When did all the mysterious problems start? That’s what I try to figure out currently… I had this sun-sensitiveness since I was a kid. I know that I had to wear shirts in summer holidays at the beach, because my skin would turn red and itchy when my skin got too much UV-light. Sunscreen did not really help there. I know my parents were very thoroughly concearning this issue as my father is a doctor and knew all the risks of too much UV light on the skin.
I wasn’t sick a lot as a child… I only got tonsilitis over and over again until my tonsils were taken out. And my eyes would often inflamed. But besides that I used to be a very healthy kid. I had these weird shiver attacks from time to time, but that always had to do with stress. I guess.
I had various allergies, but they changed and some vanished. Soap, washing powder, coldness, sunlight … but nothing really severe. The sun allergy is still there.
When I was about 13 I got more and more tired, I couldn’t bear coldness, I could barely concentrate at school, my hair fell out, I got really pale skin, heat made me exhausted and tired, I started to sweat a lot – even if I was shivering and I became depressed somehow. My legs would sometimes be very weak. Two years later I got diagnosed with Hashimoto’s. The hair loss was also examined, but they could not really find a reason. My testosterone was too high, my prolactine much too high and I was anaemic. For the testosterone I was sent to a gynaecologist, he prescribed me a strong oestrogen pill. I did not take it for a while, because I don’t like playing roulette with my hormones. The thyroid pills I had to take had been causing enough chaos to my body already. When I came together with my boyfriend then, I decided to take these pills. He couldn’t deal with other ways of contraception, so that seemed the best way to manage it. I really did not want to get pregnant! No way. Then I got strange rashes, my legs were completely covered in spots, itching horribly. I decided to go through this… and a few days later it was over. But taking that pills, I got weaker, more depressed, couldn’t concentrate, my face went rounder, my muscles startet to hurt and get weaker and my heart was doing more strange things than it already did. Oh and my digestion had gone whacko… more than it has already been. But I went on taking them for about one or two years, I guess. My hair was a little better, my skin too. But the anaemia went worse… someday I had my blood work results and they said “Haemoglobin: 6”, the normal level starts at 12 or 13. Other parameters were also out of range… no one could explain it. My father guessed it might be leukemia, because I had little blood spots under my skin, I was extremely fatigued and the anaemia did fit the diagnosis too. But it wasn’t.
My doctor once said my spleen was a little too big.
The anaemia would not go away, not even supplementing iron. Ok I was vegetarian then, but I always tried to eat healthy and stuff with iron in it.
I hated summer. Heat, sun, everything. I tried to avoid it as well as possible.
Because of the high testosterone level and the prolactine, my doctor wanted to test my cortisol levels. He was shocked as they came back extremely high, over 1,300. He expected it to be Cushing. So he did a Dexamethasone provocation test – my level was still high, but lowered – so it wasn’t Cushing either. Must have been the oestrogene of these pills. They did not find another reason for it. Or maybe PCOS. But my endocrinologist examined me and ruled it out.
When I stopped taking the pills I felt better. Not good, but a little better. I had more strength, was not as depressed anymore, my face wasn’t that swollen anymore.
I was still tired and felt weak somehow. My hair continued to fall out. It did never really stop… It made me really desperate, because I already have thin hair and I wanted to keep this bit of hair on my damn head! I had nightmares of me having a bold head. For a girl this is a horrible imagination…
Anyways. There was a time I drank too much. Alcohol. And someday I awoke and my back hurt. I’ve been sleeping on my couch so I thought I might’ve been lying in a strange way and now my spine hurts. Wrong guess… The pain got worse and worse until I could not bear it anymore… I was alone in my flat and so I called my father. He was at work and he sent his girlfriend to me, she was at home. When she came over, I could not walk anymore without bending over and she examined me and asked questions. She had the right guess: pancreatitis. Then the vomiting started… and did not end until we were in hospital and a doctor gave me medication. All in all this episode almost cost my life. The doctors gave me a 30% chance to survive. I had every complication you could think of… Pneumonia, Sepsis, Kidney failure, lungs filled with water, Ileus, Aszites, Delirium… and nothing really helped in the beginning. I was in the Intensive Care Unit for over two weeks. Then it started to get a little better… but I had to stay in hospital for two more months.
Looking back I think it was the alcohol. But not only alcohol… I think there was something autoimmune going on either. A few days before I was admitted to hospital there was a routine blood work done. I had a Hashimoto flare, my TSH was 0,01. The doctors at the hospital didn’t understand why I got pancreatitis that soon (normally you get this after many years of drinking hard alcohol) and that bad… they just said it was bad luck.
When I was feeling better, I went to school again. I had 42kg and my hair was thin as f***… but it worked out. I had strange attacks before I fell asleep – I awoke in panic? Like I could not breathe. These attacks sometimes even came at daytime… I guess it was the meds I took to calm me down. Well… I’m not that sure anymore. But that was the explanation I gave to myself that time.
In summer I felt strange… mostly summer. I was tired, I was dizzy sometimes, I had problems with proprioception, with balance, sometimes speech (slow, could not find the right words) and swallowing problems. I always blamed the pills. But other people I knew who took these pills, did not have all these problems…
About 1-2 years later the headaches came. I almost never had them before. I was not the headache type… but then they came. Like migraines. When I was stressed, when I did not eat enough, when the weather changed. But always at lunch time or later, never in the mornings. They came mostly in summer. After school I was too tired to do anything but sitting in front of the PC, sometimes cooking or cleaning up. Sometimes it was a torture for me to go to the supermarket after school… I felt so weak and tired. The doctors always said the problem was my head as I already had depression before. But it didn’t matter which mood I was in.
