I’m having an extremely difficult time getting any doctors to listen to me. I have been struggling with my joints now for around 6-7 years.
I have been seeing GPs and the like for all of this time and the answers have always been the same, there’s a potential I have arthritis but because my Rheumatoid factor always comes back negative they just shrug it off and tell me to come back if the pain carries on.
In the past year my symptoms have gotten progressively worse to the point where I am struggling to maintain my day to day activities - I won’t bore you all with my list of symptoms because there are many and I’m sure they will all sound very familiar.
This year, I asked my GP to investigate lupus as a possibility. The GP agreed based on my symptoms and sent for some generic blood tests (ana etc) and put me on a waiting list to see a local rheumatologist. Initially I was told it would be a year before I saw anyone.
I then took the initiative to see a private rheumatologist because I thought if I paid for my healthcare I would get seen quicker and I was going to get a higher level of care. This ended up being a false belief.
The private doctor in a nutshell didn’t believe anything I said, despite having a positive ANA result and most text book symptoms, he was convinced I did not have Lupus, or ANY kind of rheumatic issue. I kicked up a little bit of a fuss and he said “MAYBE” I could have fibro. He ordered me some more Lupus Specific blood tests and I never saw him again due to his rude attitude toward me making me feel like a fraud.
I had the blood work done and I got a cancellation to see a rheumatologist on the NHS. I went to this appointment very confident I would get some kind of diagnosis - even if not lupus.
At this point in my journey I had documented symptoms for over a year. A positive ANA test, a positive DS DNA test and my Ck levels were in the “high normal” range.
This particular rheumatologist was even worse than the last. He informed me I did not have any kind of illness to be worried about. He was not convinced I was in any significant pain and he also informed me that “even if i did have lupus” his treatment plan would not change.
His treatment plan consisted of me taking up more exercise. No painkillers. No steroids. Nothing. I asked him why he thinks im in so much pain with my joints and he said “sometimes that’s just the way it is and we can’t do anything about it.”
I was very frustrated by this point as I feel like no one in the world will believe anything is wrong with me. What am I doing wrong? Is it just that a doctor will not diagnose something they don’t have much knowledge on? I’m aware it isn’t very well recognised in the UK.
Any advice would be great. I feel stuck.
** ADDED DETAILS**
I didn’t expect such a massive response to this post and I would like to clear some things up.
The exercise suggestion from the second consultant wasn’t helpful because I am already a very active person, which I explained to the doctor. I am in good shape and I am an avid gym-goer. I have had to alter my gym routine due to my joint pain but I am still very much active in my spare time and in my full time job.
I am currently on a round of 500mg Naproxen x2 a day (Prescribed by GP) to combat some swelling I have in my knee, but the consultant didn’t suggest anything I could try after this - I understand that long term use of such high doses of NSAIDs can cause stomach perforations but he just shrugged it off and said after my course had run through I should just continue to take over the counter ibuprofen. He also denied my request to potentially look into having cortisone injections, because I didn’t have any/significant swelling - I suggested this may be due to the Naproxen bringing it down and he still said no. The Naproxen has removed the majority of the swelling in my knee but has done nothing for my pain, my joints are incredibly uncomfortable.
I would also like to clear up the idea that some people have suggested that I am adamant to get a Lupus diagnosis. This is simply not true. This is just what I have suggested to my doctors - if it turns out I don’t have Lupus, then that is fine but I would like to know what IS wrong with me if not that. It is not normal for anyone to be experiencing the symptoms I do and to be in this much pain for “no reason”.
I hope this helps clear up any confusion.
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Firstly I am so sorry you are having such a difficult time. Regrettably this is all too common.
The main suggestion I have is to find a specialist in Lupus (rather than a general rheumatologist). Even if you have to travel it will increase your chances of finding a way forward.
Go armed with a good understanding of the BCR guidelines for LUPUS and all the evidence you have on how you meet the diagnostic criteria for LUPUS.
Please stay in touch with this forum and my best wishes go with you.
