Undiagnosed and frustrated: RA? Lupus?

Posted by emmie @emmie, Feb 2, 2016

Hi. I’m new to the forum and want to share my “journey” through the world of AI disease! I was referred by my ortho surgeon to a rheumatologist after blood work revealed an elevated CRP and Sed rate. I had several foot surgeries involving “melted tendons” (my surgeons words). He always found inordinate amounts of inflammation during the 5 surgeries he had performed. He sent me for tests following the second surgery but RF and Sed were normal. Several years and three surgeries later he re-tested because I had developed debilitating fatigue, nodules on my fingers, along with extreme joint pain in my hands and wrists. He put me on a round of steroids and had my appt expedited.

Of course the steroids calmed down the symptoms but the rheumy did find warmth and swelling in fingers, wrists, knees, elbows, and ankles. He felt sure my inflammation markers would be through the roof. Thus it began…sigh. All tests were NORMAL He repeated them in a month with the same result. After the third month with clinical findings (still normal test results) he started me on Plaquenil. It slowly calmed down the joint pain over a few months. All tests still normal. About 6 months into treatment I developed photosensitive rashes, and chronic mouth ulcers. The fatigue continued and the swollen, inflamed joints were present at every 3 month follow-up. I then had a positive ANA at 1:160 Homogenous pattern. All other tests were normal. Tests I had were: EBV which revealed past infection (this had occurred a couple of years prior to the arthritis symptoms), Lyme disease, CBC, HLA-B27 antigen, protein electrophoresis, cyclic citrus peptide AB IGG, CPK, CRP, CBC WITH DIFFERENTIAL, comprehensive metabolic, Vit D, Vit B12, urinalysis, Sjogrens A&B, glucose and phos, CMV AB IGG &sign, ferritin, iron +TIBC, HEPATIC FUNCTION, CARDIOLIPIN ANTIBODY, Lupus anticoagulant (my daughter has this. Other daughter has MS) calcium, thyroid.

After ANA remained positive and increased to 1:320 he calls me ANA positive and no longer tests for it. About a year ago I developed mild Reynaud’s, chronic anemia, low calcium. and low Vit D and elevated EOS. I developed thyroid nodules and had thyroidectomy April 2015. All other tests remain negative. Yesterday I got the results of my last blood work. Anemia improved but still there, Vit D and calcium normal. EOS is11.5.

I remain in a constant state of frustration at the lack of diagnosis. He says he’s treating me exactly as he would be if RA and Lupus tests were all positive. It still drives me crazy. I don’t even know how to answer the question from other doctors as to why I am on Plaquenil and Methotrexate. I just say “well…it appears I have SOMETHING…” I know you guys can relate to all of this. It has now been 3 years since my first rheumatologist visit.
Your thoughts would be very appreciated.

Emmie

Hi @emmie, and welcome to Connect!

It sounds like you’ve really been through a lot in the past three years. I’d like to connect you with other members, @conniesgore, @learningtolive2, @bettyann and @trouse, all who have experienced some similar challenges and can likely relate.

Have you found anything you can do at home to help with inflammation?

Cassie
Connect Community Moderator

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Rh prescribed Limbrel 500. I take that twice a day which helps but doesn’t make it go away.

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I am right there with you Sweetie. I am new also and just posted a few minutes ago. I don’t know yet if there is a way to send personal messages but will find out. I would like to know who your Rheumatologist is if that is allowed. I have seen doctor Perez and Ralen

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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!

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@ske22

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!

Jump to this post

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.

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@johnbishop

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.

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Thank you John! I’m encouraged again to renew the search for answers, so I appreciate the well wishes and I will certainly check out the other group you suggested!

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@ske22

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!

Jump to this post

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!

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@brandeervatx

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!

Jump to this post

Hello @brandeervatx, Welcome to Mayo Clinic Connect. I'm happy to see you have connected with @ske22 and hopefully can learn from each other. There is another discussion on Connect that you may find helpful since you mentioned that you suffer from fatigue, exhaustion and insomnia. Also, you might want to read through the discussion in my post above for @ske22 since your symptoms are similar. Here are the links to both discussions.

