Feeling drugged, disgusting, disoriented, slowed down like I might collapse
Posted , 9 users are following.
Hello everyone, new member here. Please take the time to read my story as I would value your input.
I’m a 21 year old male and I have been having some debilitating symptoms for a number of years. For about 7 years now I have been feeling extremely fatigued and not right. I feel like I have been drugged by something, I feel soo ill and strange. This feeling is constant, day in and day out. Never goes away. The more I sleep, the more noticeable it is. It is less noticeable when I’ve slept very little. I guess it’s a little bit like that disoriented feeling one gets immediately on waking up, except that it lasts the entire day. Or maybe it's a bit like the flu too? This feeling slows me down so much, every motion takes more time because I'm just soo ill. Sometimes I feel like I'm going to collapse or like my system is slowing down so much that my heart is going to stop.
I have other symptoms too, which include constant pain in arms and legs along with constant tingling sensation. I also have memory lapses, or mini black outs, memory problems, concentration issues, brain fog. Also have IBS symptoms, but not sure if this is related. I yawn all the time and my body sort of feels like it’s sleepy, but at the same time I sleep a good amount everyday. I’ve seen every specialist except a sleep specialist so I wonder if this is something I should look into? To be honest I don’t want to see another doctor again as I’ve seen specialist after specialist without answers. Rheumatologist, neurologist, ENT doc, GI doctor, etc. No answers.
Only a very high RF (624) and mildly elevated IgM, but I was told these don't mean anything without further findings and we've been really thorough with excluding diseases and I've read on a lot of illnesses and none match my symptoms.
I've had a gastroscopy and colonoscopy with biopsies. From the first gastroscopy I was diagnosed with EoE (4 years ago) but I had a new one not too long ago and it was normal. I do have acid reflux which I control with pantoprazole 20 mg daily. Colonoscopy was normal. I've also had brain and full spine MRIs and they were normal. I've had ultrasound of my stomach and pelvis, EKG of heart and X-ray of lungs and lungfunction test, test for bacterial overgrowth where you drink a sugar solution and breathe in many tubes. All normal. I've had all kinds of blood tests. I'm now on Tegretol for the pain and it helps a bit.
Can anyone relate? I don’t know what’s causing this but do know that I need help and cannot do this on my own. I cannot think straight and I can hardly function on a day to day level.
0 likes, 11 replies
s47448 Anonymousman
Posted
Hi
If you haven't already I would strongly recommend a minimum of 3 days (try a week if you can) on something like a paleo or clean diet, cutting out dairy, sugar, wheat, caffeine etc and eat a diet full of fruit, veg, meat, fish and see if your symptoms reduce. I'm speaking from experience of a lot of your debilitating symptoms, and a lot of people underestimate how bad effect a lot of the modern foods have on our body, especially if you are someone with a weakened immune system.
It sounds as though you are suffering with a lot of inflammation where your body is unable to flush out toxins - the drugged feeling and ibs is a big indicator, just give yourself a really healthy detox and monitor your symptoms when you start adding certain foods back in.
Good luck
Sophie
kasandra15031 s47448
Posted
Agree big time! I'm on a clean keto diet and it greatly reduces the degree of pain.
jan96753 s47448
Posted
i second this , i eat no dairy , no gluten , no refined sugar and very limited caffeine i have me/cfs and it had greatly improved my symptoms and function levels, try for at least 2 months to see a difference and be super strict , include lots of foods rich in b vits , look up online a low inflamation diet. i personally take a magnesium supplement and my gp has given me nortriptyline for my nerve pain which helps somewhat. it sounds like you need a new Gp who can confirm a diagnosis for you as this can help with acceptance. i hope that you get some relief and support it sucks big time .
peter01729 Anonymousman
Posted
I have exactly the same as you except for the IBS, mine came as soon as they put me on beta blockers for a few weeks, but the symptoms have remained for the two years since I have come off beta blockers. I have had to be medically retired because of it.
I had testing for Dysautonomia, which is what I suspect as beta blockers disrupt the Autonomic Nervous System, but the tests turned out negative though I think they concentrate more on POTS and blood pressure which I never had symptoms of, rather than the myriad of other things the Autonomic Nervous System controls.
lisa29739 Anonymousman
Posted
Hey there- I have your exact symptoms including the IBS. Mine came on after getting Mono July 2017 and I never recovered. After many many doctor appts and specialists and meds, I finally was diagnosed with Lyme Disease. Looks like the mono reactivated Lyme in my system. Now I've been on monolauren for 3 months and it actually brought my viral loads down (I was still high for EBV and HHV6) and I switched to a keto diet for the last 10 weeks. Both have helped some. I still have to be super careful with my physical activity. But my bedridden relapses are 2-3 days now instead of weeks. If you can test for Lyme through in depth test I would. I fought the Lyme diagnosis forever. Until I read a woman's story who had it and it was exactly my experience. If you don't have Lyme- it could still be viral. Either way the monolauren helps both.
I'm so sorry you've dealt with this for so long. I was a very sick kid until I turned about 12 then I just got better. There's hope your immune system will just turn on a switch and fix whatever is going on. Hang in there.
kasandra15031 lisa29739
Posted
I tested high for HHV6 too! It appears to be a really nasty virus.
Beverley_01 Anonymousman
Posted
Hi there,
can you remember a trigger to all of this or did it start gradually?
I have cfs/me and share many of your symptoms and have had Mri's, colonoscopy, blood tests-all normal.
Beverley
bob1970 Anonymousman
Posted
I think most of us can relate to the symptoms you have but cannot really tell you whether it is ME/CFS or not.
In your situation I would find a Doctor who is supportive and get them to send you to a ME specialist, such as there are at the moment, and get a diagnosis. There is also a ton of research to do. Check out the ME Association website as this will supply you with a lot of information.
jan96753 Anonymousman
Posted
im not sure where he lives but here in New zealand we dont have any MEspecialists
bob1970 jan96753
Posted
It's not great in the UK either but it is a good idea to get a diagnosis (or label as it were) for stuff like work and benefits.
Sockpim Anonymousman
Posted
A simple input from me, but how much salt is in your diet? I found that after eating less processed foods a while ago I started getting more pain/tingling/aching in my joints, legs and arms. I never used to add salt to my diet because I'm not fond of the taste of it. You're body needs a certain amount of salt to be able to survive. That is, when I started eating some most days with a spoon of peanut butter, the cramps/aches disappeared.