Avatar universal

"Undiagnosed" Autoimmune(?) Disease - HELP

I need help! This is going to be long, but I'm desperate, and doctors aren't helping me anymore. I need some guidance so I can guide them.

First, some background information:
I'm a 21 year old female college student. I've been dealing with "health problems" for as long as I can remember. I was diagnosed with severe psoriasis when I was around 12, but I had it long before then. I'm currently in remission with the help of light therapy and topical ointments, as well as Humira, which I used to get the flares under control, but I haven't been on in several months.
I also have diagnosed food sensitivities to gluten, dairy, egg, and a couple other things. I saw an immunologist when I first started college and he was able to give me some tests that confirmed them.
When I started college almost 3 years ago, I had a severe psoriasis flare - full body. I was also sick because of the undiagnosed food problems. Once I figured out what was going on, I took action. I moved to a single apartment on campus where I could prepare my own meals without cross contamination and avoid the awful mold and dust in the older dorm I was staying in. Things progressively got better.

A couple months ago, I started feeling bad. The symptoms started a little at a time, and they've gotten progressively worse so that I can hardly get through the day. I wrote them off as stress, or maybe depression, but I have seen a therapist and my life is actually less stressful than it has been in the past. Symptoms are as follows:

Exhausted all the time, to where I could hardly get out of bed. I HAVE to nap during the day. I get so tired that if I haven't gotten rest by 4-5pm, I can't function - my eyes are literally almost crossing and my head is throbbing.
Headaches, which have gotten progressively worse. Very light and sound sensitive. Can't seem to figure out a trigger.
Nausea, which I would typically attribute to food, but I can't seem to find a specific trigger either. It seems random - not caused by a certain food, or time of day, or activity.  It is also not the same type of nausea as I normally get with a food reaction. It's more like sea-sickness, or like I'm going to throw up.
Chest pain, usually caused by physical activity. I am very active. I'm a dancer and a fencer, so I get physical activity 4-5 days a week at least. Any physical activity beyond a slow walk to class causes a painful, burning/pressure sensation.
Trembling and shaking. Seems to be unrelated to outside triggers as well, such as stress. Will happen multiple times a day for several minutes, and then stop.
Dizziness. Also seemingly random, although I think it may get worse when I'm tired. At first I thought it was blood sugar, (along with the trembling), but it happens whether or not I've eaten recently. Sometimes it's so bad that I can't stay standing, and I have to lay down until the room stops spinning.
Another thing I noticed (that may be nothing), is that my legs and arms fall asleep a lot more and a lot faster than they used to.

Steps I've Taken:
I have seen a couple of doctors, but so far there hasn't been anything diagnosed. I had an MRI done, and that checked out normal. I also had a Complete Lipid panel, metabolic panel, blood count, and TSH4, all of which came back normal as well.

Is there anything else I should check out? I feel like I keep getting written off by doctors...they always seem to guide everything towards "Oh, yes, school is a lot of stress, isn't it?" But I am very self-aware, and I know my body. I've been teaching myself to deal with stress for years. I really feel that there's something else going on here, especially with my history of autoimmune problems. What other steps should I take? Do any of you have any guidance or suggestions?
4 Responses
Sort by: Helpful Oldest Newest
Avatar universal
I'm sure it is autoimmune but what I don't know. I have interstitial cystitis and when I get a flare (or even a cold) I feel like I'm exhausted. Dr told me it's because your immune system is constantly battling your disease and then illness. I feel dizzy or light headed when I have a flare. So whatever it is sounds like it's flaring and flares can last for months. The nausea and headache sounds like a migraine but all could be connected to whatever is going on. Hang in there! It took me 3 years to get diagnosed and countless dr's not listening. Sometimes you have to be your own advocate and listen to your gut.
Helpful - 0
Avatar universal
Thank you, I thought if felt like an autoimmune disease! I hope I can find out what it is, but I really appreciate knowing other people are dealing with something similar. I will keep trying!
Helpful - 0
Avatar universal
I too have had several of the same symptoms. The first thing the docs did was put me on Effexor which is an anti anxiety /antidepressant. It does, A whole lot of nothing! I too, know my body, and know that what I am experiencing is not anxiety. Its so hard, when you look healthy and no one understands how you feel on the inside. Good luck on your road to diagnosis, the docs now are saying to me,  its has to be an autoimmune disease, they are just not sure which one, and maybe years down the road, something will come up positive.. Until then, pretty much they've told me in not so many words, to just suck it up, and treat my symptoms..but nothing works. ....  So frustrating :'(
Helpful - 0
Yes, exactly! I completely understand how you feel. I am sure it is autoimmune related as well. I hope things work out for you too.
I went through a lot of the same issues and symptoms. I have Hashimotos, RA, and fibromyalgia. I was diagnosed with RA at 16 but it took years fire then to pin point the thyroid problem. I was tested for lupus constantly and had thyroid panels that all resulted "normal" until one day they didn't. I was sick for 2 years before I finally got a diagnosis! Docs kept telling me it was an RA flare up but after having that for over 10 years I think I know my own body. I finally ended up in the hospital and my doc at the time told me not to return bc he couldn't help me. I got referred to a rheumatologist that immediately diagnosed me with hypothyroidism. Don't give up. Keep pushing! Good luck!
17486639 tn?1457125733
It sounds much like chronic fatique/autoimmune but it also could have been brought on by Epstein Barr Virus.  Sounds very much like that virus- have you been tested for it?  If not, please do get tested.

Regardless of what you have, your immune system is down.  So you need to bring it back up - which takes a lot of time and consistent action.  AVOID over the counter or prescribed meds as best you can - they tax the liver and immune system.

Transition to a more plant-based diet (look up Paleo diet as well).  

Avoid all GMO's all chemicals and all packaged foods.

Built up your immune system with natural methods and with the use of herbs.  Do a google search to learn what to do.

Look into doing a gentle juice cleanse for a few days.  (where you are only consuming freshly juiced veggies and fruits)

I wish you the best - I went through something similar and after 2 years of severe illness, I"m finally doing better!  Hang in there, and be very mindful of what goes into your mouth at all times.  (Food, medicine, etc.)
Helpful - 0
Have an Answer?

You are reading content posted in the Autoimmune Disorders Community

Top Autoimmune Diseases Answerers
1756321 tn?1547095325
Queensland, Australia
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.
Can I get HIV from surfaces, like toilet seats?