How do I know if I have chronic fatigue syndrome?

[ck732016]

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!

[TippieDee]

YES!!! You are not crazy! I'm so sorry no one has replied to you before now. Your experience is quite typical of those of us with CFS, now more properly called ME/CFS, especially internationally. The ME stands for myalgic encephalomyelitis (NOT encephalitis). However, sometimes we have to use "chronic fatigue syndrome" just to be understood.

There are two subgroups of patients: sudden onset (you), usually after having a virus, and gradual onset (me), but mine also started after a case of two back-to-back viruses.

I would advise you to stay on your Zoloft! SSRI's and other antidepressants have proved to be helpful for many of us.

First and foremost, know you are not alone. Look for a support group in your community. Some are better than others, but I found friends there. Or join an online group. A big, important question for you: Are your friends (especially at school) and family understanding and supportive? Or do they question your illness because all the tests come back normal and the doctors say you are a picture of health? You need people around you or available to you who understand what you are going through, and are supportive. The quest for a diagnosis — let alone treatment — is arduous, and can be depressing in its own right!

Don't be hard on yourself about the exercise. It is known to exacerbate ME/CFS symptoms, and must be done very carefully. That was one of my first symptoms. I was having to cut my exercise short, and didn't know why.

Pain amplification is a well-known symptom, as are headaches that are new or different. For me it has been the transition from normal, episodic migraines to daily migraines that are really only treatable with doses of opioids that are now unobtainable due to the opioid OD epidemic. And, yes, cognitive problems, like poor recent memory and brain fog, are definitely symptoms.

Do not despair! Believe it or not, you are entering this "patient community" (although I realize you might not look at it that way) at a much better time than when I did. The illness is much more accepted now, except for one thing. The old name, Chronic Fatigue Syndrome, has misled most people, including many doctors. That is why we all fought so hard for a new name — with mixed success.

Perhaps I saved the best for last. There is one very good, down-to-earth, and practical Website that I highly recommend. It used to be called about.com, but this branch now calls itself verywell.com. Here are two sample articles to get you started. I love the writer, and she is an ME/CFS+FMS sufferer. The URLs are:
https://www.verywellhealth.com/chronic-fatigue-syndrome-and-dizziness-4135275 AND
https://www.verywellhealth.com/problems-showering-chronic-fatigue-syndrome-3973041.
You can also sign up to receive her emails that lead you to articles on various topics (e.g., coping with the holidays).

Also see Dr. Bateman's site at http://batemanhornecenter.org/wp-content/uploads/2016/02/MECFS_FM_Treatment_Advice.pdf.
Her advice is a basic and practical guide to living with ME/CFS, but it is also easier said than done. I will say that I was following much of her advice on my own when I was first ill, and I was MUCH more functional than now. Also, conventional wisdom is that the earlier you get treatment, the more likely you are to recover (not that likely) or at least go into remission or be more functional. When I first became ill, they said most people who got better, did so within the first two years.

A very interesting (to me) site that is more about cutting-edge research is:
healthrising.org. Do note, however, that it also offers cutting-edge treatment options.

There's also this list of organizations working for ME/CFS patients.
https://www.verywellhealth.com/leading-chronic-fatigue-syndrome-charities-and-organizations-4146457
Some are better than others, and some I am not familiar with. The Solve ME/CFS Initiative (SMCI) has a patient registry and maintains a biobank from patients, both of which are to aid researchers in the field.

A note about finding a doctor. You stand a better chance of finding a doctor who knows SOMETHING about ME/CFS if you live in a larger city. Right now, the actual specialists are a handful, spread across the US (where I live; I don't know about other countries). Furthermore, these specialists can be extremely expensive, and most do not accept insurance. ☹️ I am just flabbergasted that I live in a moderate-sized city — with a well-known university which houses a top-notch medical school and teaching hospital. There must be hundreds if not thousands of doctors practicing here, yet we have exactly ONE doctor who knows about ME/CFS (and of course, he cannot accept new patients)! There are many more who know about fibromyalgia (FMS). The conditions are often seen in the same patients, so some doctors confuse them, but they are not the same! (And adding to the confusion is myofascial pain syndrome — which I have — that most doctors know nothing about, so they diagnose it as fibromyalgia.) A big problem for us is that no medical specialty has claimed ME/CFS. Your best bet is either a friendly (non-arrogant) PCP or a rheumatologist, who may or may not know a thing about ME/CFS. For now, we mostly just treat the symptoms.

I hope some of this helps you. I was saddened to see no one had responded to your post here. I hope that, perhaps, you found support elsewhere. If not, please don't lose faith. I have signed up to receive further posts here, so feel free to write back. I wish you the best of luck on this journey that no one wants or asks for.

With hope, sadness, and compassion, I will be thinking of you often …