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Some questions, possible CFS

Posted , 6 users are following.

seth18379
seth18379

Just wonderin about CFS as I've had some ongoing symptoms now. Not looking for a diagnosis just wondering how some other people's symptoms present. I'll be as brief as possible. I understand that it having been only 2 months for me, I technically don't have CFS, but many other things fit. So....

Im 28 yr old male, a Neuro ICU nurse. Live in Colorado. Spend a lot of time biking/rock climbing/running in the mountains. Happy as a clam and until a few months ago have been healthy as a horse.

January 5th of this year developed headaches, like behind the eye and also back of the head (occipital). Started on the right then kind of moved all over. This lasted for about a week. I literally NEVER in my life had had a headache of note before.

Also noticed a ringing in the left ear and a continued odd pressure feeling. I'm always having to 'pop' it, like I'm changing elevation but not. No hearing loss thought. This continues to this day.

About the 9th or so I woke up to go to work (I work nights) and was in a mental "fog". Felt like I was still 15% asleep. Had some minor night sweats only around my neck and head. Where the collar of my shirt was damp when I woke up. Nothing crazy like drenched.

I spent the next week sleeping 10-14 hours a day and waking up still in this state. It did occasionally feel resolved by near the end of a 12 hour shift. This continues to this day with minor breaks of feeling close to normal.

Noted very slightly enlarged cervical (posterior) and submandibular lymph nodes only on the right at this time. No pain. Haven't changed in size. I have shotty palpable lymph nodes inguinal on the right for years so not that concerning.

Went to the dr. January 18th, CBC, liver function, all normal. Normal wbc count at 4.7 and normal diff.

Symptoms went away for a few weeks with just occasional days of brain fog. No real headaches since then other than occasional sporadic really brief and mild pains, random parts of my head.

First week of February and the brain fog and fatigue came back. Also started having abdominal pain (very low, over my bladder).

Follow up with the dr. February 29th did a whole slew of labwork. No wbc count, Negative mono test, completely normal everything, Negative all STDs, Negative hepatitis and other work exposure stuff...

So here I am early March with daily brain fog and fatigue being really the only thing left consistent. Had a phone follow up with the dr. Today and she has "absolutely no idea what's wrong" hahah.

Does the fatigue get worse with exercise for most with CFS? I tend to feel much better during and for a short period after aggressive rock climbing or mountain biking. In fact, I have biked thast 3 days and the brain fog is very minimal. I tried just resting for about a week and only working and basically sleeping. Didn't change things at all.

Does CFS have some gastrointestinal component? About a week ago I had a day of brief nausea and upset stomach. Had the dr. appt. and labs the next day. Haven't had nausea per se since then, but my stomach is an absolute wreck. I generally eat a lot of food, primarily vegetarian with fish for several years. I have a pretty fast metabolism (6'1" and 145 lbs).

Now, absolutely everything I consume upsets my stomach, causes me to belch for hours afterword. I also have felt very "shaky" since the GI symptoms. Maybe not eating enough? Not sure. I'm considering asking for an MRI to rule out MS to be honest.

The next step according to my Dr. is to examine stress, lifestyle, mood, and diet...

I am immensely in tune with my body. I am not overly stressed at work or at home. I am absolutely not depressed or having anxiety, I am quite the opposite, having the time of my life. My diet has not changed in years.

My best guess always ends up at something post viral, although I figured it was post atypical mono (never had sore throat or really any fever or signs of infection).

Any thoughts? Anybody else feel better with very strenuous exercise? That's the only thing that helps for me, but it's brief.

Anyone else ever get to a CFS diagnosis never having a WBC count or really any evidence of infection? My doc seems to have ruled out infection based on my WBC counts, but if this is all a post viral issue I very well could have already had the raised WBC before I saw her and gotten back to normal.

Thanks for the input in advance!

