he examined me too! So I had an urgent referral made and I have an appointment next week. I admit, I was so relieved to get that letter!
If anybody has any advice on what to expect from a first appointment then I would really appreciate 😌😌
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