I understand your frustration as I am having the same problem. After no appointment with my lupus consultant for nearly 2 years I was given one due to me keep calling. This was such a waste of time as my original doctor had left so I was now under a new team, I was been check by the “ lupus nurse “ who was clueless as she was checking everything except lupus issues even after telling and showing her the legions all over my body.The doctor came in and did exactly the same thing whilst asking the nurse to repeat what she did.
Nothing was actually done and my symptoms had gotten worse also the pain in my knees is unbearable. I was told by my original consultant that I also had arthritis the new doctor claim not so. I am so fed up with these doctors, consultant as they do not listen to the patients.
I’m really sorry to hear this too. I agree with jimbo1605 that you must keep pushing for a solution. My suggestion to add would be to ask to see a different GP at your surgery and push for another referral as jimbo1965 suggests - until you get a definitive diagnosis and treatment. In the meantime, be kind to yourself.
Sorry you have had to go through all that, it took 10years for my diagnosis so I understand completely. You are doing all the right things you just have to keep going I'm afraid. As the others have said try a new doctor and find a lupus specialist if you can. I don't know where you live but the QE hospital, Selly oak Birmingham have a great rheumatology team I would recommend (Dr Derrett-Smith). I wish you all the best
The NHS doctor I saw, when I went to the rheumatology section there was a Lupus Centre of Excellence placard in the window. This was the City Hospital (Birmingham) which only adds to the frustration I’m feeling x
Any doctor who chooses to disbelieve a patient fundamentally compromises thier ability to practice medicine.
A patients reported symptoms are the basis on which all investigations & testing are formulated.
It is really important that we identify and remove these individuals. They cause unnecessary suffering & cost the NHS thousands in wasted consultations and litigation.
My experience at the Queen Elizabeth Hospital Birmingham was very different to Kate1 (different consultant). I was left in considerable respiratory distress from a simply treatable symptom of a CTD. I have relevant family history & presented worsening breathing difficulties on 8 separate occasions over 4 years. I eventually paid for treatment after it left me bedridden gasping for air contray to NHS principle 2.
The Consultant is unable to comprehend what is presented, presumably as a result of obvious autistic traits. It is important to support neurodiversiry in the workplace, but there must be suitable controls to secure patient safety. The Consultant has no recollection of what has previously been presented or investigations discussed and this is evident from the written symptom lists presented at each consultant, the clinic letters, & the recordings of the consultations.
I have also presented worsening muscle weakness on 6 separate occasions, walked with a stick for the last 2 years & started to use a wheelchair this year. This is being independently assesses. Myositis blood tests have now been run with interesting results.
I can't supress that I hold this evidence, so we have decided to send it to the CQC as well as the CCG due to the severity of the offence & likelihood that there will be other victims.
Hi It sounds like you are having a terrible time. I have gone down the private Lupus specialist route. One thing I do suggest is to describe not just the issue ie pain but the impact it is having on you ie what you cannot do as a result. The other is do consider increasing exercise, it seems counter intuitive but I have found that despite the fatigue and pain, doing some non weight bearing exercise eg yoga or Pilates has helped. I hope you manage to find someone who treats you with more respect.
Hi, I am so very sorry that you too have met some indifferent and unprofessional Doctors lacking in human compassion. No one has any right to disbelieve your pain they are merely too disinterested to try to identify the source. I completely understand your despair and frustration. My first Rheumatologist, who I saw privately to expedite help, told me to return to work to “ take my mind off things”. At the time I was being sick with pain and struggled to weight bare. He saw me two weeks later on the NHS and diagnosed Lupus. This was confirmed by a Haematologist. I thought then ( 12 years ago ) that I would at least get consistency of care but that was not the case. I have been diagnosed with Lupus and undiagnosed with Lupus. Two years ago a Rheumatologist told me I had Fibro and “ hysteria” whether I liked it or not but if I got sick I would prove him wrong. It is debilitating, distressing and frustrating to be treated with such flippancy and disdain. Not all doctors are like this so the more research you can do to find a Rheumatologist who is a specialist in autoimmune conditions the better. Get a referral to a Centre of Excellence. I wish you all the very best. You are sick you just need someone with the skill base and care to find out what is causing your pain xx
I disagree at this time that you should keep pushing to see more rheumatologists. If two professionals have ruled it out at this time due to following criteria a third and fourth will likely do the same. All this focus on your health and an answer is not healthy. Wait six months to a year after trying a few life style changes and return to your gp at your regularly scheduled next appointment and request more tests at that time.