Seth

0 likes, 11 replies

11 Replies

  • seth18379
    seth18379

    Posted

    Also normal thyroid levels. Checked that off the list too!
  • Bunnyhugger
    Bunnyhugger seth18379

    Posted

    Generally exercise makes CFS worse.  Diagnosis has nothing to do with your white blood count.  It is a complicated diagnosis of exclusion.  With your medical background, I recommend you get a textbook on CFS from Amazon.  I could recommend a title but this site won't allow me to post it.
  • jackie00198
    jackie00198 seth18379

    Posted

    Well, Seth. First of all, it's good that you've had bloodwork done to rule out other illnesses. You symptoms sound very much like ME/CFS, except for one thing: a hallmark of the illness is post-exertional fatigue. You said you felt better after aggressive mountain biking and rock climbing. The question is, did you then feel worse? A post-exertional crash can come days after the exertion. If you had no ill effects even days after the biking, etc., that doesn't fit in with a typical case of ME/CFS. If you did feel worse eventually, though, then that, and your other symptoms, sound very much like this illness. Stomach problems are very common with ME/CFS. Brain fog, fatigue, and headaches are also very typical. There are currently no positive markers for the illness, so it's also typical that your WBC is normal. If I had to guess, I'd say that your WBC was not previously high and then normal for the test. On the chance that you do have ME/CFS, you need to cut way back on your physical activity. Better to be safe...Because you can make this illness a whole lot worse by overexertion, lessening your chances for a recovery. You can be diagnosed with ME/CFS after only 2 months--I was diagnosed after 3 months, though technically "they" say you have to have had it for at least 6 months to be diagnosed. You'd do well to see a doctor specializing in ME/CFS, preferably an infectious disease doctor, though a rheumatologist is also ok. Dr. Daniel Peterson is a very well-known ME/CFS specialist who lives in Nevada. Be careful, get plenty of rest, and pace yourself.
    • seth18379
      seth18379 jackie00198

      Posted

      Hey jackie! Thanks for the reply.

      Actually examining it in that sense it is quite possible that the fatigue crash does come days or even a week after exertion. The last time it was cleared up to nearly normal I had spent basically a week sleeping. I then went on a 4 day trip to the San Juan mountains and did some very strenuous snowshoeing. I continued to feel fine but relapsed many days after this as well. I suppose I was thinking that exertion itself would be difficult or cause immediate symptoms in CFS.

      I'll know for sure shortly, as I've spent the last 3 days on a new bike riding all over the mountains. If crashing after exertion is a sign I'll likely have a very rough time this week.

      Thanks for the info. I'm going to start really relaxing. I'm going to hold on for another month pending no new additional symptoms and if unchanged probably schedule an MRI to rule out other possibilities. I'll talk to my GP about an infectious disease specialist. She actually mentioned today that she was going to discuss it with colleagues because she isn't sure what to think so perhaps something will come of that as well.

      Thanks for the help guys. What a frustrating condition... especially coming from never being sick a day in your life.

  • Beverley_01
    Beverley_01 seth18379

    Posted

    Hi Seth,

     Kind of contrary to what is said about Cfs/me, at first I felt slightly better when swimming sometimes in the early days when it seemed to have no rhyme nor reason. Nothing seemed to make much difference but, I would get worse days. Slurring speech, mind fog, falling to one side-like I was drunk,do you get that? I even managed a massive walk was 'just' terribly shakey and slurry etc after so, I'd think "I've got away with it" I'd have terrible days of pain, exhaustion, no memory, no energy, no way of getting from a to b without feeling absolutely ghastly. I, unlike many on here, did not get my cfs/me as a result of post viral illness. I was involved in a car crash and suffered a fractured spine. All my symptoms were put down to the crash trauma, i had PTSD symptoms and of course pain due to the injury but, I remembered feeling this exhausted the day after the crash and it never went. I was told I'd get back to normal, it would just take time. It was 18 months before a penny dropped that this was taking a long time. That's when I was referred to the cfs/me clinic. I did yoga and Pilates classes and felt these helped but I would shake and yawn and the main embarrassment was slurring and stumbling on words if I talked. I'd walk to the classes, which I didn't figure into the equation. Eventually, I had to stop going about 6-8 months ago. I had to revise my 'action plan' as I was finding it more andmore difficult.  over here in the UK its about finding a baseline and then building back up. 3 years in and I'm still to find my baseline. I rest at least 3 days a week presently. In answer to your other question, one of my first symptoms after the crash was the stomach issues, bloating, excessive gas, some discomfort. All tests showed nothing serious and was put down to IBS. Again, no rhyme or reason as to what I ate.If it is cfs/me, it seems that you really need to change your active lifestyle in order to get back your energy. Imagine your energy is a battery and at present its faulty. The more you demand of it, the faultier it will become. Eventually, like a faulty battery, it will need longer and longer to charge.

