Introduction

Welcome to Shaking Off The Chains!

My name is Adam, and many of you reading this are already familiar with me. If not, check out the “About Me” page I wrote last year.

The goal of this blog for the time being is to have all the things I write about ME/CFS in one place. Over the past couple of years, my writing has been all over the place: Facebook posts, direct messages to friends, Reddit posts, verbal rants, etc. I’ve written in this blog a few times but I’ve never kept up with it consistently. Over time I gradually started to receive a lot of messages, usually on Reddit, from people that found something I wrote and identified with it. Many of these people are where I was a few years ago and want to get to where I’m at now.


Over time this blog will evolve to include new features to become modernized. I need to add all the usual stuff like social media charms and an e-mail list. Right now though, I just need to make this public and get moving with it.

To provide context for some of the things I’ll be writing about, I’ll explain my life.

At the moment, I’m active about 4-5 days per week. By active I mean I’m up and out of bed, dressed, and can function both physically and mentally. I have enough energy to get through the day, socialize, and achieve my goals. I’m limited to 4-5 days because of the way these meds work: Adderall gives me physical energy and mental clarity but like all stimulants, tolerance builds fast and if I took it every day it would stop working in no time. The other issue is that a powerful stimulant requires a powerful sedative at the end of the day, and if I took Temazepam every day it would also stop working and worse, I would have to go through benzodiazepine withdrawal to get off of it. That doesn’t sound too fun.

I made a lot of progress in 2017. First, I improved my sleep apnea symptoms through weight loss. This was a big obstacle, making it impossible to be active for more than a couple days in a row due to the lack of sleep. Although these symptoms have significantly improved, some still persist. Next, I identified the cause and treatment of the severe nausea and vomiting that I developed in the middle of the year. I suspected it to be related to the motor tics and tensing of muscles that can occur due to stimulant use, it was wrenching my gut.

2017 also brought an achievement I believed to be impossible: I received my first paycheck! I’ve been able to do a lot of fun things over the past couple of years, but working in any capacity remained an impossible dream. It’s easy to do things here and there when I can plan ahead and ensure I’ve had enough rest but work requires predictable, consistent good health for the vast majority of days in the week. Since my early 20s, I’ve visited college career centers, disability services, and had several appointments with Mass Rehab which lead nowhere. The work I found wasn’t the result of official aid but from the social circle and connections I had built up.

Again, it was only four years ago that I could barely get out of bed, had been years since I spoke to any of my friends, and I found no enjoyment in life. I hope you enjoy following along my journey and find the experience informative and entertaining.


Soon I will change the main categories you see up top to something like this:

  • Commentary: I’ll give my take on whatever topic is on my mind to give you a look at the world through my eyes.
  • Treatments: I’m always reading about or experimenting with different treatments. I like to talk about my experiences and the things I’m learning and I’ll do so here (instead of random outbursts of “so guys, I’ve been reading about fluromodafinil…” at social gatherings).
  • The Healthcare System: Quite often, finding the best treatment is the easy part – the challenge is navigating the healthcare system and acquiring it. The organizations meant to be on your side often become barriers. Between the FDA, DEA, doctors, insurance companies, and the pharmacy, there’s always a challenge and I’m still learning.
  • Blog: My daily life, less formal writing and rants about whatever happens to be on my mind.

Feel free to reach out to me via email at adamsotcblog@gmail.com until I set up more convenient contact methods.

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A Reminder To Myself To Always Challenge My Limits

The last time I tried to be active for three days in a row (by active I mean waking up at a decent hour, taking stimulants so I can function, and leaving the house), it didn’t go so well. After the first day, I went to bed hoping to rest up and recharge, but I didn’t get as much sleep as I needed. I was hoping that I could catch up when I went to sleep after the second day, but instead I woke up after only three hours of sleep. After tossing and turning for an hour, I recognized that I was definitely not going to be falling asleep again so I started my day.

