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Do I have CFS?

Discussion in 'Symptoms' started by Peter Park, Mar 30, 2018.

  1. Peter Park

    Peter Park New Member

    Hi everyone,

    Pretty new to these forums but I've been ill for about 3.5 months now..and have been doing a lot of research into CFS as some of the symptoms match mine and been paranoid about whether or not I have CFS. I am a 28 year old male and used to be very healthy and in the best shape of my life before I suddenly came down with this and the last couple months of my life has been like hell and the worst thing I've ever gone through. I was wondering if someone could tell me if they think I have it or not...or if someone has any idea what I am suffering from. Please bear with me for this is going to be quite long.

    Mid-December 2017 - Sudden onset in Korea
    It all started when I caught a weird flu-like bug going on vacation to korea back in december and experienced sudden flu-like and food poisoning symptoms like diarrhea, nausea, severe bodyaches, chills, severe fatigue and weakness, loss of appetite, and sometimes shortness of breath that landed me in the ER a couple times. Despite the couple trips, doctors couldn't find what was wrong with me as urine samples, blood tests, flu tests, and xrays all returned negative.

    Late december-Early Jan 2018 - Return to US and seeming recovery
    So I cut my vacation short and returned back to the states to get re-evaluated by my PCP. Immediately upon my return, I saw my PCP who told me he thinks I'm just going through the remnants of a bug I caught in Korea and should be back to normal soon after it runs its course. Couple days upon coming back, I realized a brief reprieve in some of my symptoms, diarrhea had subsided, appetite was slowly coming back, and I started experiencing some upper respiratory symptoms for a couple days such as cough, runny nose, congestion, but the debilitating fatigue, bodyaches, and weakness seemed to have dissipated.. then there were a couple days of feeling 90% normal aside for a very slight sense of dizziness which I attributed to just being bed-ridden for awhile and jet lag. Overjoyed with my recovery, I went out to go shopping at outlets, went out to meet with friends, and did some music practice...things I did normally before I became ill. I was still on vacation from work so there was nothing stressing me..

    Early to late January - Relapse of symptoms
    until I got into a big fight with my girlfriend and thought we were going to break up...which got me extremely sad...I remember crying myself to sleep that night. The following day I remember a relapse of symptoms similar to how I felt in Korea which included the severe fatigue, nausea, weakness, body aches, some heartburn-like IBS symptoms but no diarrhea, and again a decline in appetite, and on top of this, I had trouble falling asleep and staying asleep. Waking up in the mornings I felt unrefreshed, dizzy, and not too different from how I went to sleep the night before. Needless to say, I went back to my doctor who prescribed me so antidepressants (zoloft) to try and also did a full workup of my blood which came back normal again. He told me to give it another week or two and that I should feel gradually better.

    Feb.-Mar. - Gradual recovery with periods of relapses in between
    So for the next couple weeks I went through periods of briefly feeling better where I can run a couple errands outside like groceries and do some light exercise (walks) and "crashes" where I would be house-ridden and able only to do basic things like eat, wash up, watch tv, etc. I took a disability leave from work as I was unable to focus at work and the one day I tried to return, I ended up in urgent care with another attack similar to what I experienced in korea only to have the doctor send me back home saying everything is checking out fine. After about 8-9 weeks of this I did notice some gradual recovery with some lesser relapses in between:
    - I would be asymptomatic for longer periods during the day (I would have a 3-4 hour window of "no symptoms" in the beginning of jan when symptoms first re-emerged...then at this point it was more like I would have 3-4 hours total during a bad day I would feel symptoms and sometimes no symptoms at all on good days)
    -I started getting 7-14 day streaks of no symptoms.
    -On days I would exhibit symptoms it would be a less severe form of it which would include:
    -fatigue, but not quite as debilitating
    -slight loss of appetite
    -no more ibs or trouble falling asleep
    -no more diarrhea
    -no upper respiratory symptoms at all

