Going To Start Treating For Chronic Fatigue & Fibromyalgia

EDIT: My doctor says that it will take a couple months before I know if the tonsillectomy really will help with my aches. I made this post when I was in a lot of pain in the middle of the night. Essentially what I was saying is that I cannot find an answer to why I hurt. I am going to focus on a restful lifestyle with healthy habits and see if it gets me anywhere now. I may pick a few select supplements, but not overuse them by any means. It's been 17 months of feeling like I have mono, and I'm ready to feel better. I've had 10,000+ dollars in labs just for this problem this year I think. I have been trying really hard, but after a long enough period you really just want to collapse for a while since you aren't getting anywhere positive except for ruling everything out.

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Well, twelve days out of my tonsillectomy and I am experiencing the same all over aches and pain as before. I am starting to think it is Chronic Faigure and Fibromyalgia. I have a book titled "Real Cause, Real Cure" by Jacob Teitelbaum. He is an MD who himself had CF and found a way out of it. His thoughts on the cause are as follows:

-Poor sleep and/or insomnia.
-Hormonal imbalances.
-Nutrition Deficiencies.
-Inactivity.
-Severe stress.

I won't go on in detail here, but I have seriously gone through too many doctors without answers. I am very willing to address these issues and see if in the long term I can retain my health.

Post Edited (Thoreau) : 12/30/2013 11:58:38 AM (GMT-7)

Oh.my.god.

Treat the effing ebv, staph and whatever hitched its way in.

PathogenKiller said...
Oh.my.god.

Treat the effing ebv, staph and whatever hitched its way in.

Path... this seems a bit snarky as a reply considering I've seen the infectious disease twice about the ebv and it shows no replicating virus at all. Staph is gone, too.

Hi Thoreau. Sorry to interrupt this thread but I have posted another thread today, "Question for Thoreau", asking about your experience with Cymbalta. If you aren't busy, could you please have a peak at the thread?

I found this link on a very supportive site, regarding improving these problems like I'm having...

http://www.cfidsselfhelp.org/library/acceptance-discipline-hope-a-story-recovery-cfids

This man essentially said it was up to him to get better by setting limitations, incorporating healthy activities, and being VERY patient.

It's definitely not my thing to step back from working really hard, but perhaps this is why I feel ill in the first place.

Thoreau:

Feel bad for you as you seem to be experiencing many of the same issues I faced at one time.  After my tonsillectomy, I had terrible pain and aches all over, in my opinion, from all the poison that went into my body when the tonsills were removed. 

If the aches and pains are fibro related, cymbalta should help. 

One thing that made a big difference for me was getting diagnosed in a sleep study lab with sleep apnea, restless leg syndrome and periodic limb movement disorder.  I had these really really bad and was waking up 300 times per hour.  Taking medicine for RLS, iron and other vitamins and using a cpap machine has helped me start to sleep better.  I didn't get diagnosed with the UC until many years later.  Sleeping pills only work temporarily. 

If you go for a sleep study, be sure to go to a good lab, so they have equipment which is current and sensitive enough to detect problems.  My first sudy showed I was constantly waking up, but couldn't show why.  It wasn't until ten years later that I got a proper study and diagnosis. 

This is true.

Fibro and CFS are blanket diagnoses given to patients by doctors when they can't tell what the hell is wrong with you. Been there, done that. This gives them the go ahead to load you up with useless treatments that don't address the root cause. So when an insurance company bills you for a treatment, they have an appropriate diagnostic code. Cymbalta is one example of a treatment that's approved for "fibromyalgia".

I'm a bit curious - were you on levaquin/cipro at any point in time in the past year? A percentage of people who were on antibiotic courses go on to develop fibro. There's emerging literature suggesting that mitochondrial dysfunction is at the root of all of it.

kazbern said...
Thoreau, are you taking vitamin D? Any other supplements? Is your UC in remission? When were you last scoped? What's your diet like?

Have you tried to revise your sleep habits to resolve the insomnia? If you need a sleeping pill to get a mere 4.5 hours/night it's no wonder you're tired all the time.

Are you getting any exercise? Stress management is much easier when you are physically active. Even if it's a yoga practice or a long walk 3-4 times a week, there's a lot of stress relief available to you just by moving your body. I know you've had a really hard year, but have you tried moving through the aches and pains to see what happens?

