August 22, 2013 at 2:45 am #11895
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)
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)
brain fog and short term memory issues
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.
AJAugust 22, 2013 at 11:19 am #11919
Glad to hear about the meditation, I think that’s key. I know you were joking, but I was wondering if you actually practice at a Zen School?
If it were me, I would look into the thyroid again with a more complete panel to try and get a better idea of what’s going on – free t3, free t4, etc.
Gene/Immunology testing, specifically the HLA-B27 gene and see a rheumatologist about the hip pain. There are a few types of chronic arthritis that you could be at risk for (anklyosking spondylitis) sounds bad but if affects people to varying degrees – don’t flip yourself out about it, just worth checking into. The fatigue and pelvic floor pain made me think of it, and the stories of going a long time without diagnosis. You might not have any real pronounced structural damage that they picked up on.
Can’t speak to the effect of just ETF. Did you go through a period of severe restriction that would have damaged your metabolism? I certainly wouldn’t restrict, unless you discover some allergy or sensitivity but keep overall calories adequate or on the higher end.
keep up with the meditation. Stay open to possibilities, but don’t catastrophize. You’ve dealt with it for 9 years thus far, so chances are it’s not killing you any faster than the rest of us ;).
I also really like Kabat-Zinn’s work for the meditation aspect. Even coupled with the Zen.August 22, 2013 at 12:27 pm #11926
Hi Aj. I kind of needed to here your story this morning. I’m 43 and was laying in bed contemplating the fact that I have spent the best years of my life being that chronically sick guy. I have had all of the eye rolling by doctors. Not being able to get past the first two things on my ailment list. Being told there is nothing wrong with me etc. My work life has shrunk to almost nothing, my personal life has shrunk to almost nothing. My ability to help my family and others is pathetic etc. Most of my problem started out as chronic psoriasis but something has been tagging along with it. Whenever I get sick and fatigued my psoriasis gets worse. In an effort to heal my psoriasis I have tried many restrictive diets which just made things worse. I am getting my baseline energy back up a bit with Matt’s approach. My temps were just like yours. Morning temps around 95-96 and high temps of 97.1. I also got the same story from docs, ” oh that’s normal, nothing to worry about, temps don’t mean a thing”. I can’t say for sure if the 180 degree way will help in the long run. I may just wind up fat and covered in psoriasis but at least with some energy, instead of lean and covered in psoriasis with no energy. Oh well only time will tell. Life can can be a real bitch and seem pretty unfair at times. In the end we are pretty much on our own. Healthy people generally have little to no empathy for the sick, especially doctors. I hope you find some answers.August 22, 2013 at 2:14 pm #11931
Hey Rodzila and Jdubs. Thanks for the replies.
Thanks, I will look into the anklyosing spondylitis. As for the zen like master, yeah I was joking. I mainly just do “watching the breath” meditations and mindfulness meditations. On a good day I’ll do it in the am and pm. 30-45 min each. Like I said before, and this is just an intuitive thing, I can calm my body down to a certain extent but it seems to hit the baseline of arousal that’s still way above a normal level. It’s like I’m still missing something that’s really stressing me. As far as the diet, I never really restricted myself before getting sick. It was tough to meet all my caloric needs but I definitely ate a lot. It’s my understanding though that any stress on the body can impair the metabolism. I know my metabolism is pretty crappy righ now because of the symptoms and of course the body temperatures. So restrictive dieting might not be what got me sick or my metabolism out of whack but ETF could be useful in helping me recover it.
When I first got sick in college I had a ton of “stressors” at once basically. I had a pretty bad head injury in practice where I was knocked out and even had a seizure. All mri’s were ok. No structural damage or bleeding or anything. But a big shock to my body I would imagine. Around the same time I got sick pretty much back to back with a couple stomach viruses. If u add in all the fun stresses of college lifestyle (poor sleep, drinking, shorty nutrition etc), and I had some psychological/mental stress going on at the same time. In my theory it was sort of the perfect storm. I started really showing symptoms a few months after all this was going on. I just haven’t been able to remove enough stressors to get my body back to normal.
I’m definitely going to do more conclusive thyroid labs next time I go to my Dr. Well see what those say. I guess I’m just wondering if my metabolism is something I can fix on my own naturally or if it is just too shot by now and needs replacement hormones by now.
I hear yah man. This chronic stuff can really just consume you some days mentally/emotionally. I know I really have ups and downs even throughout just a single day. I know it sounds corny but the days I feel Better mentally about everything is when I can focus on the idea that I will get better and I will come out of it a much better person. I hope that doesn’t piss you off, I know hearing it from others has pissed me off before especially when I’m having a bad day. But hang in there man. Try to seek out and research people that have recovered from chronic psoriasis and the like. Let me know what other things you are doing in terms of treatment, if any. In my experience, these chronic conditions and those that have recovered from them, it’s all about removing as much roadblocks (stressors) from the body and allowing it to do what it does naturally and heal itself. There’s a lot of other things you could do in addition to ETF to help this process. Anyway you can message me on here, I don’t know if they have PM on here.
