I was diagnosed with Fibro ten years ago and the rheumy didn't think it was Lupus. I'm not sure if I was tested for it at the time - would that have been automatic? I must have had blood tests because I remember being phoned up by my GP to say I had a Vit D deficiency. I was also recently diagnosed with ME although have had chronic fatigue for years, particularly post exertional malaise.
My other symptoms are: migraines, pain, feeling cold and poor temperature regulation and Hyperhidrosis (excessive sweating which is one of the most distressing symptoms for last few years) triggered by COLD weather more. Yup, doesn't make sense, although I see that people with Lupus more likely to suffer fever. I had pleurisy years ago. I've had lifelong anxiety.
I wonder about Lupus from time to time as I do about other conditions with overlapping conditions (so many are similar). But getting rashes on my face which appear at night when I look in bathroom mirror, especially in last few weeks.
Many thanks
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FoggyMoggy
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Hi FoggyMoggy, so many different experiences with lupus and everyone here getting a diagnosis. My best advise, and there are many here that can give you better advise, is do what you can to get a hold of your labs, tests, and doctor notes. In the US you have a right to them, and I would imagine it’s the same in the UK and Australia? Anyway, look at them, especially the more recent ones, and highlight anime thing you google that looks suspicious for Lupus or Overlap, or whatever your suspicions are. Then, take your notes, questions, etc., and ask your specialist. Don’t be embarrassed or intimidated. It’s your body and your health, so ask, and take notes based on the answers and keep a notebook.
All my best to you, and please update us. 🙏 we’ll be praying it’s not Lupus.
It's so hard in the UK atm, I don' t have a specialist, just in touch with the GP, although have one for ME/CFS. The problem is Lupus so similar to many other things. I"ve heard about an ANA blood test but never had one afaik! x
I am struck by the symptoms you have that seem to be part of the autonomic system, which regulates temperature and vital body functions. Have you ever had tests for dysautonomia?
Thanks for your reply. No, I don't think I have been tested for that but I did read up about it a few months ago! I seem to go around in circles! Are you in the UK and do you know how you get tested? I have been told it's part of ME/CFS for your ANS to be not working properly. Many thanks - Moggy
No, I am in the U.S. The testing depends on the symptoms you have. I would definitely tell your GP about your sweating issues and difficulty regulating temperature. They will know who to send you to. Generally, neurologists manage these conditions because they are caused by nervous system disorders.
Thanks. My GP knows about sweating issues (it is hyperhidrosis) but tbh I knew more about it then they did. HH is very poorly understood and researched. I take meds for it - normally you're sent to a dermatologist here. But the meds are either ineffective if I don't take enough or have horrid side effects if I take too much, and it's never the same twice. I've never been sent to a neurologist although the ME/CFS specialise may have been one. I can't remember due to fogginess! Moggy
There aren’t a lot of autonomic specialists, that is true. If you are have trouble regulating heart rate and blood, they usually do a tilt table test. Some of your fatigue could be related.
Although autonomic dysfunction can be a result of lupus, it is rare. One way to think of how doctors diagnose lupus is to picture the body and imagine they are looking for evidence of inflammation in various areas like skin, heart, lungs, and kidneys. They also look for what the inflammation causes in terms of blood abnormalities. It is very difficult. But there is actually a logic behind the diagnosis.
Yes there are people in the UK who've had the tilt table test, often when investigating POTS which is a form of dysautonomia. I think there are quite big differences between the way some conditions are approached in the US compared to the UK. For instance many (most?) people in the US don't know what ME is, I have noticed. Differences between thyroid lab ranges and so on.
As you rightly say, it's not only lupus that is looked at in that way, there are so many other conditions with overlapping symptoms: FM, ME, UAT, MS, Lyme's etc. It's a minefield
That may be true. I don’t know if the tilt table test is as available in the UK. I think lupus and MS diagnoses are pretty much in sync. The diagnosis of these conditions has to be consistent for clinical trials. The problem is that for fibromyalgia and chronic fatigue there are no clear cut diagnostic tests available. It makes it so hard on patients. But many things in medicine are actually just descriptions, not diagnosed through biopsies, blood tests or imaging. Medicine is not all that advanced in some ways.
