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Discussion Starter · #1 ·
:hehe: hi I'm a 38 yr old female,recently diagnosed in march 2008 after 7 yrs of feeling like a total hypochondriac:mad:.if fact i still feel that people think there's nothing wrong (because you look alright!) so I'm really glad i found this site :)and hopefully find out more about how your supposed to feel ? as some days i think I'm going mad with all the aches and pains,headaches,rashes and the tiredness so if there is any body who can give me any advice of how you should feel it would be very much appreciated.hope to hear from one or more of you xxxxxxxxxxxxxxxxx:rotfl:
 

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Hello there and :welcome:

We met in chat yesterday and it's good to see that you have found the main boards :)

I'm sure you'll find a lot of useful info here and also a lot of friendly, supportive people.

I'm afraid I don't have much advice about how one is supposed to feel. It's very individual. The disease is complex and the way it affects us as individuals can be very different.

bye for now,
Katharine
 

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Hi and welcome to the boards.

Katharine is right, this effects everyone differently. I can tell you that most of the things you describe I have also had except moodiness. I am not moody and really never have been.

I hope to get to know you better and once you get on meds and they start to work you will find you will feel much better. Keep a journel of your symptoms as this makes doctor appointments easier.

Nice to meet you and again, welcome.:wink2:
 

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Discussion Starter · #4 ·
hi thanks for the reply its a relief to know that somebody else has these symptoms(i thought for a long it was all in my head). Ive been on plaquenil since last year they keep changing my dose, I'm now on 200/400mg every other day.
The only thing is I'm still very tired and suffering from really bad pains in my feet i suppose this should or will settle in time . thanks again xxxxxxxxxxxx
 

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Hello monkeynuts

It sounds to me as though your lupus isn't adequately controled yet and it's time to consider further medication for disease control and for symptoms as well as more thorough investigation for example finding out what's causing the foot pain. If the Plaquenil was going to be enough it should have kicked in by now. Quality of life is very important these days but often we don't express how badly our lives are being affected. Some doctors are far too laid back and do not treat sufficiently.

If your doctors seem unresponsive maybe you could seek a second opinion in Leeds which has a specialist lupus clinic or Newcastle which has a pretty good reputation too.

Do you have a check up soon?

Bye for now
Clare
 

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Discussion Starter · #6 ·
hi clare I'm at the hospital on the 30Th June for a lung function test and then the respiratory doctor,then I'm due a check up in July for my sle but i really don't like to say much in case they think I'm moaning!!!.when i was there in April i had a steroid injection and felt great now i don't feel too cleaver .
thanks for your advice take care dawn xxxxxxxxx
 

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You aren't 'moaning', you are telling it like it is. Doctors aren't mind readers. If you go in with a bright smile pretending everything is well enough you will not get the treatment that could vastly improve your life and future health to put it bluntly. You deserve the best care available don't you ?

Take care
Clare
 

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hi Monkey nuts

sorry t here youve had such a bad time .

Have u had your iron levels checked.

Mine was low for a long while even with iron pills.

Has settled down now have b12 injections every month this has helped with iron levels and Im not sooo tired all the time.

take care

dixy
 

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Hi again,

I'm with Clare on "not moaning"! Most of us were brought up to not "complain" and get on with life, well that's fine for many situations but absolutely not fine for lupus.

It is very rare to have a rheumy who has actually HAS lupus and although they have learnt about it and know that it causes X, Y, Z ... those are just words on paper. If you tell a doc "I hurt all over" it is a very vague notion. They have no idea what that means.

One thing you can do is compare pain on a score out of ten (10 being equivalent to childbirth, gallstones...). On top of that I think it is always VERY important to say exactly what you CAN'T do... I used to say I have 'muscle weakness' (I have a polymyositis overlap) and the docs would look puzzled as on the "push my hands" type test I do OK (I used to be very fit so still have a lot of muscle there, it just won't work properly). I then explained to them that I sometimes can't apply moisturiser or brush my teeth and can never write on the whiteboard (job related) because my arms just won't cooperate. They suddenly realised how bad it was.

Another very vague notion for docs is fatigue and that one is super hard to get across. I still haven't managed properly.

In short, as lupus sufferers, we all need to learn to complain MORE especially if, like me, you never break down in tears about it (in public anyway :rotfl:).

Katharine
 

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I do think it is very hard to face up to the realities of what we are suffering. It is hard to know where to draw the line between what has to be endured and what need not be. Sometimes this can only be done after various medicines have been tried since people often respond differently to medicines. What works for one person might not work for another. You never know until you try but what you are missing if you don't try could be feeling much better.


The idea of switching off the self control for the doctor's visit is also worrying as nobody wants a public melt down. If you write everything down then you don't have to voice it at the time and some of the fear is removed. See if you have a family member or good friend somebody you can trust who could come along for support.

It can also be strengthening to think what you would advise somebody else , what would you do if it was a loved one who was ill.
The only way I can get my housework done is to pretend I am my cleaning lady ! Not the same of course but I hope you see what I mean, you sort of distance yourself from your own situation. With a bit of luck you would be able to move forward to living well despite lupus and not feel it is totally dominating your life.

All the best - let us know how you get on please.

:)
Clare
 

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Just wanted to say hi and welcome to the site. Clare and Katherine have given you excellent advice. I hope your next appts go well for you.

Take care

Deb
 

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Discussion Starter · #12 ·
hi katharine just a quick note to say thanks for you kind words of wisdom and support i think I'm still tired due to the pbc which has tiredness as a symptom and unfortunately no meds can be given for the tiredness and the plaquenell is just for the sle ,so i think a bit of digging for some infomation is in order
speak to you soon dawn xxxxxx
 

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Discussion Starter · #13 ·
hi dixy thanks for your advice im due an appt with my rheumy in july so i will mention it to him thanks again dawn xxxxxxxxx
 
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