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Do I have CFS?

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xpeetzax
xpeetzax

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!!

0 likes, 19 replies

19 Replies

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  • tracy47348
    tracy47348 xpeetzax

    Posted

    Very good diary of illness! Sounds like my story. I lived in san diego when i recieved my first flu shot requured at work. Ugh. Got sick every 2 weeks with a flu related illness. Then traveled to europe with a friend. Had to see a doc over there as a just couldnt get energy to backpack. He diagnosed it as exhaustion. I knew it was post viral stuff bit when i returned to states i crashed again with a bad flu. Bedridden for a week. Thought i was dieing. Doctor to doctor. Finally one doctor said chronic fatigue syndrome. Was he ever right. 27 years later i still suffer. You could try valcyte right now and maybe it will cure your virus. I waited too long and tried valacyclovir and it didnt work. You just have to adjust to your new sedative lifestyle. I could still do my favourite things occasionally on good days like rollerblading and skiing. You have to watch the movie "unrest" on netflix or pbs. This poor girl had it bad. But think she has luck with valcyte. Take lots of vitamins, magnesium, organic, minimize sugar and wheat. Best of luck.

    • xpeetzax
      xpeetzax tracy47348

      Posted

      Thanks tracy for your input...I am so sorry it has been so long. Could doctors prescribe you valcyte without a positive viral test?  My ID specialist told me it's a dangerous drug and only given to "severely immunocompromised" patients.

  • jackie00198
    jackie00198 xpeetzax

    Posted

    OK, so here is my honest opinion. I think it’s highly possible that you have ME/CFS. Your experience with symptoms is eerily similar to mine. I came down with a flu, seemed to improve, went back to work feeling not completely well, then got very ill again. I had two doctors do blood tests that came back normal, who then told me that it was “all in my head.” In my case, I was so severely ill that it was laughable to think that it was psychological. So I went to a specialist at UCLA, who diagnosed me within 20 minutes with ME/CFS. He had absolutely no doubt that I had this illness. This was 3 months after onset, even though common wisdom at the time was that you had to be ill for 6 months to get the diagnosis. He diagnosed me by first ascertaining that my bloodwork had come back normal, then asking me certain questions. One thing this doctor didn’t do, however, that could have changed the course of my illness, was to warn me about overexertion and explain the importance of rest and pacing. I kept pushing during times when I felt better. Until I had a colossal crash from which I never really recovered. So here I am, 20 years later, almost completely housebound. This is a cautionary tale. If you do have ME/CFS, you have every chance of making a good recovery. You’re young (much younger than I was when I was diagnosed) and have perhaps zeroed in on a diagnosis after only 3 or so months. I think it’s very important that you go to an ME/CFS specialist to get a definite diagnosis. A knowledgeable infectious disease doctor could help. Or if you tell me where you live (I live in Los Angeles, by the way), I may be able to give you the name of one of the highly qualified ME/CFS doctors in the U.S. A few points of interest: there are currently no biomarkers for ME/CFS, so bloodwork can only rule out other illnesses, not indicate that you have this illness. Also, there are many paths into ME/CFS. I believe the most common path into the illness is a virus. Though this illness seems to be precipitated by many kinds of physical events, including traumatic events like a car crash, for instance. Many people report a physical event, like a virus, in conjunction with being stressed over something, which is what happened to me. Another point of interest is that GPs are woefully uninformed about ME/CFS, so are inclined to be dismissive, or to jump on the prescription of antidepressants. This happens a lot.  In the meantime, even though well-meaning family and friends may advise you to just resume normal activities, that is not good advice. If you do have ME/CFS, it can make the illness a lot worse, and lessen your chances for a recovery.  So don’t push beyond your energy envelope, and get lots of rest. The worst that can happen by following this plan, is that you’ll be well-rested and perhaps a bit deconditioned. Please post here or PM me if you have any more questions. I do know people personally who have made a full recovery from ME/CFS.
    • jackie00198
      jackie00198 jen123456

      Posted

      The closest ME/CFS specialist I know to Santa Barbara is my own doctor in Los Angeles (in Torrance, specifically), Dr. John Chia. He's a top ME/CFS physician/researcher in the U.S. He typically has a 6-month wait for patients, though once you get on the list, there's a chance of a cancellation and an earlier appointment. This is what happened to me. I highly recommend Dr. Chia.

    • xpeetzax
      xpeetzax jackie00198

      Posted

      Wow Thank you so much.  That was extremely helpful.  I currently live in San Diego.  Is there a CFS/ME specialist around here I can see?  I was thinking of seeing Dr. Mark Stengler at one point but he was too expensive and doesn't take insurance ><.

