Feeling quite ill for over a year - not yet been diagnosed.

Sounds very much like something autoimmune that affects vagal system. I've read of the electric shocks, but forget the name of the finding. But, fibromyalgia can affect sleep, brain fog (hydration may help), energy. Do go to non-processed diet and see about a daily walk as a beginning thing. Caffeine is not a go-to, but see about D3 and B vitamins with your PCP. I am also on antidepressant for focus. Hope this helps.

I had the impending sense of doom feeling. It was hard to explain that to doctors what it actually feels like. Plus I hade the phantom spells. They sent me for cat scan on brain and was told it came back clean. My symptoms continue except instead of impending sense of doom I would get the dizziness then an almost uncrontrolable need to cry and headaches that would increase daily. This time they sent me for MRI. It came back with brain tumor growing in my head.
Hope that is not your case but I would have it done to rule it out or validate that is what is goin in.
Good luck

Rachel - your gifting of this high quality, broad impact video helped me and, no doubt, many more. Thank you very much.

You're very welcome. I'm glad you will educate yourself about CSS. What you describe sounds miserable. If no firm diagnosis occurs please keep this in your back pocket. I understand how awful a plethora of symptoms can be, and the affect it has on your mental state. Keep persevering. Will you check back with an update on how you are doing?

Hello @cburkett, welcome to Connect. You are very welcome! You've made my day by joining the conversation, thank you. Your feedback helps others take notice as well. Would you mind sharing what ways the video on Central Sensitization Syndrome helped you?

Thanks for keeping up with my post and checking in. I do appreciate the support. I have posted on other forums where hardly anyone ever responds.

I wanted to mention that the vitamins I take are are all Shaklee branded and they two vitamin B's per day, one vitamin C, one vitamin D3, and one Magnesium. I also sometimes take Tumeric but this sometimes causes me to have anxiety attacks with doom and gloom feelings. Not sure why.

I changed my eating to really healthy stuff like frozen spinach, fish, beans, fruits, vegetables, and cereal. I still have persisting symptoms.

Here is what my day is like:

I wake up in the morning with soaking clothes and sheets, so I have to change my clothes and sheets again. I change them every morning due to consistent night/sleep sweats.

I try to walk around when I get up and feel heavy malaise, disorientation, and a little bit of dizziness. Nothing feels real, I feel like I am in a dream or am about to leave Earth. My consciousness has been reduced by a sizable margin. It feels kind of like a flu but not quite like it. Certainly different from anything I have ever experience before. I never have any fever with any of this, my temp is always 97 - 99 F. No usual symptoms of flu like coughing, chest congestion, runny nose, etc. There is much more sense of malaise and sense of doom with this than the flu, and also I did not have these weird nerve aches going off throughout my body during the flu. This is certainly a worse experience than any flu I have ever had and this doesn't go away, the flu just lasts a week or so.

I look outside and when I see nature and hear land animals and birds it fills me with anxiety and a sense of gloom/death. I think of all the death that occurs in nature and how grim this planet/existence really is. My mind ponders what this life was all about and why was I ever here to start with. Why is life so short and dreary with so much suffering and disease? I then have to close my blinds and lay down due to malaise/panic attack feelings. My brain, moods, and thought processes have become sick.

Today like most every other day in bed I felt nerves and aches going off in different parts of my body. Sometimes it is in my legs, other times it is in my face, I feel pain in my chest and feel a slow/heavy heart beat periodically then it goes back to normal. I have pain in my knee joints and this makes me not want to walk around much.

I now sleep 15 hours a day and am largely immobile.

My stool is pale and my eyes are partly yellow.

I can't breathe good and feel shortness of breath through part of the day. My chest feels heavy and tight, especially after I ate today.

I am still having dreamy thoughts that don't make sense, they are jumbled jibberish thoughts.

Muscle twitching/fasculations are all over body and pretty much constant. My eyelid in my right eye is always twitching throughout the day.

As I have posted, I have had extensive testing done and everything comes back normal except for fatty liver. Though my heptalogist thinks it is odd I have a fatty liver because I am a skinny guy who does not have diabetes or other ailments that usually occur with fatty liver.

I have gone to ERs dozens of times and my blood tests are always normal, they never admit me to hospital.

I am having a fibroscan of my liver next week along with adrenal blood test.

