Please help
Posted , 11 users are following.
Hi everyone! I am new to this website and this is my first post. It is going to be a long one, but I am hoping some people will take the time to read it and offer some advice.
I'm a 19 year old female currently in my second year of college. For the past 6 months, I have been dealing with debilitating symptoms. I am going to start from the very beginning.
Last week of my freshman year, (end of April 2018) I tested positive for Flu B. Ending my freshman year with the flu was the absolute worst timing. I was cramming for finals while also trying to be social. Being the idiot I am, 3 days after my diagnosis, I decided to go out drinking one night thinking I would be fine. I also consumed no water and very little food before this. I was fine drinking before I went home. I went home and smoked a little weed. (Side note, I smoked weed every single day before all of this started happening.) I went to bed with what felt like heartburn that night but figured it was just because the flu, the weed, or something benign. I went to bed with the thought I was just tired and sick since it was 4 AM and that I would be fine in the morning. Boy was I wrong. The whole thing escalated. It felt like there was an elephant sitting on my chest, heart beating out of control, dizzy, couldn't see straight. I've never felt so god awful in my whole life. I had my roommate drive me to urgent care where they gave me a chest x-ray. They told me I was just dehydrated. (Made sense to me). Fast forward to 2 days later. It was the day I moved back home after the school year ended. I felt pretty much fine at this point compared to the other day. I had plans to hang out with all my friends that night. I smoked weed again thinking I'd be fine since a couple days had passed. I was wrong again. I immediately went to the bathroom and had severe diarrhea for 20 minutes and had the same symptoms I did the other day. I figured I was just dehydrated again but something in my gut was telling me something was wrong. I went to the ER that night where they just gave me an IV and some bloodwork which came back normal. The week after that was okay for the most part but then things started building up. I was dizzy all the time when standing, had horrible brain fog, palpitations, vision changes. I saw a total of 30 doctors over the summer to try and figure out what was wrong. Every single one of them told me it was anxiety. This made absolutely no sense to me because I had never once dealt with it in my life. Things got progressively worse as time went one. My GI tract was becoming affected. I also developed IBS and Gerd which I never dealt with before this all started happening. My sleep became severely impaired, I lost my appetite, and could barely leave the house. I work as a hostess during breaks where I stand for 6-7 hours without a break. I was always fine during this which was weird to me and doesn't make sense. I think I just pushed myself no matter how awful I felt since my job was the only thing I had going for me. I had many tests done including:
- 3 CBC's
- Lyme
- CMV, EBV
- Thyroid
- Celiac
- Several EKG's
- Echo
- Vitamin deficiency
- Brain CT and MRI
- Chest X-Rays
- Eye exam
- Hearing test
- Pap Smear
- Urinalysis
all of these came back NORMAL. I even had a doctor tell me I was, "picture perfect healthy!" I felt completely defeated. As time went on my symptoms started adding up and got even worse. My symptoms included:
- Dizziness
- Vertigo
- Sensitivity to loud noises and heat
- God awful brain fog
- Constipation
- Nausea
- Headaches
- Palps
- Chest pain
- Extreme fatigue
- Blurry vision
- Pain sensitivity
- Gerd and IBS
- High heart rate upon sitting and standing
- Random muscle twitches
I was eventually prescribed an SSRI and started seeing a therapist because every doctor was sick of seeing me me. Last week before school, I finally had a TTT done after persuading my PCP. Upon my results, it said, "Meets criteria for pots." I was so happy to finally have an answer. Except it wasn't that easy. My cardiologist, neurologist, and PCP all told me I definitely didn't have pots. But then why would the test say that? My cardiologist said I had some form of dysautonomia and that I needed to re-condition myself and that I would be back to normal. I have been at school for about a month now. My fatigue and brain fog is absolutely debilitating. I can sleep for 7 hours or I can sleep up to 12 and I will still so tired to even get out of bed. I used to go out and drink 4-5 nights a week and smoke every night and I haven't had a drink or smoked since April. I can't even go to the grocery store without feeling completely defeated. I'm also extremely sensitive to pain now. I stubbed my toe a few weeks ago and fainted! Absolutely terrifying. I have broken bones and gotten tattoos and have had no issues. Now the slightest amount of pain makes me feel like I'm gonna pass out. I have also developed migraines. I would get a headache maybe once a year before all of this. Any help at all would be greatly appreciated. I'm wondering if it could be CFS. I also seem to have a mild sore throat most of the time. My doctor's at home wouldn't test for an autoimmune disease because I showed no symptoms. I'm lucky if I leave my dorm most days. I don't think I ever needed an SSRI but now I am scared to stop taking it because I don't know how my body will react. (I take 25mg of Zoloft) I know I am supposed to be doing light exercise but I can't even get out of bed most days. Even showering becomes a huge struggle. My HR gets up to the 150's. I would be very grateful for any advice or ideas of what is going on with me. Thank you!
