Undiagnosed and rare conditions
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Body feels heavy, numb, tense, tight, stiff, weak, rigid - headache - eye pain - brain fog - voices

Hello all,

I'm a male and I'm 23 years old. Below is the detailed list of symptoms of my undiagnosed illness. If anyone has heard of any illness like this, please let me know! I hate living like this! This undiagnosed illness has caused me to drop all of my classes at college. It also stopped me from doing the things I love such as playing soccer, basketball, and weight-lifting. As a result, I'm in bed laying around all day because I cannot do anything besides rest, which doesn't even feel like proper and refreshing rest, since I am in a lot of pain. I've seen almost all types of doctors and have done multiple body exams and the end result is always that there is nothing physically wrong with me. Please help! Thank you!

Symptoms:
-Dull tension band-like headache in between my eyebrows, around my entire forehead, and on my hairline. Sometimes, I also get random sharp pains around my head. The more I focus on something (electronics, books, moving people or cars), and move my head and eyes around, the worse this pain gets.
-Eye pain: dull pain on top of and the back of eyes. Also, my eyes constantly feel as if they have been overly worked. My eyes feel like they're straining. Sometimes, my eyes feel like they're burning. The more I focus on something (electronics, books, moving people or cars), and move my head and eyes around, the worse this pain gets.
-Cloudy/foggy and unclear vision: my vision doesn't feel as opened up and clear as it was when I was healthy. It feels as if there is a cloud over my eyes and head. My vision isn’t connecting with the world around me, especially after engaging in and focusing in on any daily-life activities such as reading books, communicating with others, looking at electronic screens (cell-phone, laptop, TV), walking down the street (while focusing on moving things such as people and cars), playing sports, driving, and even being a passenger in a car.
*These past 3 symptoms above are worst when I am in a car as a passenger or as the driver. The symptoms are worst as a passenger since I get to look through every window around me. In addition, I get very nauseous.
Sensitivity to light: Bright lights hurt my eyes a lot! I must lower the brightness on all of my devices to look at electronic screens. In general, when I look at electronic screens or any type of bright light, my symptoms fire up even more. I squint so much when I am in the sun (even when I am not directly facing the sun). This enhances my eye pain and headache.
-Sensory-processing issues: For example, when I'm outside and I'm focusing on my surroundings, the people or cars moving around me causes my vision to immediately disconnect with the world. I am immediately in a tailspin, which causes me to have cloudy/foggy vision and feel lost. This happens every time that I go outside. It happens at home as well, but it does not happen as much as it does outside. This is probably because there is less activity at home. It happens at home when I focus on things such as the TV, cell-phone, laptop, or a book. Generally, the more that I focus on anything, the worse the pain gets.
-Heavy, numb, tense, tight, stiff, weak, and rigid overall body: those are all of the words that I can describe how my body feels. I feel like I have lost a good amount of feeling in my entire body, which is why I say "numb." These symptoms disallow me to play sports at the competitive level that I used to play them. I have become very slow, heavy, tense, tight, stiff, weak and rigid. In case you're wondering, I'm 5' 11" and I weigh 160 pounds. These symptoms also disallow me to lift weights since my arms or legs uncontrollably shake when weight-lifting even with a very low weight. Also, when I do push-ups, my arms uncontrollably shake. Now, physical activity always feels like a drag and gives me absolutely no pleasure. I don't feel like I'm gaining any muscle when working out. I am also too weak and heavy to enjoy working out and there is nothing that I can do about it until I restore my body back to its normal health. For me, physical activity feels like fighting a huge resistance and not being able to conquer/overcome that resistance. Not the healthy and light resistance that a healthy body normally goes against, but a heavier resistance that makes me feel as if I am not engaging my muscles while physically moving (but they actually are being engaged). As a result, I'm always paying attention to how bad I'm feeling and generally how weak I am. The more that I run or the more that I lift, the more heavy, numb, tense, tight, stiff, weak, and rigid that my body gets. In addition, my tendons and joints feel very weak, tight and stiff, especially my wrists, hip flexors, knees and ankles. For example, it is irritating to hold a bottle of water, especially for a longer period of time. It just feels heavy and my body wants my hands to be free so badly. If I do push myself to the absolute limit and jog let's say 1 mile, I'll wake up the next day a lot more sore than usual and extra heavier in the legs, making there no way for me to exercise on that next day. When I was healthy, my legs were very light and fast. Now, they're heavy and slow. Also, it is impossible for me to feel relief from stretching. It hurts to stretch, especially my hamstrings.