So far, they don’t see damage from chronic fatigue or fibromyalgia as with autoimmune diseases. Some symptoms may be the same, but there are other differences. The impact on life is another story. They to understand these conditions better and come up with effective treatment. People are really suffering.
I have heard people having the tilt table in the IK, usually to diagnose POTS.
One of the diagnostic features of ME is Post Exertional Malaise but then that is also true for Autoimmune illnesses as well. There have been advances in profiles and markers for ME and FM in recent research - whether it will come to anything who knows? I will try and find a link. The one below wasn't the link I was looking for - the one I saw recently was looking at the different brain scans and markers. Trouble is I have so much bookmarked going back years and trouble finding where I've bookmarked them exactly.
That would good if something comes of this research. I know there is hope that brain and nerve studies will help to better understand what is going on. So many lives are affected.
Thanks for posting. Many here will also be interested.
What you said about post exertional malaise makes sense. One difference between autoimmune diagnosis and fibromyalgia and ME is that they seem to leave out the constitutional symptoms. The new proposed lupus guidelines has included fever for the first time, though.
That's interesting what you say about constitutional symptoms - I've not heard that expression before so looked it up and saw it is well known at least on Google!
Yes, fever is something I don't have - I tend to have lowish basal rate body temperature and generally cold, which is why I am unsure if I fit the lupus diagnosis. Having said that I have seen that some people have mentioned being cold too with lupus!
It isn’t that constitutional symptoms are unimportant - they can be reason to rule out autoimmune disease - but they can not diagnose autoimmune disease. At least that is how I see it. Might be too simple. My rheumatologist has always used the term, which is why I am familiar with it.
Rheumatologists struggle because constitutional symptoms can make patients feel very ill and even impact ability to work. But the medications used to treat autoimmune disease tend to have significant side effects. That is why doctors take the diagnosis very seriously.
Your question may be better stated as how to doctors differentiate between autoimmune disease and ME and fibromyalgia. I hope I have been helpful with that question.
Thanks. Yes, as not enough is known about FM and ME and as so many people diagnosed with one or both also have autoimmune diseases I don't think it's easy to differentiate so easily. It may turn out that actually FM and ME are in fact autoimmune diseases. Certainly ME is looked at from the immunology and near perspective historically whereas FM from the rheumo perspective even though the ME specialist I saw earlier this year believes they are part of the same thing on the pain - fatigue continuum if that makes any sense. It sort of does to me.
Hi, I had rash on my arms, neck, face & top of my head when I first got Lupus. I also got fever, extremely warm and sweaty that I can't do anything rather went to urgent care, they gave me Prednisone and after a month, symptoms got better, but not go away, beside I gained so much weight. After 2 months on Prednisone, I designed to go to Dermatologist and request a skin biopsy, and that's how I found out I got Lupus.
Everyone has different symptoms and sometimes we do need to request for a treatment. Some people got symptoms for years before diagnosis with Lupus. I maybe, in one way found out quickly and started treatment for Lupus regarding who wants to diagnosis with this disease. It took me 2 years to cope with it. I hope you do not have Lupus, but you do need help. I also live in US.
Thanks kimc . Yes I could ask to see a dermatologist re my hyperhisrosis as most people do but I asked to see an endocrinologist. I didn't see one but got suggested tests back to rule out problems with adrenals causing sweats.
Also, if you're going to get test for Lupus, ask doctor to check your Vitamin D and B12. Vitamin D and B12 also on my therapy treatmens. My antibodies is normal, but low in white blood count & Neutrophils.
Thanks kimc - I've had Vit D tests quite a lot and always been lowish so have to take supps. I had a big fight on my hands last time to get it done on NHS, they anted to charge £80!! And not had Vit B12 done for a while but take a spray boost. I have had low white cells (in the past) not sure if that's the same thing but they have come back with 'no action needed'. :/
Hello Moggy, Lupus UK has an excellent info sheet on getting a diagnosis.
