Without (mild) Exercise - Things get Bad For Me

Information about how to manage or reduce the severity of BFS symptoms

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Without (mild) Exercise - Things get Bad For Me

Postby BFSBurger on April 7th, 2015, 11:08 pm

Is anyone else here in a similar situation? I started with typical BFS roughly 3 years ago. I embarked on drastic, all-encompassing lifestyle changes that enabled me to whittle my symptoms down to basically zero. It took about a year (with no cheating) to fully accomplish. Exercise was a big part of the recovery. I have fallen off the wagon a few times now and the last time was New Years. I went hard. And I am now 4 months in to trying to get myself back to symptom-free.

There is something very strange I am noticing about my symptoms now though. I barely feel a twitch anymore. But it was always more than just twitching for me. I always had other symptoms:

If I do not exercise for a week, I am in a seriously bad place. My ability to sleep begins to falter because my cortisol system seems to change. I wake up after only 6 hours of sleep consistently, which sets me into a very bad place (drained and tired) all day. I get painful aching glands in my groin and armpits. My muscles may ache, and more recently my lungs will grow more and more inflamed. Dry cough and irritation. Cuts on my skin do not heal for weeks, and I get numerous clogged glands of various types (eyelid glands, oil glands, salivary glands, etc).

Its so weird to me. And here's why:

If I simply exercise, the whole system including all symptoms seems to just ... calm down.

Painful glands in armpits and groin seem to drain and fade away within 1-3 days. With vigorous aerobic exercise and deep heavy breathing, my lungs will seem to just "calm down" as well, and that inflamed feeling will fade away too. Sleep improves because systemic inflammation levels have now been forcibly calmed by exercise. Cuts heal, glands drain and stop being 'red'. Healing ensues.

Exercise is the number 1 way to reduce systemic inflammation, and calm inflammatory immune activity. Its been proven numerous times.

I know I have a recent CMV infection. Well sort of recent. Three years ago this all started. Yet I still have high NK Cell activity, and high CD8. This is consistent with CMV disease. Or Chronic CMV reactivation. And CMV is well known to cause inflammation in tissues throughout the body. But not in people with normal immune systems.

I have come to the conclusion that I absolutely *must* exercise and get rest (and avoid gluten etc) to keep my inflammation levels down. If I do this, all is well. If I don't, within a week, I wake up feeling like my whole body is seriously under attack.

I simply have never heard of such a "disease" before and can't really figure out what it could be. This seems to be an immune inflammatory condition. Which brings me back to my main question right now: Is my immune system inflamed because its fighting something important, or because its gone haywire?

-B-
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Without (mild) Exercise - Things get Bad For Me

Postby SecretAgentMan on April 8th, 2015, 6:31 pm

We have some interesting parallels BFSBurger. As you know I responded favorably to dietary changes and resolved my BFS through Leaky Gut Syndrome treatment along with other lifestyle changes. I did things a little differently than most and gave the allergy elimination techniques a chance. As a result I have enjoyed being BFS free and was able to return to a normal diet over the last 4 years or so. I've been back on gluten, dairy, nightshades, and everything else that would cause me to develop crazy symptoms and twitching back in 2010. Granted I was a changed man and much more aware of the impacts of diet so I would say I ate much healthier over the last 4 years. I moderated foods like gluten, sugar, dairy, etc. We started eating a ton more of fresh organic fruits and vegetables, hormone and anti-biotic free meats, etc.

Your post really caught my attention though and this is where the strange parallels come in. Sometime around 6 to 9 months ago I began experiencing a new symptom that at first was very minor but it slowly got worse and got more of my attention. You mentioned the swollen glands. I am getting that too. At first supplements were able to keep it at bay but eventually even those were not as effective. I finally was able to link it to my diet. I have gone back off gluten, dairy, and nightshades, and sugar and that has greatly improved my situation. I would say 90%. This time it is more perplexing though because I am not testing positive for having an allergic reaction to these foods as I did back in 2010. Basically they are just causing me to have an inflammatory reaction. I'm working with my doc to get to the bottom of it but for now I am just managing it through diet and supplements. Kind of frustrating after having been normal again for 4 years, but at least this time this is my only symptom. Still free of any neurological issues thank goodness.