0 likes, 43 replies
lori93950 caroline28820
Posted
So demanded a specific test and that’s what I have . I’m now seeing and infectious disease dr who really knows his stuff .
He has sent me for more tests including the HVV 6 herpes test.
I suggest you go to an infectious disease dr as my bloody work too from the hospital and my regular doctor came back great ... healthy . We have to be our own advocate .
soobass537 lori93950
Posted
Beverley_01 caroline28820
Posted
Hi Caroline,
It sounds like it could be cfs/me but they tend to wait for you to have symptoms for 6 months before saying that and yes, normal blood tests are expected! However, it could be post viral fatigue and I'm not sure why non of the people you have seen so far haven't suggested that?
It's easy to feel unheard with these conditions. But, stay determined! I have cfs/me and luckily have a supportive doctor who referred me to a specialist clinic at my request.
He did offer me anti depressants first as he said they helped some people with cfs/me but I declined because I'm not depressed. If you feel you're not anxious, go back to the doctor and say this.
Although Stu states there's no known cure, People do recover from psv and cfs/me. But, you have to be gentle on yourself. Explain at college how this is affecting you, tell your family and friends too.
Rest is imperative as is eating as well as you can. Drink well too so you don't dehydrate like you did. Rest and cutting back on activity and then gradually building back up, really gradually.
I know it's hard to pull back on the social aspect of college but, limit getting over stimulated too often.
Also, I know these symptoms are scary and I'm sure you wished they'd just go away! Try to be kind on yourself when you feel awful. Do nice things for yourself. If you like baths, relax in a bath or play music you like but turned lower.
Hope that helps
Beverley
caroline28820 Beverley_01
Posted
Beverley_01 caroline28820
Posted
Mmm, I'm in the UK and here my friend was told its PVS until 3/6 months and then if you still have symptoms it's seen as cfs/me. I know having a name to it doesn't change anything but, I went 18 months not knowing that I had cfs/me. I was in pain and exhausted though as mine was brought on non virally. My symptoms were seen as normal? At 18 months I felt surely I ought to be recovered? I'd had physio and psychotherapy but I was still far from feeling well enough.
I know how hard it can feel to be heard with this. Be determined to get answers. Tell Drs you suspect cfs/me and ask for a referral to your nearest infectious diseases unit.
Beverley
jeremy04366 caroline28820
Posted
I was originally diagnosed with CFS then later celiac. I found out that I had numerous food intolerances. It literally made my digestion issues like reflux, cramps, inflammation and bowel movement issues appear overnight out of the blue. My allergy test with skin was normal but found out that along with gluten, I had issues with dairy, wheat, soy and citrus acid. I've seen improvement by eating a Paleo diet . However I went through the gauntlet with testing before I tested positive on my iga TTG test (celiac) and discovered my intolerances through the process of elimination. I don't know if this applies to you but my symptoms were greatly similar to yours ...and I had normal vitamin testing results too, keep in mind though that a normal blood serum testing doesn't mean youre not defecient. Doctors don't often consider hair samples and ion testing but just because your blood is normal, doesn't mean your body's tissues aren't low. That's where hair analysis comes in. Good luck to you.
caroline28820 jeremy04366
Posted
jeremy04366 caroline28820
Posted
That's a good idea, just remember a negative test on food allergies doesn't mean you don't have food intolerances. I found this out the hard way. My doctor had to argue with the allergist about this. It helped my reflux and stopped my indigestion . It's been tough figuring these out but it's worth the trouble.
Sockpim jeremy04366
Posted
Hi caroline28820,
I agree with jeremy04366, I used to get bloated with wheat products for quite a while and then when I took a food allergy/intolerance test it came out that I had no problem with wheat, but had an intolerance to yeast, so I would suggest this as a possible avenue for you to look into as well.