If you really feel you must see another specialist see a different type for even if autoimmune illness has need scratch off for now joint pain can be osteoporosis, osteoarthritis, lymes disease and a bunch of other differential diseases.
If your weight is above a 25 BMI try lowering it. Have you tried increasing your exercise it really improved my over all joint issues more than any steroid ever has.
You seem to be ruminating about the idea you must have lupus. This belief might be blocking you from finding out the real cause of your symptoms and thus preventing you from treatment and possible improvement.
Try to open your mind that maybe two specialists know more than us and start looking elsewhere for what might help you.
I know this seems harsh but It seems to me that your preconceived idea that you must have lupus is causing you not to listen to your doctors not actually the other way around. You need to focus on listening, for now , to their limited solutions( life style changes) for at this time you do not qualify for the more dangerous drugs because their risks do not merit the benefits.
Ask your gp about osteoarthritis or other reasons for you symptoms and consider and try any solution or reason they think might help. Then after six month reassess your health. But this hamster wheel you are on is not helping you the stress is harmful.
Hi Roarah . I don't think that this is a particularly helpful response. We are well aware that people with lupus and associated conditions often face significant delays in getting a diagnosis, usually after seeing multiple different doctors. Despite what we would hope, not all consultants listen properly or have sufficient experience and knowledge in diagnosing and treating rare autoimmune rheumatic diseases.
Sometimes the advice to disbelieve more than one specialist and to endlessly chase expensive tests and new doctors is also not good advice. We only ever hear one side of stories and yes multiple abuses do happen but at this time fighting and searching for a particular lupus diagnosis has gotten this poor patient no symptom relief just added stress.
I did not suggest stopping her search for solutions I am suggesting other things to explore for lupus was ruled out by two separate specialists and at this time it will likely be ruled out by the next ten as well.
She should ask about differential diagnosis that also can cause her symptoms before fighting for a specific diagnosis.
We get blocked by our biases all the time and if she only focuses on one possible reason for her ailments instead of exploring other possibilities she might never receive help. Let the lupus idea go for a few months and revisit it later if no other reason is found is my advice.
I think it is incredibly unlikely that a physician would not be testing for differential diagnoses. They will be performing panels of tests and considering diagnostic criteria for other diseases. Someone should not be blamed for discussing a possible diagnosis with their doctor.
I have been reading this thread with great interest.
Roarah sees an individual chasing a Lupus diagnosis and access to toxic medication.
I see someone who's symptoms have "progressively worsen to the point where" they are "struggling to maintain day to day activities". They have been given "no painkillers" "no steriods" and the rheumatologist "was not convinced" they were "in any significant pain"
When did doctor's stop believing thier patients? Where is this prejudice coming from?
Why shouldn't this patient be given pain relief and a short course of naproxen to see if this eased thier suffering? Why should they have to wait 6 months in pain before getting this help?
I have seen this attitude before from the medical profession. Why can't they distinguish between a patient in pain seeking treatment & trying to find cause to help the medical profession who have failed to provide treatment in 6-7 years in this case.
Roarah can you help explain where this is coming from.
You bring up a really good point. If a person is felt not to have an inflammatory condition, shouldn’t they be offered a treatment for pain and other symptoms?
There seem to be so many reasons autoimmune diseases take a long time to diagnose. Some of us have negative labs in the early years. Some people have doctors who aren’t connecting the dots. Some of us take a while to evolve and be diagnosable.
I wonder why there isn’t a better way to handle people other than “autoimmune or not autoimmune” after a rheumatology referral. It seems doctors should be able to say they just don’t have an answer at this particular time yet still help the patient and leave open seeing GP if more symptoms develop.
