Shot in the dark (lupus, RA, etc.)

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New Member

Date Joined Mar 2017
Total Posts : 2
   Posted 3/12/2017 3:49 PM (GMT -7)   
Hi, so I'm a new person to the forums here and I've come out of desperation. This might be a fairly long post so I thank you to anyone who reads this and takes time to respond to me.

I'm a 19 year old woman, last year almost exactly a year ago, I was walking around my old college campus with a friend. My legs got sore as we were walking which is not totally abnormal. I used to do gymnastics and I've had my fair share of joint pains and aches. I got back to my dorm and settled in for the night assuming I would wake up feeling better. When I woke up my leg pain was even worse and it had spread up my back. Stupidly I pushed through my day and came home to collapse on my bed again. I called the campus health center at that point and scheduled an appointment that took place a few days later. In those few days the pain was constant in my legs from my ankles to my hips, and my back (mostly lower back). I was nauseous, which is not uncommon for me, I tend to get periods of weeks where I'm very nauseous for most of the day without ever throwing up. I also got a killer headache and would sometimes feel physically weak or light headed.

Another piece of important information is that I consulted my pediatrician multiple times about my joint pain and he consistently blew it off saying I was too young. I also had pretty severe eczema through high school that I self treated with oatmeal soaks and lotionmys.

At the doctor's appointment I explained all relevant information that I explained in the last paragraph. The doctor gave me a full exam checking things like thyroid, etc. She eventually suggested that she thought I might have an autoimmune disease, my mom has an iGA deficiency and she was coming up blank on everything else. She took blood to test and told me she would get back to me. She also prescribed me a round of steroids which sort of worked.

The next day I got a call saying that my ANA levels (which I guess is a marker for autoimmune disease?) was almost 2 times the normal limit. She recommended me to a rheumatologist. This is where the story starts to fall to crap. I went to college in a very small rural area and the rheumatologist only worked there one day a week. I called her in late February and after a lot of phone tag going into March I was told that I wouldn't be able to be seen until well into the summer. So I called back my original doctor and she referred me to a different rheumatologist that was about an hour away from my school. I got an appointment for a few weeks later. At the time of this scheduling my symptoms had been going on for a month and the appointment would be broaching on two months of the symptoms. I couldn't take stairs anymore, I could barely manage walking to the bathroom. I would have to leave hours before classes started so I could sit on benches and take breaks every so often, I was in rough shape and scared to death.

As the appointment approached my symptoms eased slightly. I went to the appointment and was given another full exam, the doctor suggested his two hunches were rheumatoid arthritis or psoriasis based on the eczema I mentioned earlier. He elected to send out another round of blood tests. His nurse was an idiot and she barely got enough blood for the test and I was sent on my way with a handful of pain pill samples. Two weeks later I got a call back saying that my ANA levels were normal and they could do no more for me.

Slowly the symptoms dissipated, the pain pills helped and I was back to normal, although every time I had a slight ache I was terrified of being thrown back into the debilitating pain. This weekend my fear has become slowly realized. I had a back ache Thursday night, woke up Friday with it still being there. Friday afternoon it became very bad at one point and I got extremely nauseous, weak, and light headed. It passed after about 15 minutes and then my back just hurt. Yesterday and today my back and head have been hurting with varying intensity and very rarely am I not in pain or discomfort. I have a dentist appointment tomorrow and if my symptoms are still going strong I'm going to go to prompt care tomorrow night or Tuesday. At this point I'm just trying to see if anyone has a shared experience to some level because I'm kind of freaking out and no one in my life has experienced this. Thank you for reading.

Forum Moderator

Date Joined Feb 2003
Total Posts : 15324
   Posted 3/12/2017 5:19 PM (GMT -7)   
Hello & welcome to Healing Well. So sorry to read about what you are dealing with. None of us are drs here so we cannot tell you what your diagnosis is. You mentioned going to prompt care & I do not know what this is. If its like a minor emergency clinic I really do not think they will be able to tell you either. Those places are good for colds, sore throats & the flu. You mentioned seeing a rheumatologist previously & that would be the route I would go again. AI diseases usually take quite a bit of time to diagnose & most of the time it is a process of elimination before getting a proper diagnosis.

