I feel like I am losing my mind. Do I have this or not. Someone tell me what to do. I am in distress and pain

Hi. 

Please someone help me, I am so alone in this. Sorry it’s long and full of spelling mistakes. 

First about my life: 

I have had weird symptoms all my life. I was born with the cord around my neck and needed resuscitation at birth. 

At age 9/10 I was getting headaches every week Fridays, Saturdays, Sunday ( probably from exhaustion after school) and then they did some investigations in my home country and they said I had a Kimmerle anomaly in my C1, vertebrobasilar instability,  and something on C2 and C3 which we can't read because its written with ugly doctor handwriting but I think it said subluxation. 

My grandma is a doctor, my aunt is a doctor, they talked to the doctors at the hospital and I was treated with Magnesium B6,  Piracetam ( which is like a dyslexia drug but I dont even have dyslexia but they just said it will help with the neuron connection), Remostabil and Valerian root. And I have taken them on and off all my life.  

I have been tired all my life, but I managed to get good grades, top of my class a couple times, good with maths.And I managed to do extracurriculars, like painting , acting/drama, swimming, and others in between. 

Age 14 a doctor told me I have scoliosis. 

Since age 14 to age 20 I have had headaches more than the normal person. I have spend years trying to solve my scoliosis because I was getting more asymmetrical, especially my face, which I hated. I thought maybe my muscles were pulling me asymmetrically and that was somewhat related to scoliosis. 

At ages 13/14/15 I was falling all eye examinations at school which they used to do every year, and then the school doctor would tell me to go to an optician, but the optician would not find anything, no myopia, nothing.

My scoliosis measured 18 (top) and 14 degrees (bottom) which is not that bad and I desperately tried to fix it. In the NHS in the UK they said nothing can be done for scoliosis and it wont progress, but in my country they say it will progress if you don’t manage it.

Age 14-20 I have had many issues: 

Neck, shoulder, lower back pain. And my right hip is always tight and the pain sometimes hits the nerve and the pain goes down my leg

I was tired all the time

I was always tight, tense, rigid, even tho I tried stretching, yoga, etc. 

I have light sensitivity and sound sensitivity since I was 10. 

I am very lonely generally and people do not want to be friends with me, especially in the UK, which is fine because I know I am a boring and awkward person and most of the time I simply dont know what today, so I feel like I cant really complain about not having friends. Or maybe they don’t like my accent. I have no idea.

Eye issues. I knew from earlier my vision was not good but at ages 18/19 I noticed I strain my eyes all the time, I have to put a lot of effort into stabilising my eyes. I did research into BVD because I was thinking maybe my vision is bad because my eyes are asymmetrical and on 2 different levels, one is higher one is lower.  And I get double vision from time to time. 

I have had acid reflux for so long I dont even know when it started. It goes to my neck and sometimes I can’t speak. Bloating. Diharea probably more often the other people

My teeth hurt, I always felt like they move. I have nightmares of my teeth falling out. 

Acne and Dundruff. 

I came close to fainting a couple times. Like I saw dark in front of my eyes, ears got blocked and couldn’t stand upright, but never actually pass out and I try to hold on as much as possible, sit down and not move. 

I had dizzines when standing up from the bed. 

Despite all of these I pushed through. Because what else is there to do when a nurse/doctor finally sees you and just tells you to drink more water. There were times when I felt ok(ish) but then I would have months with flare ups with everything at once. 

I take good care of my health. I (used to exercise), get my steps in, do eye exercises, lift weight ( not a lot of weight but like ranging from 2.5kg to 7.5kg depending on exercise). Don’t smoke. Don’t drink ( only on birthdays, Christmas, etc) 

I am 164cm 58kg. 

Now a couple months ago I started to do these ball exercises where you take a tennis ball and roll your legs over it.

