Lupus symptoms

[Tinka10753]

I'm 52 recently post menopause. Started having heart arrhythmias, pleursy, butter fly rash. Diagnosed with Raynaud's yrs ago. Feet and hands cold on warm days. Memory loss. Tried HRT, but made my heart for nuts. Seeing my primary physician next wk. I've had blood tests yrs ago, but negative for Lupus. What's going on? Anyone else having heart issues do to Lupus and/or menopause? I had full cardiac workup last yr. Heart fine. Really?

[Paul_Howard Partner LUPUS UK]

Do you remember which blood tests you had done? Was it your GP who tested you, or have you seen a rheumatologist for investigations?

[Tinka10753 in reply to Paul_Howard]

ANA I believe. From what I've researched so far those particular tests are not necessarily Lupus specific regardless if positive or negative. But what I'm starting to see on the comments section from this forum is it all depends on what your doctor initially suspects. I'm here in the states so doctor's are dictated by diagnostic code's in order for insurance to cover tests. My point is, even though I suspect something is wrong, it sounds like I'll have to have a strong case for further test's.

[Paul_Howard Partner LUPUS UK in reply to Tinka10753]

You are correct that ANA results aren't specific for lupus and so a positive result wouldn't be conclusive evidence for a diagnosis, though it does contribute as one criterion.

Are you able to request a referral to a rheumatologist? If your GP is unable to provide a diagnosis for your symptoms then a referral to a specialist should be reasonable.

[Tinka10753]

I will push for that. I'm a RN and as one doctor said to me yrs ago, it can be dangerous because I may know too much but not enough. I don't think I am a hypochondriac but boy, you start reading about all the signs and symptoms on this site that people are reporting, I almost convinced I have everyone. Sort of a mass hysteria syndrome. But it reminds me of the cold adage: " if it looks like a duck, walks like a duck and acts like a duck, it must be a duck". Not necessarily, especially with Lupus aka the great immitator.

[Hidden]

Tinka I very much relate to this dilemma. It's important not to find a disease you dread and then locate the symptoms to fit of course. And it's all too easy. I've had numerous tests for multiple symptoms - most have come back normal - but a few have shown me that I'm not losing my marbles entirely. I too have ectopic beats and have had unexplained rashes all my life. I'm also 52 and also post menopausal. When I see a GP now I feel as if I've got a hat that is only visible to doctors with the words written on it (for their eyes only) "patient suffering from anxiety about her health". In fact I don't even feel as if this is the case - I know it because a few hours ago a new GP in a new surgery showed it to me on my notes!

I pointed out to him, red faced with stress of seeing this in writing, that at the time my GP had said that she would write explaining my temporary depression as secondary to the medicalisation of my life. I was diagnosed with RA four years ago this month and am hypothyroid. Maybe these diagnoses were just made by over anxious doctors?! If not then why oh why do they make me feel so fanciful and neurotic? I've been put on Amitriptyline, Prednisolone, Sulfasalazine, methotrexate pills, methotrexate by injection, Hydroxichloraquine, pamiprexole, gaberpentin, Duloxetine, Azathioprine to name but some. Do many post menopausal hypochondriacs usually get prescribed these drugs I wonder???!

My symptoms tarry with those of lupus or Scleroderma but my ANA is equivocal and I've had too many reactions to too many powerful drugs now - who wouldn't be anxious in my shoes? I think this is what the GP thought to himself today on reading my notes but I was too flustered to present myself well. It's so demoralising being made to feel like a hypochondriac that I've decided to quit searching for answers now and just find ways of managing my symptoms as best I can. If nurses have a tendency towards hypochondria as they say - then what on earth must most GPs be like?!

[ac489 in reply to Hidden]

I also feel like this. It's like I am nuts and just going through menopause. I am 53 and have been having so many symptoms always brushed off as something like allergies, sleep apnea, menopause, etc.. Brain fog and chest pain brushed off as thyroid dose off. I have never had the butterfly rash but get rash on my arms that takes months to go away. I have had one for several months at the top of my behind now. When my heart felt like it was skipping, doctor said it was probably just side effect of my synthroid which I have been taking for twenty four years when I had my thyroid taken out. So this group has really help me connects the dots and I have not been officially diagnosed but sure it is Lupus since ANA was positive and symptoms all point to it. Now I must learn to accept it and cope with it

[Tinka10753 in reply to Hidden]

Dear Twitchy toes, I'm smiling after reading your comments about anxiety. That's me too evey time I feel a new ache, heart flutter, etc. The thing is, we were told in school about the medical school textbook syndrome. You can have a symptom match any hundred's of disease's. I do know this though as fact, up until last December, I felt great. Now not so much. I may very well be just menopausal and trying to fit unrelated symptoms into something else more manageable. But I also did the research too where there is strong correlation of menopause onset and newly diagnosed Lupus.

I ve been ill last few wks with sinusitis. Finally went to urgent care after work, got put on antibiotic and prednisone for the pleurisy, and 4 days later had classic butterfly rash. Could have been medication induced, but would have thought prednisone would cancel it out.

At least I have this wonderful community/forum to vent out my worries and frustrations. I don't tell anyone else less they think I ve been reading too much medical stuff.

Hugs to you!

[Hidden]

Well a connective tissue professor last year told me (and wrote this in his letter) that if I had lupus it would have damaged my organs by now. He said it invariably affects women during their childbearing years and this is when damage occurs. By now I'd be improving where my symptoms are worsening. I've thought long and hard about this since and I think this point of view has caused more trouble for me than anything. I know of several people on this community who have been diagnosed Lupus post menopausaly and quite a few with no organ damage to date. But this chap is highly respected in this country and if he says it's not lupus it would take a brave rheumatologist to contradict him. Tx

[Tinka10753]

Bully for him.

Evidently needs to do some more reading on the subject. It's possible to have mild to severe forms of it. And in varying degrees of organ involvement. Anyone who tries to give absolutes with this disease is borderline arrogant.

[misty14]

Hi Tinka

Sorry to read of your health problems. I am experiencing similar symptoms to you with chest pain . It's been a six year battle for me and I've had it acknowledged by my Rheumy that it's inflammation of the lining of heart and lungs after having all the tests to rule out heart attack etc. It can be treated by an NSAID or steroids and I'm trying a different anti inflammatory colchicine which is an anti- gout medicine and it's working for me. I also do know of people who have been diagnosed with Lupus after the menopause so it is possible. Doctors need to have much more of an open mind about this!. Hope I've helped? X

[Roanna in reply to misty14]

Tinka, I too have been struggling with very much what you have, unfortunately I just lived with it the best I could as no one can diagnose it to treat it. Intercostal related is what my Chiropractor has decided and massage really helped. Recently my Rheumy heard pleurisy so finally started Prednisone again, I don't feel crazy now. I haven't been on pred for many years. Thank god it is working. T3s are wearing me down. I don't get on this site often so its nice to feel semi normal when someone else is going through the same stuff. Thanks for your post.