Anyways, thanks again guys.August 22, 2013 at 8:58 pm #11945
I can relate in so many ways, and the closer I get to figuring stuff out – the more I realize there really is no endpoint. Even if you or I have spontaneous remission tomorrow – another one of life’s stressors will come up..that’s just the way it works :)
I’m certainly not recommending that you don’t take practical measures to improve the way you feel, I do the same. But I was so happy to hear about the meditation practice – and would encourage you to continue that. Meditation never rid me of my health ailments, but it allowed me to live with them as I pursued better health. It really allowed me to live my life, which I realized I hadn’t been doing even before my mystery symptoms came about. Of all the doctors, therapies, etc. I believe Mindfulness Based Stress Reduction and a continuation of practice has been the most beneficial thing for my well being – and it extends beyond just physical.
Best of luck.August 29, 2013 at 1:58 pm #12203
sorry to hear you’re having such a hard time. i’ve been suffering with pretty debilitating adrenal fatigue the past couple of years but have recently started practicing Buteyko breathing and have seen improvements already.
I recommend checking out the testimonials for it online, i’ve read plenty about it and have literally never seen one account of it “not working” (provided you put in the hard work and get to the correct biochemical state). It’s not easy by any means but i’ve only experienced and read about very positive results from it.
Briefly, it’s to do with the level of co2 and oxygen in the body. Talk a normal breath in and normal breath out then pinch your nose, then time how long it takes til you feel the FIRST NEED FOR AIR, you usually notice this as a subtle movement in the diaphragm. This time is called your Control Pause.
anything sub 10s is very poor, at about 20s+ you’ll feel better and then 40s+ is a very high state of health. By the way, these times are based on your CP first thing in the morning (straight after waking up) as this is when your breathing is heaviest and so this is your base/true level of body oxygenation. Any time you take sat in your chair is going to be at least a few seconds longer than your Morning Control Pause.
good luck!August 29, 2013 at 8:56 pm #12210
Thanks for the comment. Yeah I remember trying that for a little while (like 3 months maybe) pretty consistently and didn’t see much change in any of my symptoms. I even dl one of those DIY guides and built a little breathing device. I certainly agree that improper breathing (mouth breathing, hyperventilating) can be a factor in ill health. I know a majority of the toxins in our body are expelled through expiration, reason enough to breath properly. Anyways I did try it for a while, I probably should give it another chance just to cross something else off the list that wouldn’t hurt me. but, like I said, it didn’t do much for me before. Thanks for the response though.
I have a question though. Has anyone heard of Wilson’s Temperature syndrome? If so what are your thoughts and has anyone actually been treated by any of these doctors?August 30, 2013 at 2:30 am #12214
“28 y/o male. 6’0″ about 190lbs”
I don’t think that 3,000kcal is aggressive, or even necessarily re-feeding. That might be maintenance if you’re activity is very low. The initial weight gain likely has a lot to do with glycogen storage. You might need a good bit more food. The recs from Diet Recovery 2 say that a male should take an estimated body weight where they would be very lean and multiply that by 23 – let’s hypothesize that you might weigh about 175 if you we’re a true 10% (which is very lean and very different than what most people claim to be 10%)
175×23 = 4025…minimum.
Even 150 x 23 = 3450
I would personally try to get the most nutritional value I could out of the foods I was eating.
TSH isn’t very useful. Thyroid tests can help – but even those won’t always paint an accurate picture of what’s going on. I would continue with the calories, continue your own monitoring, and see about having a complete thyroid panel done.September 1, 2013 at 6:48 pm #12292
Thanks for the reply Rodzilla,
Yeah I was kind of estimating with the 3,000 calories there. My goal was to incrementally step up the calories week by week instead of just starting at like 4500 kcals. Over the totality of being sick I haven’t really dieted or restricted calories much until the last couple of years. I messed around with different stupid diets and limiting carbs or total calories. On non workout days I was eating around 1600 calories. I know pretty low. So as for even just 3,000 cals right now that’s still a pretty good jump. And I’ve definitely put on fat. Definitively refilled my glycogen stores but definitely put on fat too. I will definitely work my way up to around that calorie mark, and with a good substantial amount being good starchy carbs (in the recent past I was on the high protein, relatively low carb kick, which I know was pretty bad for my metabolism). I just wonder how much damn fat I’m going to put on because in the past few years my metabolism has been so shitty that I would gain fat even if I just smelled a high carb/calorie meal. Hopefully it evens out soon enough.
As for the TSH, yeah I know it’s difficult to just go off of the test. Way more factors involved. And way more factors involved than just the thyroid in my opinion. Anyways, my new dr just ordered a full metabolic panel so well see what those come out to.
And again, has anyone heard anything about this Wilson’s temperature syndrome? It’s basically saying the same thing as here, that low body temperatures are indicative of a low metabolism and a whole slue of other health problems. Apparently, these physicians treat it with T3 I believe. But they claim its only temporary, until the metabolism can get sort of “unstuck”. I think they try lifestyle interventions like rest, diet, etc before going with the drugs. Anyways, I’d love to hear any feedback from anyone who knows anything about it. Good or bad. Thanks.September 2, 2013 at 10:15 pm #12313
Hi there, just thought I would offer a suggestion for the chronic pelvic pain. You could look into Neurokinetic therapy, to determine if your pelvic floor muscles are over active or under active. They could be compensating for other weaker structures in your body..
Here is a blog post on the pelvic floor and how it can be assessed with NKT
Best wishes with your recovery.
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