I had my Rheumatologist appointment yesterday as some of you may know. My ANA came back clear, so he said I don’t have Lupus. I tried to explain to him what you all mentioned, that not everyone with Lupus has the positive blood test. He said that’s very rare and I don’t have it.
I finally opened up about the mental symptoms I’ve been having, including the exhausting mood swings and hallucinations. He said he wasn’t equipped to deal with this.
He diagnosed me with fibromyalgia, and that my Malar rashes, rashes I get all over my body, hair loss, mouth sores, heart palpitations, clumsiness, intense pleurisy, horrible light sensitivity, and Raynauds are very similar to lupus. But not lupus.
Told me to exercise... even though I can’t do gentle Yoga without passing out.
I’ve to go back to my GP next week to up my antidepressants too. Feeling quite broken to be honest, I appreciate all of you who took the time to comment though, thank you.
Don’t feel very hopeful for my future now to be honest with you all, I thought going to the Rheumatologist would mean a step forward in treatment and a step towards University... but I’ve just to exercise.
Thanks again everyone.
Kim xxx
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Wanheda242
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Kim please don’t give up or despair. It can take many people years to get a diagnosis. You are very young so may still not have the blood work to match your horrible symptoms. Also, similarly to being a woman of a certain age (menopause), doctors are often tempted to put all our symptoms down to hormonal changes, anxiety etc.
You need to keep careful notes of symptoms and progression, get copies of all test results and do research into which rheumatologists or other specialists might be better able to help you.
Also, keep your mind as wide open as possible. You may not have Lupus but you could still have a rheumatic disease such as Sjögren’s or Myositis or UCTD. Remember that this community is quite skewed towards seronegative autoimmune diseases but most rheumatologists veer in the opposite direction. So you might have gone in to see see them expecting to meet an enlightened rheum because this is an enlightened community? - but actually these type of rheumies are a very rare breed. You need to speak to people on Lupus UK about good specialists in your area.
Meanwhile could you perhaps look up autonomic dysfunction, research other possible causes of your symptoms and view Fibromyalgia as a kind of autoimmune disease in waiting perhaps? X
Don't give up Kim. I'm a lot older than you but seem to have similar symptoms.
It took me a long time to be diagnosed with UCTD.
My ANA has been positive but is usually negative and my rheumatologist says other tests are inconclusive.
Fortunately, he's willing to treat on symptoms - I'm lucky.
Don't be fobbed off by your GP - I was told for years that it was 'only anxiety.'
If you're having malar rashes & other skin conditions, ask (demand?) to be seen by a dermatologist. Maybe they can refer you to someone more sympathetic & enlightened.
Or can you get a second opinion?
I've heard others say that it can be very helpful to take somebody with you to appointments - particularly if they appear to be taking notes! (and, sadly, if they're male...)
Also, if you're not doing already, take photos of any rashes, swellings, nail changes etc to show them and my rheumy says it's v helpful that I take in a list of symptoms/how things have been, since my last appointment. I try to keep these in bullet-form rather than an essay - sometimes that's hard
I'm sure that many of us here can understand how broken you feel right now & being hopeless about the future.
Although nobody wants to be diagnosed with something like this, there is relief at being listened to & validated finally. I've wasted far too long thinking this was 'all in my head.'
I know it's hard to keep fighting for yourself when you're down & feeling unwell.
Don't really know what else to say other than don't give up, try not to despair & keep alive your dream of going to uni.
So sorry to hear that your appointment didn’t go the way you wanted it to.
It took me over 25 years to get my lupus diagnosis. So don’t give up! My problem was that nobody even considered autoimmune for the first 23 years...🤷🏻♀️
My first rheumatologist told me I didn’t have lupus because my ANA was negative. He ran the standard test and just wasn’t interested in me after that. So I took a deep breath and got a second opinion at a different hospital. They tested my blood by immunofluorescence and lo and behold it came back positive for ANA. They first diagnosed me with Undifferentiated Connective Tissue Disease UCTD but last week, after they had ran out of other potential diagnosis options, finally said Lupus.
Don’t give up on your dreams of university. Apply and give it your best shot! I made it through two degrees with my illness. The university were great about giving me a year long extension when I needed it during my PhD studies.
And if it doesn’t work out....hey you gave it your best shot.
Dear Wanheda, firstly fibromyalgia is a very serious medical condition. Quite rightly it is recognised as acutely disabling and life affecting. Your rheumatologist should write to you, ideally giving the grounds for his diagnosis and confirmation of his diagnosis in black and white. Your GP will need a copy and it is proof of your disability.
