Could I have Lupus?: For last couple of years my... - LUPUS UK

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Could I have Lupus?

For last couple of years my health has been getting worse and worse and worse with last month being the worst. About 1 year ago I saw Rheumotologist who couldn't find anything,  months later I saw two endocrologists and turns out I have hashimotos and now seeing nurologist but all neuro tests have come back fine. I'm on thyroid meds and my numbers are good but still suffering hugely and think it's still due to hashimotos and medication just not working and needs changing but part of me now thinks i could have lupus. I'm now waiting to see immunologist. My symtptoms are/have been:




Mood swings

fluctuating body temperature

really bad joint pain (especially my hips)

tingling all over body

my limbs can go numb with slightest of pressure



very dry skin

brittle nails and hair

muscle jerks/twitches

numbness and tingling in penis


episdoes of confusion

epsisodes of what feels like my brain is being attacked

I think at one point i did have the butterfly rash for very short time

muscle weakness

can't concertate well on things

really bad memory both short and long those some days better than other

Used to get night sweats but only round kneck

rashes and pimples come and go


panic attacks

chest pain and pain going down my arm 

pale skin

I have/had lot more symptoms but these only ones  i remember atm.

Doctors keep thinking it's all in my head and I know it's not which is why im still fighting and getting them to make refferals. I've lost my job, my girlfriend and sure my friends are getting sick of me because of this. How i feel can change so so quickly without any warning. On sunday i was feeling pretty goodish and went out to park allday with church friends and played with kids but latter even started feeling rough and woke up monday morning with my whole body in pain and esisodes of brain feeling like it's being attacked again. I'm only 27.....

17 Replies

I know exactly how you feel. I was in the military when my symptoms started at only 18 years old (I am currently 20). Currently I am diagnosed with connective tissue disease which includes lupus and a bunch of other diseases.  My husband rarely understands and doesn't get the amount of pain I am in.

I highly suggest not over working yourself. You went all day at the park and you paid for it. The sun and heat are my enemy, they may be yours too. I know I do to much, I will be in so much pain that I can't walk. Don't do too much. You have to learn how your body is talking to you and learn to say no. Just don't lose your life. 

If your girlfriend and friends don't understand then screw them. They are obviously not true friends if they are not willing to understand you can't be "normal". I know how that feels not to be normal and it sucks.

Lately, I have been getting to the gym at least 5 times a week and I have found that I am happier and feel better. It also helps that here in Wisconsin, US, that it's 60 degrees. I highly recommend going yo the gym though. It will help your depression. I know it helps my depression and my anger issues. It may help you too.

My symptoms are:

Joint pain- hands, wrists, knees, ankles, and feet (it is almost like growing pains but 10 times worse than that)

Butterfly rash on nose and cheeks

I used to have night sweats. I would be covered in sweat

Swelling of the joints. If I wear tight pants or even too tight of anything, especially on my feet, I have the imprints for hours.

Hot flashes

Ryneolds (spelling)- coldness of my fingers and toes. I have to cover my hands when I pick cold things up.

Sensetivity to sun light

Symptoms are worse in the sun and heat

Mouth ulcers (sores in my mouth or blister like things)

Over exerting myself can cause joint pain

Those are all that I can think of currently.


The sun is my enemy too. I am currently in England and when it gets to 20/68F and higher I just get overheated.


I am the same way. In the summer the temperature in my house has to be 69. 70 gives me hot flashes and 68 makes my fingers freeze.


Hang in there hypo.  It's great you'll see most experienced patient friend always says we should start @ immunology for a full investigations to determine our individual brand of immune dysfunction & connective tissue disorder....and then be referred to whichever clinics are most relevant to our profiles.  But in the UK, immunology referrals are hard to get....due to sets of sinister bone profile-related blood results, I was lucky enough to be referred to immunology last year...and this referral was by the brilliant rheumatology chief who began to figure me out 5 years, at 62, I'm feeling better than I have since my 20s.  

