[Karen Elizabeth]

Hi, my name is Karen and I am fairly new to this site. I was diagnosed with Lupus and secondary Sjogrens two months ago and basically I feel like I am trying to get used to living with a body that behaves erratically!
Normally, I have fatigue, sore hands and feet and, if I over do things, various joints will ache. Thankfully, Plaquenil is dealing with these symptoms effectively most of the time.
The fatigue, however, remains which means I have to pace myself through the day. By 6pm (and especially just after I have eaten my dinner) I have an overwhelming desire to lie down and basically I can't do much for the rest of the evening. Anyone else feel like this?
This is my main question though...
I was away with my family skiing just over Christmas. I was planning to do just as much as I could. However, just before going I contracted flu. After a few days of fighting that off, I was left with sore throat, sinus pain, ear ache etc. The strange thing was that although I felt awful from the neck up... I felt great from the neck down! :wink2: I had no joint pain and no fatigue. I kept saying to my husband, 'I can't tell you how well I feel'. I was energetic and felt young again and was well able for a day's skiing. :rotfl:
Later in the week, as my fluey symptoms got almost completely better, all the Lupus symptoms returned.
Has anyone else experienced this?
Thanks to you all for your contributions to this website. You've helped me enormously. XX

 

[Gwennie]

Hi Karen,

I can totally agree with the need for a lie down after dinner!! Its every night without fail for me.I think a lot of it is to do with my Irritable Bowel Syndrome as i get frequent bloating,and lethargy.
Im sure hubby thinks i do it just to skive off loading the dishwasher!!!!!hehe
As for your other issue,i dont think i have ever ever ever felt good from the neck down,flu or no flu!!
Id take that as a huge bonus,and it may even be one reason for wanting the flu,just to know what it feels like!!!!
Glad you could participate in your skiing.
Take care

Gwennie.

 

[KarolH]

Hi Karen,

Nice to chat with you in the chat room today. To feel good, then bad, then good again is something most of us go through. It is a roller coaster ride of sorts.

The Plaquenil will help you but give it time to work. It can take up to 6 months for full effect.

Glad you joined us and welcome to a great place.

Hope to chat with you again.:wink2:

 

[angie1]

Hi Karen,
Fatigue is something that most of us go through. For me, I have been on plaquenil for over ten years and I still have severe fatigue. It's like clockwork for me after dinner. Sometimes I can barely make it through dinner. I totally understand how you feel. Glad you found this site. It makes having lupus a little easier. Take care

Angie

 

[granny weatherwax]

Hi Karen

I was going to ask the same question as you... spooky. I have had a couple of colds just lately one started off with a sore throat, Felt really achy the following day then lost my voice for a week! I actually felt better almost more energetic and no joint pain for a few days as the cold subsided the Wam, back came the tiredness and joint pain. I think I put it down to my immune system attacking the bugs rather than me for a little while, but I have learned never to count my chickens as my lupus has once or twice lulled me into a false sense of security :lol:
I am still getting used to this lupus thing and thought I was imagining things but I am glad someone else has experienced the same as me. I am dreading my first bout of flu or similar.

Hope you are feeling better soon!

Claire

 

[Karen Elizabeth]

Hi Claire and others
Thanks for responding. Isn't it good to know you are not the only one experiencing different symptoms? Thanks for sharing your stories.
I am glad to hear that someone else has seen their symptoms reduce while suffering a cold/flu. My friend who is a doctor had never heard of anything like that. I wonder if others with auto immune conditions have noticed the same thing? Maybe researchers looking into autoimmune diseases might look at it from this point of view???
Any other thoughts?
Take care
X

 

[Katharine]

Hi Karen,

As I mentioned in another post I would actually get the opposite problem if I were ill in any way. It tends to wreak havoc with my body and certainly doesn't make me feel any better at all.

I think it is like the thing of some people's faulty immune systems making them catch everything going and other people's making them seemingly "immune" to everything despite suffering badly from their lupus. I'm one of the latter though a good year into taking imuran I now catch colds etc. in a normal way, just like anyone else. I also have far better disease control.

One of life's (and lupus's mysteries)...

Katharine

 

[Meriel]

Hi Karen

I posted almost exactly the same question as you yesterday! I'm not sure how to link threads but you can find it under symptoms 'a strange observation about infections and pain' http://www.thelupussite.com/forum/showthread.php?t=73092

I hope you've recovered from your flu bout now .

I'm going to ask my rheumatologist about it when I see him again in Feb and I'll let you know what he says.

Best wishes,
Meriel

 

[Karen Elizabeth]

Hi Meriel,
I followed the link. You have had a very similar experience to me. Strange, eh??!!
It seems we are the lucky ones though, most people have experienced the opposite. so I suppose we ought to be just thankful for a little respite, however it comes along!
Take care and keep in touch if you hear anything else.
XX

 

[Meriel]

Yes, very strange and it also reminded me of how much energy I used to have. It's good to know it's not all in my head and that other people have similar experiences.

I'll keep you posted if I find out anything.

Take care
Meriel