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101 questions (long post)

664 Views 15 Replies 13 Participants Last post by  tracy m
Hi all :)

Well not quite 101 :lol:, but i do have a few questions that i would be greatful if you lovely people could help me with ;)

1) Back pain :(
Every few months or so i get a weird ache/pain in my middle back on the left side near my ribs and kidney area, I have had tests for kidney stuff, ultra sound, blood tests etc and they were all fine so its not my kidney, the pain is achey and feels like theyres something pressing on my ribs (like somthings squished) these pains come and go throughout the day for a few weeks and then totally dissapear :rolleyes: when i have the pain im slightly breathless and yawn alot. Im wondering if its muscle spasms? i cant seem to find what sets the pain off and nothing seems to ease it, iv tried streches/bath/heatpads etc nothing really helps, but then out of the blue it just eases off and goes :rolleyes: Sorry if this is really confusing, its hard to explain BUT its getting worse and started on the right side too the past few days, and its really painful. For instance yesterday, got up,dressed,shower,ate breakfast, did some uni work, no pain in back at all (not even sore), then ate lunch, sat in garden and wham all of a sudden pain and breathlessness?!? lasted for 4-5hours then eased off again? it actually almost made me cry yesterday it was so painful :eek: and i NEVER cry!
Does this sound familiar to anyone? Sorry ive waffled on so much, I would go back to my GP but shes at a loss as to what it is too and normally by the time she sends me for any tests etc the pain has gone again :mad: and i also feel that it cant really be anything to serious as the pain isnt constant and i can go for 2-3months without the pain at all. Any ideas would be great! Sorry i'll stop now :lol:

2)Rash on my eye lids
about 2 weeks ago i got really itchy eyelids and eye brow area, the area went bright red and swollen, this lasted about 3-4days and then the skin went v.flakey, it then calmed down a bit and just stayed a bit red, now my eyelids have gone bright red again and slightly swollen. The only thing i use on my face is suncream and havent changed brands etc? any ideas?

if youve read this far then you deserve a medal!! :lol:

just one more thing, i promise :rotfl:

3) does anyone have allergies to foods? the past month when i eat certain foods a few mins later i get little pimple blisters on the roof of my mouth that are really painful, they dissapear again after an hour or so, im wondering if its an allergy? it tends to be certain fruit and veg which is annoying as i love these foods! Iv never had any allergies before.


Thank you so much if youve managed to read and make any sense of all this :rotfl:
So sorry for such an essay, im just trying to understand this confusing illness a little more and know that you lovely ladies and guys are the best ppl to ask as your living with these confusing symptoms too,

Wow thats it! phew! :lol:
(well for now anyway :wink2: )

x x x x x x x x x x x x x x x x x x x x x x x x ;) x x x x x
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Hi Bex :)

Wow, your title nearly half scared me to death!!! But there are only three :rotfl:

I'm not sure on the back/ribcage pain question. It could be down to so many things. It could, of course be muscular. I get that type of pain pretty frequently and, at those times, when I go to physio and she moves my back around on the board I suddenly realise that OUCH my muscles are all over the place. It lasts a few days then goes. It could be a touch of costonchondritis?? though I'm not really sure form the description, sounds like it might not be the right area...it could be some other type of swelling that varies with your disease.... It is unlikely to be kidneys as kidney problems are notoriously painless.

In any case, whatever it is, if it is getting worse it needs mentioning to your doc.

I have had that exact same eyelid rash. Quite perplexing at the time. Like my other skin problems it hasn't returned since I started plaquenil. I have no idea if it is a lupus thing or if plaquenil just helped there. I found some gentle "healing" cream (this one didn't have cortisone) the chemist gave me was the most helpful when I had it.

I don't know about the allergies. I do go through odd periods where I become highly intolerant to mushrooms (of all things). It seemed to be when my disease activity wasn't at all controlled and I can now eat them again. Of course, that is just my experience and it might just be something odd with me. Some things I eat now (can't identify what) make me suddenly start itching like mad around my nose and come out in tiny painful spots. Never get spots otherwise. I now recognise the signs and immediately take an anti-histamine.

Hope that helps a little, sorry to be so vague. I think these things can vary so much in one individual to another with or without lupus.

Katharine
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heyy,

I get the exact same pain and have gone through all the kidney tests and such but i also suffer alot with costochondritis and pleurisy on and off and am pretty sure its related to one of these if not both.

I also get the rash on eyes..its really sore and when i put any creams on my face it stings loads!!

So i am no help but at least i hope it is reassuring to know you are not weird/alone! xxxx
About the eyebrows and eyes --- it could be seborrhoeic dermatitis, an inflammatory response to your skin's natural oils (sebum) or the things that inhabit your skin and/or feed on the natural oils (sounds gross, I know, but all living beings have them.) This is what my GP thinks is going on with me. My father has a problem with this as well so I think there may be a genetic component involved, perhaps lupus related for us. For more on seborrhoeic dermatitis, go to http://en.wikipedia.org/wiki/Seborrhoeic_dermatitis

Barb
i'm not 100% sure, but is it possible that the rash that went flaky could be psoriasis? i know that i have psoriasis (and it is in the same autoimmune disease family as lupus) and i have developed 'plaques' of it around my eyebrows before. so it is a location where it could occur. just a though!

