Lupus?

[pherndon]

Hello, my name is Pamela and I’ve been a member in hiding if you will. I read all the posts and responses but have just been too scared? To join. Ughhhh, I suck lol. I’m pretty sure I have Lupus but can’t get a diagnosis. I’ve been told it’s all in my head. From my family and also the doctors I’ve seen. They keep saying it’s anxiety but I know better!! Extreme fatigue, widespread body pain, facial rash they said is Rosacea, Chronic Hives all over, Rosacea? On face. Extreme dry eyes and mouth! Bodily rashes that come and go.. These are just a few!! Somebody please help me!! ??

[Dion50]

Hi my mom has lupus and is in constant pain with it ,her feet ,legs,swollen with a constant red spot like rash she is just starting to get in on her face I think she had it a lot longer than 3yrs that's when rumathology picked it up she also has rumathoyd arthritis and both are immune diseases she has diamorph for pain ,her sister had it aswel but is no longer with us sadly she passes but it wasn't related I myself have mixed connective tissue disease which in itself mimics lupus it affects my soft tissue ,you have every right to ask for a second opinion lots of blood test but at least you will know and I agree totally drs are not always right and please don't be a stranger everyone here are lovely take care .

[Kath1]

Hi you are not alone, it took 10 years for me to be diagnosed. Problems with the immune system can mimic each other very easily. My advice is keep a diary of symptoms and keep going back to your gp if what they do isn't helping. In the meantime take care and I hope you get the help and answers you need soon. All the best

[LTLL]

Hi Pamela Sorry to hear you’ve had to contend with this all alone. As the others have said it can be hard to get a diagnosis. Even when you have a lupus diagnosis, it can be difficult to get new symptoms diagnosed (as lupus or something else) Keep on at your gp, and if you can see another doctor, and as Kath1 said keep a diary and take photos too. Take care and all the best 🙏

[Spanielmadlady]

Hi.dispite my gp being fantastic my journey to diagnosis still took 5 years .us lupies are very complex with many illness overlapping .as Kath suggests keep a symptoms diary inc pics of rashes etc.ideally you need a referral to Rheumatology and antibodies bloods doing ( although these can be negative so don't take that as a no) .Be confident in how you feel...we've all been told its in our heads and keep going ..you will get there x

Just to add to what bellisimo said about rest and stress ...keep out of the sun and cover up head to toe as uv light can make symptoms worse.look at your diet as there can be food intolerance.

Google the spoon theory and the 11 point criteria for lupus it might help x

[Bellissimo]

I think you need to see a doctor and get blood tests done. Diagnosed at 34 it showed up in my bloods. Not for everyone but it’s worth getting bloods done. Imflamation markers etc.. that is the first step.. rest and cutting out stress will help but you may need a consultant to help with the correct treatments. Hope you get some answers soon x

[dg70]

Took me over ten years. It was an Ophthalmologist that referred me to a Rheumatologist. It's a route you can try although two opticians and one ophthalmologist missed it over the years even though I mentioned dry eyes and mouth. If it's autoimmune a schirmers test on the eyes shows things up then and there if you have dry eye. Together with dry mouth it might get you referred quicker to a Rheumatologist. Bloods can often be negative unfortunately. Be prepared to pay if you want a more comprehensive check up and to know quicker. Waiting lists on nhs are not great and the time you get with a specialist is next to nothing. Be prepared to have a bit of a fight for a diagnosis, don't give up and don't listen to the ones who say it's all in your head if you really feel something is not right. If its autoimmune the medications help a lot and you can't get them without a diagnosis so it's worth getting help sooner rather than later.

[Oshgosh]

I had random symptoms after I had my tonsils out when I was 26.Random symptoms were treated on a symptom by symptom basis when I was 66 I had am emergency admission to hospital,

Subsequent to this I was diagnosed with SIP,then UCTD with symptoms of lupus,RA,and Sjogrens disease,so. I’d been struggling with symptoms for. 40 years

[CecilyParsley]

Hi Pamela, this is the most supportive place I have ever known. Many people here, including myself are still struggling for a definitive diagnosis. You are welcome here, this is a safe place for us. As others have said scepticism and disbelief from Doctors, family and friends is common. I agree keeping a symptom diary, photographs of rashes, swellings, ulcers etc. When you have all your concerns documented make an appointment with your GP and ask for a referral to Rheumatology. Good luck with it xx