-It is very hard to hold my body up when standing or sitting. I have a very weak posture.
-Heavy legs: my feet feel as if they are sinking or applying a lot of pressure into the ground or my shoes.
-Aching legs (at a low intensity, but still irritating).
-Tight muscles (seems like it could be solely neurological tightness).
-Restless legs: it’s hard to sit still or lay down. Very hard to find a comfortable position. Generally, on a scale of 1-10, 10 being the most restless, my legs feel like a 5 all the time. Sometimes, I wake up in the middle of the night and my legs feel like a 10, and I'm left tossing and turning around the bed until the restlessness calms down.
-Poor sleep quality: I wake up very tired with the same symptoms that I went to sleep with. For example, I usually sleep 13 hours a night and when I wake up, it feels as if I haven't gotten any rest. I don't feel refreshed at all.
-Extreme fatigue, tiredness, and laziness: I’m always tired, no matter how much I sleep. I'm lazy all of the time and any physical activity feels like a literal drag while also fighting a huge resistance.
-Difficulty speaking: light voice (my old voice was deeper), weak voice box and stuttering (sometimes). It's hard to push out words and it's irritating to speak. I also notice that I use so much energy and effort to speak.
-Tight throat.
-Tight tongue and mouth (my mouth/lips tremble sometimes, specifically when I was posing for photos at a wedding).
-Chest tightness.
-Facial tightness and head heaviness.
-Weak breathing: my breath feels heavy. I also notice that I hold my breath (with my mouth) unintentionally sometimes. Breathing with just my nose is not enough, it feels like I need more air.
-Brain fog: difficulty concentrating, unclear mind, and mind constantly blanking out when thinking.
-I get random gasps for air.
-Rumbling palpitations in the chest and pounding heart (sometimes).
-Clogged nose: lost a great amount of my smell.
-Short-term memory loss.
-Anxiety: I have a fear of speaking to people and going outside for two separate reasons. I have a fear of speaking to people because I have so much pain along with a weak voice and a foggy mind that does not think clearly (this makes it hard to communicate with others and gives a high chance of stuttering and embarrassing myself with my slow thought process). Also, I have a fear of going outside because I am in pain, I am lost and worried in the streets and in crowds, since there is so much going on. I am always nervous, uncomfortable, and worrisome with anything that I do, especially in public. Specifically, I am most anxious when I speak in public or on the phone with anyone (employees at stores and friends). For example, ordering my food at a restaurant or deli store can be one of the hardest tasks for me. It causes a lot of stress to my body and I constantly must convince myself to be confident and speak up (while at the same time, I hope that I don’t stutter). My mouth and tongue move very rigidly and that's why I believe it's hard for me to speak up and feel comfortable while doing so. In addition to that, I feel like I don't have enough breath when speaking. Overall, I believe that my anxiety could be because my body forgot how to be relaxed and how to properly breathe. My physical symptoms came before my anxiety. I believe that my physical symptoms have caused my anxiety.
-Ringing in both ears and sometimes in one ear. I always have low-volumed ringing in both ears, but sometimes it becomes loud out of nowhere.
-Locked ankles: it feels as if my tendons and joints are very tight and stiff.
-Hair loss on hairline, "hair"/scalp pain when my hands goes through my hair, and hair does not behave properly (does not stick up on its own as it used to. It falls down even if blow dryed. My hair also curls. It never used to curl in these directions. I've always had straight hair). Also, my hair falls out a lot whenever I go through it. Mostly, during and immediately after showers. I notice the hairs on my hands and on my towel.
-Weak grip in hands.
-Random spirts of pain around the body (rarely happens anymore). Usually in the upper legs and ankles.
-Erectile dysfunction: the only issue is I have a very weak erection. Not at all as strong of an erection as it used to be when I was healthier.
-A lot of unintentional cracking in different bones of my body including my neck, shoulders, both ankles, right elbow, groin, and the bones next to my hip flexors.
-Loss of balance with locked ankles.
-Easily triggered motion sickness/nausea in the car.
-Cold hands and feet (sometimes)
-Pink skin mark on left chest pec: It immediately appears when I am exposed to heat or I am sweating. It is slightly visible when I am not in a shower, not in any other hot area, or not sweating. It is no specific color, but you can tell that it was there because it leaves a unnoticeable light mark on my skin (the mark is a tad bit darker than my natural skin color). Others would never notice it when it is not exposed to heat or sweat. But, when it is exposed to those conditions, it is very noticeable. Generally, this skin condition comes and goes. It is not permanent.