ANA is a test GP's can order, but most won't know what it's for. It's a cascading test for antibodies, and if it's positive, the lab will automatically do further tests to find out which antibodies and how many. dsDNA antibodies are highly specific to lupus. It's not a screening test for autoimmunity - a positive result has to be seen in the context of clinical symptoms like a facial rash, VitD deficiency, headaches etc.
There is a set of criteria rheumatologists use, found in the BSR guideline, Table 6:
ANA is one of the blood tests, but it doesn't have to be positive for it to be SLE (nor dsDNA) as there is a range of immunological blood tests given, some of them only a rheumy can order. 4 from 11 criteria have to be met for a rheumy to say it's lupus, one of them immunological.
You could ask your GP to do all the tests from the guideline he/she can do. Take photos of your rash and write down all the symptoms you've ever had - pleurisy and lupus go hand in hand - and keep a diary of symptoms.
I have the same melting problem, even when I'm cold...my docs are Dr Dolittles so I've never broached them about it. There's a great discussion here with suggestions of B12 deficiency, thyroid, hormones and autonomic dysfunction all coming in to play:
That's really helpful, thanks so much. Over the years I've also had occasional horrible vice like feelings in my chest restricting breathing. Touch wood, haven't had one for years, but really frightening when get them and they only last a few minutes.
I am due to have thyroid tests again - plus sex hormones to see what's going on with them - but I shall look at the recommended tests and see if I can add any in when arranging for the blood tests. But I even had a fight to have the thyroid ones done and would get the others privately if necessary. I didn't know hyperhidrosis could be a part of lupus - is that what you mean when say melting problem? I am never melting in the sense of feeling hot, I sweat more when I'm cold paradoxically! I take extra Vit B12 and have had a Vit D deficiency for years when I can get them to measure it but they just say take supplements. In fact i take the spray Vit D and K2 but it doesn't seem to make much difference to how I feel . I may have a problem with absorption? I had some other private tests a couple of years ago that showed reactive C protein was slightly high and reverse t3 was high but couldn't get anything from GP re reverse t3!
Hyperhidrosis in lupus is new to me too, but my rheumatologist is only interested in joint pain, rashes and pleurisy, so I doubt I'll get anywhere with the more exotic symptoms I have
If it is related to your lupus affecting the autonomic system, he should be involved. You might want to ask if your systems are possibly from a lupus-related issue. If not, what does he recommend?
You should get a thorough explanation. Frustrating when that doesn’t happen, right?
I'm not under any specialist, that's the problem. I saw a rheumy once when first diagnosed with Fibro. Oh I did see an ME specialist once who recommended a specialist for condition and activity management .
Sorry. I meant to respond to eekt. But the sweating issue would apply to you. Symptoms are so complicated and can come from so many things. Your GP will know where to start. That is what the diagnostic process does. Sometimes they have to rule out a lot of conditions before getting to the problem. He might do thyroid studies and other endocrine tests. They may send you for a sweat test.
I really feel for you. Sounds like you have issues that have not been addressed yet.
No, but think it must exist in the UK. The UK has very advanced medical technology as we do in the US. Maybe ask your GP if it is possible for you to get further testing.
I am only familiar with the test as a measure of autonomic dysfunction. It looks like it would be used when someone has diminished sweating. Your excessive sweating has to be hard to live with. Hope they figure out the problem soon.
Thanks - it's little understood but loads of people suffer with it and awareness is being raised. Mine is secondary hyperhidrosis (caused by another underlying condition)
It doesn't work that way in the NHS, especially in the devolved nations. You get what's given, in my case an inexperienced rheumy with no interest in lupus and who berated me last time - 'I'm not a GP' - because I had listed symptoms he doesn't believe are lupus-related (because he has very limited knowledge of the disease).
