new here, sick for years, finally trying to get diagnosed

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New Member

Date Joined Aug 2017
Total Posts : 2
   Posted 8/30/2017 11:28 PM (GMT -6)   
Hi, this is my first time posting on one of these forums. I'm posting in the Lupus one because it currently seems the most likely with my labs and symptoms, but I don't have a diagnosis yet. I wanted to share my story and see if anybody on here relates, has advice, or ideas about what's going on with me.

So, I first started having these symptoms me about 12 years ago. When I was 16 I was diagnosed with mono. I had extreme fatigue and brain fog, hives all over my body, joint and muscle aches. I took a couple of weeks to rest and recover then went back to my life. After that, I would break out in hives every time I got sick and often when I had my period. I generally never came back from the fatigue but I was young so I was able to mostly ignore it. I also was just coming down with colds all the time, and had headaches, joint and muscle pain, and digestive issues frequently.

four years after this, these symptoms were very intense and present a lot of the time. I would have hives for months at a time. I had appendicitis 3 times the summer of 2009 and ignored it the first two times before finally going to the er and getting an appendectomy. The summer after that, I tried eliminating gluten to try and feel better. It made me stop breaking out in hives all the time, eased some of my constant stomach pain, and lifted my fog a bit. I considered myself better and stopped thinking about it for a while until a couple years ago when I realized that I am still very sick and have been in denial.

I guess I am now at an age (28) where I can't push through my symptoms with youth any longer. Currently, my primary chronic symptoms are: headaches, fatigue, brain fog, muscle and joint pain, stomach cramps, gas, itchy skin and occasional rashes (not the typical malar rash though), poor circulation, occasional chest pain, mouth sores (I also have had geographic tongue since my early teens), and sleep issues. I have become so weakened by these symptoms that I can no longer work an 8 hour shift on my feet and have had to quit my job and work from home.

I know that I shouldn't have ignored these things for so long, but I did. I finally went to the doctor seeking a diagnosis a couple of months ago. My first set of labs came back with a positive ana homogenous pattern 1:640, a positive IgM Lyme western blot with 3 bands (p41, p39, p23), and negative IgG with one band (p66), and normal results for most other things, including a complete blood count, comprehensive metabolic panel, thyroid, and more. I also tested negative for epstein-barr which is making me wonder if I ever had mono at all or if that was just the first flare up of whatever is going on for me now?

My next set of labs were more focused on lupus and mostly came back negative except for my c3 complement serum which was only slightly below the normal range (my c4 was just slightly over the line into the normal range). I also got a second lyme test which was negative (one IgM band p41), and all my organ systems seem to be functioning fine.

I am currently waiting to see a rheumatologist who comes pretty well recommended, but my appointment is not for another couple of months. In the meantime, I want to be pro-active about taking better care of myself as I understand getting a diagnosis for a chronic illness can take a very long time, and I can't keep feeling the way I do.

I am currently on a strict gluten free diet and have been for 7 years. I think I could have celiac, but there's no way to find out without eating gluten again and I don't care about a diagnosis enough to put myself through that. I also don't eat sugar, or really any processed foods. I am probably going to try a strict anti-inflammatory diet very soon, though I am quite daunted. I am also planning on working with an herbal practitioner. I want to start finding ways to push through the pain and fatigue and exercise more. I'm trying to focus more on what I can do to feel better now and not just wait to do anything until I get I diagnosis, if I even get one at all.

Sorry for the monologue, I hope that wasn't too much. If anybody has any advice or ideas based on what I've said, it is super welcome. I'm also just interested in connecting with people who are experiencing things similar to this. Thanks for reading through all of that.

Post Edited (nickb.) : 8/30/2017 10:32:44 PM (GMT-6)

Veteran Member

Date Joined May 2005
Total Posts : 7723
   Posted 9/1/2017 3:10 PM (GMT -6)   
Nick, Welcome to Healing Well!

Check out the thread Lupus 101 (link below) if you haven't already. You will find that Lupus is diagnosed by having at least 4 of the 11 diagnosing symptoms, not by lab tests.

Of course, from what you related, you certainly have something going on! Since you already restrict sugar and grains, I'm not sure what more you can do with an anti-inflammatory diet. If you do go this route, make extra sure to include your dietary habits with the information you give your rheumatologist when you get to your appointment.

I wouldn't suggest trying to treat inflammation yourself, it may give the Dr mixed results when you see him and take even longer for a proper diagnosis.

Best wishes, let us know if you have any specific questions.
Lynnwood, Lupus & Sjogren's Moderator, Dx: 2000
"Life is far too important to be taken seriously." - Oscar Wilde

New Member

Date Joined Aug 2017
Total Posts : 2
   Posted 10/18/2017 1:05 PM (GMT -6)   
Thanks for replying! Sorry for posting this and then disappearing - I had to take a break from self diagnosis internet wormholes. The good news is I found a rheumatologist I like who diagnosed me with UCTD which I think makes a lot of sense! I am now deciding whether to try plaquenil or not. I've been off of dairy and coffee for a little bit now which also feels helpful. Thanks again to those who responded to my kinda desperate shout into the void. Hope y'all are finding good ways to care for yourselves!
<3 Nick
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