The Lupus Forum banner
1 - 20 of 23 Posts

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #1 ·
Hi folks -

I've been suffering through a very long flare this year and at my last rhuemy's appointment, my doctor put me on to Imuran. That was two weeks ago and I understand that Imuran takes 6 - 12 weeks to kick in. In order to help me feel better, she put me on 60 mg of pred (I've currently tapered down to 30 mg).

When I went to see the rhuemy I was in a lot of pain, with swelling and inflammation in my feet, oral thrush, excruciating mouth ulcers and a general feeling of malaise and fatigue. Most of that is gone now, I'm not really in any pain now - but I can't say that I feel better.

Does that make sense? It is still just an effort to get through the day. I'm off work and I'm sure if anyone saw me, they would think that I'm just fine. My legs just feel so heavy and if I go for a walk I get so tired, but I can't really sleep. I'm not sure if I am explaining it well, but I don't feel quite human. I just feel kinda flat I guess.

I know that fatigue is one of the main things with lupus - but I've never really had it like this before. Before my fatigue was always linked to haemolytic anaemia or high ESR and I guess when that was treated it all went away. This time, there isn't much wrong with me - my C3 and C4 complements are fairly low, but the rest of my bloods are unremarkable, some a little off, but they have been much worse.

I'm so annoyed with people asking how I am too - I know they mean well and I'm polite talking to them, but I figure I can whinge here :lol:! What does feeling better even mean? I was asked yesterday 'Are you still improving?' and I didn't know what to answer. I can tell you I'm not in as much pain and my mouth is much better - but I don't feel better and I don't feel normal. So I feel I don't have a good answer - I'm just trying to pass each day. I just can't tell you anything tangible - it's not like a cold or a chest infection - I can't explain it like that.

It feels like I am on the wrong way on an escalator - I'm just trying not to go down and beyond that I have nothing. I have no plans for the week, or next week or anything. I'm just trying to hang on and it is taking everything.

So all of you wonderful people - do you get what I am trying to say?:hehe: Does this all make sense to you? I'd really appreciate your perspective on this whole thing - and congratulations on reading this far! It turned into a loooong post - I guess it needed to come out.

Take care -

Nellie
 

·
Moderator
Joined
·
4,446 Posts
Nellie, that makes total sense...:) just because your bloods are ok doesn't mean you are! So many peoples bloods come back normal when they feel terrible.. your body has had such a long haul on the flare front, you would have to be superwoman not to be knackered now...:lol: give yourself a break, you are doing well and some of the problems are being sorted now. Just get loads of rest, let your body regroup, and as for the comments.... just sigh and say no... .. not yet.
Take care and rest up and don't doubt that you know your body well enough to know it is still in recovery, big time.XXXX lots of hugs to you,
Claire XX
 

·
Premium Member
Joined
·
7,567 Posts
Hi Nellie, I totally understand your post in fact that is how I feel at the moment. The fatigue is just overwhelming. I have a shower then have to go back to bed as I am absolutely exhausted. I don't like being on steroids, I am on a low dose, but I would guess that being on 60mg then tapering isn't going to make you feel great. Also you have been through a lot with working and trying to keep up. Sometyimes when you stop your body tries to catch up. We expect to feel better for stopping but we don't. If that makes sense!! :hehe:

Have you been checked for anything else wrong, diabetes, thyroid etc?

It can be wearing being ill all the time, and people who do care enough to ask, thing we should improve, they don't get we are always sick.

What do you enjoy doing? I would try each day to do something that I really enjoy, so I feel good. Something for my self to recharge my batteries.

You come here to vent anytime Nellie, I will look out for you in chat.

Deb x
 

·
Registered
Joined
·
457 Posts
It feels like I am on the wrong way on an escalator - I'm just trying not to go down and beyond that I have nothing. I have no plans for the week, or next week or anything. I'm just trying to hang on and it is taking everything.


What a fantastic way of explaining it Nellie!
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #5 ·
Cheers for the replies! It really helps.