-Amanda
Hi there,

Psoriasis in the eye brow area is so so common. I have it, and occasionally get treated to me own little snowstorm of dead skin cells fluttering past my eyeline. Fortunately I have a longish fringe, and no one else sees the snowstorm so long as I brush down my desk every once in a while:)

Inflamed eyelids is called blepharitis. I got that too as a child chronically, but with that your eyelids end up welded together in the morning with sleepy dust.

What fun!
Seborrhoeic dermatitis encompasses eczema, psoriasis, and blepharitis.

Barb
Bex,
Ok your title got me to wondering how could anyone have 101 questions about lupus not much to know it is not curable and it sucks :rotfl:. So I had to find out what you were asking about. It was not that bad really. The back pain thing, yes but mine is more to the back and to the right side, and yes it hurts and yes it does take your breath away at on set. Not sure if we have the same pain but if we do sorry for sharing yet again :lol:. I can't remember what #2 was so sorry (it is not your story it is my memory these days, I am sorry).
As for allergies to fruits and veggies, yes you can develope them over time and also with age because of changes in the body, but not having a rash I would have to say this is not the case. It is more likely that the acidy fruits and veggies are irritiating the mouth and causing the blisters that go away as the acid is obsorbed into the body. Remember that I am not doctor so it is only what I think and what I have seen with other people. I would talk to my doctor at the next visit about the blister in the mouth after eating fruits and veggies and see what they think about the reaction and the time frame.
I do hope you feel better soon.
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yes tothe pain, and the eyelids and the allergys! Am currently pretty much allergic to everything at the mo,only fruit I can do is apples, and only just and some veg, get swollen lips,very sore tounge and itchy mouth and ears and forehead can swell etc,and also get ting blistersinside my lip, as amin the middle of massive flare I think it's all down to that! I don't know what the pain is tho sorry! :(

Jxxxxx
Hi Bex,

Certain nuts will cause blisters in my mouth.

Sounds like you are going to have to eliminate some foods then reintroduce them one at a time to figure out which things a really the culprits.

Take care,
Lazylegs
Howdy,
Back: yes. Umpteen varieties of pain including the paralizing "somebody just whacked me across the lower back with a two-by-four" kind.
Eyelid rash: no, thank God.
Allergies: really only one. If I am exposed to fruit I go into anaphylaxis. Killed me at least once. Oh, also to stinging insects.
All the best!
Douglas+
Hey there Bex - sorry you're having problems.

I had muscle spasms in my back when I had prednisone-induced osteoporosis. My doc explained it by saying that my muscles were working overtime to protect my spine. Doesn't sound likely that will be the case for you - the pain for me wasn't intermittent, it was pretty severe and more or less constant.

I have a fairly severe allergy to shellfish (I carry an EpiPen just in case), but the allergy predates my lupus by a good 10 years, and it's classic anaphylaxis.

Hope you get things sorted out soon!

Lisa

Thankfully none of my rashes are visible at the moment, as long as I'm covered neck to ankle!
Hello everyone :)

Thank-you all so much for your replies, very helpful as always :)

So i finally dragged myself back to see my GP today as the rash on my eyelid/eyebrow had spread around under my eyes over the weekend and is very red and angry looking, looks like iv been sobbing my eyes out haha, and is also quite sore and dry.

So her verdict - severe eczema and or hayfever allergy :(
asked her why its all of a sudden appeared, she didnt know, just said one of those things.
Treatment - Sodium cromoglicate eye drops daily and canesten hydrocortisone cream 2 times a day, and good old vaseline as often as possible.

Anyone used these products? i thought canesten cream was for thrush!?!
im a bit scared of using the steroid cream especialy on my face and a side effect says it can thin the skin which is not ideal on my face!! :eek:

I chickened out on mentioning the other things -back pain, mouth ulcers, i know im useless but i hate to feel like im botherng the docs all the time especially when symptoms come and go as they please, i feel stupid sayin well last week my back was killing me but its fine now.

anyway thanks again everyone for all your helpful advice :D

cheers x x x x x x x x x x x x x x x x
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Hi,

I hope you get some relief with those creams and drops it doesn't sound pleasant at all :(

I can say I have used hydrocortisone cream on my face for rashes and as long as you use the cream sparingly (esp as it's around your eyes) and not for a long period of time it should be fine. I've had no problems. The warnings are there for prolonged application - it's not a good idea to be on them for a long time.

love
Lily
Hi Bex i can relate to two of your symptoms the one with the pain in your back i also get this never found out what it is i describe mine as something inside near my ribs it feels like a babys foot pressing on something i no its not that thou i feel for you as this is very painfull when it comes and does last for quite sometime sorry cant be more help but at least you no others no how bad it can get

the second is the swollen and red eyes i woke one morning with painfull and swollen red eyelids on a visit to my doctor they advised me to go to the eye clinic where i was diagnosed with bletheritis they told me to bathe my eyelids with johnstons baby shampoo with cotton buds to wash the oils off the eyelids sounds strangr but it worked i still get this symptom quite regular give it a try it cant do any harm hope it helps tracy
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