    • jackie00198
      jackie00198 xpeetzax

      Posted

      The closest ME/CFS specialist to you that i know of is my own doctor, here in Los Angeles (specifically, in Torrance), Dr. John Chia. He does take insurance. If you are able to travel to L.A., I highly recommend that you get on the wait list to see him. If there is a cancellation, he can perhaps take you earlier than the typical 6-month wait. Dr. Chia often treats patients with a Chinese herbal treatment, called Equilibrant. He said it helps a certain percentage of patients. It cured his son, who had ME/CFS. I highly recommend Dr. Chia. You can Google him for more information.
  • Guest
    Guest xpeetzax

    Posted

    I feel your frustration! I have been experiencing a lot of the same symptoms for 5 months now. It started at a time I was under a lot of stress but also had a recent flu shot and a unprotected sexual encounter, so been trying unsecsessfully to get a diagnosis, full blood work panel showed mostly good, had a couple of deficiencies that I’m taking supplements to get levels up, also had full std panel done all negatives, been to GP, clinics, urologist, dermatologist, and a naturopathic dr. With no diagnosis, the naturopathic is definitely the most helpful, has me on a good supplements plan and just started some antivirals (famvir) I did show a positive for EBV but prob an old infection. But seems a lot of what I’m researching in has some kind of viral influence. My suggestion is to do as much research as you can and find a specialist that treats these symptoms and get on a good vitamin/ supplements plan,I know I have been going through hell the last five months trying to balance life/work and dealing with this. I wish you luck?🏻

    • xpeetzax
      xpeetzax Guest

      Posted

      Thanks so much.. I also had a memory EBV show positive but doc also said it was probably an old infection.  I plan to see a naturopathic dr soon...but will they prescribe antivirals for you when you still show a negative on the viral tests?  I had viral tests done for EBV, CMV, HHV6, the usual culprits behind CFS/PVFS and all came out negative...
    • Guest
      Guest xpeetzax

      Posted

      Mine got me a prescription for famvir and I’m about 10 days in and actually been feeling a little better the last three days but don’t want to get my hopes up, but will see. By chance did you get a flu shot or vaccines recently also maybe run tests for hsv1&21st.

    • Guest
      Guest

      Posted

      Hsv1 & 2

    • xpeetzax
      xpeetzax Guest

      Posted

      Hmm. No I did not get those tests done nor flu shot.  If you don't mind me asking what area you are from and how old you are?  Want to see if I can look into your doctor and also see what kind of demographic you are coming from. 

    • Guest
      Guest xpeetzax

      Posted

      Send me a pm, I’ll give you info.
  • ruth13083
    ruth13083 xpeetzax

    Posted

    Sorry to hear that you have had such a rough time of it. My story is kind of similar. Nearly 8 months ago my colleague and I came down with some kind of gastric infection. We had roughly 5 months off work as it totally wiped us out. Very slowly we have improved and I am now back at work part time. Would reducing your hours at work help, just for a while? 

    Like you I am in a recovery limbo; far better than I was but still having residual symptoms with good and ‘not so good’ phases. A not so good day was once what I considered a good day if you see what I mean. All your symptoms sound familiar. My diarrhoea has finally cleared up but I still get annoying indigestion, the odd pressure headache with some nausea, body aches and tingles rushing through me. The fatigue has really improved.

    Take heart in that you are slowly improving but also keep listening to your body and pacing yourself. Maybe yoga would be a better alternative to intense cardio work outs.

    I too have had a whole battery of tests and investigations which were all negative. I’ve seen an ID doctor too and he says post viral syndrome. In the back of my head I always thought ‘but it must be something they’re missing’ but I’ve now come to accept the diagnosis and treat the symptoms. I take magnesium, coq 10, vit d and b12 and zinc. I had my thyroid checked too but it was fine. 

    It’s very disheartening to have a run of brilliant days and start to think it’s gone, and then have things creep back in. I too can feel absolutely fine and then not, in the space of a hours. It’s a lot to take in and deal with. But, you’ve got to be positive and thankful. Thankful for all the things you are starting to do again. I notice now I have an interest in things again and I’m shaking off that depression/lethargy/disinterest that lingered for so long.

    Who really knows if PVS/CFS/ME are actually lingering viruses that never really leave the body, or a collection of conditions lingering post infection? Even if a virus is detected there’s no magic bullet for treating them anyway.  

    I think it’s a positive that you haven’t been given a label yet of CFS as your doctor must be confident in your recovery. It sounds to me like they’re being thorough.

    I hope you continue to improve. I try not to count the weeks and months any more or day dream about times of feeling totally well all the time. You’ve got to just focus on the now. 6 weeks ago I really thought I wouldn’t be able to survive three days a week at work and now I’ve been back 6 weeks. The first week I had to come home and just go to bed every day, this week I came hone and did the gardening! It’s also very easy to forget what your WERE like and not notice your recovery as it can be so slow and imperceptible. Good luck to you and best wishes to all out there struggling with this. Xxx

    • xpeetzax
      xpeetzax ruth13083

      Posted

      Wow..thanks so much Ruth.  That was so powerfully encouraging.  I will definitely continue to focus on the positives as I feel I make more progress that way anyway.
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