Chronic Fatigue Syndrome and Chronic Pain

Hi everyone. I’m new to the forum and somewhat new to this 180 degree stuff as I just finished Matt’s book Diet Recovery 2. Anyways here is my story and I guess I’m just looking for any insights or advice from anyone who thinks they can help me out. I’ll try to make my really long story somewhat shorter.

I’ve had Chronic Fatigue Syndrome and Chronic Pelvic Pain now for about 9 years. Yep 9 years (I retyped it so you would know it wasn’t a typo). I only just got “diagnosed” with actual CFS in 2011 so for the first handful of years I just bounced from Dr. to Dr. with each one saying nothing was wrong or sorry they couldn’t find anything through their routine labs. Although the diagnosis of CFS is only comforting for about 5 minutes until you realize it’s sort of a BS umbrella type diagnosis because there isn’t one definable cause of it. It’s sort of a nice label they give you for not knowing why you feel like shit. Also, I’m a 28 y/o male. 6’0″ about 190lbs. Symptoms started when I was about 19. I played football at a small College in Ohio at the time.

So my main symptoms are the Chronic Fatigue and Chronic Pelvic Pain (last place you want to have pain). They both started around the same time and they vary in degree of intensity mostly based on the amount of stress I feel at any given time (like not sleeping well, missing a meal, mental/emotional stress etc.) There’s also this strange sort of reverse correlation thing where if my pain is pretty high than my fatigue is lower and if my fatigue is high my pain seems to be a bit lower. Neither symptom ever goes away completely. Those are my main symptoms but I have a host of other really random symptoms that have come along for the ride all these years:

heart arrythmias and palpitations
eczema on my hands
chronic sinusitis and post nasal drip (yummy)
hand tremors (especially in times of stress, never happened before I was sick though)
dry eyes
dry mouth
insomnia (can also sleep like 12 hours and feel like I didn’t sleep at all)
circadian rythym all whacked out (adrenaline rush at night and really difficult waking up early am)
digestion issues
brain fog and short term memory issues
anxiety
depression (although I think this is a normal reaction considering my current state)

I think that’s all, if not most of them. In my early days I can remember getting half way down that list in the Dr.’s office before he/she started rolling there eyes. I was never really a sick kid and definitely never worried about anything health related before all this so it’s definitely hard to be reduced to the chronically sick guy.

In terms of where I’m at now and what treatments I’ve done I’ve pretty much done everything it seems. From nutrition and diets to immune and hormonal support. Mental and emotional work/therapy as well as regular relaxation/meditation. Also severely reducing work to only a few hours a day (just enough to pay the medical bills). If I listed every little therapy or alternative treatment you would probably fall asleep half way through reading it but suffice it to say I’ve probably already done it (although I am still open to suggestions).

In terms of the pelvic pain I’ve ruled out anything infectious, and no injuries or structural damage (thank goodness). Through all the clinics and health care specialists and research I’ve done it seems to be severe muscular tension in the muscles in my pelvic floor. Picture a balled up fist down there. Most of the time just feels really tight and achy, with bouts of pretty bad pain. Most of the treatments for this type of muscular tension/pain is forms of relaxation/meditation. The pain really is tied in with my nervous system and like i said gets worse with stress and slightly better with relaxation/meditation. But even with all the rest/relaxation/meditation i do (been doing it pretty consistently for almost 2 years now, on my way to becoming somewhat of a zen master) it never really gets better beyond a certain point. There’s sort of a baseline that doesn’t seem to budge. There’s also some treatment protocols involving working with repressed emotions and chronic pain. If any of you are familiar with the work of Dr. John Sarno you might understand, if not you probably think that sounds crazy (I know I did at first). Anyways, all that treatment basically brings me to that baseline of still a good amount of pain and won’t budge past it.