The only area that I get tenderness is on the right side in the groin area. No armpits like you. My doc says it is my lymphatic system. I just find it interesting that you are experiencing something very similar. I have not thought to consider working out. I really don't work out much. I do pushups and simple leg squats every other day but that is it other than chasing my little girls around. What kind of workout do you do? Cardio/running? I'd like to hear more about your regimen. Perhaps I will get back into working out and see if that helps with the minor 10% that remains.

This also begs the question... I have been normal again for 4 years and you have been free of neurological symptoms for 2. Why are both of us having similar new issues pop up around the same time? If I am not mistaken UFGatorGuy was also complaining of swollen lymph nodes. I'd have to go back and check. I realize we have different philosophies on medicine but I would still like to collaborate on this. Perhaps there is something we can learn from each other with these new symptoms. Thanks for the post.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby BFSBurger on April 10th, 2015, 8:11 pm

Crazy.

I mean it was just last week that I was walking around in pain because my right groin was hurting when I would walk, or move my leg in a certain direction (usually pulling it sideways inward). It only lasts a day or two - especially if I buckle down and literally go "work it out". It hurts a tiny bit during the workout, but I press through it. The next day - you of course feel some soreness from the workout itself, and it begins to mask the aching. By day 2, the aching itself has noticeably subsided, and by day 3 its gone.

My very first days of BFS I had a very swollen (not just achy) right groin gland. Before all the twitching started.

You and I are not the only ones. As you know, 7 months prior to my BFS starting, I was put on AZT (zidovidune). You may be familiar with this drug from the movie "Dallas Buyers Club". If you haven't seen it yet, I would encourage you to. It really goes in to how dangerous and poisonous this medication is, and all the people who died from taking it. Because of this, I and a few others who were put on HIV Post Exposure Prophylaxis have found eachother online. All of them ended up with BFS. One ended up with Sarcoidosis. A few others ended up with Guillane Barre Syndrome. But all of them went through a period of neurological symptoms and twitching.

My point? These folks also deal with these strange gland "aches". None of us can feel the glands swollen. But movement hurts. It feels like a "pulling" and "pinching" feeling when you move. At first it was my armpits and ribcage. Now the pulling/pinching is in the groin (if it happens at all). My armpits will flare up a little bit from time to time, but nothing painful. Mostly makes me itch my armpits a lot to relieve the weird sensation Im having.

This type of reaction absolutely comes on after I "fall off the wagon" diet-wise. Especially sugar. I have a major sweet tooth. I can't go very long without oreos, or chocolate chip cookies, or ice cream, or maybe a wendy's meal (with a soda). I am fine with one-off events. But if I fall off the wagon, the inflammation throughout my body increases for sure. I read an article last week about inflammation and exercise. Studies were done showing that mild exercise (which must include both weights and cardio) reduced inflammatory immune activity by 30% in otherwise obese, sedentary people. And these folks barely worked out. We're talking maybe some walking. Maybe some pink dumbbells. Maybe some minor exertion. 30% reduction in various "IL" immune markers that were associated with inflammation.

Exercise works. I can't live without it now.

My eyes have been on Lymphoma lately because of this. But I know at least 2 people who were diagnosed with Lymphoma who both beat it completely (disease free for 10+ years) with dietary changes and exercise alone. It makes me feel like we (or just I) have a runaway inflammatory immune condition. I truly truly truly feel on a day by day , minute by minute basis that I need to constantly knock down my immune system a bit with constructive stressors like exercise.

If I don't, I can honestly feel it creeping up on me, throughout my whole body. Its a very unnerving, scary, and weird feeling. I feel it the worst when I first wake up in the morning and im still laying in bed. I wouldn't say its a crawling sensation. But its moreso a strange vibrating/tingling/inflammation feeling that saturates all the muscles in my body. Mind you - its just subtle. Its not like im sitting there vibrating or anything. Its the most subtle, annoying feeling of whole body "agitation". That's a good word for it. I feel a bone-deep agitation throughout my whole body. And the only way to get rid of it, is to literally "Flex" it out.

So my workout then. In summary: exert every muscle group with isolated weights/machines. Then get on the treadmill and exert your lungs, diaphragm, heart, and subsequently, your brain.

With the muscle groups, use the weight that is slightly difficult for you to hit 10 with. Only slightly. You can totally do 10, but it takes a bit of effort. Only go higher in subsequent workout days.

