Does each flare take us down a knotch?

[mshistory]

Lol - that's why I put the just in asterisks; even if I don't have lupus as well (which is still up in the air) it is MORE than enough!!!

My rheumy looked at the thyroid numbers and I also read a bunch about it because I really thought it was my thyroid when all this started. I know my thyroid is ok right now but it is something I will make sure we keep an eye on since there's a lot of thyroid disease in my family.

Thanks for the info!

[sass]

as always, my pleasure...and I feel relieved knowing that your Rheumy looked it over too..
It is nice for a person to know.."well at least that is okay"! 

I wish you rain to dance in and joy to sleep in with stars to light your way when the storm passes!  ~sass~

oh yea and no pain!!!!!  always no pain.........

[Luna]

Im not sure if its each flare knocking me down, or just the fact that as time passes, im getting worse.. Cause I am.. It does seem to happen after each flare. Some new pain or problem.. Im more tired than before. Old pains are worse, etc.. I have toughed it out for years.. But it is getting harder to tough it out. I do make sure I get out of bed everymorning. Get dressed and try to do something productive. I have an 8 year old still at home, so he is the biggest reason I get up and moving. If its a really hard day for me, I tend to his needs and rest in the recliner in between. 
Luna

[irish]

ms, You know your body and it is great that you are able to rest when you feel the need. It is also awesome that your kids can rest with you. We are all different and I was by no means putting you down for resting.

When I was going through all the stuff I mentioned I had no clue that I had autoimmune diseases. I was blindsided when I found out I had myasthenia as all the weakness I had was myasthenia plus I had breathing issues that could have killed me----but I had no clue.

I should add that I had been to a very big clinic for lots of testing back in 2001 and was told that I had no autoimmune diseases. I was told I had no sjogrens, no myasthenia ( in spite of positive tests) and no hashimotos ( in spite of more positive testing). You had better believe that I was mad as a hatter in 2003 when I was diagnosed with sjogrens with a chance lip biopsy.

Then 3 years later diagnosed with myasthenia, hashimotos and severely low t-cells. I wasted a ton of money over many decades trying to find out why I felt so lousy. The funny thing is I worked like a dog, made hay a few times, remodeled a house inside and out, had a huge garden (1000 hills of potatoes one year) and just kept plugging along.

I didn't die even though I thought I would. People at work asked me why I kept working and I told them "no one has told me that I am sick yet". Like most of us I had to work and I worked as long as I could. I have been off work on disability since 2004 and have done enough sitting to last me a lifetime. I am down and up. If I can move I am up at least every 10-20 minutes cause I can't sit still that long. LIke I said, we are all different and life and autoimmune affect us differently.

Rest when you need to---that is the only thing that we each can do for ourselves that helps some. Good luck. Irish

[jazzlover]

Luckily, with most autoimmune diseases, it takes a long, long time, and I have relatives who have lived with autoimmune diseases for 70 years.

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Today .. I find that to be depressing!

[jazzlover]

I am down and up. If I can move I am up at least every 10-20 minutes cause I can't sit still that long. LIke I said, we are all different and life and autoimmune affect us differently.

Rest when you need to---that is the only thing that we each can do for ourselves that helps some. Good luck. Irish

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Me too. I will feel really bad and I'll lie down for 10-30- min and I'm back up. I don't feel like getting up, but I am bored to death. With my severe back, neck and foot pain there isn't much left that I am able to do. Just sitting is painful. Typing this is painful, but it gives me something to do.

I used to make jewelry. Now it causes even more pain for me. I plan to try making some soon, just to see if I can do it. But it's so boring to be so disabled. I had to quit teaching in '94 and I've always kept busy. Started my jewelry business then...18 yrs ago. I'm so hoping that God will restore my health so I can do more. I hate feeling useless. That is the worst.

I'd better quit rambling on about myself!!!!

But in reply to the question......it IS a good question. I traveled with my husband 17 hours in 2 days (by car)... that was 2 wks ago this Friday. I am just now beginning to recover from that. We will not drive that much in 2 days again. It was too costly for me. I was so sick I felt like I was going to die.

[slccom]

I know what you mean, Jazzlover. When my husband was diagnosed with chronic fatigue syndrome (20 years ago), the doctor said, "The good news is that it isn't terminal. And the bad news is that it isn't terminal."

Sharon

[stephL]

Maybe flares are causing or contributing to disease progression. I've often wondered about this. I avoid triggering flares at nearly all costs because of this nagging question. I'm not depressed or anxious. When I'm flare free, I don't hesitate to jump into action. I have yet to hear of a doc who believed that anything more serious than mere discomfort was happening during a flare. But considering how poorly understood Sjs is, who knows?

After many years spent undiagnosed and pushing myself hard through flares, today you can sign me off as...resting when I need to, 

Steph

[sktaylor]

I do think each flare we have does something to our bodies. How could it not? Just as Sass said, we are being attacked on the inside.

I also think that we each have our own way of dealing with our illness. Some of us have lots of good days, but many of us never have what we would call a good day.

Every day I wake up and see the sun or hear the birds is a good day because God has kept me here for a purpose. I may not always know what it is, but if I am patient I will find out.


Love and prayers to all.

[jazzlover]

slc...
CFS is often Lyme disease in disguise.

[sass]

sktaylor..Love your attitude..It is one thing that will help sustain you. 

I am like Irish, not as many flares.  Mine is daily.  I hurt pretty much 100% of the time, everywhere except my hair. But some days are less than others.  But I do not seem to get the flairs like most, where you have flu like symptoms and ill. And I rarely sleep..when I do I get little cat naps and wake up about every 15 minutes.. My sleep study shows that I never sleep for more than 20 minutes and that was rare.  And after the 2nd more extensive study they said that on both studies I never go into REM sleep.  So I guess that is my Flair. 

And when I get in the sun, I become weak and can hardly stand.  I have pounding in my head and it takes me several minutes to feel normal again.  I sweat profusely and seek  shade or indoors.  It really drains me.  And now with this lung disease the heat is hard to breath in. Cold weather is just as bad.  But all in all, I don't think I have to live with the type of Flairs that most of you have.     

[slccom]

Thanks. A lot of things can cause CFS, which is really more a description of symptoms than a real diagnosis. Luckily, between us we are very knowledgeable and keeping on top of things. Lyme is a real possibility for my hubby, but after 20 years there isn't a lot to do to treat it, even if he could find someone willing to.

I'm going to contact you privately about our musical careers!

Sharon (I play mostly bass clarinet, but would play contra-bass exclusively if I could!)