The past year with immunology has been fascinating...and helped HUGELY to clarify my version of lupus (oddly enough, it turns out that alongside vascular ehlers danlos hypermobility + infant onset vasculitic lupus (& of course the usual collection of secondaries), I have a v specific type of early onset Primary Immunodeficiency) we know all this, a very targeted tailored treatment plan is more possible. 

Remember, in many cases it can take years to get even an initial speculative diagnosis...and then this can be a provisional diagnosis for several years to come...for sure, in many cases, the diagnosis & treatment process is long & drawn out...which reflects the seriousness of these conditions, the complications of diagnosis in view of limited current understanding  + resources & the risk-benefit ratio of the meds prescribed in treatment...PLUS, sorry to add, the degree of ignorance re immune dysfunction & connective tissue disorders & Dysautonomia that prevails out there (even amongst medics who really should know better)

I'm glad you're here...this forum is THE GRRRREATEST!

🍀🍀 coco


I had most of these symptoms and am diagnosed with undifferentiated mixed connective tissue much better now on medication.hope you get sorted soon,don't let them fob you off !!! 


Join the club my quack thinks/say's in my head but think more a bearing on them as there either lazy or don't know what there doing/up to/out of there remit? Most think above there knowledge then fall flat on there face when someone else finds the problem that they missed!

But hang in there i had problem while back had a form that had to be filled in with medical things for authority as having a medical condition so when asked had to say yes so they have to give me a letter telling how/what/where etc but charge you for the displeasure of it!

But quack put down things i wasn't taking/not on my prescription list but things being dealt with/taking didn't put down then put down i present difficult symptoms as gets letters back every week from places etc(in my head/psychosomatic!

Had a fall out there with front desk said if putting this or not putting down whats he doing to other people in more danger?

So changed Quack they sent me to Endo which found have Pituitary tumor/my hormones are all me referred to Fibro place in Queen Square for acupuncture(which is good)plus few other places and to place which found have Asperger's.

So they moved things on where as lazy ones had held back by ignorance.

Asperger's has some great sides like can see things so quickly that others miss and can see/know where things are going/heading before anywhere near it and i can read something upside down&back to front quicker than you can read normally!

But i also research/work things out as one of them and many have proved true now i worked out they did a study on females hormones with pain at hospital in oxford i worked that out few years back and when my good quack left he said thank you for guidance when i said thank you for help and appreciate it and commented i find things that he never even see's/knew about.

But to me should be a team as we have to live/deal with this 24/7/365 no days off for good behavior and i know my body as trained coach as cycle raced for years and with gym work learn what your body tells you and signs things are not right but Quacks just ignore that/them/you as you can't know "your" body and even had one argue with the RSA/Raynauds place which does know what there talking about! And showed her ignorance when said it only effects hands&feet! where as RSA said any part of the body!

So it's like two battles one with the body other with them to get things sorted out! so hang on in there!

I asked about Lupus as sores in mouth/ falls round nail beds.don't heal goes dry/scaley etc if been out in sun or often does anyway.tired all the time again.Pains down marks easily if pressed on and leaves indentation.joints stiff/stuck.Quack even commented i had protein in my urine while back!.They did find something had attacked my thyroid last year when ultra scanned it showed a bleed etc they said!mind back there week after so will speak to them as my glands under chin get painful/swollen often.

I do get red across face if out in sun now look a bit pandafied with red below eyes lasts for a while tends to go by next dayish.

But my breathing is poor heat tends to make worse got bad after they gave me T hrt gels last year which ended up with me having TIA/mild stroke as BP was over the roof im norm 90/60 still getting face twinges as it went all numb but my arm/hand is numb/pained gets restless as grip feels odd but found the good sea air helps a lot with breathing which makes me feel better as more oxygen in blood!

I think a lot of mines to do with Glyphosate as used to work with it when sprayed weeds etc that causes so many problems ones P tumors in the lab!

In males it messes up our endocrine system becoming more prevalent with GMO crops/air/Water.

So your not alone with this many of us similar think half the time it's harder dealing with medical people than the illness it's self?