    However, about every other week, I would experience a return of symptoms lasting a couple days (occuring in 1-3 hr episodes during the day) that included:
    -extremely tired (physically/mentally)
    -unmotivated to do anything, would dread doing things at times as if impending doom
    -usually cold
    -slightly nauseous
    -feel sensation of stuffiness but cold as if indigested
    -tingly sensation throughout arms and body as if bloodflow is restricted
    -happens more often in the afternoons after some exertion
    -feel slight pressure in the sinuses
    -usually accompanied with loss of appetite
    -lightheaded/dizzy
    -usually sad/moody/depressed/easily irritable/very sensitive

    Reported all this to my doctor and although he still stood by his initial guess that it was just a bug that was working itself through my system, he referred me to an ID specialist who ran about 15 different viral/immune tests on my blood including HIV, EBV, CMV, HHV6, syphilis, ESR, ANA, blood cultures for blood bacteria, IgG, IgM, and a couple others which all came back negative. Following all the tests, both doctors stood by their initial guesses that I just may have caught a very bad form of the flu (influenza) that may have not been properly detected in korea that is taking a particularly long time to clear out of my system given I was under stress and time zone changes and different environment (record cold temperatures in korea...I was never exposed to such cold temperatures in my life as I am from Southern California).

    Currently - Return to full-time work
    Since the results of the viral testing has come back I haven't noticed (at least to me) any significant improvements in my symptoms... and so decided to try acupuncture for a few weeks which I have not noticed too much of a noticeable improvement in symptoms...stil couple days to a week of good followed by symptomatic days where I would experience the symptoms I mentioned above in varying intensities for 1-3 hours a day. My girlfriend and family suggested that I return to work and try to expose my body to normality again as I used to be a very active/healthy guy (would go to gym to do strength training 6 times a week, and sometimes play couple hours of full court, high intensity basketball on weekends on top of a 40+ hour work day and very involved in my local church community) and perhaps my body was just deconditioned from such a long period of inactivity and that maybe it was a mental/psychological thing.

    So here I am having completed one full week of work (9 hour days) now and noticed the following things:
    -I can get through a full day of work, albeit barely (yay!)
    -some days are better than others.
    -I am extremely exhausted after work...feel like I can't move a muscle.
    -Current symptoms include:
    *a constant dull pulsating pressure sensation behind my nose(sinuses) that causes mild to moderate dizziness and sometimes mild nausea, can last all morning and afternoon..I feel like this is the only symptom that has increased in severity perhaps because my uptick in activity?
    *a drastic increase in appetite (i feel frequently hungry)
    *increased urination..need to urinate every hour it seems like
    *constantly slightly tired (sleepy)
    *slight fatigue/body aches during the morning/afternoon..to pretty severe for about an hour or 2 after work.
    *moments of unmotivatedness/difficulty concentrating
    *moments of constricting of airways in nose making it difficult to breath productively but no mucus

    It just feels like it's 2-3 times harder to go through a normal day of work than it used to be before I got this illness. I am no longer sad so I stopped taking my antidepressants and feel like I'm constantly operating on a deficit of energy since returning to work... I am so sick of tracking how I am feeling and not being able to exercise like I used to or hanging out with people like I used to because I'm so "tired" all the time...Now I'm telling people at work that I am "better" but I'm definitely not and feel like I may hit another major crash going on like this... Obviously CFS is a far-off assumption (says my doctors) but I have been really identifying with some hallmark CFS symptoms like post exertional malaise, extreme unrelenting fatigue, and unrefreshing sleep... however I have experienced a gradual degree of improvement too? Sometimes when I'm in the middle of my pain I forget the strides I have made. Regardless, there are some things that I have yet to be checked as my doctors have employed a "watchful waiting" strategy which has been very frustrating to me...but here are some things I am suspicious of:

    -hormonal issues (thyroid problems or adrenal insufficiency/fatigue?)
    -heart issues (sometimes i feel stuffiness in my chest as well as tingling sensation in my arms as if circulation is not happening as it should...I have an odd feeling my ongoing dizziness might be related)
    -sinus issues (I have a history of sinus infections and thinking maybe it may be related...although my sinus pressure/dizziness doesn't come with any mucus, runny nose, discharge, or any of the classic sinusitis symptoms)
    -neurological issues (I have had a history of 2-3 months of severe headache/facial pain episodes, some people told me the pressure in my sinus/head can be a migraine)

