Lupus and Meniere Disease

Hello everyone! I just happened to stumble upon your forum today and really would appreciate any suggestions, advice and support that can be given.

Been recently diagnosed with alopecia secondary Lupus, and have been prescribed Hydroxychloroquine. I am totally oblivious as to what this means.

Does anyone knows what this REALLY means? Would you please explain without the medical jargon????

All I know is that my lovely hair is getting thin - have lost most of it from the crown of my head - and my skin and head burns like crazy - even more so now that the winter season is fast approaching. On some occasion, my feet and hands swells and goes bright red. The consultants have ruled out Rheumatoid Arthritis. There are days when I find it difficult to concentrate, total fatigue and just plain out of it. Then there seems to be some form of palpitation - again the doctors have said my heart is o.k. My right hand has grown so weak, I cannot lift 1 kg bag of sugar! This scares me because I'm right handed. The nape of neck feels as if it is crunching down into my spine made worse after engaging in neck rotation exercises.

Nobody seems to understand. I just feel so drained. Angry and frustrated. My GP seems to think that I have it all in my head. Really?

One day I was fun-loving, sociable with loads of friends and very active. The next: friendless, housebound and inactive - difficulty remembering stuff. Can anybody else relate to what I'm describing? Am I losing it?

All of the above came about after a back surgery in 2010/2011. Since then, suffer from stiffness and swelling in my lower back, cramps, electric spasms, etc in my leg and my mobility has been affected to the point where I am now wheelchair bound and depend on a carer to assist and escort me. What are some of the exercises that wheelchair users can engage in? Any suggestions?

I stay away from stressful environment because this triggers the Meniere.

9 Replies

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  • You're going through a lot!

    Yes, the diagnostic & treatment process can be very long, involved, confusing , frustrating and infuriating. My feeling is that you've come to the right place: solidarity is what this forum is about. Over the past 3 or so years, the empathy & info sharing have helped me hugely...and, at first, I feel as if I felt pretty much as you do now ... So: Welcome

    Am wondering if possibly your current diagnosis is alopecia, secondary to lupus. You're right: it is important your drs explain diagnosis clearly, but the medical terms drs use often are not much help to most patients. as I understand it, primary conditions can take some time to be diagnosed (it has surfaced lately that my primary lifelong has been systemic lupus, but I've spent most of my life being treated by drs who only diagnosed my secondaries). Primaries are a patient's most basic fundamental condition. Primaries seem to predispose us to various secondary conditions. Secondary conditions are usually not as severe as they can be when they are diagnosed as primary conditions. Argh: the jargon is so cumbersome!

    Hydroxychloroquine is often the first prescription med used to treat lupus. Your drs should follow your response to hydroxy attentively. Based on that response, your drs & you will design a treatment plan that works for you...eg 3 + years ago when my lupus was recognised, I started on daily hydroxy. A year or so later another daily med was added, and so on. Now I'm feeling better than I have since my early 20s...and I'm 60 next week! My canes seldom get use, and reliance on a wheelchair no longer is under consideration

    In my way, I can totally relate to most of the symptoms you describe....and I've lived with a significant spine condition all my life, + had several serious procedures on my spine over the years involving anaesthetic & heavy sedation. My impression is that certain symptoms related to what we now consider my version of systemic lupus, seemed to have been persistently aggravated following these spine procedures. But, my good news is that because my rheumatology team & surgery team are experienced, attentive and full of insight, we've gradually been able to figure out a cocktail of meds that has taken the edge off all my symptoms, and really helps me have more of a life

    I'm looking forward to reading the replies you receive. Am very glad you're here

    I hope you'll let us know how things develop

    Take care

  • thank you barnclown.. indeed, it's taking the consultants a long time to agree is it or is it not! In the meantime, I'm caught in the middle having to live with right sided weakness, brain blocks, memory lapses, + :-(

    Please can you tell me, will it be a natural common occurrence to have painful bruise looking spots appearing on legs/arms? It hurts like crazy. stay for days and then disappears. Like clockwork, it reappears again somewhere else. Then the warts/moles on my body seem to be growing/getting bigger. :-( Oh dear!

  • Hello again...carcrashgirl's wonderful reply brought tears to my eyes too!

    Yes, getting your head around all of this, and managing the mixture of feelings all of this provokes is so so tough...but, this forum has made all the diff to me while understanding & adjusting since I discovered my lupus several years ago...and I am far from alone in this...over & over other forum members post about how special this online community is. I'm so glad you found us

    The pattern & types of symptoms you're describing is familiar to me: the cognitive & neurological & circulation issues, the changes in warts & moles. You're probably taking photos of any visual symptoms, I hope: so you can give your drs prints when you're reporting in clinic. And you're probably keeping a simple log of symptoms: which can help you & your drs to recognise patterns which helps a lot with refining diagnoses.

    Remember: we're here for you

    Please do stay in touch

  • Thank you so much :-) I note you said your birthday is sometime this coming week, so lest I miss the date Barnclown, Happy Birthday when it comes! Have a good one :-)

    Trust neither of us will be experiencing any form of flare-ups!

  • Thanks!

  • Welcome, Denden, and although we're all sorry you've had to find us, I hope you'll find support, information, and most of all a listening ear here. We all suffer from a bunch of different things, the common thread being lupus or lupus-like conditions (sometimes, as Barnclown so rightly points out, the diagnosis can take *for ever*). I don't have a lot to add to what Barnclown's said, except to add that IT'S NOT ALL IN YOUR HEAD! That's a common reaction from people who haven't much (or any) experience with auto-immune conditions like ours. (Auto-immune is a blanket term that basically means your body is misunderstand what's going on and is fighting itself.) And whilst you would have expected at least sympathy for having to deal with the fatigue and the brain fog and the strange pains and weaknesses, the hair loss, the rashes, the swellings and bruises and all the myriad symptoms that we're all so familiar with, too much of the time people do think we're exaggerating, or being hypochondriac. Check out this blog by Christine Miserandino: butyoudontlooksick.com/arti...

    - the spoon theory is one of the best ways I've heard of making other people understand what we go through. You should check out The Lupus Society; they've got lots of helpful information at their fingertips. And the book I found very helpful when first diagnoses was Triona Holden's TALKING ABOUT LUPUS. And finally, in the midst of the really bad days it's hard to remember that there are good days too. Don't overdo it, but enjoy the respites when you get them. And we're always here if you just need a good old rant. (We're all *very* good at ranting!) And for now, have a good day and fight on!

  • thank you very much Carcrashgal. You've brought tears to my eyes. Finally found someone who understands. Sorry, I'm crying now.. I really thought I was going loopy.. I lost my job, self-esteem, everything.. I just down every day cooped up in my house. The only persons I see on a daily basis is my carer.

    It all so very strange/new to me. There are times when I do feel so alone.

    Anyway, thank you so very much will check out the blog.

  • Hi denden,

    Would you like me to send you one of our information packs about lupus so that you can learn more about it? Just send me a private message or email paul@lupusuk.org.uk with your name and address and I'll put one in the post for you.

  • That's what's so wonderful about this forum: like you, before I found this, whilst in my *head* I knew there must be lots of people like me, in my *heart* I thought I was pretty much alone - and then I found Twitchytoes and Barnclown and all the rest and all of a sudden even the bleakest day is just a little better because *someone out there understands*. Sometimes that's all it takes. For now, a lot of us advocate chocolate :-) - and whatever your comfort of choice, remember: you deserve it! And hang on In!

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