I also think it would be helpful if doctors would explain why they think someone doesn’t have lupus or any autoimmune disease, particularly when GPs have had concerns. People are left in the dark, not knowing why they have certain positive labs and symptoms and yet there is no diagnosis.
Roarah is correct that because major medications are used to treat autoimmune disease, doctors won’t treat until there is reasonable evidence of a disease with significant symptoms. But surely there is some way to help people who don’t fit that category.
I did not blame her. but at what point should one surrender and accept that maybe multiple doctors who have all the tests and info, unlike us, are actually correct? Why do so few actually trust that maybe physicians know better than laymen strangers do?
We do not tell patients to not trust an oncologist or radiologist who says , “at this time we see no evidence of disease”. We wait a year and get screened again for cancer via yearly mammogram or Pap smear or prostrate exams. I see this as similar.
She has been told by not one specialist but at least two that at this time there is not enough evidence of lupus. Accept it for the moment and reassess after a bit of time. Focus on just lupus may be harming her more than helping her at this point.
Edited, I actually thought this poster was someone else and thought they had mentioned covid recently. I still think sometimes the idea that we know more than the doctors seeing the actual patient is very dangerous.
I would like to point out that I am more than happy to accept the fact of the possibility of not having Lupus. I am in no way trying to strong arm doctors into diagnosing me with something they genuinely don’t think I have. What I am not happy with is being dismissed as having “nothing” wrong with me, despite having positive tests leaning toward “something” being wrong - and very strong clinical symptoms.
Felt so so sad when I read your post. If you’re anything like me all you want is to believed . Do people really think that once healthy active individuals really want to be wasting our lives pretending to be Ill???????? It’s heart breaking . I won’t even bore you with my story as it’s all too familiar.
I don’t agree that drs always know more than us .. 2 admitted to be they had no knowledge of scleroderma 🙈.
I want to help you but I don’t have the magic wand 🪄 .
Keep taking notes , pictures of anything odd looking no matter how small .
I don’t agree either with exercise cures all . When you’re Ill it can cause more inflammation. I’m a PT and pushed through for years did me no favours . You certainly don’t sound like the sort of chick who sits on sofa all day anyway (not that there is anything wrong with that on bad days ) .
Knees are everything ….. can you save up and see a knee specialist ? Gp can easily refer you. Sometimes , sad though it is we have to separate body parts . I’m no 👨🏻⚕️ but knee man will have good idea If mechanical / inflammation of both .
Sending you the biggest hug and I and many others on here believe you
The link above is years old and no longer relevant to today’s practicing rheumatologists who now follow international guidelines set in 2019.
DsDNA can often be a false positive and is seen in many other conditions including but not limited to, malignancies, infections and even in a small amount of the healthy population. It is not used on its own for a lupus diagnosis.
Hi Roarah . These guidelines are still widely used in the UK - please note that they are guidelines and not requirements. Some practice may have changed since first publication.
I think it is misleading to suggest that dsDNA can "often" be a false positive. A strongly positive result, in combination with other clinical signs, provides good supporting evidence for a diagnosis of lupus.
Supporting evidence is what my statement says. But false positives are seen in more than 1 percent of the population and are now frequently seen in covid infections transiently as well as in solid tumor patients. dsDNA is alone not enough for a diagnosis due to these reasons and thus is why her doctors might have down played its significance.
Hi there SGRC. Your name is kinda sad, so not going to write it out but I hear you and I’m thinking back to my 25 year old self. Like you I had many symptoms that in the late 1970s and early 80s there simply were no names or enough information on autoimmune diseases. For instance, my own mother was diagnosed schizophrenic But as we kids look back as grown adults it
Was lupus ( she was even treated for MS for
Ten years). So try not to get too upset at your system of medicine ( I’m in US) progress has been made. It actually would be very helpful to list your clinical symptoms. Lupus comes with a big bag of tricks. However, so do other illnesses and that is why lupus is referred to as the “great
Imitator.” Some were listed above including
Lyme Disease and Rheumatoid Arthritis. And the really sad fact is that until your blood tests and clinical symptoms show
Themselves at the same time it’s hard to get a solid diagnosis. Your anti dsDNA is a marker specifically for lupus; however in some cases, as Roarah says above it is indicative of other illnesses. Lupus is not a disease you want to have; or any AI disease.