1) Dumbbell fly's (shoulder workout, bringing them out to the sides)
2) Dumbbell fronts (shoulder workout, bringing them out in front of you alternating arms)
3) Dumbbell press (shoulder workout, pushing dumbbells above your head, palms forward)

4) Bench press (chest)
5) Incline press (upper chest)
6) Machine fly's (pulls arms together in front, squeezing chest muscles together)

7) That machine where you sit and push your shins up, working out your front thighs
8) That machine where you are on your stomach, doing the same thing working out your rear thighs

9) The machine where you pull the bar down while sitting, works your whole back
10) The machine where you're sitting upright and pulling back (like rowing)
11) Situps of some kind

I also do something I saw on P90x ... which is lifting my knees out to the side, hitting my hands which are hovering about waist high. This stretches the lymps in the groin pretty good. Then doing the same with knees coming up in front of me too. maybe 10 or 20 times. Don't overdo it.

Then I get on the treadmill. Incline 5.0 ... speed 3.0 .... and I just walk. Usually I only do 5 or 10 minutes. Sometimes i do 5 minutes and run for a minute (speed 5.0), then walk for a minute, etc.
The key here is breathing as deep as possible and exhaling deliberately the whole time. This is *Huuuuuge* for calming my lungs, and whole chest cavity, which often feels agitated and inflamed.

Then I rest. I rest as long as my body tells me to rest. 1 day, 2 days, whatever. I can always feel it creeping up on me again and I know when I need to work out again. I try not to let it get that far. Usually resting 1 to 2 full days is all I need.

As the iterations continue, I can increase weight. And as I get more confident, I begin to do "Chest Day" then "Back Day" ... on these days I will do max weight 7 reps ... and do four sets on each exercise. So really working out the muscle groups. Then the next week I will switch back to the above-described sort of "Circuit" workout, doing whole body. I find benefits health-wise from doing both, alternating.

The real key is to make sure I get enough sleep. Since my New Years debauchery, my sleep disorder has returned, and I always wake up at 5-6am after only 6 hours of sleep. This leaves me exhausted all day, and inflammation goes up big time. I have found that if I push it harder on the treadmill, I can make my body tired (in a good way) enough to get some better sleep.

Again, without the exercise, I can't even function sleep-wise. It just seems to fix everything. All the time. I wish I knew what was happening. .... inside me.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Without (mild) Exercise - Things get Bad For Me

Postby SecretAgentMan on April 11th, 2015, 8:58 am

Thanks for all the good info. I used to work out regularly in college. I was never able to keep a routine going after graduation though. Early on I had a few good runs where I would do pretty good for a few months but then I would fall off for a few months. I went off and on for a few years and then just stopped. Basically I do simple stuff like walking breaks at work, push ups and leg squats at home with no weights, and chasing my 2 little girls around. I have always been blessed with high metabolism so even when I didn't eat the greatest I never gained any weight. Actually I would lose weight if I didn't work out. Anyway, perhaps this will be a good swift kick to try and start back up again to see if it helps. Either way it is a good thing to do. If it helps with the lymphatic system inflammation then it will be a win/win.

My doc has me on two supplements that have been very helpful. Both are specifically for helping relieve the burden on the lymphatic system. Both are also good at killing of candida too interestingly. My old nemesis from the leaky gut experience. It really wouldn't surprise me if that was a contributing factor to the new issues. The first supplement I am on is called Lauricidin and the second is called Biocidin (capsules). If I stop taking these within 2 days the discomfort gets very noticeable. I have not yet had any armpit lymph node problems. It has only been in the right side of the groin area. According to my doc the lymphatic system is being triggered by inflammation in the large intestine/colon. His testing further indicates that the inflammation in the large intestine/colon has an emotional root cause. I have been under a lot of stress (self inflicted I must admit) regarding my work lately. I am in a bit of a crisis about where to go from where I am in regards to my career. It has been a constant battle between head and heart about what I want to do vs. what I should do and of course all of this is being evaluated against realistic opportunities of what I can do. I realize I am putting myself through it but yet I am not sure how to not care or let it impact me the way that it is. All of this makes sense with the timing of how things have played out.

It really isn't anything new that emotional stress can manifest physical illness given enough time. It is often hard for us to reflect to see the causal relationship though because we are so used to looking for physical things causing physical things. I am attempting to make changes to the way I handle this and keep things in perspective, especially now that I am getting an indication of the connection. I was going through a hell of an emotional mess when I had BFS back in 2010 as well. I was unemployed and expecting my first child. I think that my nervous system was the weak link back then and this time around it is my lymphatic system. Before it was small intestine and this time it is the large intestine/colon. Interestingly different organs are associated with different emotional triggers. I believe the lungs are grief.