I'd asked him to go through the SLEDAI, which he did, and ruled out vasculitis because I had no gangrenous fingers (ffs!), clicked no for cranial nerve involvement despite me telling him the audiologist had shown moderate-to-severe hearing loss, and checked my fingers for swelling, therefore no synovitis.
As he rose from his chair, I had thirty seconds to ask if my hearing loss and lumbar pain could be lupus-related. Still waiting for an answer.. xxx
SLE Disease Activity Index, used as an assessment of changes in SLE with a point-scoring system: an increase of 6 (some say four) would indicate a medication review.
My rheumatologist used it reluctantly because it only scores new symptoms, not an increase in rash or joint pain etc...but useful for me as my symptoms aren't logged LOL!
My rheumy prefers his method, which to prescribe a toxic drug if dsDNA increases ...to make him feel better!...if I hadn't objected to azathioprine, I'd still be on it because my dsDNA has dropped to nothing (without medication)...but rheumy would be convinced aza was doing the trick..
Thanks for starting an interesting discussion! xxx
Many thanks eekt for all your information and clarification. So is the SLEDAI the same thing that was part of the link you sent me? Is that also the same as the diagnostic tool, i.e. said you needed at least 4 for a probably diagnosis of Lupus as I remember it, but don't think I could count 4 even though I have a lot of the symptoms that other Lupus sufferers experience xx
eekt - if you think you may have cranial nerve involvement, your GP might be helpful. I would certainly be concerned if I weren’t given an explanation for why the hearing loss is not related. What did the ENT say?
Actually, rheumatologists evaluate similarly here. They are alert for what is autoimmune-related and expect the GP to sort things out when they determine it is not. The only difference is there are less restrictions on referring to specialists.
You deserve explanations. If your rheumatologist isn’t giving them to you, maybe your GP can or refer you someone who can.
I haven't seen ENT about hearing loss...I had a free high street hearing test. .to dismiss cranial nerve problems when I have validated hearing problems is just plain wrong...to dismiss vasculitis on the basis of no gangrene is laughable...to believe synovitis is limited to finger joints is dumb
Some UK rheumatologists are oblivious as to what can be autoimmune-related eg my rheumy laughed and said 'that's not lupus' when I told him of GI involvement, though I have all the signs of pseudo-obstruction when flaring...the UK guideline says 65% will have GI symptoms though 'these are usually attributed to other causes'..
The trouble with my GP's is that after four years of positive dsDNA, and other confirmatory bloods, they still think I'm lying about lupus, so no help available there.. xxx
That is a terrible position to be in eekt. Sounds like you don’t have confidence in either doctor. Sometimes a GP can help think through things and offer explanations for why a specialist made a particular decision. But that won’t help here.
The GI stuff is tough. Very surprised you haven’t had small bowel series or other tests for motility issues that my doctor says are common.
Wish I could be of more help. I can understand why you are unhappy with your care.
Thanks eekt ! I started a new thread on the sweats as the others were about 5 years old and the members may not be active any more, but it was very helpful - just been reading it.
Yes it's not that i don't sweat in the warm weather, I do, but not as much and also it's less distressing because I don't feel cod and wet underneath and also if I sit in sun I can dry my clothes.
So is it a rheumatologist who usually diagnoses Lupus? Maybe I should ask for a referral again do you think?
Great stuff, thank you! Maybe I'll put it to my rheumatologist LOL!
Yes, lupus belongs to connective tissue diseases and is left to rheumatologists...but really, there needs to be a new kind specialist for autoimmunity...immune-mediated inflammatory disease consultants xxx
Hi very interested in your post . I was also diagnosed fibro years ago, went for new onset symptoms 2 years ago and told fibro but have numerous symptoms still which believe are not. I also told low vit d iron constantly.also temp probs extremely hot lately with freezing extremities, night sweats swellings ankles become immobile numerous hand facial probs.breathing probs on exertion and fatigue and severe stiffness/soreness after exertion. When I get busy hands feet swell and get very hot.rashes
and skin probs.