Mind have to go to Quacks soon for another head kick in/slap in the mouth session(as that's what it feels like)Often come out with a bad taste in my mouth.


((hugs)) It is so hard to feel bad and doctors tell you it is all in your head. And if it is, then it is mental illness and they should treat it with kindness and meds. But we know it is not. I am diagnosed with MCTD Fibromyalgia Hypothyroid IBS. I have had a positive ana twice over the years but nothing established. Rhematologist refers to my issues as lupus or lupus trying to manifest itself. hang in there.


Hi Hypo101,

When you saw the rheumatologist a year ago, do you know if they did any blood tests for lupus? Good luck with your immunology referral. I hope that they are able to help you reach a diagnosis so that you can start on some treatment to alleviate your symptoms.

If you need more information about lupus and how it is diagnosed, we have a free pack which you can request or download from our website at


Hi I know she did ANA which was negative but I know that negative ana doesn't rule it out and I was nowhere near as bad then as i am now.


A few of these symptoms are sometimes symptoms of systemic Lupus but they are also symptoms of multiple other conditions. Some of the list are also not lupus symptoms at all, but might be other related conditions. There is an official list on NHS website or lupus UK, but diagnosis depends on blood results as well as presentation. 

I am glad you have a referral for immunology as I am sure they will get to the bottom of it or be able to refer you to someone else. I hope that you find out what's going on, either way, so that you can get some control back.

Are you on any pain relief or treatment for your other conditions? Sometimes the treatments are very similar. 

For now try to take care of yourself (eat well, rest and exercise). This will help your body, no matter what the cause. 

All the best with your appointment and keep us updated with how you get on. 


Hi I'm not on pain relief. Sometimes if pain is quite bad I'll take neurofen but I usually try and wait it out than put more drugs in my body. 

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There was recently quite a good discussion here about current clinical & immunologic criteria for diagnosing on this link:

Am so glad you've got lots of great replies, hypo!

🍀🍀🍀🍀 coco

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I have Hashimotos, which is another autoimmune disorder, as well.  It started when I was having children.  At times, I have felt sooo terrible.  It's like having a bad case of the flu along with lead flowing in my veins.  Each step feels as though I have cement boots on and it's an effort to lift my darn head off the pillow.  Aches and pains all over. Depression and dry, tough skin.  I have had terrible hip pain also.  I can really identify with most of the symptoms you have.  It will be interesting to see how your bloodwork turns out.  Even if it's not lupus, I can say from experience that Hashimotos is NO JOKE.  My heart goes out to you.


Thank you all so much! Today the tingling has gotten really really bad and is affecting every single part of my body to various degrees.

Another thing I've been thinking about and what I always come back to it - couple of years ago something happened that's difficult to talk about and i was given 3 hep shots over 6 months. Since having my first shot and startign thyroid medication i've become very sick and getting worse and worse. I've read that HEP B can be trigger for autoimmune disease epspecially lupus.

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Am v much feeling for you.  I have had chronic neuropathy tingling & numbness pretty much all over for decades.  It's truly unnerving (no pun intended! 😜).  And exposure to a pharmaceutical prescribed to my mother for over 5 months while bearing me order to avoid miscarriage...many if my Drs think this exposure is one of the most probable causes of my SLE  etc etc.  

When I feel disturbed by this thought,  which happens regularly...I too can't help coming back to this... I try to remind myself there is seldom 1 cause of something...e.g. there is also a degree of immune dysfunction & connective tissue disorder in my family, which must be implicated in my case.  

Life is complicated...almost everything involves a risk-benefit is what it is...and the determination  we + our doctors feel to do the best we can to improve our health probs is what's important.

Wishing you all the very best with immunology 

🍀🍀🍀🍀 coco


I can relate to quite a few of these but anxiety can give u inflammation so I have read 


Night sweats thought it was me imagination I wake u at 5 wet through like I have wet the bed hate it among other things been free of it for 4 years then bang again this is the 5 th time since 1991 


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