And at age 18ish I got into the looksmaxx/ trying to improve looks side of the internet and how the  fascia stores trauma or some bs. I was thinking it will relieve my back pain,  correct my scoliosis. I thought I had fascia adhesions, left AIC right BC pattern from Conor Harris and Neal Hallinan on Youtube Channel. The ball exercises were painfull but somewhat good.

NOW VERY RECENT ( FROM PAST 3 MONTHS) PLEASE SEE THIS

I have done these “ fascia exercises and genuinely started to feel better for some time.  But then I started waking up very early with racing heart, but didnt think much about this and just started my day. After about 2/3 weeks of this my life is now completely changed for the worst. I started to have difficulties falling asleep, staying asleep, and I just felt like I was too loose all of a sudden. I have the falling sensation, but not once but over and over and over again. I was only able to sleep with my mom’s  Clonozepam. My knee and ankle went inward a couple times, stayed like that for like 24h and I was able to put them back in their place. I started to get heart palpitations, an a dizziness that feels like waves that is not going away. And it’s harder than ever to make my eyes stay in place. 

BUT I DONT REMEMBER BEING THIS BENDY BEFORE THESE EXERCISES. I have had very bending fingers and toes all my life, but not back and knees and neck.

I finally saw a physio ( the appointment was supposed to be for my back/ hip pain and scoliosis) and then he noticed I bended forward very weirdly, then did the Beighton test on me and he said I am hyper mobile, which I didnt know was a thing.  I dont know what score I got, he said my elbows extend a little to much for example but I dont see it, so idk if I get a point for that or not. First I thought he said that as an excuse not to help me with my scoliosis, but I guess it’s an actual thing. For some reason he specifically said to not look it up to much online to not worry myself. Also I can’t stand on one foot without losing balance. 

I started to get pins and needles in my ankles and left knee. 

Finally saw my GP, he ordered 100 different blood tests, all came back good (because as I said I take care of my health) ( but feritine wa flagged as borderline) Went to Emergency a couple times this past 2 months because I though I was dying. One time I got sent home with some dizziness pills that did not help me with my dizziness. Then my  left arm went numb and felt terrible hear palpitations so I went again, got a Head CT with contrast, they said all is good. I could barely walk for 2 months. 

My GP did an investigation for POTS. And I guess your heart has to go up 30 or more. Mine went up 29, can you believe it I just missed one single point and we are back to not knowing what is wrong. I am scared he will send me to mental health institution because the last thing he wrote in my record is Health Anxiety. 

I told my gp I feel like my bones started to move by themselves, especially when I try to go to sleep and they move out of place. I hear a sound in my neck and it’s hard to hold my neck. Got frustrated and put everything into Claude and Claude told me to look into this EDS thing.

I have very small veins, they struggled to get the cannola in for the contrast, got 5 bruses. They couldn’t even find the right vein with an X ray machine and they put it higher up in my arm. I generally bruise easily. 

I always need more anaesthesia at the dentist. The thread they use for wisdom teeth removal never healed properly and my gums grew over them and I can feel the thread there. 

AND the most scary thing I read is that it says that with this condition you get very soft skin, and I was always told I have very soft skin by like everyone. 

And also that the white part of your eye is very blue and my mom used to tell me this all the time, that my eyes are very blue. 

Like I am losing my mind a little. I cant believe some people actually live like this but I really dont want this to be me because every 6 months I get new symptoms and they never go away but I need my sleep back and I need my bones to stop moving by themselves because I feel like this is what is scaring my brain when trying to sleep and why I get dizzy. Especially my neck. I discovered it’s not normal to bend your neck all the way forward and back.   And I d rather be too stiff again then too loose.

Now I am thinking maybe I always had this EDS and the stiffness, scoliosis, bad posture were  my body adapting to weak connective tissue and now I have disrupted my fascia and muscles and ligaments with the exercises.   But Idk for sure and I am going In circles but what I know for sure is that this body is not normal and I d really really want to at least get back to how I was 3 months ago. 

UGH :(