When someone with UC says they think they have fibro or CFS I always wonder if they're really in remission. IBD is a pernicious ****** and malnourishment alone can be the underlying cause of a lot of misery. Not to say that fibro and CFS don't occur, just that Occam's Razor makes me want to look harder at the UC.

I am not taking vitamin D. No supplements besides a multivitamin. I've tried lots of supplements and got burned out on them.

I haven't kept a regular exercise program, no. I usually would get sick soon after starting one, though not always. Just a couple days ago I bought a very nice used elliptical for my fiancee. It's in my family room now and I'll begin using it in another 1-2 weeks once I'm a bit better from the tonsillectomy.

My GI doctor is extremely happy with my colon right now. I was scoped 4-5 months ago and it was pristine.

I have a harder time getting to sleep than staying asleep usually. It has been more difficult after the tonsillectomy by far.

StealthGuardian said...
This is true.

Fibro and CFS are blanket diagnoses given to patients by doctors when they can't tell what the hell is wrong with you. Been there, done that. This gives them the go ahead to load you up with useless treatments that don't address the root cause. So when an insurance company bills you for a treatment, they have an appropriate diagnostic code. Cymbalta is one example of a treatment that's approved for "fibromyalgia".

I'm a bit curious - were you on levaquin/cipro at any point in time in the past year? A percentage of people who were on antibiotic courses go on to develop fibro. There's emerging literature suggesting that mitochondrial dysfunction is at the root of all of it.

I've been on levaquin, yes... but this was after the pains started. It actually seemed to help them for a while, though I then regressed fairly quickly.

I will look for info on the mitochondrial thing...

Thanks! :)

I have to say while I don't know the whole story with Thoreau specifically, I am really taken aback at the attitude in this post towards Fibro and CFS. For me, I was diagnosed by a rheumatologist using the trigger-point test (which is currently the diagnostic go-to, though there IS a blood test in existence) and elimination blood-work.

CFS/ME has a definitive blood test.

And yet, there seems to be these aren't "real" conditions. I was diagnosed with Fibro before I was ever looked at for UC. I can assure you that it is a real condition, and while some doctors don't really know how to treat it, the symptoms are just as real and debilitating as those of UC. And they are just as hard to "prove" at times.

Sorry, but I get really upset when people pull the whole "fibro isn't real" or "fibro is what doctors give you when they don't know what you have" BS.

Thoreau said...
A few more things...

-I had a rheumatologist test my muscles for any sign of inflammation and those came back okay.
-The infectious disease doctor tested for Lyme disease, Epstein-Barr, Cytomegalovirus... and came back okay. I even had him test for rocky mountain spotted fever and questioned about rheumatic fever. RMSF was negative, the other he said I'd be in serious condition if I had it I guess.

Cymbalta DID NOT help these pains unfortunately.

My GP today said that it will take a couple months or more before we know if the tonsillectomy really is going to help me feel better re: these pains.

Define "okay". some drs consider low titers Okay, i do not. did they test antistreptolysin o? thats what you want to know about for the strep. mycoplasma spp are responsible for many cfs issues.. look at garth nicholson's work. The levaquin helped a bit.. But i don't think levaquin is anything but bacteria static, maybe mildly bactericidal on many of the possible pathogens you might have.

You have had ebv before. This is why I bump it with you. If you got lucky enough in the game of test results to actually pop positive for something like ebv, ever.. Well, when you get sick Again, if they can't figure it out, you DEFINATELY go chasing after the usual old subjects.

It is true that it will take you a good couple months to recover from the tonsillectomy. I hope it helps you.

We're you tested close to a time you had taken abx

Im with Kaz and happy day on this one T-man!

You def deserve a break. I know you have a lot going on in your personal life but I think its time you invested in some "me time!"

Relax, get massages, go for a beautiful walk (when you can,) treat yourself like a God. Give yourself a break, man!

Hell, if its legal where you are, smoke some dope! I know some days when I am nauseous or in pain and all wound up... I wish it was legal here! :D

But really... you have a lot on your shoulders and its not good physically to have all this mental weighing down on you.

*insert hippy happy crap here*

You are a smart guy! But maybe too determined for your own good! ;)

Relax. :) :)

Ah, I see... Lyme Literate Medical Doctor. They tested for lyme for me though with negative results.