I'm going to pursue this using the same methods that helped me with BFS back a few years ago. So far the things that my doc has been doing have been showing me we're on the right track. The supplements and treatments provide relief. The answers we are digging up are making sense. Now I'm just working to make the changes necessary, just like last time. Perhaps the exercise will help provide additional relief and speed up the recovery process even more. Thanks again.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby BFSBurger on April 17th, 2015, 8:04 pm

Yeah Lauridicin has been on my short-list of supplements (i keep a very short list - i dont like to over supplement) for the last few years. Ever since I found out I had active CMV, I have been taking it to help fight that. I can't say whether it helps or hurts. Maybe I should try a trial where I am on it for a solid 2 weeks then off it for a solid 2 weeks. See if there's any difference.

I am now dealing with an inflammatory eye condition of some sort, discharge, burning, pain.... burning lips ... rosacea all over my face (also inflammation related), and have been dealing with inflamed lungs for the last 6 weeks or so. Mucoseles (also inflammation), and now getting strange bumps that itch and burn in various part of my body (small hives?).

Zero help from a "traditional" doctor who dismissed all of it. Idiots. What is the point of their existence?

I can't really exercise right now because I seem to have transitioned to a phase where its running me down too much. Its crazy how these things constantly evolve. If it isn't one thing, its another. As soon as one thing goes away, something else appears. Almost to the day. Its ridiculous.

I never should have gone out on New Years. Seriously.
How I resolved my BFS within 1 year of onset:

viewtopic.php?f=3&t=19128
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Re: Without (mild) Exercise - Things get Bad For Me

Postby SecretAgentMan on April 18th, 2015, 6:28 pm

BFSBurger wrote:Zero help from a "traditional" doctor who dismissed all of it. Idiots. What is the point of their existence?


Although this is comedy, it probably holds quite a bit of truth in answering that question. John Oliver on pharmaceuticals and doctors: https://www.youtube.com/watch?v=YQZ2UeOTO3I

You might want to check out that Biocidin. It is like a potent version of Lauricidin. Sorry to hear about your additional issues going on. I have been making some progress and have been able to resume eating nightshades and dairy products. I'm still staying off gluten for now.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby Jocruz on April 22nd, 2015, 10:17 am

Wow, BFS Burger... I've been doing great for months, just when I got comfortable, (slacked on diet/workouts/sleep) everything you've described has happened to me. Random pains in my body, twitching has returned, and most of all swollen glands. I have them in my armpits, and throat. They are irritated, and really have had me worried about leukemia. Glad to know I'm not alone. I will clean up my diet/workouts/sleep over the course of the next week and then come and check back in with you and tell you how it goes.

BTW, I'm 25 years old. Seems like a common age for this mysterious disorder.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby SecretAgentMan on April 22nd, 2015, 6:28 pm

I have been making some good progress over the last two weeks with some new practices. I have been able to integrate nightshade vegetables and dairy back into my diet and the inflammation is staying at bay. I believe I can eat gluten again too, but I have noticed such an improvement in how I feel just energy wise that I think I am going to stay off of it for now. We'll see how it goes, but so far I am very encouraged.

I just find the glands swelling interesting since others are experiencing it as well. To my knowledge this was never a common symptom before. If it was, it was not mentioned much.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby Jocruz on April 23rd, 2015, 10:26 am

Someone else acually just posted about swollen lymph nodes in the support group forum. I find it very ironic that we are all getting this at the same time.
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Re: Without (mild) Exercise - Things get Bad For Me

Postby SecretAgentMan on May 3rd, 2015, 8:36 am

I just wanted to post a follow on update. I have been continuing to improve. I can live a pretty much normal life without any groin gland discomfort. I am eating everything except gluten again. I went out to dinner last night with a friend and we went to a mexican place. I asked about what they had that was gluten free and the staff was obviously not prepared to answer knowledgeably. Most everything they had was corn based, but still wheat flour is commonly used as well. I got what I thought was the safest bet, but I believe I ate some gluten. This morning I woke up with the first small amount of groin gland discomfort in probably a month. It was very minor, but I think it is an indication that I am doing the right thing in staying off of gluten. It isn't life or death if I slip up, but I'll do my best to avoid these reactions. Also, I never did end up doing anything additional exercise wise. So far so good.
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Re: Without (mild) Exercise - Things get Bad For Me

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