Most hated lupus challenges (asked by a crazy Lupus warrior) and how to cope with them

Good morning/afternoon everybody. Hope you are coping reasonably well today.

I know this sounds potty, but I have my "preferred" problems with this annoying illness and wondered how others felt about it?

The worst for me is chest pains together with breathing probs. Close on it's heel comes mouth dryness and the feeling of throat closing.

The "easiest" to cope with for me are pain, itchiness and Raynauds, with the myriad of other stuff in the middle.

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  • Really, ursi? The pain, the headaches, the nausea, the having to stay indoors and away from the windows on sunny days, the sore eyes, and the lovely red cheeks, I can do all of this. The worst for me is that feeling of my throat is closing up - what is that? I have put it to anxiety. I also have, what feels like a bruise on my right side on my ribs (right above where your elbow touches) that annoys the "H" out of me. When I try to sleep on my side it feels like I am laying on something, if I lay on my left side I cannot rest my arm on body as it feels bruised there. Have had ultra-sound and apparently nothing there, which makes it more annoying. I go through phases of the chest 'discomfort' with dry cough which lasts 2 or 3 weeks and then it is gone, only to come back again a few weeks later. I don't like the cough as I have never smoked and it doesn't seem fair that I now cough more than my husband who has smoked. I cough if I talk excitedly, if I change position in bed, bend over, or - now we go back to throat closing up - if I don't have water handy to drink. Thanks for the question!

  • Hi chapter. Like you I would love to know what that throat prob is and perhaps how to avoid it. If you're anything like me, its easier to cope with stuff when you know what it is and the causes. Xx

  • Very true!

  • Most hated for me is the awful pain in ribcage (one-sided), x-rays, etc have shown nothing, rheumy not overly interested, suggested indigestion (2 yrs ago), must have been some heavy meal that made indigestion last 2 yrs! Then costochondroitis, or maybe not, depending on who I see.

    Causes awful pain, difficulty to lie or sit and at it's absolute worst, which I'd score a 9 out of 10 on a pain level results in me being on all fours on the floor and usually vomit due to not being able to cope with the pain, but hey, at least I'm told at the end of all this that 'it's probably the lupus'!!!!! No s*** Sherlock!

    The other stuff ranges from painful to annoying and includes joints, butterfly rash, flushes, rashes, tiredness, etc, etc,

    etc,,,,, - no prizes for guessing I'm having a bad pain day today, I'm not normally this negative.

    All the best to you.

  • Fatigue,chest pain, chronic joint pain , headache, hormones causing flair , dry eyes and mouth, teeth breaking due to sjorgens and rashes .

  • My aching joints never stopped me form going places I wanted to go. People with arthritis go anywhere and everywhere.

    However, since my skin became affected, I find I can no longer go to those sunny warm places. I look for places in the UK where I have never been before.

  • Highly ranked in my list of the most hated is COGNITIVE IMPAIRMENT (I used to call it brain fog, but that's too cosy a term for something so downright nasty) which, in me, tends to partner up with the deepest heaviest fatigue, dizziness and neurological weirdness. I hope I never forget the sensation last spring of discovering a prednisolone taper could relieve all that to an extent I'd not experienced in 30 years.....EUREKA!!!!!!!! All those years of conscientious lifestyle management weren't full of total failure, but they never got even slightly close to what pred could do...but, of course, now I know the effects aren't sustained

    The easiest to cope with....possibly secondary immune conditions like raynauds, sicca syndrome and lichen sclerosus. Consultants have told me that, as secondaries, such conditions are seldom as bad as they can be occurring as primaries. Even so, I've had to do loads of research, attend forums and work hard at management in order to minimise the effects of these secondaries as much as I seem to be able to....

  • Im 39 only just experiencing the chest pains and anxiety, had ecg last week everythings fine..exit will happen on random times..

  • Infections following dental treatment. Dry eyes. Over-estimating spoons and ending up bedridden for two or three days just because I walked too far etc etc. my arthritis has massively changed things for me - stopped me hillwalking, walking distances, standing for more than a few minutes.

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