Find out how to let us know if you're concerned about another member's safety.
Hi, I'm MJscheper. I have an undiagnosed condition and need support.
Hello everyone. I hope you are all safe during these weird times. My name is Myron. I’m a 27 year old (young) man living in the Netherlands. First of all, I want to apologize in advance for my English. It isn’t the best, but I hope my story is somewhat understandable. Second of all, it’s a long story, but I want to be clear as possible. Sorry for the long read.
I have been sick now two years. I really can’t believe it is that long already. And the fact that im speaking in terms of years now makes it certain for me that I’ll never be healthy again. Days became weeks, weeks became months, months are now becomming years, and years will probably be forever. How long (or not that long) that may be. Sidenote: I have never been sick before.
It all started out of nowhere on february 25th 2019. Literally out nowhere. I had worked that day, and after watching some TV and playing a videogame, I decided to go to bed early that night. I had four more days of work left to go before I would go on a holiday to Russia.
When I nearly fell asleep I suddenly started to feel very strange. I became extremely dizzy, weak, a lot of pressure on my chest. I tried to calm myself down by drinking some water and putting my head out of the window for some fresh air. I was almost tempted to call an ambulance. Somehow, after a couple of hours, I fell asleep. It was like an attack.
The next day, when I woke up, I was hoping for everything to be fine. But it wasn’t. And from that moment onward, it has been getting worse and worse. Up till a point I am nearly bedridden.
It all started with the things mentioned earlier. It really came out of the blue. No signs or weird things in the days or weeks prior. No matter how hard I think about it. Everything was going completely fine. The dizziness and fatigue/weakness were the most prominent symptoms the first few weeks. After that my vision got blurry once and I started to experience problems with my digestive system. Nausea, vomiting, pain in stomach, you name it. This went on for a while.
In the meantime I visited my GP several times. Bloodwork came back normal. Medication for the digestive problems did not work. Finally, my GP sent me to see some specialists after I started experiencing muscle twitching on top of all the earlier mentioned symptoms: A neurologist and a Gastroenterologist.
They both ran some additional bloodtests (allergies, Lyme’s, CK) and had me undergo some scans (head and chest). They also performed a gastroscopy to look inside my stomach. They found some inflammation, but they said it was due to me vomiting so often. I should go away with another type of medication they said. The other tests came back pretty normal.
In the months following I became sicker and sicker. I wasn’t able to work anymore. I started to experience problems when walking. It felt like I was walking in water at waistheight. Then my legs started to burn constantly (hasn’t gone away since). Especially my calves. And the pressure on my chest gets worse and worse. I now wake up out of breath each time.
I visited some more specialist over the course of two years (upon till now). Most of them didn’t want to run tests. Saying that I am young and healthy and alot has been done already. And that it is in my head and what not.
Long story short. I am a mess. I cannot function. I lay in bed most of the time. My family and girlfriend don’t know what to do anymore. I don’t know what to do anymore. My GP does not help. He send me to a psychologist and said that i might be all in my head.
Is there anything I cant do? Going private? Does anyone recognize these symptoms:
- Pain in the chest when expanding.
- Out of breath (even after sleeping).
- Burning legs, worsens after walking.
- Muscle twitching all over the body, usually after tensing or moving a muscle.
- Extreme fatigue. Intolerance of exercising.
- Dizziness when sitting upright, standing or walking.
Please, I want my old life back. I can’t take this anymore. Don’t want to live like this.
- 55.2K All Categories
- 10.8K Start here and say hello!
- 5.3K Coffee lounge
- 4.1K Disability rights and campaigning
- 1.6K Research and opportunities
- 160 Community updates
- 12.3K Talk about your situation
- 1.8K Children, parents, and families
- 837 Work and employment
- 600 Education
- 1.2K Housing, transport, and independent living
- 1.1K Aids, adaptations, and equipment
- 302 Dating, sex, and relationships
- 268 Exercise and accessible facilities
- 22.3K Talk about money
- 2.3K Benefits and financial support
- 4.5K Employment and Support Allowance (ESA)
- 12.8K PIP, DLA, and AA
- 2.7K Universal Credit (UC)
- 4.2K Talk about your impairment
- 1.4K Cerebral palsy
- 704 Chronic pain and pain management
- 718 Rare, invisible, and undiagnosed conditions
- 771 Autism and neurodiversity
- 951 Mental health and wellbeing
- 314 Sensory impairments