Undiagnosed and rare conditions
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Undiagnosed and frustrated

Shae_Shae_ Member Posts: 2 Listener
I’m a 29 year old woman, and I’m a marathon runner/triathlete (when I feel up to it, lately...) My symptoms started about 8 or so years ago. It began with severe fatigue, unexplained fevers, an aching pain in some of my joints (especially my low back, hips, and hands) and a recurring rash that mostly centered around my torso: red, slightly raised blotches anywhere from pinpoint sized to pencil eraser sized that do not itch. It happens sometimes as frequently as every month, or sometimes I’ll go for a few months without it.

Over time I have noticed the addition of other symptoms including hair thinning and dry, itchy skin with dry eyes, swelling in my legs/ankles/feet, easily pulling muscles (like from sneezing), occasional vertigo, and I’m always cold. The joint pain has gotten worse, and my knuckles literally sound crunchy 😖 I can almost guarantee every time I move more than slightly there will be a snap, crackle, or pop. The rash has continued to show up, and has now appeared a few times on my face, mostly on my nose and cheeks.

Most recently this year, two new symptoms have popped up. I started getting a new type of rash first on one elbow, then it spread to the other. It starts as a bunch of small, itchy raised bumps that get larger and form into one big raised patch that itches like a giant mosquito bite. No redness at all. It eventually goes away, but leaves the skin underneath slightly lighter after it does, like a scar.

The other is a recent onset of night sweats. I literally wake up in soaked sheets every night in the middle of the night, and I’m freezing from being wet. It’s seriously interrupting my sleep and I’m still working, which is making me so exhausted I’m falling asleep at work.

So far, all blood tests from multiple doctors have been normal, and it’s hard to get taken seriously when I’m a fairly young, healthy athlete. I honestly gave up trying to find answers for a bit, but lately I’m sleeping 12-15 hours when the night sweats aren’t interrupting and still waking up tired, and my elbows are flaring up bad, so I’m trying to find answers again. But it’s been a nightmare.

Replies

  • LaughingLollyLaughingLolly Member Posts: 101 Pioneering
    Hi Shae, welcome. have you been tested for Lupus? 
    A laugh a day keeps the psychiatrist at bay. 
  • Shae_Shae_ Member Posts: 2 Listener
    edited April 2020
    Hello! I believe that was part of the bloodwork they did. I’ve just gotten a lot of “well all your bloodwork is normal” and they pretty much leave it at that. 
  • Chloe_ScopeChloe_Scope Scope Posts: 10,653 Disability Gamechanger
    Hi @Shae_ and a warm welcome to the community. I imagine it has been a scary change to be faced with these symptoms. I know from experience that being dismissed as 'normal' when you know something isn't right can be hard to take.

    I appreciate it might be hard to have any further investigation at the moment, but you are not alone in being undiagnosed and what you experiences are completely valid.

    We are not medical experts and therefore cannot give medical advice. However, we can support you and provide a safe space for you to go. We're a friendly bunch and please do let me know if we can do anything to help. :)
    Scope

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