Secondly, fibromyalgia is internationally recognised as regularly co existing with lupus, along with Raynaud's and Sjogrens.
Thirdly, one blood test is not conclusive. Lupus can be more active on one day and not another. If this rheumatologist will not repeat it, then I agree with Krazy_Cat_Woman about seeking a second opinion. Not least, because you clearly need more ongoing support than suggesting some yoga which you are too exhausted to do anyway. (Seriously...I do worry about the level of understanding as to the depth of autoimmune fatigue, as well as how even the smallest wrong move can trigger excruciating pain).
And finally, as I have stated before on this site, the latest research in 2017, showed that over 50% of people with lupus were being incorrectly diagnosed to start with, regardless of whether they had mild, moderate or severe lupus. Misdiagnosis is endemic. Not occasional, not common....endemic. So many of us along the way have faced feeling crushed, appallingly misunderstood and callously unsupported.
With my very best wishes and huge cyber hugs, Lily
Please don’t give up. Ask for a second opinion. I was diagnosed with Lupus in 2009, undiagnosed in 2011, re diagnosed in 2012 and undiagnosed and told I just had Fibromyalgia and an hysterical reaction to my medication that apparently caused both myself and my optician to see macular oedema and a lack of lower left quadrant peripheral vision. Initially I was broken, despairing. I said to my husband that is it I am done with them but when I die sue them. After suffering repeated infections, fevers, oral, nasal and genital ulceration, virulent rashes, my bloods showed inflammation and my dsDNA was significantly raised. I have now been told to get my eyes re tested and then re start the medication. I tell you this because I totally understand how very distressed, frustrated and despairing you are. You are ill, they just have not managed to diagnose you yet. Give it time, take a breath and then start the fight back. You can do this. I send you a big hug and the hope of a better tomorrow xx
Yes Kim, Don’t give up. I had symptoms for 10 years before I got a diagnosis. Every time I would see my physician I would complain of fatigue. In 2007 I came down with a severe virus while traveling in South America followed by over a year of severe arthritis. I saw a rheumatologist and had a full work up and was told that I was fine except for low vitamin D. I kept trudging along and it eventually got better except for the fatigue. In 2014 the joint pain came back, this time accompanied by a rash on my face and neck. An NP I worked with did bloodwork and that time it came back positive ANA and positive anti RNP antibodies. They are not a sure diagnosis for lupus but the Rheumatologist gave me a diagnosis of lupus because of the symptoms that I had. It is not an exact science and physicians can be wrong and sometimes don’t take people’s symptoms seriously enough. I suffered through years of pretty debilitating fatigue and missed out on a lot of family gatherings because of it. So don’t give up. I’m sure others have told you to keep a log including pictures of any rashes or swelling. You know what you are feeling. Keep after the doctors that you see to take you seriously. Take care. XX. Nan
You have already gotten great advice from others. These illnesses are very hard to pin down, as all have said. I agree with Lily77 not to minimize the fibromyalgia diagnosis. You may have something in addition but that can be debilitating.
I would add that the rheumatologist is right to say he is not best to manage the mental health aspects. Unless you were in a major CNS lupus flare, he would not be the best person to handle hallucinations, and even then a neurologist would be consulted. I think you should discuss these concerning symptoms with your GP right away. There is a lot that can be done.
As others have said, your blood tests were negative at this moment in time. You might want to talk to your GP about repeating them at some point when you have symptoms. Ask your GP if you they think another rheumatologist’s opinion would help. Without certain signs and symptoms he may want to take the « watch and wait » approach. Time is important. These illnesses evolve.
I would want an explanation from GP as to why the rheumatologist says « not lupus » but looks like lupus. Really, it helps a lot to get to the reasoning behind the diagnosis. There always is one even if there is disagreement.
Hi Kim, I am so sorry to hear that you were not given any satisfactory answers. I don’t understand how he can say that it’s like lupus but not lupus...so what is it? I am also very sorry to hear that even minimal exercise is too much for you, with fibromyalgia you can be given medication for it that would be best discussed with a rheumatologist. I know this must all be so frustrating and your future seems bleak and i wish at least you would have some diagnosis that would help explain all your symptoms but please don’t give up. What you’re feeling is completely understandable. I think what you could consider is getting a second opinion and at your GP appointment to make sure that if they are adamant it’s not lupus, to keep investigating because you have something.
I have had to take time off of university so I know how disheartening it must feel for you. If this helps, what I tell myself is that university is still going to be there and that even though it’s later than I wanted I’d rather give myself the opportunity to do my best.
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