Looking for answers..afraid.

Joshua

Member
Let me preface by saying how brave you all are.. if and so I am diagnosed, I do not know if I will be able to cope. -Hi guys, I've had panic and anxiety attacks for many years, I usually can keep it in check, a month ago I got very very sick with a bronchitis, I was bed ridden.. took a Z-pak... beat the sickness but I started having real bad anxiety and depression.. the thing that helps me is physical exercise. Well about two weeks ago I started getting cyclic flu-like symptoms the days following any type of workout... or at least what I noticed.

Like, I'll workout, then 3-4 days following I feel so confused, body aches badly, nausea..chills. I'm very depressed, I just want my life back. I'm a very actice on the go type of person..and now I just want to lay in bed all day because I don't want to trigger anything. I had a blood panel, everything checks out normal.... but not ruling out Lyme...

I will say that on Sunday, I went for a very intense run, on very limited sleep, about 3 hours.. and I felt really okay all day, the next day even I was ok and even today...but I know that may not even be indicative of if I have it or not because the symptoms are so damn varied!

I've been doing reading all day making myself paranoid, there are so many different causes and treatments, mold? Adrenal fatigue? Pathogens? I mean.. God almighty.

Has anyone ever recovered from this? It's so frightening because there is seemingly no cure.
 

Who Me?

Well-Known Member
Welcome Joshua. It's easy to get overwhelmed. Have you even been to a doctor or are you letting Dr. Google scare you?

A member Hip has put this together. It is very useful to help figure out what is gone. Too many things to jump to the conclusion that you have ME/CFS.

There is no cure for MECFS. But you will see many of us fighting to treat symptoms and work on what we think is the source of our illness. The best thing you can do is find a doc who will start running labs to help narrow down the possibilities. The sooner you get going to figuring out what is going on the better you will be.

Where are you? Maybe someone here can tell you some docs in your area

http://www.healthrising.org/forums/threads/chronic-fatigue-syndrome-a-roadmap-for-testing-and-treatment.3679/\
 

Joshua

Member
Hi Who Me, I've just been googling and googling and googling.. I wanted to exercise today.. but .. if I get sick afterwards, I'll probably have meltdown lol. I had a Doctor who ran some blood tests on me, but I know those are sometimes inconclusive for what may cause the post-exercise stuff, like the lyme.. HPTA dysfunction, all that. I am in Dutchess county, NY. I read about all these folks who relapse and can't get out of bed.. 20+ years of suffering I don't know what I would do.

I'm probably jumping very far ahead as I've only had these symptoms for what I believe to be 3 weeks, but I've heard Rituximab, the drug shows some promise..although may not be available for years.
 

Who Me?

Well-Known Member
@Joshua You're hilarious if you are talking about rituximab without even having a diagnosis! Lol Sorry I'm not laughing at you, ell maybe a little. Calm down and take a few deep breaths. 3 weeks is nothing. Maybe you just have mono?

Listen to your body. If you get wiped doing stuff then don't do it. That just makes sense for anything.

The way to dx MECFS, if you have that, is to rule out everything else, since this is a disease of exclusion. Please read Hips Roadmap. It's really helpful and maybe will answer some questions. And don't worry about 20 years from now.

I don't know where Dutchess County is but Susan Levine is in NY.

I can't add much more, I'm brain dead today but I'll tag a few people who are smarter than me and maybe they can help @Remy @Strike me lucky
 

Joshua

Member
Well, I don't think my blood test showed any antibodies.. I know, i'm trying to relax lol.. I just have really bad anxiety and panic disorder as well.. and i'm playing the "is it in my head?" game... It's brutal.. I'm just visualizing myself losing my business and not being able to get out of bed while all my dreams and hopes go out the window.

Sorry, I'm just anxious. Interestingly I have had mono twice in my life, years ago though.

maybe I should get out of the house.. I don't know.. scared of feeling tired.

Thanks Who Me, how do you cope?
 

Who Me?

Well-Known Member
@Joshua, Sorry I totally forgot about your anxiety. yah it's hard not to freak out.

I had mono in high school but now I am positive for CMV, EBV, HHV6. You were sick with something so maybe that just did something to any latent viruses you have? I don't know. I don't get much about the science behind things.

It's funny but in my former life I was wound really tight. I still am but I never freaked out about being sick. I just kind of go with it. I don't know really, but since you have anxiety to start I can see how your brain just starts to spin out of control.

How do I cope? I don't know. I've been sick a long time and I just kind of just go one minute at a time. I told someone here that I just kind of gave myself over to it, like an alcoholic. It's a waste of energy to rage and fight. I use my energy reading what others do and adding stuff to what i'm doing.

One of the smartest things I did was to find a good Naturopath a few years ago. She had no problem getting me antivirals, which I had been buying from overseas, and has been really supportive.

The last few months I've stepped things up, working on new aspects hoping to make a difference. And some things help. But it takes time and you have to have an idea of what's going on to start with or it makes no sense to just take a bunch of crap because someone else did.

One thing we know with MECFS that what works for one person won't work for another. What I suggest to you so that you don't totally go nuts is starting being methodical with what you do, find a doc, read Hips roadmap, and start being proactive.

