Help me!! My Body is wasting away from some mystery illness that doctors can't seem to diagnose!!

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Hi,

I have been feeling ill for over a year now with this illness that seems to be wasting away my body. BTW, I am a 34 year old male. Before this all started, I had never had any health issues, I had been healthy - I only dreaded getting stomach viruses and flus. I wasn't even familiar with chronic illness. Anyway, my symptoms started when I took Adderall for 4 months in 2020 for my ADHD. One day while taking my second Adderall pill of the day (I was prescribed two 10 mg pills per day), I had this intense malaise, jittery, nervous sick feeling a few hours after I swallowed it with a shooting ache in my left arm. Never had this sort of feeling or pain before, as I said I only had health issues from flus/colds/stomach viruses. Anyway, this was my first symptoms and where it all started from. I thought it was a bad reaction to the medication, so I stopped it taking, but the malaise, panic attack feelings kept coming back even when I no longer took Adderall. They would last a few hours and wane but as time went by they became longer and more and more frequent even though the Adderall was long out of my system and I had nerve pain shoot down my left arm. I have since developed other symptoms as the year went by and they are the following and I wonder if they could be an auto-immune illness:

Panic attacks/intense anxiety for no reason. It feels like I have had 20 cups of coffee and my nervous system is hyperactive much of the time. There is not anything stressful going on in my life, and I am not thinking of anything to make me anxious but yet I have panic attacks out of nowhere almost everyday. It is like the anxiety is coming from my body not my mind. When I feel this way I cannot sit or lie down, I have to walk around to help alleviate these feelings.

I have this malaise like feeling everyday. I feel unwell almost all of the time. When my symptoms started a year ago I only had malaise every few days, now it is almost constant. My perception of the world has changed. I don't feel good anymore, instead my mind feels "sick" and everything just feels gloomy and dark. I have had depression before, but this feels much worse and different. It feels so much sicker and intense. I have never felt anything like this before.

The inside of my fingers, palms, and wrists have changed to this yellow color. It looks like someone has taken a highlighter and marked all over my hands and wrists, but it is something under the skin. Also the bottom half of my eyes are this orange/yellow color. At first I thought this was due to lack of sleep due to feeling ill but now I think it is something else. I now go around wearing gloves on my hands to hide it because I am embarrassed for people to see it, and I wear sunglasses to hide my partially yellow eyes. Isn't this yellowing related to liver dysfunction, as that is what one nurse practitioner told me.

I have dull aches and shock like pains that move around my body at different times. Sometimes it feels like there is an electric current moving down my neck, shoulders, and face. When I feel this sensation I feel nauseous and even sometimes have to vomit. I get what feels like bone aches in my arms and legs. Other times I have zapping/electric pains that can happen anywhere in my body. And I get pins and needles like pain in various places. These pains are the worst after I eat a meal. When I eat something, several hours later I develop these pains with intense malaise/jittery/panic attack like feelings.

Constant pain in my upper right abdomen. It feels like a pressure/fullness/ache and it can hurt to press on that location.

Muscle twitches/fasculations frequently everyday. I had these once in a while throughout my life, but ever since my symptoms began a year ago, I have these all of the time and it drives me crazy. I have also noticed my muscles are getting smaller/deteriorating.

My bones ache in my joints, especially my knees, shoulders, and wrists. Never had any bone pain until this illness started. It is like my bones are getting brittle and I am developing some kind of osteoporosis.

Unintentional weight loss. Went from 173 lbs when this started now at 136 lbs. So that is almost 40 pounds of weight lost in one year.

I have brain fog/dream like feelings most of the day. I feel like my consciousness has been turned down by 50 percent. I just don't feel like I am all here any more and as if everyday is a dream mixed with giddiness. It is a weird feeling I have never had before in my life. I don't feel right any more, and it has caused me to become bedridden. Everything makes me feel nervous, jittery, giddy, and in a half-conscious state. My brain seems to be deteriorating.

I now have insomnia with night sweats. I used to be able to sleep 9-10 hours a night every night with no sleeping issues whatsoever before all of this started. Now my body seems to only want to sleep around 3 hours per night and I wake up drenched in sweat where I have to change my clothes. I then have to walk around at night for hours because I feel so anxious and jittery.

I don't like to mention this one too much since it is gross but I think it is worth pointing out and that is my stools are no longer dark brown but instead are this light yellow color or almost white.

With these symptoms, I have self-named this undiagnosed illness as "the wasting disease." I named it this because it seems my whole body is coming apart and wasting away. My bones and joints now seem decrepit, my muscles twitch and are getting smaller, a lot of weight loss now I look like a famine victim, I have pain shooting all over my body, my brain/conscience/nervous system seems to be dissolving, and based on my symptoms some of my organs might be malfunctioning for all I know.

Could this be some kind of auto-immune illness? What the hell is this?!!! I was previously healthy until I started taking Adderall for several months. Not sure if it was the Adderall that caused all of this. Do you have any advice for me or have any ideas of what this illness might be? This is a nightmare scenario because I have had several GPs and seen numerous specialists, been to Mayo Clinic even, and no one can tell me what is happening to me.

Thanks. Please respond.

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    I don't think this is classic autoimmune disease but you likely triggered something in the immune system which is behaving like an adverse drug reaction. I've had experience with this type reaction and it is very unpleasant and frustrating when the doctors don't know what to do. I'm not personally familiar with Adderall but there is a lengthy discussion of side effects on a web page called drugwatch Adderall Side Effects. I have had two such serious adverse drug events, the one most similar was to Ambien (round the clock migraines for 6 months). Found a doctor who gave me a large supply of a drug called topiramate. I slowly increased dosage until I hit 250 mg and the migraines stopped and didn't reoccur. It's a strange drug topiramate, you would need to read up on it before using it. The doctors typically don't understand how it works, just that it does some pretty miraculous things. The problem is the drug reaction is not predicable and some people cannot handle it. Again read up on it, I though long and hard before using it but was glad I did. Talk to your neurologists about it see what they think. Somewhere out there is a way to deal with this, you just have to find it. Best of luck.

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  • Posted

    i'm not sure on this because i havent been diagnosed yet but the doctors seem to think i have fibromyalgia. Every single thing youve described apart from the yellow hands and eyes, i have. I feel this pretty much everyday. Exhausted, sore, twitching, panicky, feel like my world is just going to end any minute and this all just suddenly came on me. I also have a gluten intolerance. With you saying some symptoms get worse after eating, it would be worth keeping a food diary to see if anything triggers is! Hope you feel better soon.

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