Undiagnosed and frustrated: RA? Lupus?

Hi @emmie ! I’m so sorry to hear you are going through this! I’m having similar experience, and left my last doctor’s appointment in tears 🙁

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, chronic digestive issues and bloat, swelling in my legs/ankles/feet, easily pulling muscles (like from sneezes), occasional vertigo, and I’m always cold. The rash has appeared a few times on my face, mostly on my rose and cheeks, but it isn’t raised.

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 round raised patch that itches like a giant mosquito bite. 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 almost every night in the middle of the night because I’m freezing from being wet.

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 and still waking up tired, and my elbows are flaring up bad, so I’m going to give it another shot. Hopefully we both find answers!

Hello @ske22, Welcome to Mayo Clinic Connect. Thank you for sharing your story. I know it must be difficult when the doctors are not able to figure out what is causing your symptoms. I'm happy you have connected with @emmie and I'm hoping other members can share what helps them. You may also be interested in the following discussion.

> Groups > Women's Health > Chronic Illnesses of Millions of Women Left Untreated
-- https://connect.mayoclinic.org/discussion/chronic-illnesses-of-millions-of-women-left-untreated/

Have you thought about seeking help from a major medical facility or teaching hospital? If you would like to seek help from Mayo Clinic, contact one of the appointment offices. The contact information for Minnesota, Arizona and Florida can be found here http://mayocl.in/1mtmR63.

Hi @emmie ! I’m so sorry to hear you are going through this! I’m having similar experience, and left my last doctor’s appointment in tears 🙁

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, chronic digestive issues and bloat, swelling in my legs/ankles/feet, easily pulling muscles (like from sneezes), occasional vertigo, and I’m always cold. The rash has appeared a few times on my face, mostly on my rose and cheeks, but it isn’t raised.

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 round raised patch that itches like a giant mosquito bite. 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 almost every night in the middle of the night because I’m freezing from being wet.

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 and still waking up tired, and my elbows are flaring up bad, so I’m going to give it another shot. Hopefully we both find answers!

Hi @ske22!

I just came across this thread and so much of your post resonated with me. I'm 36, a former athlete who is in otherwise good health, but having been having similar AI symptoms the last 14 months (so still early in the "journey") and had my first rheum appointment in August after a positive ANA (1:640, atypical/speckled) in March and elevated CRP with every blood test since. Today I got a call that my Eos is also elevated and I'll be going back in to retest it in a few weeks' time. I have no diagnosis.

Negative for RF and anti-CCP. Getting crazy night sweats from time to time (we have to keep the room at 65 and have the ceiling fan on), and over the last 6 months increasingly severe menses with shortened time between cycles--had to be tested for premature perimenopause just to time it out. My care team is part of a large research and teaching hospital, but still no dice. I've seen a rheumatologist, endocrinologist, PCP, and will be getting a second opinion from a rheumatologist out of network next month.

I was struck by your description of the rash; I have a very similar issue! It started on my elbow and would slowly migrate towards my wrist, and then started to appear on the topside of my forearm. Tiny, itchy bumps that were either light red or skin colored. Worse in the heat/sweaty conditions. Left behind an oddly textured, scar-like spot where they clustered. Docs thought it was eczema, but it didn't respond to eczema drugs.

Currently on 400mg of plaquenil daily, which seems to be slowly helping the chronic swelling in my hands/feet, but still suffer from fatigue, exhaustion, and insomnia. If you get any updates, would love to know!

Hi @ske22!

I just came across this thread and so much of your post resonated with me. I'm 36, a former athlete who is in otherwise good health, but having been having similar AI symptoms the last 14 months (so still early in the "journey") and had my first rheum appointment in August after a positive ANA (1:640, atypical/speckled) in March and elevated CRP with every blood test since. Today I got a call that my Eos is also elevated and I'll be going back in to retest it in a few weeks' time. I have no diagnosis.

Negative for RF and anti-CCP. Getting crazy night sweats from time to time (we have to keep the room at 65 and have the ceiling fan on), and over the last 6 months increasingly severe menses with shortened time between cycles--had to be tested for premature perimenopause just to time it out. My care team is part of a large research and teaching hospital, but still no dice. I've seen a rheumatologist, endocrinologist, PCP, and will be getting a second opinion from a rheumatologist out of network next month.

I was struck by your description of the rash; I have a very similar issue! It started on my elbow and would slowly migrate towards my wrist, and then started to appear on the topside of my forearm. Tiny, itchy bumps that were either light red or skin colored. Worse in the heat/sweaty conditions. Left behind an oddly textured, scar-like spot where they clustered. Docs thought it was eczema, but it didn't respond to eczema drugs.

Currently on 400mg of plaquenil daily, which seems to be slowly helping the chronic swelling in my hands/feet, but still suffer from fatigue, exhaustion, and insomnia. If you get any updates, would love to know!

Hi @emmie ! I’m so sorry to hear you are going through this! I’m having similar experience, and left my last doctor’s appointment in tears 🙁

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, chronic digestive issues and bloat, swelling in my legs/ankles/feet, easily pulling muscles (like from sneezes), occasional vertigo, and I’m always cold. The rash has appeared a few times on my face, mostly on my rose and cheeks, but it isn’t raised.

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 round raised patch that itches like a giant mosquito bite. 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 almost every night in the middle of the night because I’m freezing from being wet.

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 and still waking up tired, and my elbows are flaring up bad, so I’m going to give it another shot. Hopefully we both find answers!