I don’t know what I have wrong but know it’s not fibro alone and wish I could tell you how to go about diagnosis but been struggling for years myself. Bad rheumy experience worsened matters.
I thought about lupus as when I had a good doc he tested bloods and said he’d test yearly for it but he left and with bloods not the whole answer and many other possibilities of what it could be I darent take a wild guess all I know is I suffer and really would like help and diagnosis to understand my situation and get some helpful treatment.
Your damned if you do but damned if you don’t and it triggers me so badly.
Things are slowly worsening and have done and I didn’t believe fibro to be progressive.
I have always coped and strong, but suffering mentally lately as no resolve to physical probs.
Awaiting neouro and dermatologist but who knows way nhs is going when, a year wait for dermatologist.
I would consider private but not having idea of what is causing it all, wouldn’t know what specialist to see and rheumy experience has totally floored me and clouded faith.
It is a real dilemma to be put in questioning position with your health when help not readily available .
Thanks for your reply, stiff19. I really feel what you've been through. I did have low iron too, I've not had it checked lately as they gave me supps and when it was back within range they stopped the supps. The problem with the NHS is that they won't do preventative tests or see where my iron is now, seeing as it's been low in the past. You'd think that would flag up something. I've had to nag to get Vit D tests repeated and now my thyroids but like you I feel I may be barking up the wrong tree.
I think I need to ask to see a dermatologist about the hyperhidrosis but can a dermatologist diagnose lupus and do the right tests? I seem to know more about HH than my doctors. It was me who pressed to investigate Fibromyalgia in first place and more recently ME. If I ask about Lupus, will that also turn out to be confirmed? My original rheumy said he didn't think it was Lupus after taking my history in quite a lot of detail and using the pressure points diagnosis but as I say I'm not sure what bloods were taken then. I know Vit D was. I had to ask for iron and VitB12 myself at a later time. Like you I would go private if I knew who to see and could have local recommendations. I had a batch of bloods done privately but then nowhere to take them afterwards so you can be shelling out money and be no further forward.
I have to say I am on a few Fibro forums on Facebook and for some people it seems to be progressive. I feel mine is progressing. then I start thinking - like you - maybe it's because I've got the wrong diagnosis. I have a family member with progressive MS.
I also have complications of menopause so that's interacting with my conditions!
Yes I didn’t think it was I could be wrong but whatever happened all came at once my knee begun and was very bad then hands then whole lot of symptoms, Essex for a bit I realise after hydroxychloroquine but then boom when they stopped more probs and ever since though flare and die down but never go. I never had tender points on pushing squeezing but pains otherwise, only my chest hurt when one pushed it but it swells and as soon as that he said fibro, the colleague rheumy pushed and squeezed a few times and said not fibro but then later decided it was after bloods and xrays. Yes I’m not checked regular but every time I am they say low iron low vit d , they told me to buy vit d take double dose for 3 weeks then daily, iron I get given tablets for a month then whenever have blood test get again but not checked or tracked. I don’t think I’m in menopause, don’t know but guess I’m that age? I probably sound a bit ignorant to what it could be in my mind but symptoms fit so much and things mimic and overlap so stopped looking and just want an answer from the people who should have answers or ideas but getting nothing , mainly because not looking past bloods I think. I’d like them to live a week in my life or with me to see what goes on,
Yes Thankyou I hope you get some answers too, my eye head most worrisome as no improvement at all, it’s all horrid but face is scarey really.
