newbie, need insights please

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Twinmommy36
New Member


Date Joined Sep 2003
Total Posts : 11
   Posted 3/2/2004 5:59 PM (GMT -7)   
Hi. I am a 40 year old female who was diagnosed with fibro in 94, but have lived a pretty normal life until the last 5 months. I developed a rash on my elbows, severe fatigue, joint pain, and pleuresy all within a month. I also got the typical butterfly rash of Lupus and some weird little red spots on my stomach and breasts. My family doc immediately said Lupus, but sent me to a Rheum. who said absolutely not because of a negative ANA. I got better for around three weeks and then the symptoms reoccured this time with just joint pain, fatigue, and elbow rash. I am a teacher and by the time I get home, I am literally sick with exhaustion. I also get yeast infections a lot. I have had every test under the sun. Any insights would be appreicated and yes I have an appt. for a 2nd opinion.

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/3/2004 4:32 PM (GMT -7)   
Hi Twinmom,
Welcome to the CFS message board!
I'm sorry to hear you're having all these problems.  I know you said you're set up for a 2nd opinion, and I would suggest that you let that Dr repeat all the blood tests, if you haven't repeated them already.  Mistakes do happen, sometimes, and with a difficult case like yours, it's important not to miss anything.

Well, your symptoms are consistent with CFS.  CFS is a diagnosis of exclusion, meaning that there are no tests to indicate CFS, and the only way to diagnose it, is to exclude everything else it possibly could be.  And the ANA test is often the key.  Many, many people with CFS look just like an autoimmune illness.  And based on info shared in support groups for chronic pain, with people who have autoimmune illnesses and CFS/FMS, their illness experience sounds almost identical, to me.

Like you, I had every test, some 3 or 4 times.  And it was not just me who couldn't believe the test results.  Eventually, several different and unacquainted Drs, also thought autoimmune of some kind.  But no, my ANA has never changed.  Every now and then, there is some short amount of time, between when the symptoms develop and the ANA shows positive.  So it's possible you'll turn up positive in the near future.  But I don't know how often it happens, or how long that time might be.

The one thing you say in your message that grabs my attention is the rash on your elbows.  There is a very common type of rash that occurs on elbows and some other areas, I can't remember which other areas at the moment (although I think ankles is one of them).  I also can't remember the name of the rash, for sure, but it's either eczema or psoriasis.  And there's a rare autoimmune disease that involves one or the other of those rashes.  I'm sorry I can't remember the details, but if you visit a dermatologist, they would be able to tell you more about it.  (I don't know if the ANA is used to diagnose this particular autoimmune disease).

Then there's one other thing that I'm impressed with, and that is how you have symptoms from a number of different autoimmune diseases, and it happens that there's a disease called mixed connective tissue disease (I think that's the name), which really is a combination of several autoimmune diseases.  But I'm pretty sure the ANA has to be positive before one considers Mixed Connective Tissue Disease.  And again, I thought I might have this as well, but my ANA was only one suspicious, but never again positive.

In the end, as frustrating as it is, not to have a diagnosis, or to have CFS as a diagnosis, these autoimmune diseases do not carry a very good prognosis.  With CFS, I think we suffer almost as much as those with autoimmune diseases, but there is no evidence of shortened life span.   In the end, autoimmune diseases progress ruthlessly, where CFS stays about the same, with fluctuations, but the progression is not usually life-threatening (although in rare cases it is).

Guess that's about all the insights I have.  Wish I could have been more helpful.  Good luck, and let us know how the 2nd opinion goes.



brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


Twinmommy36
New Member


Date Joined Sep 2003
Total Posts : 11
   Posted 3/3/2004 8:20 PM (GMT -7)   
Thank you , Brynn. I am going to a large teaching hospital. Hopefully they will get to the bottom of this. Was it a regular doc or an alternative doc tht finally diagnosed you?

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/9/2004 1:37 AM (GMT -7)   
Well, I ended up getting many diagnosises besides CFS--FMS, MPS, IBS, depression, IC, sleep disorder, and more. And they're ALL from MDs. But they're all basically meaningless diagnosises, as far as effective treatments, so that's why I kept pushing and pushing. I couldn't believe I could be so sick, and have an illness without an effective treatment. I couldn't believe illnesses existed that could make you so sick you could no longer work, and not have an effective treatment. Plus the diagnosis for all of them is so subjective, what with no diagnostic tests available. It's just so hard to take them seriously.

But yes, MDs. I kind of gave up on the alternative practitioners, after spending thousands of dollars on things that were supposed to completely cure me, because they're *holistic* but that never worked for longer than 3 days at the most, most of them lasted closer to 3 hours.

Well, anyway, good luck on this next appointment. Keep us posted.
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


littlesue
New Member


Date Joined Mar 2004
Total Posts : 3
   Posted 3/29/2004 3:44 PM (GMT -7)   
Hi Twinmommy,

The blood test for Lupus is not an accurate one. I know a woman who has Lupus and she had 4 tests performed by 4 different doctors before an accurate diagnosis was made. Your decision to get a second opinion is wise. Your symptoms do sound a lot like Lupus, particularly the butterfly rash.

I'm just curious, were you feeling exhausted at the time of your FM diagnosis? How would you rate your fatigue since '94? The reason I am asking is because I feel you should look further into a medical cause if your fatigue over the last 5 months has been sudden and more severe.

Best wishes,

Sue

Brynn
Veteran Member


Date Joined Mar 2003
Total Posts : 1663
   Posted 3/30/2004 9:25 AM (GMT -7)   
Thanks, littlesue, good catch! It had slipped my attention that Twinmommy's fatigue sounds new. Hopefully she'll be back to post an update. I just wanted to add another insight, and that would be a suggestion to consult an Infectious Disease Specialist. TwinMom, they are excellent diagnosticians, plus if you don't have CFS, this type of specialist will know what else can cause your symptoms. I hope you're getting some helpful info--let us know!
brynn,  Moderator for Chronic Pain forums
            and Chronic Fatigue Syndrome forums


snohare
Veteran Member


Date Joined Oct 2004
Total Posts : 2088
   Posted 10/18/2004 10:19 PM (GMT -7)   
Hi
I think the skin condition Brynn is talking about is dermatitis herpetiformis (means snake skin); if you can write your name on your skin just by drawing your fingernail along it then that's probably it. It is associated with Crohn's Disease, which is considered an auto-immune disease.
Your story has striking resemblances to stories in the research literature of ME, (there's a controversy over whether this is CFS or just one cause) particularly the spots. The rash/spots you describe has often been considered a sign of the "acute, infectious" stage of whatever disease might cause ME, and your history since that is very characteristic.  In ME you get lots of opportunistic infections - anything going around, you get it. (Twice.) 
I don't know how this compares to the American idea of CFS or Lupus, if it comes to that, but hopefully this will help shed light.
Oh, how I envy you all those tests - getting a blood test of any sort here is a major challenge. But then again, I don't envy you the bills...
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