    Seeing my doctor this coming Thurs and going to demand referrals to an ENT, neurologist, and an ECG, along with a hormonal test which I'm not sure why he did not do earlier... I mentioned some of these before but he would simply just brush me off saying those were highly unlikely and since I'm a healthy young guy, I don't fit the usual "demographic" of CFS or any other of these symptoms and keep insisting this is just a long-lasting flu. But 3.5 months to now nearly 4 months...really?

    Somebody please let me know if I am just going crazy or maybe it's time to change my PCP... but if somebody has gone through something similar like this for 3-4 months and recovered, please let me know so that I know I'm not going crazy.

    Also, I really value honest opinions and not people who just want to make me feel better. I really don't mind if what you have to say is negative as long as it's constructive...I have been suffering with this for awhile but if what worked for you is just having a simple change of attitude, please let me know what kind of treatment techniques worked for you or it just simply got better over time! I find that recovery stories are the most helpful and best thing to read about here.

    If you made it this far..thanks so much for reading and I am looking forward to your responses. My doctors are "confident that I will make a full recovery and that this will be just a season for me" and I am surely hoping so...Thanks so much!!
     
    Merida likes this.
  2. Merry

    Merry Well-Known Member

  3. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I'm sorry to say but my guess is that you have ME/CFS. You should definitely do all the tests planned in hopes that they will turn up some but you have a kind of classic pattern of ME/CFS onset - a viral trigger of some sort - often never identified - followed by times of partial recovery but then relapses when you try to get active again. If have ME/CFS and you keep pushing the envelope you run the risk of depleting your system further.

    As you note the core symptom of ME/CFS is something called post-exertional malaise - symptom flare after exertion (it can be mental or physical exertion).

    You are lucky in that you have gloomed onto this potential diagnosis relatively early. The key thing to do is to rest and pace, eat a good diet that doesn't stress your body further (lots of vegies, high fat and protein, low grain and dairy, lots of fluids, low carb intake, seem to work best for many). If you're careful you may work your way out of this. Practice sleep hygiene, try meditation to calm your system down, etc.

    I know someone who worked his way out of West Nile Virus triggered ME/CFS. He was very disciplined...
     
    Merida likes this.
  4. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    This is not just a woman's disease. I was 19 - healthy as a horse - very athletic like you - when I got ME/CFS. Almost 40 years later I still have it. I've never been able to exercise without symptoms since then.

    Young men in good shape get this disease all the time. Jamison Hill - a body builder and weight lifter and trainer - came down with a very severe case of ME/CFS. No one is immune!
     
    Merida likes this.
  5. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    If there's an ME/CFS specialist near you definitely see him/her. Where are you located?
     
  6. Peter Park

    Peter Park New Member

    I am in San Diego. Any doctors that you would recommend? I know there is Dr. John Chia over in Torrance but his waitlist i hear is a typical 5-6 months.
     
  7. Cort

    Cort Founder of Health Rising and Phoenix Rising Staff Member

    I would get on Chia's waitlist. He's very good. He may be the best you can get in So Cal. If you're still not well by then you'll probably want to see him.

    In the meantime Rachel Riggs lives in San Diego - check out her ME/CFS for the Irreverent Facebook site. She would know about docs down there I think. Good luck!
     
    Merida likes this.
  8. Hip

    Hip Well-Known Member

    You probably were not tested for enteroviruses (coxsackievirus B and echovirus), which are one of the major viruses linked to ME/CFS. Dr Chia will test you for these, and if you have high antibody titers, will usually treat with the immunomodulator oxymatrine.
     
  9. Merida

    Merida Well-Known Member

    Yes, my son has CFS too. And his symptoms started with a virus, age 5. I am wondering how many of the CFS men see symptoms in female relatives? Or have relatives with Parkinson's, M.S.?