I can handle one night of insufficient sleep, but any subsequent nights leave me in very rough shape. Lack of sleep amplifies all of my symptoms: brain fog thickens, every muscle of my body aches, nausea increases, and an overall feeling of severe discomfort comes over me. This is precisely what happened the last time I tried to be active for three days in a row. Making matters worse, the third day was a Thursday. That evening, I went to the open mic at Rick’s Music World like I do every Thursday to run the Facebook livestream and see all of my friends there. Usually, socializing with everybody and playing music can take my mind off of my aches and pains while I’m there, but on this particular occasion there was nothing I could do to distract from the discomfort. I knew that I looked as miserable as I felt, which really had people worried because everybody at Rick’s is used to seeing my at my best when I’m there. This unpleasant time was the worst yet of several bad experiences I had attempting to stay active for more than two days within the past few months at that point. Much like touching a hot stove, we as humans learn to avoid things that hurt us. During the last couple of months, I made sure to get lots of sleep and rest between my active days. I’ve mostly been getting as much as I can get done one day, resting the next, and repeating, with a few double-headers here and there.

Although it’s human nature to avoid things that have caused us pain in the past (and those who are constantly sick learn to do this even more than the average person), one of the most important things I’ve learned over the past couple of years is that I constantly need to be challenging my limits. Sometimes our situation changes but we don’t realize it because we’re still playing by the old rules. I have lots of memories of certain scenarios causing me pain and discomfort: things like travelling, standing up in the same spot for long periods like at concerts, and car trips causing nausea and muscle stiffness. These memories caused me to avoid a lot of things for a while. After getting myself a bit better, I’ve tried to overwrite those bad memories with good ones and I’ve achieved that in many situations.

I reflected on the changes that I’ve made over the past couple of months and figured that I was due to give a three day streak another try… and guess what? It was a success. I’m writing this at the end of day three. Yesterday was a little rough, but I still accomplished what I set out to do. I wanted to go to some thrift stores and look for some things that I could flip for a profit on eBay. I called up my friend Laurel to see if she wanted to come with me, thinking that socializing might help distract me from my aches, and I was right, it worked. I went to bed last night hoping that I would not wake up after three hours as it happened last time, and I fully expected my body to demand many hours of sleep. I was pretty sure I was going to wake up at 5pm. To my amazement, I woke up at 2pm feeling totally rested and ready to face the day!

This experience just reinforced everything I already knew in the first place. Any time I suspect my situation has changed even just a little bit, I need to re-evaluate my limits and see if I can push the barricade around me a little bit more. I got a lot accomplished during these three days, and I hope I can repeat this experience soon.

I considered using this post to explain the pros and cons of keeping momentum for several days in a row like this, but that’s a post for another time.

What Sick People Are Sick of Hearing (You’re Probably Guilty of It)

I want to talk about something most people don’t think about and it’s something most people are guilty of without realizing it. If you know anyone who is sick – either chronically or temporarily – it’s something you’ll want to read.

I still stick around in some online chats related to the game I used to play/moderate and have developed and maintained friendships from people around the world. I began talking to one girl shortly before she was diagnosed with cancer. She’s a young girl in her early 20s, and it sucks to have to go through something like that especially when you’re young. She knows my health situation and that I find all health and illness topics interesting, so I told her to keep me up to date with the experience. We spoke off and on, she told me about all the shitty things she had to deal with – physical discomfort and the mental challenges that go along with some of the procedures… the cancer’s effect, the drug side-effects, uncomfortable preparation for exams and operations, etc. After talking for several weeks she thanked me. She told me that she spoke to many people about her situation, friends and family, but talking to me was so refreshing. It’s not because of something I did, but rather something I didn’t do: I didn’t tell her “You’re so strong, you’ll get through this!” “Keep fighting, we’re all behind you!” or anything like that. I listened and replied in a very matter-of-fact manner about the realities of dealing with such a thing: it sucks. I didn’t insist the future was bright, because when you’re going through such an ordeal you’re concerned with the here and now. She told me that my reaction was so refreshing because everyone just kept telling her to get through it and fight hard. On top of her existing pain and discomfort, comments like this also made her feel like she was letting people down by not being stronger throughout the ordeal. I explained to her that I reacted this way because I had gone through the same thing myself many times over for as long as I’ve been sick. When you’re sick or otherwise uncomfortable or in pain, people feel like they need to do something about it. In my experience, that means that they do one of two things: The worst of the two is they’ll offer stupid advice, suggesting you try something that either would have no effect or something that you’ve obviously tried when the problem first started. To give an example of each, one person suggested I try chicken soup to cure my ME/CFS symptoms, and another suggested that I try getting more rest. The other less ridiculous reaction people have is to offer verbal support: things like “You can do it! We all believe in you! You’re so strong, you can beat this!” Unless you’re the only person they’ve ever spoken to, they’ve heard this dozens of times already ad nauseum.