Claire - that makes a lot of sense that I know my body well enough to know that I am still in recovery, but not recovered. I think I will hold on to that and explain it to my GP tomorrow as I ask him for yet another sick cert for work.

Deb - I'm sorry to hear that you are feeling like this too - it's just horrible. Yes, I've been checked for thyroid and diabetes and I'm fine - it's just the dratted lupus :hehe: I do make a big effort to do nice things every day, I've renewed my library subscription and am reading lots, I'm cooking lots of nice food for friends and family, I take a long walk on the beach most days and I'm spending a lot of time with my endlessly amusing nieces and nephews. It kind of feels like I am doing all of those things to try and keep myself on an even keel and I'm very concious of not getting too detached from the world.

Marshmellow - glad you appreciate my description! I was trying to explain it to a friend the last day and this was the simplest way I could think off. She wouldn't have the time or inclination to read the spoon theory so this is what I substituted it with.

Take care,

Nellie
 

·
Registered
Joined
·
279 Posts
Hi nellie

sorry you r having such a bad time:sad: feeling not quite right you put it well. the spoons theory there is a short viseo clip of it your friends might be more inclined to watch.

well take care rest up as much as you can.

((((((((((((((hugs)))))))))))

dixy
 

·
Registered
Joined
·
6,152 Posts
Hi Nellie

Well put girl! If I could have written it myself its pretty much exactly what I would say. Im getting a bit fed up waiting around to feel better and, for me, Im beginning to think this might be as good as it gets. Every morning its the same old, same old - waking up exhausted and peeling myself off the bed to face the day. Every evening its the same old, same old - not having the energy to even cook a meal but just lying down on the sofa until its time for bed. I spend the whole weekend trying to 'recover'. Truth is I havent really 'recovered' anything in the last few months.

Some of it might be due to my age - Im older than you. Some of it might be due to the fibro. Some of it might be due to the ring around Saturn. Who knows :rolleyes:

I sincerely hope that your 'recovery' doesnt take so long and that you will get your energy back soon. Starting a new med regime is always wearing and time consuming. I hope the Imuran works soon. Go easy on yourself in the meantime. Its not your fault.

Take care my friend
Joan:rose:
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #9 ·
Thanks again all!:)

Cheers Karol and thanks for letting me know about the video of the spoons theory Dixy. I don't think the link posted, but now that I know of its existence, my trusty search engine will point the way for me ;)

Joan - that is exactly it - I'm fed up waiting around to get better. And yes, maybe this is as good as it gets. What will we do then? I empathise with your statement 'Truth is I haven't really 'recovered' anything in the last few months'.

I guess in this game of wait and see, I'll just wait and see. I'm off to let a roar at those pesky rings around Saturn though :rotfl: It can't hurt!

Take care - I really appreciate all of your responses

Nellie
 

·
Registered
Joined
·
4,968 Posts
Nellie I must say that your sense of humor, even when things are bad shines through and I think you are a very funny and fun loving person.

Bet we would have a blast if some of us could sit around a table together and chat about all this stuff.:rotfl::rotfl::rotfl:

Take good care of yourself and Joan is right, be good to you, this is not your fault.:wink2:
 

·
Registered
Joined
·
217 Posts
Hi Nellie,
I'm in a similar spot to you - my lupus has been 'grumbling' since a flare a year or so ago, and I can't seem to shake off the fatigue/generally feeling rubbish. I look fine (I'm good at hiding the rash with make-up), so nobody would guess, and as it's a relatively long time since I was properly sick everyone assumes that I'm back to normal. I don't correct them, but that probably means some people think I'm really anti-social :lol:

I'm very bored of it now though - roll on my appointment next week, hopefully the doctor can come up with a miracle cure this time! Fingers crossed the imuran/pred clears the fatigue up for you, and you can get back to normal too.

:hehe:
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #12 ·
I'm very bored of this too Fairy! I'm over it now, can I have my real life back please??:rotfl:

Hope your appointment goes well next week - pass on that miracle cure if you get it:hehe:

Karol - cheers for those kind words! It's very sweet of you and the feeling is definitely mutual!