The thing I find that helps me is being proactive and doing things instead of sitting back and feeling like a victim. Take control.
BTW. put an @ sign in front of the persons ID so they will get an alert that you said something to them.
 
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Joshua

Member
@Who Me? What do the antivirals do? Yeah, I was insanely sick after coming from a vacation april 11th, fever hallucinations.. all that.. then I had massive panic attack cycle.. and in trying to combat the panic I exercised..only finding I felt sick for a few after each. I mean sick like.. i'm simply just not there.

How different is your life really? I mean.. can you still enjoy vacations and work and what not? I hear younger people have greater success in getting over it and exertion can prolong it, however.. who really even knows. Maybe one day one can just wake up and be fine.
 

Who Me?

Well-Known Member
I'm on myphone so can't type very well.

I'm 64 and have not worked since I got sick. I am mostly house bound. I go out to doc appts and that's about it. But this was gradual, each year a little worse

It's not so much age as getting disgnosed and treated as soon as possible. Antivirals stop viruses from replicating. Not a cure. There is no cure but keeps me from getting worse

If you've been reading all day you know no one just Wakes up and is fine. Until you do something to help yourself nothing will happen

I can't write anymore. I'm wiped and don't have much patience.

Hopefully someone else will see this. I have nothing left to tell you.

Good luck
 

Victor Maalouf

Active Member
Do you have back pain? Upper on one side or lower on one side? Any hip pain? Any shoulder pain? Any muscle strains or minor injuries while working out during the period you describe? Further in the past?

Look at yourself in the mirror with your shirt off. Is there an imbalance in your shoulders? Do you lean to one side? Are your clavicles uneven?

You sound in your 20s. What did you do on vacation?
 

Joshua

Member
@Victor Maalouf Hi Victor, I have a real bad sciatica that flares up when I am sedentary. I do have very minor injuries, a stress fracture in low back very slight bulge in upper neck... so minuscule though. Actually, that's funny you ask that because my one shoulder has been uneven for awhile, I chalked it up always to haven broken the collar bone, It's not really noticeable at all, the unevenness, but when I pick two objects up, I can feel it.

Yes, I am 26 years old, 27 in July...oh the typical young guy stuff, drinking, dancing, bad sleep.. some poker. I was on antibiotics for a sinus infection, but I got off of them when I went away. The day home I was floored with what only I can explain as similar symptoms to get when I exercise now...well, except the brown mucus and blood in mucus from nose.

I guess it's worth noting at this point, when I was ages 7-11 I had severe migraines almost everyday, I would vomit non-stop and the only thing that stopped it was a suppository... Then suddenly these stopped after puberty/chiropractor, not sure which may have helped- I had no underlying reason according to the tests I had got, MRI of brain, etc can't recall all the tests. I chalked these up to stress headaches due to living in a pretty intense home life.

I seem to wake up with energy but mid day I start drifting and conversations can become hard with people, I don't really have any aches or pains unless I lift weights, I may try tomorrow again and see what happens.

Generally, right now.. how I feel is post exercise flu symptoms, dark circles under eyes.. fatigue but I can fight it, I get cold and sometimes it feels like my heart does strange beats, i've actually had this for awhile..but my EKGs are always normal.

Hopefully, maybe it's just anxiety burnout or something
 

tandrsc

Well-Known Member
@Joshua - it sounds as though your anxiety is pulling you into a vicious cycle. If you can calm the anxiety a lot of the other symptoms may sort themselves out.

There are a couple of things you can try to balance your nervous system, I like vagus nerve stimulation with a TENS machine - see http://www.healthrising.org/forums/threads/preparing-tens-leads-to-use-in-vagus-nerve-stimulation-of-ear.2653/#post-10082

and @Remy has recently posted a nice relaxing way of balancing it - see http://www.healthrising.org/forums/threads/method-to-rebalance-autonomic-nervous-system-in-14-days.4332/

Try and make sure your vitamin D levels are high enough (it isn't what you take it's what your levels are that matter). I found this video very informative - it's a neurologist's experience of fixing most of her patients' symptoms by fixing their sleep, which she did by making sure their vitamin D was fixed - see http://www.healthrising.org/forums/media/how-to-fix-your-sleep-dr-stasha-gominak-youtube.521/

@Who Me? has already mentioned @Hip. Anxiety can be caused by inflammation which in turn can cause lots of other problems, he has posted about supplements that significantly helped his anxiety - see http://forums.phoenixrising.me/index.php?threads/completely-eliminated-my-severe-anxiety-symptoms-with-three-supplements.18369/

If you can find a relaxation technique that works for you, that can also help. I do five minutes every hour and I find it very helpful. I like this one - http://www.healthrising.org/forums/threads/do-you-meditate-tm-or-mf.4227/#post-17741

If you find exercise helpful but are worried about the after effects, consider something more gentle such as Tai Chi or Yoga. Here's an introduction - http://www.healthrising.org/forums/media/bodywork-tai-chi-qui-gong-yoga-colin-gates-youtube.528/

Lastly, have you looked at your diet? Diet can be a rabbit hole all by itself (vegan, paleo, low carb etc etc). Whatever you choose, every one agrees that it needs to be clean and nutritious - lots of veg and cut out the processed and sugary stuff.

Good luck!
 
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