Good luck and keep informed please of your journey take care and best wishes sincerely🙏
Thanks stiff19 and all the very best to you. Your post has many of echoes of what I've been through. I am through the menopause now but had periods until very late. You don't sound ignorant at all, just not satisfied and a bit fobbed off as I feel. Yes, nobody has thought to check my iron for ages. Like you, Vit D instead of testing they said just to take supplements. but you need regular testing to know where your levels are at, whether it's being absorbed etc.
hiya, I'm in the UK and under a haematologist as I had a stroke on 1st December 2018 when they found I had Antiphospholipid syndrome which makes my blood too sticky and more prone to clotting (it's also an autoimmune disease) and I'll be having an ANA test this week to look for lupus and see my consultant for the results in a few weeks. I would ask your GP for a referral to haematology if you suspect lupus, good luck
Ah thank you nicola. Sorry to hear you had a stroke, but relieved to hear your getting some help and a diagnosis. I've not heard of that syndrome before. So a haematologist can diagnose lupus as well as a rheumatologist and a dermatologist? x
Thank you and as strange as it sounds I'm glad I had the stroke otherwise they wouldn't have found I have APS (I had my suspicions that I had it for a while as it also causes miscarriages and I've had 5 😣). Because I had the stroke they did a lot of tests of course and thankfully found the APS, I was pregnant too at the time so with twice daily injections of blood thinners I managed to have this baby, so another reason I'm glad I had the stroke. They tested for Lupus at the time and I had markers for it but needed another test to confirm, hence the bloods this week (i've had to stop the blood thinners for a week before the lupus test as the thinners can mess up the lupus test. Certainly in our area a haematologist deals with lupus diagnosis and ongoing care, APS and Lupus are very closely related I gather, read up on that too maybe to see if any of those symptoms are like yours. Good luck x
Many thanks nicolacrafty1 . That's so informative. Wow, I'm really glad that something good came out of the bad and the adversity - your baby! Amazing and congratulations! Which area of the country are you, roughly? I'm in the south west s I've no idea who deals with Lupus disposes in our area! Best wishes x
Thank you and I'm based in South Wales, you could have a look on your local health board's website and ask for a referral from your GP too, I would say a haematologist would be your first port of call for bloods and then if you have a positive result and you need further support perhaps they can refer you to rheumatologist
Thanks nicolacrafty1 . I have discovered today by digging out my FM diagnosis ten years ago that I was never tested for Lupus by the rheumy and should have been. So Lupus UK have advised all the tests I should have and I'm asking for those! So will see. Then depending on the results will ask for a referral - I don't want to see the same rheumatologist though if he's that hopeless but hopefully he'll have gone after 10 years but maybe not! Also I have been advised that dermatologists can diagnose too. I guess it depends on your presenting symptoms.
Hello lovely! I was also diagnosed with fibromyalgia and severe ME/CFS. I have had my bloods sent off today (ANA) to rule out lupus as I have started to get severe joint pain and inflammation, specifically in hands, feet and knees inflammation in hands and jaw.
I never had pleurisy but I was diagnosed with costocondritis and tietze syndrome (inflammation in intercostal muscles and visible inflammation in chest) a few years back.
I am writing to you as if you would like I will keep you updated on my bloods because it may be that our symptoms are ME/CFS related, but as you know it's minefield with so many new symptoms x sending you my best wishes x
Yes I would like to be kept up to date with your bloods. You can message me if you like as I may not find it again unless you post on this thread!
Lupus UK have been very helpful too. I remember when I was diagnosed with FM the rheumatologist saying he didn't think I had Lupus. Lupus UK said they'd be very surprised and disappointed if no tests had been done for Lupus. I found a copy of my diagnosis for FM and sent it to Lupus UK and it shows that none of those tests were ordered and that was ten years ago
I have asked to have them done at my surgery so will see what transpires. I have often had a horrible vicelike pain in my chest (not recently but occasionally over the years which feels like angina or something but doesn't last very long but when I've had it it's very frightening and I can't breathe in)
All good wishes to you as well and good luck on your journey. It is best to rule things out - I understood ME was a diagnosis of exclusion anyway! x
We have an article on our website which has a lot of information and guidance on getting a diagnosis of lupus. If you haven't read it yet, you may find it helpful - lupusuk.org.uk/getting-diag...
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Little cash but a lot of Lupus awareness
Diagnosis based on ANA and symptoms only?
Trying to get a diagnosis
SLE
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