Take care,

Nellie
 

·
Registered
Joined
·
152 Posts
I'm here too. I feel good right now, but I don't feel good. I mean, I've always got fatigue, and I've always got aches... But I'm sleeping relatively normal hours, and the aches aren't too bad right now. But I still feel lethargic and reticent. I just feel off.
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #14 ·
Hi Wane -

Yes, I understand that 'just feeling off' - it's so difficult to convey it adequately to others though, particularly those that I work with!

I hope it all settles down for you soon

Take care, Nellie
 

·
Registered
Joined
·
1,640 Posts
Just yet another that understands just what your saying. I take my meds faithfully, and never feel well. I know..for me, this is as good as it gets.
Which is not good at all..

I still do thank God that I am alive and have pain relief. I still have my blessings in life. So..I say that life is good! :)

I do so hope that you begin feeling better in every way..

Love,
Sandy
 

·
Premium Member
Joined
·
7,567 Posts
Hi Nellie, how are you doing today? Funny I said to a friend yesterday, I am bored of being unwell. Just that vague unwellness you can't describe but stops you doing things. What books do you like reading? I love most books, they take my mind off things. Also I have watched an awful lot of telly lately! So thats the good side of being ill!

I hope you are having a good day.

Deb x
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #17 ·
Hey Deb -

It's just so great being off work! I really don't know how I would cope being at work at the moment. I am feeling better, but as I am coming down on the steroids, some of the old symptoms are coming back such as the oral thrush and the mouth ulcers. Just waiting for that Imuran to kick in!

Yes, it is really boring that vague unwellness, isn't it? I like most books, reading lots of science fiction and fantasy (like Neil Gaiman and Terry Pratchett) and historical fiction - one of my very favourite books is The Historian by Elizabeth Kostova. How are yourself? I'm not so much into the telly, but I am finding myself taping the Gilmore Girls lots recently!

Hope you are keeping well?

Take care, Nellie
 

·
Registered
Joined
·
893 Posts
Hi Nellie

Winning the lottery would not make one feel like we had ' won the lottery' with a lupus.

Terms like ' fatigue' , 'tiredness', 'exhaustion' , 'feeling flat' expressed in everyday life from people who lead 'normal non lupus lives is different for them.
So where does that leave us in conveying to those who dont have lupus ' where we are at exactly.

Its far more complex.

I,m thinking Clairex coined the answer , despite the tatoo, or a sign pinned to ones behind a lot is lost on explainations.

You can try but dont feel you have to justify.

We learn to grow a thicker skin

With love

Nicky
 

·
Registered
Joined
·
3,894 Posts
Discussion Starter · #19 ·
Hi Nicky -

I think for me the hardest thing to accept is that this might be as good as it gets for now.

I've been diagnosed with SLE for 8 years and while I was pretty sick with organ threatening SLE for the first couple of years, really I lived my life pretty much as normal (though what is normal anyway :lol:?) for the 5 years after that. I had days where I needed to take my NSAIDs for pain relief, but really there were few and far between.

I had read about fatigue and lupus, but for me I only got fatigue when I had specific conditions (like anaemia). Now though, the whole thing just feels chronic and it is bringing up a lot of questions for me about my identity and my life's path. After having dealt with this for the past 8 years, I now feel like I have to deal with it all again and accept it once again.

Hence my need to justify I guess!:hehe:

Hope this makes sense -

Take care, Nellie
 

·
Premium Member
Joined
·
7,567 Posts
Hi Nellie, I know what you mean. When you are that fatigued, work would be impossible. I have got over my guilt at not being able to work and now accept and enjoy it!

I have never read a Terry Pratchett book. I have just finished a Harlen Coben book, that was very good.

Nellie, I do think lupus changes. Personally when I am really really sick with lupus I cope better than the with the day to day fatigue etc. I think this can grind us down and is harder to explain, so we feel we should fight it but we can't. If that makes sense! :hehe:

Enjoy yourself and get some more reading done!

Deb x
 
1 - 20 of 23 Posts
This is an older thread, you may not receive a response, and could be reviving an old thread. Please consider creating a new thread.
Top