Lupus symptoms?: Hello all Hoping the members in... - LUPUS UK

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Lupus symptoms?

Uk1011
Uk1011

Hello all

Hoping the members in this forum can help with this. Over the past 6 months I have been experiencing chest pains (the past 5 or 6 weeks they have been quite intense and are now affecting my upper back too). It all started after I had a blood clot in my leg which the doctors thought went to my lungs (hence the cause of my chest pain). However a scan on my lungs a few weeks after the clot diagnosis said there were no clots. I have had many tests - heart scans, an ECG's, and other tests which have ruled have out anything sinister, but the pains are still continuing. The doctors then said it could be muscular/skeletal, but don't see how it could be as it hurts when I breathe deeply too.

Coupled with the chest pain, over the past 3 months I now have constant daily headaches - which my GP has said is due to tension. I know my anxiety levels are high at present, but I've never had these before (when I have been stressed/anxious before).

I have also noticed a bit of joint pain recently - only in my knees, but wonder if that can be caused by muscle loss as I have been quite inactive these past few months.

A recent blood test (to do with my clot) identified some lupus factors and I saw a rhuematologist last week who did some blood tests - will see him next week for the results.

My question is can chest pain, headaches, bit of joint pain be caused of Lupus, and if so has anybody else has similar symptoms with this at all - if so how have you got better.

Unfortunately not knowing what is happening in my body these past 6 months is not doing a great deal for my mental health and any guidance here is appreciated.

Thank you.

Tom

35 Replies

I have had all of those including chest pain. I am now on Hydroxychloroquine for Lupus and Sjogrens and also take steroids. When I get the pains (flare) I increase the steroids temporarily.

Uk1011
Uk1011 in reply to Margaret1940

Thank you Margaret for your reply.So perhaps the symptoms I have could be Lupus. How did you deal with the headaches- did anything make them better.

Tom

Margaret1940
Margaret1940 in reply to Uk1011

Only paracetamol. I cannot take anything else as I am on blood thinners. Always good to see a doctor though.

Uk1011
Uk1011 in reply to Margaret1940

Thank you Margaret.

Snap, looks like we’re alike in that case. On blood thinners too for the clot.

Had you ever thought the blood thinners was the cause of the chest pain - mine started the same day I started them. Although they have been changed 3 times and the chest pain is still there.

Tom

Hello Ul1011,My experience of Lupus which I have had for years, has caused me to have some strange and unexplained symptoms and pain.

The road to diagnosis can be a long one, initially it was for me until I saw a rheumatologist...

I hope you find your answers jx

Thank you strawberrylips for your reply. Yes, very much hope the rheumatologist can shed some light on this. Think not knowing exactly what is going on is sometimes as infuriating as the pain itself.

If it’s not too much trouble, would you kindly advise what symptoms you are experiencing/ have experienced with this - just so I can see if it relates to my symptoms.

Thank you

Tom

Tom...Have you checked out the 11 point criteria for lupus ? Pleurtic chest pain is not uncommon. The dr could be referring to your intercostal muscles which are the muscles that move the chest cavity.a bronchial spams once pulled all my inter costal muscles on my right side...it took many weeks to go.I have had chest pain for 7 years after pleurisy in both lungs.i can read my chest pain now and can increase my steroids accordingly. Stress is a major cause of headaches and must be kept in check. Joint pain in lupus tends to be symmetrical and flit between joints.

If you have lupus (and I hope you dont) you dont get better you only go into remission.its a very long journey to diagnosis ...on average 6 years ( for me 5 years) and treatment plans take months to start to work...so there are no quick fixes I'm afraid. You need to be patient and work with your rheumatologist.write a symptoms list to take with you.Good luck x

Thank you Spanielmadlady for taking the time to reply so concisely to my post. Appreciate it. Haven’t checked out the 11 point Lupus criteria - do you have a link to it at all, or advise where I can read it.

Sorry to read that you have had it for a number of years and hope that you are able to manage the pain it causes.

Yes, do hope that what I have is not Lupus too, but if it is, having a definite diagnosis will at least put my mind at ease a little. Having already seen a number of doctors over the past 6 months - and getting told “we can tell you what this isn’t, but not what it is” doesn’t do much to help with the stress of it all.

Thank ms again.