Often when somebody talks about the issues they’re having they just want somebody to listen and understand the things they’re going through. Personally, when I bring up the fact that one or many of my symptoms are really bothering me, all I want is for somebody to know that it sucks. That’s all I need. The pain or discomfort will pass, I already know what I can do (if anything) to help, but for now I just want someone to understand what I’m going through.

Sometimes I feel obligated to let people know that I’m not feeling well because I can tell that the discomfort is affecting my behavior. It hasn’t happened as much in recent years, but especially during my teens when my illness was just starting to take off I would frequently have people misread my body language. People would ask me why I was mad or sad when in fact I was just feeling sick. After so many years of this, I learned to explain myself before there was a chance for people to make any assumptions.

If you’re reading this and have been guilty of the things I mentioned in this post, don’t worry about it, most people are. You don’t need to apologize to anybody or even feel bad about it. It’s just one of those things most people haven’t realized or ever thought about. Just keep it in mind for the future and you’ve done your part.

Insomnia and Music

As I write this, I am sitting on a stool in front of my laptop at Rick’s Music World. I’m here every Thursday night to perform at and livestream the open mic. Anyone who knows me on even a casual level has heard about this place and probably seen some videos of my performances. It was here that some of the greatest moments of my last few years took place, including my incredible Halloween feature, which happened during the months that I got away from writing in this blog. I’ll need to write about that and fill in the blanks sometime.

Right now, I have other things on my mind. Sometimes my symptoms start causing a chain-reaction and really kicking my ass, and this is one of those times. I’ve fallen way behind on sleep, which is increasing my fatigue and brain fog. It also makes my Adderall tics worse, and the stiff muscles are causing that burning pain in my shoulders. For some reason, the past few months, when I get that burning shoulder pain it eventually causes nausea… so yeah, I’m pretty uncomfortable right now, but the symptom that caused this chain reaction was insomnia. If I could fix that, all the other symptoms would improve. Well, tomorrow I hopefully start dealing with that.

I finally had a sleep study done a couple of months ago to confirm the obvious: sleep apnea. Every night I sleep for 2-4 hours and then wake up. If I took Adderall during that day, there’s still enough floating around in my brain stimulating it that as soon as I’m awake, my brain is all “We’re awake again? Great! What are we doing? Let’s work on that project we started yesterday or start another one! Let’s go!” so I can’t get back to sleep. I can afford a 2-4 hour sleep night here and there, and actually I like having one from time to time. When you’re blasting your brain with amphetamines, missing one night of sleep isn’t a big deal and during these 40-hour bursts, I get a lot accomplished. The problem starts occurring on days 3, 4, etc… I become a zombie that can’t think or move or get anything productive accomplished.

Tomorrow I pick up a CPAP machine, which basically makes sure you keep breathing through the night to prevent waking up. The company is named Enos, which is funny to me not only because of wrestler Mike Enos, bus also because it rhymes with penis. I’m easily amused after falling way behind on sleep I suppose.

Anyway, I’ve heard mixed comments about CPAP machines. Some people tell me that their sleep improved from day one and it was the answer to all of their problems. Others tell me that it eventually helped, but it took up to a year. Others say they still can’t sleep at all. My hopes are high, but the one thing I know for sure is that my sleep can’t possibly get any worse.

The two symptoms I took aim at overcoming this year were sleep and pain. I’ve got my pain somewhat under control, now sleep is the biggest enemy. There are so many things I want to get accomplished that aren’t possible when I don’t sleep.

Fixing insomnia is one of the final pieces of the puzzle. I’m getting very close to finally figuring it all out.

Sushi

I went to PAX East today. It was awesome, and maybe I’ll write about it more later, but some pain just subsided and I want to sleep now.