    Ps. I have same with ear but right side.

     Hope that helps

    Beverley

    • seth18379
      seth18379 Beverley_01

      Posted

      Hey Beverly, thanks alot for the info! I can't believe it's been 3 years. Im not exaggerating when I say that I probably would lose my mind if this sustained for 3 years. I don't think I have the patience.

      Never really had any issues with balance or forming words, although a day here and there when the mind fog gets bad I notice myself sort of choking on a word once or twice, but I also can tell that it's mostly from trying to talk fast and it's anxiety based. It happened a bit initially when I was pretty confused and scared about the brain fog, but not so much anymore.

      It happens once in a while at work because I feel foggy when getting report on a patient and I get a bit anxious about whether or not my coworkers perceive it. Again, most of my anxiety about all this was early on when I was clueless as to what was going on.

      I do very aggressive bouldering/lead climbing at least 2-3 days a week and have had no issues with coordination or balance or even weakness. I've actually sent some of the hardest routes I've ever done this last 2 months. A few times I could tell I went a bit too hard and felt some brief nausea and light headedness... once at the gym and once when I was about 300 feet up a 500 foot multipitch with my brother! Not a fun time to get sick!! But it resolved in both cases very quickly. Had no real issues during aggressive mountain biking this weekend (ten mile or better rides with +/- 1000 or more feet elevation gain/loss each day)

      I have no trouble getting up, walking, doing daily activities, etc. I haven't even missed any work. Towards the end of my 12 hour shifts I generally feel less of the brain fog and pressure in my head than when I wake up for work.

      It sounds that on the whole maybe my symptoms are pretty pale compared to some of the things other people have experienced or maybe arent even PVF or CFS at all. At least currently. I'm hoping it's not one of those things that gets worse before it gets better. Definitely going to be taking a couple weeks off of activity and will continue to evaluate activity. I also do yoga/meditate and probably will substitute that for the more aggressive stuff.

      Anyone else have trouble with healthy foods? I normally eat extremely healthy, but since the stomach issues started anything remotely healthy has been the hardest on my stomach. Whole grains, home cooked vegetarian stir fries, salads... the things I normally eat... are absolutely unbearable. Tears my stomach to pieces. Conversely, I had little trouble with a piece of cheesy pizza and today with a pretty greasy Italian sub.

      Weird...

      Thanks again so much guys.

    • Beverley_01
      Beverley_01 seth18379

      Posted

      Hi Seth,

      If it is cfs/me, it may take time to develope other symptoms or it could be something else. Re foods, cfs/me does seem to impact on our digestive system. It can also change our tastes It appears. Yours seems to have come from nowhere, can you think of a trigger?

      Best wishes

      Beverley

  • nannettesea
    nannettesea seth18379

    Posted

    Hi, Seth-

    I know you're a medical professional, so most of what I will say here will be part of your knowledge base....I will speaking from personal experience.

    First, the headache, tinnitus and "popping" of the ear are concerning to me.  These can be symptoms of an acoustic neuroma, but I would expect some hearing loss.  I had an AN while testing normal for hearing in the tumor ear, had it removed, and that's when my CFS symptoms blew up.  An MRI might be a good idea if you can persuade your doc, and also rule out the MS.