If you Google it it will come up you should be able to identify with 4 or more.mine is a long story ...I won't send you to sleep with it but i was ill for 5 years often told it was in my head.i was only sent to rheumatology when a professor of respiratory told me to stop the steroids....I did and I went stiff.i have 2 places of pain and usually it means my lungs are starting to flare hence the steroids.im prescribed pregabalin for pain now.Lupus affects connective tissue so lungs,heart,kidneys and brain can be involved ...pleurisy is also common

Dont hesitate to ask here or your rheumatologist x

Will do. Thank you Spanielmadlady.

Gosh, 5 years for a diagnosis is crazy-sad to hear you had to suffer for so long without knowing the exact cause.

Think that is the frustrating part of being unwell- not knowing.

Certainly is especially when they dont believe you...its taken another 2 years of treatment to become stable .the initial thought was it would take 4 years to put me into remission .they have since found I have lupus in my kidneys xx

Oh dear, that is very sad.

God willing, it does get worse and you are able to live life to the full.

Tom

Uk1011
Uk1011 in reply to Uk1011

Apologies - meant to say it does not get worse.

🤣 chronic fatigue means life as I know it has gone and powerful immunosuppressants means I must keep my distance from people (even before covid) .it also put me into heart failure for a year in 2014 so as you can see you dont get better.lupus treatment is about preservation x

For info on LUPUS see

lupusuk.org.uk/

Info on a condition associated with Lupus which causes blood clots. (Hughes Syndrome/antiphospholipid syndrome/ APS/"sticky blood")

ghicworld.org/

healthunlocked.com/hughes-s...

Blood tests for Hughes Syndrome

1) anticardiolipin,

2) beta-2 glycoprotein I (β2GPI),

3) lupus anticoagulant.

They need to do these tests twice, 12 weeks apart, to exclude false positives. Your rheumatologist may have done this already.

Uk1011
Uk1011 in reply to baba

Thank you baba. Appreciate the information. Only had one set of blood tests last week, and seeing the rheumatologist next week to discuss the results.

Tom

Some of that could be, but the chest pain is also found in a few other systemic autoimmune diseases. Joint pain spans over 50 types but can also be, as you said, related to lifestyle (or a combo). Headaches should be tracked and tension headaches are a very real thing that can arise in many situations of stress even if they haven’t in the past.

Highly recommend you are careful with jumping to Lupus before you speak more with your physician and see a specialist.

Uk1011
Uk1011 in reply to katidid

Thank you for the informative reply Katidid.Appreciate it.

Tom

katidid
katidid in reply to Uk1011

You might also ask your physician about a sometimes associated disorder called POTS. Patients often report heavy chest pain, are at high risk for clots, headaches and other issues (dizziness, fatigue). It’s a neurological disease that often coincides with immune issues but displays more like cardiac. Anyway, maybe just something to ask about.

Uk1011
Uk1011 in reply to katidid

Thank you Katie - will ask about this - what you have mentioned seems to cover most of the symptoms I am experiencing, so will mention this.

thanks again

katidid
katidid in reply to Uk1011

Sure thing! I’ll try and pull out my memory some of the other conditions that also have similarity. Always best to rule things out. Best and hope you get answers soon ❤️

Hi UK1011 very characteristic of what I've been dealing with this past year. I am now on Hydroxychloroquine for Lupus symptoms and Sjogrens also taking steroids prednisolone. I’ve since also been diagnosed with giant cell syndrome vasculitis and multiple autoimmune diseases.

Uk1011
Uk1011 in reply to Fisher50

Thank you for your reply Fisher50.

Interesting to hear that you have had similar symptoms too, and glad you have had a definite diagnosis. Hope you are now feeling better with the medication.

Tom

Hi Tom, I hope you are feeling ok today. I have chest pain, feels sharp and so much worse if I breathe deeply. I also have headaches, joint pain, fatigue...etc. It took 10 years for me to get diagnosed but it was when I finally saw a rheumatologist that things started moving in the right direction. I was told the chest pain was inflammation of the muscles/ tendons in the chest wall. Stress is definitely a trigger for my symptoms so I practice a little mindfulness to help, you can get an app for it. As others have said medications can take a little while to work so you just have to give it time. My symptoms have not gone but they are a lot better than they were before the meds. It is just something I manage with rest and painkillers when needed. I take hydroxychloroquine and methotrexate at the moment. From this forum I know that the meds can work differently for each of us so again give it time and find what works best for you. I found it useful to keep a symptoms diary. It will help you to see if you have any triggers to your symptoms and it can help you keep track. I wish you all the best and I hope your rheumatologist can give you some answers soon.