During my teens I had a few years where I dealt with severe abdominal pain pretty much daily. It was the least favorite time of my life and it’s the symptom I’m most afraid of returning. Almost all of my memories of taking the train into Boston were during these years, I saw a stomach doctor in Mass General for a while and spent a lot of time on that train in awful pain. Since feeling a bit better, I’ve been replacing memories of things I associate with bad moments with new, good memories. Part of why I wanted to go to PAX was to do just that since I took the train in. It was all going according to plan, until…

My stomach was a bit off when I woke up, and a little more off after a churro and pretzel at PAX. The group decided to stop off at a sushi place afterwards and I had been meaning to try sushi at some point anyway, so I took this opportunity to do just that. Big mistake! When I got home, the pain really started, and it felt a lot like it used to during those years. I had a few types of pain back then, one felt like food was grinding against ulcers in my intestines (doctors claimed they couldn’t find ulcers, but oh well), and another felt like my intestines were filling up with gas to the point where they were stretching so much they were treating. That’s the type of pain I got tonight. It started about 5 hours ago and I’m just now finally farting out the rest of the tension. I vomited a bit earlier that helped as well.

Luckily, my sick sense of humor finds the irony here funny. As long as I don’t get this kind of pain again any time soon, I’m good with this. PAX was still amazing, and I don’t even regret trying the sushi. Now if someone asks if I’ve tried it and I say I didn’t like it, if they try to argue with me I can tell them it caused this stomach pain! I plan on taking a trip into Boston soon to see an old friend, too, so that can be my opportunity to finally replace those bad “train into Boston” memories with some good memories.

Testosterone

I missed talking about a lot of things during the last few months when I wasn’t writing in my blog, and this is one of those things. It has all the features of a good blog post: It’s a story of success, and a story of how many healthcare professionals are completely incompetent.

My low libido has been a source of anxiety during my entire life. It has had a negative impact on every relationship I’ve ever had, starting with my first one at age 14, continuing to my most recent one in my early 20s. Despite that, it’s not an issue that I’ve addressed until recently because I had bigger problems. When you can’t even get out of bed, it doesn’t seem practical to worry about getting turned on. Now that I’ve made decent progress with my more important symptoms, I decided it was time to start dealing with my penis.

In early 2016, I asked my primary doctor for some blood work as I do from time to time, but this time I asked him to check my testosterone level. Like I always do when it comes to anything health-related, I educated myself about testosterone and what causes the levels to change over the course of the day. I learned that testosterone levels are highest during the first couple waking hours of the day, and that when getting your levels checked, you need to get your blood taken during these first hours because they use the high levels as a baseline. I called in to set up my blood work appointment and the nurse kept trying to write me in for a 7am appointment. I explained to her that my sleep schedule was unusual – my day usually started around 12pm-2pm, so I needed an appointment around then. It took a few calls back and a little arguing, but eventually they wrote me in for 2pm. I got the results, and my testosterone level was on the lower side of the normal range. It was not low enough for any treatment.

Towards the end of 2016 I had a physical, so again I asked to get my testosterone levels checked. I explained to my doctor about my situation earlier in the year, explained why testosterone is checked during the first couple hours of the day, and explained my sleep schedule. He said “Let me check with our endocrinologist and we’ll give you a call.” Endocrinology is the study of hormones. This is basic, fundamental stuff so I figured a hormone specialist would know what to do (you would think I’d know better by now). Sure enough, I got a call back later in the week asking me to come in at 7am. I called back and spoke with the nurse there that the endocrinologist to either write me in for a 2pm appointment or explain to me why I’m wrong about this. I explained to her how people with unusual illnesses like me need to know these things because doctors are so clueless. She told me she would again leave a message for the endocrinologist and get back to me. Sure enough, I got the call a few days later. “Hello um, Adam? So uh, the endocrinologist said um, you need to come in at 7am because uh, um, so the test can be accurate.” I started to argue back explaining that if I had my blood drawn at 7am that would be the END of my day and therefore levels would be very low and the doctor would be concerned, but I stopped myself. “Fine, let’s try it their way.”