    Yes, I concur with others that the gastro stuff is often a problem.  But the fact that you had such rapid onset makes me wonder.  You know a lot (if not most) of our immunity is in the gut.  Sounds like you have a floral imbalance, and/or possible gallbladder (nausea, diarrhea, etc) issues?  I'd find a good probiotic, avoid grains and especially gluten if that's possible being vegetarian, and foods that are gas-inducing.  Again, tough, since beans might be a staple for you.  If there's any way you can do homemade yoghurt, with 24 hour fermentation, add some good saurkraut, that could help.  Also, did your doc test for parasites via stool sample?  And, did your doc do vira tests for Epstein Barr and other viruses?

    With your high activity level and tolerance for it, CFS or ME don't seem to fit.  As Jackie said, post-exertional fatigue is a prime symptom.   I haven't really had brain fog, mostly just difficulty concentrating due to fatigue.  

    The shakiness might be blood sugar issues, and it could be your body is wanting more protein given your vegetarian diet.  Bodies also change as we age, and your nutritional needs might be changing.  I know vegan/vegetarianism aren't right for my body...I've done them both, and been all raw vegan for a while, and it did nothing to help my CFS.

    I do know anxiety worsens everything, and one needs to find a balance between focusing on the stuff happening in the body and allowing ourselves to relax and have a life.

    Good luck.

    • seth18379
      seth18379 nannettesea

      Posted

      Hey guys,

      Doc did a Monospot but didn't do an actual ebstein test. The mono test was negative though and mono was my best guess.

      I haven't really had diarrhea during all this. She hasn't checked stool for parasites. The stomach issues are relatively new (in the last week) so I'm just giving it a bit of time.

      I looked alot into acoustic neuroma when this all initially happened and it does fit and would even explain the nausea. To be honest I'd probably just go demand an MRI now if my symptoms got suddenly worse or if my balance became off, but I'm just holding out. Also I'll be switching to a much better health insurance plan on May 1st so I'll be saving some money so long as I don't get extremely sick by then.

      Couple things that do make me still lean toward a recent infection are the brief night sweats and the swollen cervical nodes. I don't think AN would necessarily cause that. And in my line of work I'm exposed to all manner of disgusting bugs.

      Also I moved from ohio to colorado in September and went through an extremely stressful ending of a relationship at that time. While I felt quite fine emotionally by the end of November, I think those first few months being suddenly very far from home were probably more stressful than I felt they were and could very well have been a trigger, and certainly did not help my imune system in the least.

      My outlet was of course trail running and rock climbing 3-4 days a week, so I could have wore myself down. But again, by December/January I was hardly overdoing it.

      I was considering dropping gluten to see if there's something going on there. I hardly consume dairy but when I do its usually greek yogurt, and I also drink kumbucha so I don't think it's floral and I don't have necessarily stool issues thay would make me think gallbladder but I'll discuss if with the GP. If she "has no idea what's wrong" with me by her own admission then she should be open to suggestion.

      Thanks again. Just hearing about other people in the same(ish) boat is quite relieving. I've been off for so long that it's hard to remember what it's like to feel normal. But if I start Overthinking it I remember that nothing last for ever and that I am having fun currently. Even if it's a brain tumor there's a fix, and even if it never lifts I'll still have good days of biking and climbing and running.

      Thanks guys,

      Seth

  • TheRoyalGeek
    TheRoyalGeek seth18379

    Posted

    I had a Fibro diagnosis but I believe now that it might be CFS. Do you go through forests though? Have you been checked for Lyme Disease? 
    • seth18379
      seth18379 TheRoyalGeek

      Posted

      Haven't been checked for lyme. I spend ALOT of time trouncing through forests but have never had a tick actually like lock on. Have found a few crawling on me.

      Lyme disease almost always leaves that textbook rash and generally the tick has to be on for 12-24 hours to transmit. Growing up hunting in ohio Ive always diligently checked myself after running around in the woods. I think it's unlikely, but I'll certainly put it in my next round of tests if I don't get any improvement in the next month

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