[Carcrashgal]

Like so many, I too had a long journey to diagnosis, but it was a dermatologist who named it even before he found the inflammation markers in my blood. Then I had years of my GP not believing I had it (because after that, every blood test was negative - it's a disease that hides in plain sight). You need a multi-pronged approach, as others have suggested, and I'm repeating to get it all in 1 place: 1. Diary - as Kath1 and SpanielMadLady say, marking *all* your symptoms *every day* with photographic evidence wherever you can . 2. Diary of GP appoints: when you go, what they say, copies of test results (that is your right). 3. Ask for referral to dermatologist - with rosacea and hives, that's something they can't deny, and you can explain everything to dermatologist and (4) as Dion50 says, you have a right to a second opinion. I don't know where you live, but there are Lupus centres of excellence all over the country, so if you can get yourself referred to one of those, you'll be dealing with medical people who know what they are dealing with. Finally, (5) you might consider changing your GP. You've already joined this site (and it doesn't matter if you're silent; there is a wealth of information and experience here, not to mention a sterling and supportive, extremely kind community. GOOD LUCK!

[Krazykat26]

Firstly well done Pamela for posting n connecting with the group 🙌🤗Welcome!! As you probably already know there are loads of us here and I think we can all relate to your post.I won't repeat what's already been said (I agree with it all)

What I will say is that you're not alone..we are here for you n most importantly WE BELIEVE YOU!! 🤗

We can help you navigate the crazy whacky world of autoimmune conditions. I've learnt more from this site than from any of my doctors.

When our bodies are doing strange things of course there's a certain level of anxiety..depression too. We're not robots n mind n body are linked. We all live with lupus 24/7..we know what it's like. With appropriate treatment it can be managed..never lose hope. 💜🌈😽😽Xx

[pherndon]

Hi, thank you all so much!! It’s really stressful as you guys all know very well when the Doctor just looks at you and makes you feel as if you’ve lost it mentally but you live with all these symptoms that you just wish you could make them understand. Ughhhhh!! I will keep trying and hopefully can see a specialist but will have to pay for it. No insurance. I’m in the US and it’s very difficult to get help financially. Been to ER 50,000 times though lol. Thank you all again. 🙂

[Pumpkin2009]

I agree with what everyone has said. I may have missed it, but whenever you can, take photos of rashes, swelling, bruising, etc. I have found that a picture is worth more than a thousand words to a doctor. Wishing you all the best and be kind to yourself.

Healing hugs.

[BeeManShrop]

Hi Pamela What good advice you have been given above. I am not a medic but have been monitoring my wife's blood tests for well over 12 months now ( she has Lupus SLE). There are a number of different tests -- currently my wife is checked for 26 different items within a single test and within those the critical ones re lupus are for dsDNA antibodies and compliments C3 & C4. My wife had been having routine blood tests from the GP and the rheumatologist for years for RA (which excluded these elements). It was only by some freak accident at hospital that these tests were done, that the road to a Lupus diagnosis was opened up and she was shortly diagnosed. Also, I don't think anyone so far has mentioned the need for urine tests to check for protein and blood, should these exist, then it is an indicator of poor kidney function, perhaps caused by Lupus.Hoping this helps some. Good luck.

[Suvi8901]

Yes, this forum is a good place to be.

Familiarise yourself with basic lupus knowledge that even many fresh faced GPs and others do not know:

lupusuk.org.uk/wp-content/u...

The basics should be common knowledge to the medics but are not.👆

[rosebud52]

I hope you get your diagnosis soon, i know how hard it is to get a Dr to take notice, I only got sent into hospital when my all my body and face looked like I'd been in a fire or had acid thrown over me, I was in a burns vest for two weeks in the most awful pain and all that started from a very small rash which first started on my arms then my chest, neck and face, I was visiting my surgery for over a year and each time the rash was worsening but they still couldn't work out what it was, I wish you the very best, don't give up ❤

[Corcan in reply to rosebud52]

OMG you have been through it. Thank you for your kind words. I wish you all the very best..💜

[rosebud52 in reply to Corcan]

Keep fighting for yourself, it's your life your fighting for. 💜

[BaltimoreMDgal]

Hi! So sorry to hear your story!