In addition to all of these physical symptoms, I experience a voice that speaks through me, through my mouth. As it speaks through my mouth, I simultaneously hear this voice in my mind. It is a manly voice. If I completely let go and let this voice do what it wants to do, it speaks out loud (as my voice), out of my mouth. This rarely happens anymore, even if I let go. Now, if the voice does decide to speak up, it usually speaks inside of my mouth (while my mouth is closed), which is uncontrollable by me. This rarely happens anymore as well. Now, it usually happens when I think about the voice or anything related to it. The voice always said its objective is to make me suffer. It also claims to have given me all of the pain that I suffer from in the list above. It also claims to control my body. The voice or whatever is controlling the voice makes me lick my lips (something I NEVER had the habit of doing) and laugh uncontrollably and randomly in serious situations. This voice knows all of my thoughts and responds to my thoughts. It is as if something is watching and listening to my life. I also feel that I have intrusive thinking where it feels as if the voice is placing bad thoughts into my brain. For example, it always gives me the imagination and feeling of spitting at the person in front of me. Then, I have to fight and resist that thought. Also, as I was about to fall asleep one day, I felt two hands grab my shoulders and I immediately woke up. The feeling of those hands felt very real.

Here are some of the things that the voice tells me:
“You can’t beat me”
“You’re a pu***. I’ll beat you up with my bare hands”
“Keep going you pu***"
“I’m not scared of you”
“I’ll take care of you and make you suffer”

The reason why I call this illness an undiagnosed illness is because I had all of this physical pain 5 years before the voices came along and no doctor could figure out what was wrong with me. In terms of the voices, which started a year ago, I was diagnosed with undifferentiated schizophrenia. But the odd part is that I have never heard of anyone else with voices speaking through their mouth. It's usually through the mind with schizophrenia. Since the voice stopped talking (when I don't think about it), my main concern is my pain now. Should I believe that the voice is giving me the pain? This would mean that I would need to fully get rid of the voice to get rid of the pain. 2 months before the voices came to me, I had no physical pain. I was healed for those 2 months. In those 2 months, I discovered that if I let go of my body completely and stop thinking about my physical pain, then the pain would go away and it did. This method doesn't work anymore, but at that time I didn't hear a voice. After those 2 months, only the voices started (I had multiple in the beginning), no pain. The pain began 2-3 weeks after hearing my first voice. The voice told me that I would have to take the pain that it's giving me, since I'm a prophet. So, could this mean that the entity controlling the voices gave and is giving me pain? And that for the past 6 years of having this illness, could it be possible that this entity was always inside of me and was always giving me pain, it just wasn't speaking to me?
I wrote this description in one shot because it's so hard to concentrate and revise, so please let me know if you have any questions!

Replies

  • poppy123456poppy123456 Community champion Posts: 18,542 Disability Gamechanger
    HI and welcome,

    I'm one of the community champions here on scope. I'm sorry you're going through all of that. However, as we are not medically trained here i'm afraid we won't be able to give you any medical advice regarding your conditions.

    I'd advise you to make an appointment with your GP.
    Community champion and proud winner of the 2019 empowering others award. This award was given for supporting disabled people and their families for the benefit advice i have given to members here on the community.
  • thespicemanthespiceman Member Posts: 6,408 Disability Gamechanger
    Hello @dysfunction123   Pleased to meet you welcome.

    Thank you for joining and sharing.

    Sorry to hear what you are going through. My friend @poppy123456 has said go and see your GP. 

    I am sorry we  are not medical professionals.

    I am one of the team of community champions.  We guide, advise and help members who join.

    Please may I add I am not a medical man just a long time sufferer of anxiety and depression.

    Educated my self and have knowledge expertise of how certain aspects of anxiety can cause the mind, body to misfunction.

    One of my suggests is to make a diary for yourself how are you after any day, what is causing anything you can think of, write it down. Elimination good ideas to consider.

    You could contact the links I have suggested this one.

    https://www.richmondfellowship.org.uk.

    Mental health charity might not be in your area. Get help with floating support, outreach worker.  Wellbeing and health anything else.

    Also think of looking at well being community health units. Run by your Councils.

    Understand if you got anxiety can be many forms it can take. Pannonia thinking voices and anything  like that is a concern but I you think your Doctor is not helping or think he or she is not listening use an advocate.

    https://www.rethink.org..

    Please if I can be supportive. Please ask me anything, if I can advise can do so.

    Please take care.

    @thespiceman








    Community Champion
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  • Chloe_ScopeChloe_Scope Administrator Posts: 8,355 Scope community team
    Hi @dysfunction123 and a very warm welcome to the community. I'm sorry to hear you are really struggling with these symptoms and that you aren't feeling heard. As others have said, we are not medical professionals and cannot make a diagnosis. However, I hope we can offer support and understanding.

    You are entitled to a second opinion. 
    Community Partner
    Scope
  • Courtyra17Courtyra17 Member Posts: 2 Listener
    edited April 6
    I just thought to reply as I too am a 23F yet I am having very similar symptoms to you. Have you found out anything yet? Plus when was your onset - mine started at around 14/15. Bloods, stool, ecg, mri all normal? 
  • Courtyra17Courtyra17 Member Posts: 2 Listener
    Also look for Diagnosis on Netflix episode 1 - very very similar to me 
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