The drugs can be gruesome and pain debilitating. As you are waiting again to see another Dr. I would suggest going gluten free for a minimum of 2 months. It’s not as hard as it was even 5 years ago. Recipes
Are easier and better tasting. You can’t cheat even once. Marvelous transformations have occurred in people with gluten intolerance or sensitivity. Joints stop hurting, gut doesn’t hurt, no more headaches, hair grows back in and more. Read about it. Some people think they are seriously ill and it’s gluten. People who thought that they had AI illnesses discovered it was gluten. It would give you an immediate goal as well. You do not want to be a victim any longer. So take charge! Good luck and keep us posted. I think your
I am sorry you have been having such a crap time. Doctors can be frustrating, but bad doctors are infuriating!
First of all, WELL DONE for firing those bad doctors. I have fired a few extremely rude, disrespectful, egotistical doctors who don’t seem to have any hearing ability whatsoever. So don’t be afraid to dump them.
Second, WELL DONE for documenting all your signs and symptoms. A good doctor (when you find one) should take a lot of interest in that. Sometimes the smallest signs can be clues so include everything, even if it doesn’t seem relevant.
Third, I can’t believe a doctor is saying you should just live with the pain! Keep trying different options, you may hit on something that works. Not much helps with my pain except turmeric and epsom salt baths, plus regular chiropractic and massage treatment. A new doctor recently suggested CBD oil to me, so I’m gonna think about it. Why should we live in pain?
As for exercise, some people swear by it, others swear it makes things worse. So work out if anything works for you and do that. I do a stretching regime every morning, it’s not much but it seems to ease the aches in my body. Don’t worry about what everyone else is doing; do whatever helps you feel better.
Good luck—keep posting here, there’s lots of support on this forum!
Popped into Holland and Barrett and they do a fantastic range of cbd. I didn’t try anything as lady said must speak to pharmacist first to check contraindications with other meds . She did say people swear by it for pain relief xx
I really like muse fur baby reply to you. And I’m sorry I did not address the way some Drs blew off your pain. This is a pattern with some Drs. Especially for young women you know it’s all in our heads. I had a thyroid Dr / endocrinologist ask me if I was poking my thyroid and making the pain myself. She not he in this case!! Told me toBuck up and live with the pain. &$?!#%^|~€|!!!!!!!🤕 She was the first Dr
I fired. I mean like Trump, “ you’re fired.” Get me my file. Lol. Exercise is huge so I’m glad MFbaby said great advice. Go slow. Find your limits. For 20 some years I could not figure out why my glands in my neck and under my arms became painful and big after
My favorite exercise walking 5 miles a few days a week. I hope you go gluten free.
Thank you all for the input, the support and suggestions everyone has contributed. I have added some additional information to the original post - hopefully this clears up some confusion.
When I saw the NHS Rheum they asked for a urine sample which they tested during the appointment - they said there wasn’t anything to be alarmed about but nothing was explained to me about what they were specifically testing for or what the results were.
Hi SG. Good update. Does your pain keep you up at night? Do you have any other clinical symptoms beyond joint pain? Hair loss? Debilitating fatigue are hallmarks of lupus. All responders here just want to help. If I were 25 in this body conscious culture, I’d be like you. Exercise a lot. If I’m reading that right? Until you find a better Dr. perhaps do a softer routine? Don’t think anyone here believes you WANT lupus or any other autoimmune disease. Just trying to help and ask questions to help you. YouAre indeed correct I believe that the professionals you have seen have done you
No good service. Perhaps, not sure how this works, many people here talk of where they live and what hospital or treatment center they go. Are you able to post that and perhaps someone here can message you here or privately? I believe you hurt
Well Girl friend that is what we need to help you. That’s a grocery list. A lot like mine was. You have something going on. I’m no doctor but I can say it is very reminiscent to AI diseases. The electric
Shock symptoms I was told are rare for lupus as I have them as well. It is very prevalent for MS so they did a lumbar puncture. Have you ever had an injury to your head or spine that you know of? This list of clinical symptoms is an eye popper for any Dr. and a good one will help you. How long have you had these symptoms? Sorry if you told already. I’m
Yes the NHS Rheumatologist didn’t seem to be concerned about most of them - he suggested that maybe they are all “unrelated” issues to my pain.