Uk1011
Uk1011 in reply to Kath1

Thank you very much for your detailed response - it certainly helps when someone understands / has the symptoms as yourself. Although, sad to hear that it took 10 years for you to get diagnosed - not sure how you coped for so long without knowing. But glad to hear your symptoms are a lot better than they were - from what others have said on this forum it seems like once you have this illness, it appears to be more about managing it as opposed to getting cured.Your symptoms do sound quite similar to mine, so if what I have is Lupus, do hope the rheumatologist will be able to help with this.

Thank you again.

Tom

I do get pain in my chest when breathing in deep or when lying flat, it’s worse some days than others I have SLE. I have also had blood clots in the past too.

Uk1011
Uk1011 in reply to Babydriver012

thank you for your reply Babydriver012 - does sound similar to my symptoms too.

Hello. Yes I've recently had the chest pain. It was mainly on the right side,ribs, going round into my back, chest and armpit. I've had pleurisy before so knew it wasn't that. It actually felt like I'd be kicked in the ribs and my ribs were broken.I'm new to all this, saw the rheumotology department in hospital in November due to these symptoms, some blood work( my GP suspected lupus) . For the moment I've been prescribed hydroxychloroquine and given UCTD diagnosis. The chest pain has gone now, it lasted about 6 weeks( still have other symptoms) rash, swollen painful hands, dry eyes, headaches, fatigue. I found soaking in the bath, or shower head on my ribs helped and hot water bottle. I was told it's inflammation. Hope this helps you X

Uk1011
Uk1011 in reply to BonnyB

Thank you BonnyB for your reply. Glad to hear your chest pain has gone now and hope your other symptoms improve soon too.

Hoping that the rheumatologist will provide some answers when I see him next week.

Hi, yes I can relate. Prior to being diagnosed I had some strange symptoms which would come with intensity and then just go to be replaced with other issues. I thought I was going mad. Twice I ended up in A&E with suspected heart attack, only to be told it was a pulled muscle? After diagnosis ( and I have had many over the past 11 years often conflicting ) I was referred to a Cardiologist after a pre op assessment showed that I had shortness of breath and chest pain. Like you I underwent an Echocardiogram, had ECG, and Angiogram. They showed nothing. The Cardiologist to,d me it was probably Prinzmetal Angina caused by Lupus / UCTD. He gave me a spray for under my tongue. It does help when I have not got mouth ulcers but the biggest relief is that I now know that there is nothing wrong with my heart and however uncomfortable I know it will pass. I really hope that your Rheumatologist can provide some answers for you. Good luck xx

Uk1011
Uk1011 in reply to CecilyParsley

Thank you Cecily for your detailed response. Good to hear you do not have anything sinister going on, even though symptoms are uncomfortable.

Yes, hoping and praying the rheumatologist will be able to provide some answers next week.

Have to say, I am humbled by all the responses to my post and in a strange way, comforted that others have experienced/are experiencing the issues I am facing. Do not wish ill health on anyone, but when you hear others’ stories, you do realise that you are not alone in your suffering- even it it feels like it at times.

Thanks again.

Tom

CecilyParsley
CecilyParsley in reply to Uk1011

You are welcome Tom. Any Autoimmune condition brings with it a myriad of symptoms and we are all different but there is so much support here with wonderful people. Let us know how you get on please xx

Uk1011
Uk1011 in reply to CecilyParsley

Will do Cecily.

BeeManShrop
BeeManShrop in reply to Uk1011

Hi Tom My wife has had RA for many years. Last April she had a severe flare with intense pain in all her joints. Eventually, she could not eat anything without bringing it back so had to be admitted to hospital even though Covid was very much about. After 6 weeks and many tests the Drs found 3 infections - pleurisy, candidiasis all through her oesophagus and gastritis of the stomach. Throughout she complained of chest pain behind the sternum and around the diaphragm. Despite all sorts of tests from many different consultants they did not find the root cause of the chest pain. Now 6 months later, thankfully, the chest pain has eased and is only painful when getting out of bed and when she leans forward. After she left hospital a consultant contacted us to say that a blood test had come through showing she had an ANA positive with a Ds DNA over 1000 these are indicators of lupus. That was 5 months ago and since then there has been many more tests and even more consultants re kidneys, ENT and maxillofacial etc but still no firm root cause found. We just have to be patient and wait to see whether the hydroxy starts to have an effect. Sorry I can't offer any other advice as everyone is different. Just thought that no-one has mentioned the gastro system so far. All the best.

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