I’m 63, in the US. My GP ran a few blood labs, then referred me to s rheumatologist who ran even more. Diagnosis within a few weeks, based on blood tests.

One thing I can warn you about is what my rheumatologist told me are known triggers for flares:

- sunlight (so wear protective clothing and sunscreen when you’re out and about)

AND

- ibuprofen (Advil).

He recommended Aleve (naproxen sodium) for aches.

I hope this helps, even a little.

Glad you’ve decided to come out of hiding! You know we’re a supportive group!

Wishing you (and everyone) well!

[KayHimm]

These illnesses can take years to diagnose. I noticed you have dry eyes and mouth. You might want to request to see an ophthalmologist or ENT. Sjogren’s Syndrone can have negative antibodies but there are other ways to diagnose. This could explain your other symptoms as well like the fatigue and pain.

If the doctors don’t see the rashes as consistent with CTD, I would go in the direction on the dry eyes and mouth problem. I still remember when I noticed those noticed symptoms early on. It was definitely a piece of the puzzle.

Don’t give up.

[NanaFifi]

Well Pamela, I ain’t no doctor but it sounds to me like you have Lupus. I’ve had Lupus for over 40 years and it took quite a long time for me to get a positive diagnosis. I also met a lady at a regional Lupus group meeting some 40 years ago who had actually spent a considerable amount of time in a mental health facility because doctors believed her symptoms and pain were all in her head! Shocking! Thankfully these days things have improved somewhat but I’m surprised to hear your story, ‘all in your head’ now that is awful and very sad. I wish you luck in your journey towards a proper diagnosis. X

[Dawneil]

Hi I'm the same. been a member for some time, but never posted anything.I became very ill at 28 after my second child, and my doctor told me and my husband that it was all in my head. Did not get diagnosed with LUPUS until I was 37 so I know how that makes you feel. I am now 69 and I now have Sjogren's and Raynaud's Disease and now have chronic anaemia. I have become quite unwell since January 21 with high blood pressure which has caused a bleed in my eye. Not been able to see my GP but had a few calls from doctors I don't know. One doctor suggested I have this rare test called a Coombs Test.

This came back positive. Put simply I have antibodies that are sitting on my red cells and destroying them before they mature, which is also making it hard for me to breath as I have very low oxygen in my blood. But all this time I have not had any treatment for it, so I'm thinking what was the point of doing the test in the first place. I am trying to find out more about this but only found info on the Johns Hopkins Lupus Center in America. Is there anyone else been diagnosed with this, or know more about it. Sorry its so long, didn't mean to write so much. Thank you for reading it.

[Alida_Bennett Partner LUPUS UK]

Hi Pherndon

Welcome to the LUPUS UK HealthUnlocked Community. We offer a free information pack which you can download or request at:

lupusuk.org.uk/request-info...

Well done on writing your first post – I hope you will find the forum both welcoming and supportive.

I’m so sorry you are having such a difficult time in trying to reach a diagnosis. In relation to your query, you will find below a link to our publication regarding diagnosis and symptoms, which I hope you will find informative, as well as a blog article in relation to getting the most from medical appointments, how to prepare etc. This blog article contains advice in relation to getting a referral and/or a second opinion.

lupusuk.org.uk/wp-content/u...

lupusuk.org.uk/getting-the-...

I hope the above information is helpful, but if I can help further, do please let me know.

Kind regards

Alida

[MusicalFurbaby]

Hi Pamela, good on you for posting! There is a lot of support and lived experience here, I hope you feel at home.

The first step with anything potentially autoimmune-related is to see a rheumatologist or immunologist. This is their speciality. You can get a referral from your GP. The process can be prolonged and frustrating, so do start a diary of all your symptoms, what they are, when they come and go, any known triggers, severity etc. This will help when you finally get to see the specialist.

Diagnosis can take a long time. It took me 8 years to get diagnosed with lupus, and that was mostly because my initial symptoms were extremely rare. No one had a clue what was going on! But I can relate to your symptoms of hives, rashes, widespread pain (like having the flu) and fatigue. I don’t have the dryness though, could that be related to Sjorgens?

Anyway, I hope you get some good advice and support from the forum. Take care x