View Full Version : Pretty new to all of this

04-13-2005, 03:51 PM
Hi, Like I said I am new to this board. I have been experiencing extreme fatigue for the last 2 months with mild fatigue for the past roughly 8 months. I have also had achy knees and hips off and on for the past 6-8 months. I've had blisters in my mouth, and photosensitivity. For the past week I have been in total misery. In addition to the fatigue, I am having more frequent asthma attacks, and severe coughing.

I am not working outside the home right now, thank goodness, because on the average day I am not able to do much beyond lying on the couch and sleeping on and off. Any physical activity leaves me exhausted. My Dr. has at least humored me by running some tests. He has found that I am anemic and that my thyroid is off. I also have a positive ANA result, but don't know the details because for various reasons too complicated to explain he has not recieved the full paperwork yet. He has referred me to an Endocrinologist and a Rheumatologist (somewhat begrudgingly), but he really thinks that I just have a bit of bronchitis and am anemic which doesn't explain any of the other symptoms I've been having.

I just had my first visit with my Endocrinologist and she thinks that my thyroid problems could be due to an immune related thyroid disorder call Hashimoto's Thyroiditis. I have read that this can be linked to immune disorders such as Lupus.

I have no real diagnosis yet and am getting so frustrated. My symptoms seem to match the ones I find listed under Lupus, but no knowing for sure is scary!

I just know that something is very wrong with me. If anyone has any suggestions on how to light a fire under my Dr.'s "it's LA so all I do is push pills at the stars" tush, or where I can beg steal or borrow so energy... please let me know.


04-14-2005, 05:25 AM
Hey Spirit. No energy for you here but if I had some to spare then I'd gladly share. It's all I can do to make it through the week at work, with family etc too. But even on some of my worst days I push myself to do what needs to be done because there is only so long that I can lay down in bed (or couch ;) ) without losing it. :lol:
What I did with my dr was get a copy of my labs and made a chart so she could see how certain ones were really dropping and have been for years. Then I printed out everything I could find that had MY symptoms and marked which ones I had. I took it all in so she KNEW I was serious about not being able to continue like this anymore. I'm 30 years old and most days feel like I am 90. It's horrible. And to have my 6 year old say "Mommy I wish you were like you were before you got sick" is heartbreaking. My problems started after I gave birth to him and have steadily gone down hill ever since.
But like you I don't have a diagnosis yet from the Rheumy. (That appt is in JULY!! GRRRRR) My primary dr tho, is convinced it IS indeed Lupus so she is very helpful and understanding of my "issues"
Anyway, I certainly have no good answers for you but wanted to let you know you are not alone in your fight for help, answers and resolutions to this thing trying to control our bodies, if not our minds as well. {{{HUG}}} Feel better and rest.

04-14-2005, 10:44 AM
That was a great suggestion. I will start requesting copies of my labs right away. I had thought about printing out the info I've found online regarding symptoms that match mine and bringing them to my Dr., but I hadn't actually done it. I guess I will start. Again, thanks!


04-16-2005, 02:00 PM
I had mouth sores on my tounge for years before I was diagnosed. They were irritating but livable. Now however that my lupus has progressed almost any thing can set off mouth sores on the inside of my cheeks...overdoing it or stress. After dealing with them for a month I went to my Dr. she prescribed a round (few days) of prednisone. That cleared them right up. My doctor laughed at me for letting it go a month before asking for help. I told her I just kept thinking it would go away. She gave me refills so when it happens I can treat myself.

I have lupus but my husband has thyroid problems. When his meds aren't right he is so exhausted he can't do anything. So definately get that checked out and treated if needed.

Maybe with this info you can atleast get some mouth relief.