I don't know what to think...

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Regular Member

Date Joined Jan 2010
Total Posts : 166
   Posted 8/28/2011 9:03 PM (GMT -6)   
I've been feeling pretty cruddy for the last few weeks. I went to my regular doctor for exhaustion and muscle weakness back in late July. The weakness alarmed him and he immediately called rheumy.  I saw her 10 days later, and she had me do usual bloodwork.  Regular dr. also set up a sleep study, but the initial appointment for that isn't until October. If the blood work is ok, I don't go back to the rheumy until after the sleep study (she'd like to see results), although my vitamin d is again very low, so they are calling in a prescription.
Since those appts., the exhaustion hasn't changed. I keep getting sores in my mouth. The exhaustion hits about an hour after I wake up, and by afternoon it's hell - like I get hit by the flu, right down to the sore throat. If I could sit and cry, I would, but it would just further exhaust me.  Then, at bedtime, sleep doesn't come easily.  Starting on Thurs, my ribs hurt for no reason. Just the bottom rib, both sides, and the worst time seems to be when I crawl into bed. 
Rash? Yep. It's like a sunburn, but only  for a few hours a day, usually in the morning.   Today I took a picture, if only to prove to myself it was there, and to have it to show the rheumy.
I'm not sure anymore if any of this means anything or if I'm slowly going crazy.  I don't WANT or HAVE TIME for an immune disorder, or RA or fibro and I'm sure you all know what I mean.  Slowly. Going. Insane.  At times I wonder if I could be a closet hypochondriac.... I'm beginning to doubt what I feel... but  then my muscles don't work right (I type a lot at my job and my arms/hands don't cooperate) and it scares me... yet no one seems that worried.  How long should I wait before I request a referral to an neurologist?
Thanks for letting me get it out here, I just need to not feel so alone today. Tomorrow is Monday, and I'm not looking forward to another workweek.
I hope you all had a happy and calm weekend.

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 8/29/2011 8:43 AM (GMT -6)   
It does sound like you have *something* going on that should be addressed sooner rather than later. I'd call and see if there is any way the sleep study can be moved up. I'd also call and tell the rheumy about how you are feeling and request to see him/her sooner -- or at least request the results of the bloodwork.

They should be able to get you some relief even before an October sleep study.
Lynnwood, Lupus & Sjogren's Moderator
"Life is far too important to be taken seriously" - Oscar Wilde

Regular Member

Date Joined Jan 2006
Total Posts : 395
   Posted 8/29/2011 10:11 AM (GMT -6)   
You AREN'T going crazy, you aren't. And it is NOT in your imagination. I could have written your post, and I had to give up my job for those very reasons. Nights feel a week long, and it is so hard, so frustrating, so demeaning, to complain about subjective symptoms when doctors and nurses are too often focused on facts, measurements, abnormal lab test results, and then quantify dismissively, like... weak positive, or low normal or worse yet...... since we don't look sick...........let's wait 3 months and repeat the blood tests!!!! And I am blessed to have 3 pretty good drs. It's enough to make me CRAZY on top of feeling so sick, so darn darn sick. Please don't doubt yourself and don't wait to see a neuro or your rheumy. I take lots of B12 and D and they do help my symptoms quite abit. Hang tough and don't hesitate to be an advocate for yourself.

God knows, even if I don't....
CNS Lupus 2005, APS, Hashimoto's Thyroiditis, Degenerative Osteoarthritis, Asthma
Meds: Plaquenil, Neurontin, Thyroid, meloxicam, Aspirin, Atenolol and Norvasc, Prednisone 5mg daily. (20-40mg prn), Vit. B12 2400 mcgs, Vit D 1000U and Ambien every night. Advair, Albuterol and DuoNeb inhalers.

Regular Member

Date Joined Jan 2010
Total Posts : 166
   Posted 8/29/2011 9:31 PM (GMT -6)   
Thank you for your responses. I'm so tired of feeling bad, and feeling that there should be something I can do about it to make myself feel better. It helps that someone else knows what I'm going thru, and has been there. :)
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