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

Constant Fatigue, 20 year old female
https://connect.mayoclinic.org/discussion/constant-fatigue-20-year-old-female/

Hopefully your out of network appointment with another rheumatologist will provide some answers. Can you share an update after your appointment?

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@brandeervatx

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!

Jump to this post

Has anyone noticed any side effects from Plaquenil? It’s been offered to me but after reading side effects I’m scare to take but it would seem has been helpful for many. I am going through the gambit of trying to figure things out and having little luck getting an appt with a Rhuematologist locally. First appt available is in March. I too have patches on my elbows, had rash on face across my nose, joints achy, diagnosed burning mouth syndrome and central sensitization (diagnosed at Mayo). I have constant sore throat and at times mouth sores. Have had candida in my mouth at times and on my lip. Positive ANA.

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@ske22

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!

Jump to this post

Sounds a lot like dysautonomia. If you have tachycardia (heart races) a lot, then that is a pretty good indicator. Generally, it isn't that bad for those that can exercise regularly, but it varies for everybody. What works for one person, may not work for another.

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@destinnana

Has anyone noticed any side effects from Plaquenil? It’s been offered to me but after reading side effects I’m scare to take but it would seem has been helpful for many. I am going through the gambit of trying to figure things out and having little luck getting an appt with a Rhuematologist locally. First appt available is in March. I too have patches on my elbows, had rash on face across my nose, joints achy, diagnosed burning mouth syndrome and central sensitization (diagnosed at Mayo). I have constant sore throat and at times mouth sores. Have had candida in my mouth at times and on my lip. Positive ANA.

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@destinnana It must be so difficult knowing something is wrong but that you have to wait until March to see a doctor. Have you thought of going to a medical center or university medical center. That’s what I had to do. No one in my town could figure out what the symptoms meant. And the MRI of my brain puzzled all the doctors. My husband then called the University Med Center and explained all the symptoms. I was admitted in terrible shape but my husband was allowed to take me to the university hospital. We met with a neurologist and I’ve been under treatment since (and the local doctors have learned a lot!)
Many autoimmune diseases have only been diagnosed, or treatments found, in the last 10+ years so they are very new to doctors. Going to see a rheumatologist is a good first physician to see as autoimmune diseases come under their specialty.
Can you try a medical center near you? And, let us know what you learn.

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@becsbuddy

@destinnana It must be so difficult knowing something is wrong but that you have to wait until March to see a doctor. Have you thought of going to a medical center or university medical center. That’s what I had to do. No one in my town could figure out what the symptoms meant. And the MRI of my brain puzzled all the doctors. My husband then called the University Med Center and explained all the symptoms. I was admitted in terrible shape but my husband was allowed to take me to the university hospital. We met with a neurologist and I’ve been under treatment since (and the local doctors have learned a lot!)
Many autoimmune diseases have only been diagnosed, or treatments found, in the last 10+ years so they are very new to doctors. Going to see a rheumatologist is a good first physician to see as autoimmune diseases come under their specialty.
Can you try a medical center near you? And, let us know what you learn.

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Sue, I have several autoimmune diseases that were all difficult to diagnose and treat. And, the little buggers like to play havoc with so many areas of our bodiy and lead to other issues. In my case, I find it truly takes a team of experts to link it all together and get me on the best track forward. I highly recommend a teaching hospital, large research/teaching clinic like Mayo or Cleveland or whatever is available re distance. It's well worth the extra effort. Blessings in your research and journey. I am seeing my neurology opthomologist in several days. I have Sjogren's I believe. Have had extreme dry eye problems, interfereing with my sight and getting much worse lately, treated only with refresh over the counter and now Xiidra drops for antiinflammatory issues. They burn so badly now I can't use them. I just realized Plaquenil is used for several autoimmune problems. I'm hoping this doc will have a discussion with me about the possibility Plaquenel will be of some help with joints pain, eyes, other issues I've dealt with for so many years. I'm ready to give it and anything else a try. I'm losing my ability to see! And, of course, I'm in pain all the time…..blessings to you all and the best in 2021! Elizabeth

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