I am not sure what to do. This has been going on since May 2020, so over 1 and a half years, and started while taking the prescription drug Adderall. Before that I had none of these symptoms and loved going outside and being active and felt jovial with no sign of sickness at all. I felt completely healthy and did not worry about my body or health. I didn't keep up with anything medical related because I never had to think about it, my body always worked normally. So with what I have been going though, my perception of the world, personality, and how I feel has completely changed into something I can't recognize.

My latest weird symptom is little red blood spots forming all over my body. I looked online and see they are called pettichia and purpura. Never had these all over my body before until just past few weeks. Why are little red blood dots forming all over my body?

I sit around wondering if I am dying of something that doctors can't seem to diagnose.

I also want to mention I feel intense anxiety/panic at night when I go outside and see a pitch black, starry sky. Outer space and the meaning of existence and the mystery of the universe feels me with terror with what it all means and why it exists. I have this sense when I look at night starry sky that I am dying and will have to soon leave Earth and my life behind and I wonder what I will experience after death. My mind has this sense I will end up somewhere else in outer space. Before this chronic illness, I did not have these types of feelings or thoughts, I did not give any thought to night starry skies or outer space. I don't know why I have these sorts of thoughts with this illness, it is so weird and surreal.

I feel your pain. I have something similar to you. It happened 10 years ago. Flu like symptoms and excruciating pain especially in my shoulders upper arms and lower legs. There are times I feel paralyzed. In 2000 was having problems with pinched nerves. So that neurologist did genetic testing and found out I have a very rare disorder HNPP. No treatment for that but was able to deal with the pain. Then in 2011 was hit with a flu and that’s when my nightmare began. In 2018 was also diagnosed with CLL. Still dealing with the other issues and not one doctor has an answer. Please be your own advocate and keep asking that they due every test possible. Go see an infectious disease doctor. Start there you will get some answers and then ask for genetic testing and complete blood work. Because they can’t find the answers they make you think it’s all in your head. Believe me it’s not!
Best of luck, don’t give up until you have answers no matter how many doctors you have to see.

Hello, I have some similar symptoms which started almost 3 years ago and I am in constant debilitating burning pain from chest to pelvic area with GI motility issues and now sometimes head and other areas have nerve "sensations". No help from any docs and neither Jacksonville nor Minnesota Mayo could get me in for diagnostic workup. After lots of studying, I believe these things start as infection or possibly a central nervous system herpes virus reactivation which no doctor seems to understand, test for or address in any way. This can include Epstein Barr, HSV1 and 2, CMV and other viruses most of us carry but are not familiar with. For central nervous system infections a spinal tap may find it. Of course other pathogen types could be involved. Such infections may then possibly cause autoimmune conditions and the red dots (I also get) can be indicative of vasculitis, among other possibilities. I asked for ANCA panel test came up positive for proteinase 3 but still no diagnoses. Also ask for immune globulin, mast cell activation (allergist/immunologist)tests and neuromuscular antibody panel (published by Washington Univ) some of the results of any of these could be an indicator to at least point you in a direction though I myself am getting nowhere with doctors. Hope to keep in touch and keep each other posted

@cosimax505 I always see ads for a prescription drug that talk about tardive diskenesia that is a side effect of taking drugs for depression and it talks about involuntary movements, etc. This is another prescription to treat those side effects. Sometimes side effects of drugs are the last thing doctors would think about. Have you asked your doctors or pharmacist if your symptoms could be explained by a drug side effect? It's good that you were checked for gall stones because of pale colored stools. That happened to me once and was caused by supplements that I was taking to detox my body. I got too much and it became an overdose and probably caused swelling of the bile duct. I had an ultrasound to check, but they didn't find anything. It took several days to resolve after I stopped everything and everything returned to normal. Pale colored stool can also be a symptom of compression of the bile duct externally by a mass for example pancreatic cancer because the pancreas sits right under the liver near the bile duct. Light colored stools and yellowing of the eyes (jaundice) can also be symptoms of pancreatic cancer. Here is Mayo's information on that.
https://www.mayoclinic.org/diseases-conditions/pancreatic-cancer/symptoms-causes/syc-20355421
It's something to ask your doctor about. Ask if there has been imaging done that would rule out cancer near the bile duct. Jaundice also happens when the liver is overloaded with drugs. My mom was overdosed on pain drugs while in the hospital which caused her to become jaundiced temporarily. It is good you are working with a liver specialist. Are you still taking the prescription for Adderall? Here is some information about long term side effects that list some very similar symptoms to what you are describing?
https://americanaddictioncenters.org/adderall/long-term-effects
Would you be willing to discuss possible side effects and toxicity of your prescriptions with your doctor?