Sure enough, I got a call a few weeks later. “Adam? Yeah, your levels are very low and the doctor is concerned.” Shocking! They put me on a testosterone supplement, a topical ointment. As I looked into it, I found that the cream is the worst form of taking testosterone. When you think of guys taking a testosterone supplement you envision them injecting it into their leg, right? Well, there’s a reason for that. The cream is very unpredictable – sometimes the body will absorb 30% of what you rub on your shoulders and other times 70%. It causes a roller-coaster effect of your hormone levels so some days you’ll be getting random erections and other days you can’t get any action going on down there. Oh well, I figured I would give it a try so I could experience what higher testosterone levels felt like and if it was indeed the answer to my libido problem. I set up another blood work appointment (at 7am again) to follow up on my levels after a couple months of taking the supplement, and the fun continued.

I was told to go to Brockton Hospital for my follow-up bloodwork. It would have been easier for me to go to the doctor’s office as it was much closer, but I went there as instructed to. As soon as I got home, I got a call from the office. “Adam, did you go to Brockton Hospital? We were expecting you here at the office.” The icing on the cake was when I got the results of that test. I was interested in seeing how my levels had changed after a couple months of treatment. Instead, I opened up the envelope to be informed that “Adam, your prostate is fine.” Well that’s cool, but what about my testosterone levels?

Later this week I meet with the chump endocrinologist. I’ve read a bit about what I can expect during this appointment. Maybe he’ll continue with the cream, or if I can convince him to switch me to the shots, he might prescribe a low dose that will cause a similar roller-coaster of hormone levels. I’ll probably end up having to find a competent doctor in Boston to give me what I want.

Did the testosterone work, though?

Hell yeah it did. Before this, I imagine if most people thought back to the last time they were really horny it would only be a matter of hours, but I can only really recall one moment in my life when I was really horny in my late teens. Since being on this testosterone though, I’ve had a healthy sex drive as a young man like myself should. Look out, ladies.

 

 

Stimulants and Sedatives

For me, insomnia comes in waves. I will have no issue sleeping for a few months, then I’ll have a few weeks in a row where I can’t seem to get a decent night of sleep. What’s most puzzling this time though is, I’ve made several changes lately that should have made getting to sleep (and staying to sleep) easier:

  1. I’ve lowered my Adderall dose, which has helped my shoulder pain a lot. My amphetamine tick is rubbing my fingers together, which causes a repetitive strain injury in my shoulders.
  2. I’ve had more regular physical activity than I’ve had in many years, going to the gym regularly.
  3. I’ve tried all sorts of additional sleep aids available to supplement the Trazadone/Seroquel with: Unisom, Benadryl, Valerian, etc. Anything with limited risk to my brain chemistry.

Nothing worked… so I’ve resorted to something I’ve deliberately avoided my entire life: benzodiazepines. Benzos aren’t something that should be taken every day, because physical dependence happens fast and it sounds like benzo withdrawal suuuuuucks.

A while ago my psychiatrist offered me Temazepam (Restoril), but I needed to take medication to sleep every night, and I was not willing to deal with the problems that came with taking that nightly. A while after that, I was experimenting with all sorts of different things, looking for something stimulating to take during my Adderall break days. The only thing that cut through my severe fatigue at all was the curiously named CRL-40,941, commonly referred to as Flmodafinil among other things. It is one of many Modafinil analogues and perhaps the strongest. It is art of a class of drugs called “wakefulness-promoting agents.” Well, that description is very accurate. In fact, I was not able to sleep at all the night after taking it. After reading up it appears I am not the only one with this problem after taking modafinil analogues, and benzos are the only thing that works for others in this situation. Still though, I held off on the temazepam and just stuck to my Trazadone/Seroquel combo. I am still going to try using the night after a dose of Flmodafinil, but if my current bout of insomnia increases, I’m going to need to use it occasionally when I am in dire need of sleep after falling far behind as well.

The experience of getting prescribed it brought back some familiar sad realities about the healthcare system – many drugs that should not be taken daily are prescribed to be taken daily, and without warnings of the consequences. Before taking a new drug I always learn all about it for myself first. I read up on dosing information, side effects, personal experiences, drug interactions,  the way it affects the brain chemically, everything. There is a lot that can go wrong when you are on a lot of medications, and many people learn that the hard way. There are many stories out there from people who trusted their doctor and took a benzo as prescribed – every day. A couple of months later they tried to stop and started having all these awful withdrawal effects.