After all the research and Health Care Professionals I’ve worked with, the best explanation I can find for these Chronic Fatigue and Chronic Pain Syndromes (which seem to go hand in hand with each other) is that is basically an overload theory. The body has been burdened with too many stressors at once, whether they be nutritional, infectious, lifestyle, environmental, or psychological stressors. Usually a little of all of the above. Most treatment plans (and most successful recoveries) work from the angle of removing as many stressors from the body that you can and allow the body to heal and recover. I believe in this overall treatment philosophy, I guess I just haven’t removed enough stressors and feel I am still missing something big.

Anyways, that was my abbreviated history. I recently read Diet Recovery 2 and a lot of it made sense. I know most of my symptoms, if you were to type them into Google, you would probably come up with hypothyroidism or low metabolism pretty quick. Throughout all the labs I’ve had, my thyroid levels seemed to be within normal ranges (although I did have an elevated TSH twice, but my reverse t3 and t4 came up normal). I know now that I could test normal and still be showing symptoms, as I clearly am. I also had never heard about tracking body temperature as a measure of metabolic output. Every time I would go to the Dr. and they would do my vitals my temperature was always in the 96 degree F range. I actually remember one nurse saying ohh that’s good, you don’t have any infection or anything. No Dr. ever brought it up and I never gave it a thought.

In terms of using calories and refeeds to bring the metabolism up, I had never heard of that before. Every diet I have ever done to see if it would help me out health wise was all about restriction (Paleo, vegan, juicing, intermittent fasting etc…). Although I don’t think dieting was what got me sick in the first place, or was a stressor that contributed to wrecking my metabolism. When I first got sick I was a freshman in College playing football and I definitely wasn’t restricting carbs or calories or anything like that. From what i can remember I just ate to satiety, which was a lot. I was happy to see in Matt’s book that he says all types of stress can lead to the impairment of your metabolism, not just restrictive dieting. It’s nice to not hear the reductionist viewpoints on what causes health problems that i have read too many times before. The ironic thing is that I’ve been on diets restricting calories and carbs in the recent past and i’ve definitely felt worse because of them. Sort of dug the hole deeper. One other random symptom I’ve noticed in the years ive been sick is an insane appetite. I guess in simple terms it was just my bodies intuitive way of trying to keep up with the increased metabolic demands all the other stressors were placing on it.

Holy crap I’m rambling now. Sorry. And ive forgotten exactly what questions I wanted to ask.

Ive been doing an aggressive refeed now for about 2 weeks now. Probably eating around 3000 cals. I was eating anywhere from 1500-2000 cals before. Pretty low. Trying to get lots of the 4 S’s. I’ve allready gained about 5#.

I guess my main questions are

1) if anyone on the forum has had experience with CFS or chronic pain and benefiting from the refeeds and getting there metabolism back up to “normal”. And do the symptoms fade when your metabolism gets working well again? I think the mindset is to get the metabolism back up to normal and see where your health is at then.

2) My temperatures seem to be all over the place and not necessarily always responding to every high sugar/salt/fat meal I ingest. My first morning temperature was 95.7 F orally! They’ve been consistently in the mid 96 range now most mornings and the highest I’ve been able to get was 97.3 F one time. My Temperatures seem to be slightly higher in the pm but it depends. And by higher I mean like 97.0 so not really high. I guess my question for this one is should I just be eating just high glycemic carbs and lots of sugar/salt for every meal (pancakes, burgers, milkshakes, ice cream) since my temps are still so low? Or am I trying to fit some “nutritious” stuff in there too?

3.) Is my metabolism officially working properly again when I’m consistently in the 98’s? 99’s? I guess, how long do I keep going with the refeed to try and bring the metabolism up before having to go the hormone replacement route (I know a lot of CFS patients are on replacements but I would really not want to do this if i don’t have to)

4.) any other tips or suggestions anyone else can give me to raise my metabolism naturally? Any other treatments I may not have heard of for CFS and chronic pain?

Sorry for making this such a long read. Ill spare you the sob story mainly because I can’t really articulate what it’s been like to be living like this for the past 9 years. Most of my twenty’s. It’s been hell and I could use a break. Any help or tip would be greatly appreciated.

Thanks,
AJ