Two nights without sleep due to pain, yesterday to the docs because of my foot hurting so much and so swollen (apparently caused by our friendly loopy) and today hardly manage to crawl along in the flat. Weather forecast is for heavy snow (I'm in Switzerland), and what does my friend say to me????
Lets go for a walk, sure it would cheer you up and make a change for you................
I'm speechless
That's when you KNOW that despite others making the right noises every now and then when you tell them about pain, they don't really listen! Well, we understand, Ursi, so rant here when you're in pain.
Snow, how lovely!
Take it easy and I hope the pain subsides soon.
thanks purpletop
I get this all the time from my hubbie, ursi, so I know how frustrating it can be. You would think he could 'see' some sign of all the pain & fatigue after 13 years of lupus. Most of the time I am grateful that he & others cannot see it, except the doctors! Have you asked your friend to read The Spoon Theory? I find this is a great way of helping them 'get' what you are going through. I hope you feel better soon. I'm also jealous of the snow, you must think us Brits are crazy?! X
Oh yes,he has read the spoon theory and said he understood it. But when I say I have used all spoons up it doesn't stop him from suggesting a shoppingtrip(:
No, Brits are not crazy, they are the loveliest, caring people. Although I am swiss by birth and started life over here for 20 years, have been living in UK for 43 years and decided to return to this beautiful scenery for the last chapter. Didn't count on this scenario.
This illness certainly makes you rethink your plans and readjust, doesn't it?
Take care roobarb xx
Thanks ursi, I guess no one can ever really understand an illness until they have to live with it. But that doesn't mean they don't love us. How is your foot now, did the doctor give you any meds for it?
hi roobarb, they have upted my cortison to 50 for a few days. so after a night from hell it has improved a little but now surfaced on the other foot(: All I can say is damn this illness.
Hope you have a reasonable day xx
I'm sorry to hear how much pain you're in & know exactly how you feel. I have been dx 14 yrs ago, with a lot of other autoimmune diseasses following it! I had breast cancer a few yrs ago & had radical surgery! I now have Temple Arteritis which can be so painful that I can't describe what it's like! My back has been degerating for the last 25 yrs & have osteoporosis & osteoarthritis which is very crippling most of the time! But like everyone else keep trying not to let these things get you down. The fatigue can be so awful at times! The strange rashes I get are not like the classic buutterfly shape that many Lupus patients get or the wolf type of rash! I have got so many other health probs & worry about mentioning any new types of problems. When you said about your foot would you mind telling me about it please? Only I have been getting terrible pains in my right foot for some time now & on upper part of my foot nr to the toes but not so close, I have a red patch which looks a bit like a burn & a lot of my foot is swollen! I did have a fall a few mths ago & foot went under me .... but the drs at A & E said it was o.k. But I know something is wrong. I don't want to sound dramatic but it certainly doesn't feel right. I don't have to put hardly any weight on it as I'm in a wheelchair permantly, but sometimes my foot has to touch the ground whilst transfering & the pain then is excrutiating! So I just wondered if you could tell me about your foot pains! Thanks very much xx
Hi goldengirl, all I can say really is that my foot started hurting underneath on and off and at different places for a few weeks now. Then suddenly excrutiating pain and swelling. Top didn't hurt when pressed, but underneath...oh boy, made me feel sick.
Doc has upted my cortisone to 50 for a few days now and today it is a teeny bit better but started on the other foot now.
Hang in there, we know things change all the time.
Take care
xx
Have they diagnosed a connective tissue problem? If it feels like under u're foot is being stretched or pulled it could indicate problems with muscle, tendons or ligaments. I have it all the time & have mixed connective tissue disease., it's a pain in the arse....well, not literally, not yet anyway ;0)
could also b a type of arthritis (gotta love lupus & all her secondary conditions she brings with her lol!)
Doc mentioned Lupus Arthritrits, never heard it before. I am waiting to go to a specialist hospital in Zürich (equivilant to St Thomas's I suppose) to have a proper diagnosis and hopefully the right treatment. They are sooooooooo behind with stuff over over here, you wouldn't believe it. x
Thanks for your reply ursi, I have since hirt my foot when my son & I were in the dr's car park & were hurrying acrosss the rd to avoid cars coming through when we hit a small log (son didn't see it as was concentrating on traffic) my wheelcahir was snatached from him & twisted sideways wwhere my foot was dragged under the ffootplate, then it tipped forward throwing me out & I landed on my rt side where the wheelcahir was on top of foot! I was screaming in agony & shock! Someone stopped their car & helped my son get me in the wheelchair. Dr told me to go to A & E to get x - ray and she filled a form so I wouldn't have to hang around & could just get it x - rayed & go. Did this & someone had a quuick look at it & was told it wasn't broken I had torn the ligaments & tendons. She didn't x - ray all my foot she didn't do the ankle when I asked her why not she said Dr hadn't asked for it, & she couldn't do it without my dr's asking She saId if it wasn't getting any better to go back & ask for another form for my ankle to x - rayed.I haven't gone back yet!
oh dear, not yyour lucky day was it. Sorry to hear about the bother at the A&E. Makes your blood boil, doesn't it, when they can't do the obvious cos they have not been told. Wonder if they need written permission to go to toilet and a special one stating if its for a no.1 or a no.2??
Hope you soon feel better.(((((HUGS)
lol! That's REALLY what u want 2 do in weather like that! Bless u & well meaning friends. Please don't tell me he suggested going shopping 4 some more spoons ;0)
HLA-B27 - what do you know about it?
Not naming names but where do I go from here?
I made it to Monday! Thank you everyone!