Then there were the heart race attacks. Not very often. My doc said that was nothing to worry about. But these heart race attacks were frightening… from one moment to the other it started – without any reason. Sometimes I was bending down, sometimes I did nothing at all. Sometimes it was after standing up. That time I also often had problems walking stairs, I was sweating and weak and felt like not getting enough oxygen. My pulse was too high all the time – and nobody found a reason for it. Sometimes there were abnormalities on the ECG, the next day they were gone. They wanted to prescribe a beta blocker – I denied. My blood pressure was normal.
Then the cold-warm thing got worse… I was shivering almost all the time. The rest of the time I felt too hot. Heat flushes, sweating, etc. My little finger was staying cold and numb for long times… One day my thumb stayed numb for hours after I went out in winter. I still blamed it all on the meds. My intestines were going nuts… Pain, pain, pain… nausea, acidity, etc. Later I figured out that it was mainly gluten which caused all this tummy probs. So I did not eat it anymore and my tummy felt much better.
The following summer it was my muscles. Mainly. I was jogging regularly… it was painful, but manageable. But afterwards my muscles not only were sore, like normal, they were weak. For days. Many days… My bones and my back would hurt a lot and I was feeling weak and dizzy very often. And nausea. And brain fog. I forgot so many things… and I was so confused sometimes… I am already a forgetful person, but that… At some point I was afraid to forget to dress or something… not normal. Headaches were there too. At the end of summer I noticed pain in my knees. Pain in my lower back was something I already knew… but knees? Without any reason… I walked a short way and they started to hurt badly. I was exhausted very easily. Every summer got worse… Then my knees became red sometimes. Mainly after walking or standing for a long time. My face went red. Almost all the time… stress, heat, tiredness, … my decolletée too. My neck. And the back pain got worse… sometimes I thought I wouldn’t make the way home. The headaches also got much worse… they came with balance problems, nausea, eye problems (my right eye hurt as hell!)… In these times my heart went whacko, too. Palpitations and the frequence was way too high. I think even my blood pressure was changing for no apparent reason.
The cardiologist wanted to do a longterm EKG. He noticed that yes, I have tachycardia over and over again. Only at daytime But he did not know why. Me neither… My resting pulse was still around 100. There were still some abnormalities visible on the ECG, but nobody seemed to know why… They only said it was nothing to worry about. My cardiologist wrote something like “maybe vegetative abnormalities or changes after an unrecognised carditis”. That was last year, since then I didn’t have an appointment again.
At the moment I have palpitations very often… Some weeks I could barely eat because I knew my heart would race and I would feel like shit afterwards. I could not find any clue what exactly caused this… I think it must have been someting mechanical. But I still don’t know… at the moment it is better so I don’t want to think about it.
I got this damn rash on my face. I already had it before I think, but it always went away. This summer it stayed. I started to sweat at night. Not every night… but the nights when I was feeling sick anyway. It felt like burning from the inside sometimes… like my joints and especially my back was on fire. The nerves. The hot weather did not really help that… Sometimes I felt like dying. I just wanted it to stop. I could not move outside… I cancelled many appointments and meetings with friends. It was just not possible… Sometimes my eyes would get red and itchy for no reason. Someday one was swollen inside and there was a strange bubble in it… but all this went away after hours. The red knees, the red eyes, the back pain.
I often got bruises on my legs and arms/hands for no reason. Sometimes 6-10 over night. Sometimes something inside my leg was itching, I scratched a little and then there was a bruise or little red ones. There have always been at least 4 to 6 on my legs in summer. I found that very creepy… That happened mostly when I wasn’t feeling well, too hot, a bit like I was getting a cold or something.
My hands were/are either cold as ice or red and hot. Not hands… fingers. Sometimes all of them, sometimes only several. It’s not the typical Raynaud’s, but it is defininetly not normal. The nail beds are red and slightly swollen – all the time. Sometimes more, sometimes less. Furthermore I have these strange webs on my hands and legs when I am nervous or cold. It has become worse… I know I have it since I was a kid, but since this summer it has become definitely more.
When I have these bad days, my muscles often hurt, sometimes my tendons too and sometimes I have a strange swollen thingy on my hip that itches. But it leaves after a few hours… My lymph nodes in my arm pits were swollen, too. Not for long… but they were and it hurt. Once my big-toe-joint was swollen for days. Swollen and blue-reddish. It hurt for weeks and it was stiff for months. But I decided not to go to my doctor… I can deal with that kind of pain and what should he do besides telling me to take Ibuprofen?
I’m really afraid of summer. Last summer was like hell… and as the doctors didn’t tell me what illness I have, I don’t really know what to do to make it better. I’m for prevention rather than treating the symptoms when there’s already damage done… but the medical system sees that differently. They want to wait and see. Maybe I need to be close to death to get help… Who knows. All I can do is try natural/prescription free remedies, try to avoid stress and everything that makes it worse. And at the same time manage my apprenticeship, my household, my cats and all that. At least I don’t have a boyfriend anymore. Less stress – haha.
I guess I have forgotten many things that happened… but it’s already a very long story so I just end it here. I have a headache, my toe joint hurts, my back hurts and my eyes are somehow light-sensitive. The screen is as dark as possible, but it still hurts in my eyes.
…and sorry for all the grammar and spelling mistakes!
