Not open for further replies.


New member
Dec 4, 2014
Hello all!
I'm new to the thread and thought I'd introduce myself, vent and discuss because frankly I'm so annoyed I just want to scream. So bear with me.

I've always felt a bit off medically. I was born with toxoplasmosis originally but got a then new, experimental treatment which 'cured' me. As I grew older I'd complain of pains in my joints and all over. I was told they were growing pains. Apparently I'm still growing because they're still there.

For as long as I can remember (or at least since junior high) every time I was at school I'd get red blotches all over my face, chest and arms that were hot to the touch. My parents thought it was stress or allergies to a cleaning product. I later realized it was a reaction to fluorescent lighting. I'd also realize my tiredness, headaches, general aches and fatigue were also occurring when under fluorescent lighting.

Also, for as long as I remember I'd get these awful pains in my head. It wasn't a migraine per say because it was a physical pain that only last at most 20 seconds. I later found one term for them is ice pick headache but now they're lasting longer. They're intense and when they happen I can't move or think or anything. I'm practically immobile.

When I was younger I always tanned. Always. Then out of no where one summer I got sun poisoning. Since then I don't tan. I get poisoning or burn and the sun makes me feel sick as well but not as bad as fluorescent.

I always fall over when standing. I never fall completely but I have no balance. I looked like an adorable little drunk stumbling and catching themselves. Now I just look like a real drunk. It took me 22 years to realize this wasn't normal. I'm unable to just stand still. Not like an ADD thing but I don't have the balance to do it. I'm constantly moving.

I also was diagnosed with asthma as a child but I lived with chain smokers so it wasn't surprising. They didn't stop smoking in my face after diagnosis either so it's gotten worse. Again, not surprising.

There's also a list of other issues but I'm not going to list them all here and be annoying. Not to mention menstrual issues which is TMI so let's not discuss.

Let me also say - I've had some really bad doctors as well (one rather mean doctor told me I didn't have depression because I was able to get out of bed. I was 13 at the time and my parents made me get out of bed...) and I've been overweight all my life so their answer was always "well you ARE overweight so it's that". Between that and getting no where with my 'growing pains' I figured they couldn't help me and I began to avoid doctors.

A friend began to point out all the issues I was just ignoring and dealing with daily and kept telling me to see a doctor. But I have very sick family members (father's spine is deteriorating and has diabetes, spinal stenosis, fibromyalgia, disc disease etc and grandmother has parkinsons among other things) and I just didn't want to add to the heap with my own problems. I was functional so what could it matter. Sure every day I face pain and discomfort but not as bad as family members so who cares.

Then, at 25, on 1/13/14 I had a ministroke.

They're still not sure if it was a ministroke (TIA) or not. I was at work when I had neck pain, trouble concentrating, delayed responses and then while driving home (because why go to a doctor? they don't help) I realized I couldn't even form words and I was speaking nonsense. Instead of immediately going to a doctor I went home. I live with my parents (I help take care of the sick family members) and when they asked me what was wrong I wasn't able to speak or form words other than "i don't know". Literally that's all I could make my mouth say. So I went to bed and slept it off because...well I'm not that smart. I woke up with the ability to speak but was still a bit off. I tested my blood pressure (since with all the sick family members it was handy and might as well see) and it was sky high. Despite being very overweight I've had perfect cholesterol, blood sugar and bp all my life. And before this episode I had just had a doctor appointment (i couldn't avoid it, I had to) and my blood pressure was perfect.

I waited two days after the attack and my BP was still high so I went to the doctor finally. I told them everything and he looked at me like I was crazy and making it up because I waited days after the attack to come in. They ran some tests and everything looked ok other than my blood pressure but they wanted to admit me into the hospital. I said no because I hate doctors and had to go to work the next day and instead made an appointment with my primary (who, funny enough, had been my primary for 7 years and I had never met her before)

This is where it all began. In came all the specialists, scans, mris, blood taking, xrays etc etc. I began to do a lot of research and with my now realized malar rash and photophobia/photosensitivity I was convinced I had lupus. Possibly MS but totally lupus.

My bloodwork showed extremely low vitamin D but since I have to live like a vampire that wasn't surprising.

My first set of MRIs were pretty normal with the exception of a possible flqttening of the optic discs but further examination ruled that out. I had ekg and heart monitor - normal. Several ultrasounds (normal). Two ANA tests (negative so normal).

Then I had more MRIs which when reviewed by the specialist I saw said there might be spinal stenosis and degenerative disc disease. I THINK we ruled those out with an Xray but honestly I have no idea what the xray results mean. I do have slight scoliosis.
The last specialist also pretty much diagnosed me with fibromyalgia. I thought she did completely, even handed me on of those flyers with info, but she wants me to talk to my primary.

So here I am. I PROBABLY have fibromyalgia and have mild scoliosis.
After a year of being poked and stuck in tubes that I never think I'll fit in even though I've been in them several times.

What do I not have apparently? Lupus. Because my ANA was negative. Twice. Apparently I just get weird rashes from lights for some reason?

That's my rant and introduction.
I swear I'm normally a very happy, chipper person (now that I'm on antidepressants lol) but I'm so annoyed with everything.

It's never lupus
Welcome to the forum. If it helps any I to have trouble with photo-sensitivity from some lighting and very hot sunlight, that causes a red rash on my face, but not Lupus. I think sometimes because of the suffering we all face we somewhat want it to be Lupus, but not really. Why do I say that, because on the one hand if it were Lupus, doctors could identify with it and so could friends and others. We would have a know very bad disease and not be made to feel crazy or as if we were making the whole thing up. And on the other hand we don't really want a disease that can be so very serious and hard on our internal organs. Thus we are stuck with fibro, that no one truly understands or often believes that it exists.

So where to go from here. The best thing to do is first never assume all symptoms are related to your fibro. Other diseases can crop up like maybe TIA's or seizures. Always take things seriously or the time will come when you need help and everyone will think your just crying wolf.
So by doing the first step, joining the forum, you are taking control of your health management. By taking the reins so to speak you can learn to manage your fibro symptoms and gain knowledge from the trials and errors of others in medication and exercise, sleeping habits and how to relax, cooking and other hints and tips to help your life run a bit smoother.

So join in on the posting of answers and questions about fibro. Tell us how you have handled your pain and keep yourself moving forward. You sound like someone with a lot of courage in facing the unknown, yet striving to keep your head above the fray. Look forward to reading more of your posts. :)
Not open for further replies.