I hope you can get some relief & answers. Take care.
Moderator in Chronic Pain & Psoriasis Forums

New Member

Date Joined Mar 2017
Total Posts : 2
   Posted 3/12/2017 5:58 PM (GMT -7)   
Thank you! I know that there aren't drs on here but I was hoping I may stumble across someone with similar experience. I say prompt care because there are really intense waiting lists in my town for GPs much less specialists so I was hoping I could go to that kind of minor emergency clinic to get a referral and a foot in the door faster.

Veteran Member

Date Joined Dec 2012
Total Posts : 680
   Posted 3/12/2017 7:30 PM (GMT -7)   
I can understand that at a tender young age as is 19 that your on going symptoms, in and of themselves, are giving you distress.

I think you will need to re-orient yourself to what may be a longer time horizon before a differential diagnosis can be applied and a plan of treatment identified. That is, unless someone has an acute medical emergency (appendicitis, car accident) the world of medicine often moves at the pace of a snail. Scheduling an appointment to see a primary care physician and waiting. Baseline blood work or other laboratory testing and waiting. Scheduling with a specialist and waiting. More blood work and diagnostic testing and waiting. This is not to discourage you but rather to give you a realistic view of medical care. It is slower than what one wants.

Your symptoms do have elements of similarity to auto-immune based issues. Given that you have a family history of auto-immune disorders on your mother's side and given your prior abnormal ANA testing, I would suggest following with a reputable rheumatologist within whatever health care plan you are enrolled (ex. your parents plan or the school's insurance plan).

My own experience with diagnosis of an auto-immune disorder is that the process was not straightforward nor linear. My ANA and sedimentation rate, for example, were highly variable for several years . . . all while my symptoms were fairly steady or worsening. Diagnosis was not a slam-dunk process. It took about 2 years of following with a rheumatologist before my laboratory values and diagnostic testing was sufficiently evidence based to be diagnosed with "mixed connective tissue disorder." During this time, I was on and off of prednisone and dexamethasone and methotextrate, so my rheumatologist did not leave me dangling in misery.

There are over 100 different auto-immune conditions. And the incidence of auto-immune conditions is on the rise. That can make getting an appointment to see a rheumatologist difficult as it is not a specialty with an overabundance of practitioners.

Until you can establish yourself with a competent rheumatologist, work with your primary care physician. It may be that low-dose corticosteroids may be appropriate when you are having a "flare" to help see you through until your symptoms ease. Corticosteroids are not a benign medication. Use them carefully as directed and never stop them abruptly. If you are on steroids, keep in touch with the prescribing physician about any side-effects that you may experience.

An important part of self-care with an auto-immune disorder is keeping stress at bay. Stress will tend to aggravate auto-immune flares. Certainly, being in college is stressful. Reach out to your friends on campus for support. Practice good self-care by getting enough sleep, eating well balanced foods, and find tools for stress reduction (ex. listening to music; walking/graded exercise; finding humor).

The advantage of the internet is that it breaks down barriers and lets people reach out to others. I am glad that you found this forum and hope that it can provide you with some support and comfort. You may want to explore some of the other forums of HealingWell that pertain to auto-immune conditions for additional commonality and support. We are here for you.
- Karen -
Pituitary failure, wide-spread endocrine dysfunction
Addison's disease
Mixed connective tissue disorder
Extensive intestinal perforation with sepsis, permanent ileostomy
Avascular necrosis of both hips and jaw
Receiving Palliative Care (care and comfort)

1 day at a time
Regular Member

Date Joined Nov 2012
Total Posts : 284
   Posted 3/13/2017 10:39 AM (GMT -7)   
Just for reference, eczema can throw your blood tests off quite a bit. If you had a recent flare that could explain the odd result. A close family member had this happen on numerous occasions. In addition, during the physical to play DI sports, it was discovered that the family member had spina bifida occulta. This kid played competitive sports for over 15 years without knowing it, but
had many years of sports related lower back and leg pain. Still does. Eczema & spinal bifida occulta are not easy to deal with, but manageable. As previously mentioned, steroids are not as mild as some docs try to tell folks. Try to pace yourself as best you can (college isn't easy), and do what you can to keep your stress levels down. Stress can lead to nasty eczema flares and increased pain. I know it isn't easy. Do what you can until you're able to see a specialist. Wish I had more to share. I do know that alternative therapies such as acupuncture and ART (Active Release Techniques) can be a big help. They've done wonders for me after beating up my own body from extreme sports. I'm 55 and still active.
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