The only real symptom he took an interest in was my tremor, but again he did not follow up with any tests regarding it, just asked me if I’ve had a T count done and I said yes but not for a couple year, and it was normal then. He didn’t say anything else afterwards.
I had worried about some of the symptoms overlapping with those of MS but I feel like if I suggest it at this point, and it’s not suggested to me, they will just think i’m some kind of hypochondriac 🤕
I have been having the joint pain since I was around 18 (now 25) the rashes and sun allergy about the same. All the other symptoms have probably come on over the past two or three years.
Ok. I’m in US. Your system baffles meNot in a bad way just it’s more complex. Someone else will jump in here and have some advice. Obviously at least to
You and me and others here you have some symptoms that need examining by a good physician. These symptoms don’t appear because they are in your head. You will be alright. Titters
Did you mention that the GP noted swelling in your knee? That is surprising that the rheumatologist said the Naproxen wouldn’t have reduced swelling. That would have confused me too. Try to get clarification. Also get clarification on why the ANA and anti DNA tests are being seen as insignificant. The rheumatologist owes you an explanation. Once you have that you can make a decision on how best to proceed.
Hope you get answers and can move forward with treatment.
Yes my GP prescribed me Naproxen for swelling in my left knee, but when I saw the Rheumatologist he told me I didn’t have any swelling on my knee.. I said maybe that’s due to the high dose of Naproxen I’m on and he just responded that there was no swelling.. but as soon as I stop taking it the swelling comes back 🤔
I have just read your post and can so associate with you.My battle with doctors has been going on for over ten years,when my GP of ten years standing said he thought my symptoms to be something besides my Fibromylagia and referred me to a rheumatologist who did not ask about my symptoms and said "you need to lose weight and do more exercise".This BTW was the same Rheumatologist who diagnosed Fibromyalgia in 2005.Neither he nor my GP at the time accepted that any weight gain was not diet related or that I walked my dogs twice a day on some fairly long walks (which I cannot do now).I 'm as frustrated.Have had several doctors through no fault of mine .only one of which took me seriously and one who partly took me seriously .I have the symptoms of Pagets disease and meet with many of the symptoms and pointers of Lupus.NHS and three doctors have said say that blood tests are not conclusive for either condition yet still dismiss my symptoms based on blood tests and not my symptoms.I complained about the first rheumatologist and saw another who like yours was worse and did not even ask about my symptoms,made some ludicrous comments such as "blaming weight fluctuation (of Lupus?)on imprecision of weighing scales",.I am not talking a few pounds here but 1/2 to 1 stone over a year.I totally agree with you and despite all my symptoms-bone pain and deformities to my skull.facial features and other bones/joints ,facial rash, and non conclusive blood tests,Doctors say "you dont have Pagets or Lupus and GP said "sometimes we cannot make a diagnosis."which I feel is unacceptable when they have not even asked about ,considered all my symptoms or pain. .They only referred to recent skull Xrays (in the last year),not that the changes to my face started around 2011 and not that I have bone and joint pain in other joints etc besides my skull-clavicle,shoulders.elbows,and now my heels which would need a full body scan .Both conditions are not just about pain but other pointers and Fibromyalgia and Raynauds are pointers to Lupus.and symptoms that cannot be seen with the naked eye.Two endocrinologists both confirmed the changes to my facial features -not by imaging but by talking to me and seeing me face to face.I also totally agree "it is not normal for anyone to be experiencing such symptoms and to be in this much pain for “no reason”.
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