How I Finally Got Better

It was January of 2014, and something needed to change. I had been taking Adderall every day many years, and by now, tolerance had diminished all of its positive effects. Taking it only prevented withdrawal. I felt a constant burning in my shoulders, I wasn’t sleeping well, and I had no energy. I needed to do something, but I wasn’t sure what. Adderall was the only drug that ever had a significant impact on me and without it I wouldn’t have been able to graduate college or have a life outside of my bed at all. The only way it was ever going to work again was if I took a long break from it to reset my tolerance, so that’s what I did.

The next year was about what you would expect from amphetamine withdrawal. I would sleep for 12+ hours a day, quickly find something to eat and lay on the couch for a few hours watching TV. I’d then go to bed, and restart this process every day for nearly a year. I had lost contact with most of my friends a couple of years earlier when things started getting bad, and during this time I completely dropped off the map. This was a very rough period and was the closest I came to losing mind since I had in my teens. When my symptoms first started in my early teens, between the sudden constant pain that only worsened and the loss of all my friends due to the fact that I couldn’t go to school anymore, I lost it and had to spend some time in a psych hospital. I had developed a strong mind capable of processing all of these issues since then, but the isolation this year almost pushed me over the edge.

When I felt like I had been off the drug for a sufficient amount of time, I decided to start taking it again. The whole reason why I was in this mess in the first place was because I took it every day, so I decided to cycle it. I would only take it a couple of days a week. It was amazing. I hadn’t felt energy like this since I started taking it in the first place as a teenager. It allowed me to function a couple of days a week, which at the time was amazing. I managed to pass a some college classes (one per semester) during this cycle. I was very fortunate to have these two days, however I quickly realized I wanted more.

I started using my two days of brain power to make use of the internet and research medications I hadn’t heard of before. I also learned a lot about how the brain works so I could tell which drugs might be the most beneficial to me, how to take them safely, and how to avoid tolerance. I had seen all the best doctors in the world for years and they couldn’t figure out how to help me at all. I figured it was worth a shot to try it on my own.

I never had much luck with rheumatologists before. Much like other doctors I saw, they would run their tests, find nothing wrong, try a couple of meds, and give up. In my experience if you go to a rheumatologists complaining of muscle pain, they will try you on Neurontin and Lyrica and give up. I read about a drug called Baclofen and brought it up to my doctor. He had heard of it, but he needed to get his tablet out and do his own research to learn how to prescribe it. I thought “He needs load up Wikipedia to learn about this drug?” Unfortunately, the maximum he was willing to prescribe was only about 1/3 of the dose I needed. High-dose Baclofen has a variety of benefits, and studies exist showing that these doses are safe and without side effects. In France, they use high doses to treat alcoholism with great success. Baclofen helped lessen some of the effects of Adderall, so I now had a winning combination to be even more productive on those two days.

I had been on Neurontin previously without success. I was taking it on my Adderall days to try and lessen my pain, but it has little effect. I thought “Why don’t I try it on my tired days and see what happens?”It is chemically similar to Baclofen, a medication I’d like to take daily but couldn’t get a high enough dose. I spoke to my psychiatrist about it and he wrote me a prescription. It was then that I realized I had been taking it all wrong before. I found if I take Neurontin the day after I take Adderall, I still have enough leftover dopamine floating around in my brain and when I throw the Neurontin on top of it, I’m able to keep my sharp brain for the rest of the day until I go to sleep. If I take Adderall 3 days a week and I take Neurontin the day after, that gives me 6 days a week where I can function instead of the previous 2-3.

I was still having pain, though. The various doctors I saw over the years were hesitant to give me any sort of painkiller despite my severe pain. For a couple of years I dealt with the pain by downing a pint of vodka a night, and that solution doesn’t last forever without causing some serious problems. I discovered kratom, a plant from Thailand. I read that it tickles the morphine receptors in your brain, yet it is safe and does not cause bad withdrawal. It is self-regulating since if you take too much it just upsets your stomach. It’s very popular in the chronic pain community as well as the opiate addict community since they use kratom to get off of more dangerous drugs like heroin. This all sounds too good to be true, why hadn’t I heard of this before? Well, it lived up to the hype. For the first time in my life, I had something I could take when the pain started getting too bad.

Now at my time of writing, my week looks like this – I am superman 3 times  week, tired but very functional another 3 days, and totally incapacitated one day a week. It’s not all perfect – I still have ups and downs: I might have a couple weeks of insomnia every few months, a week here and there where my fatigue is very bad, some pain, immune system flareups that dry out my skin, etc… but I am enjoying life. I got my friends back, I can go on long trips without being uncomfortable the entire time, I can start and finish projects, I can do things and enjoy it.

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Maine Trip

I took a two day trip to Maine recently, and I shook off a lot of chains in the process.

I have a ton of memories of situations that caused me a lot of pain that I’ve been conditioned to avoid. You only have to put your hand on a hot stove once to learn to never do it again. There are many “hot stove” moments in my past.

Some years ago I drove a friend of mine to go see her girlfriend that lived an hour away. My friend didn’t have a license, and I had just gotten mine, so I figured a long car trip would be fun. It was about two hours each way, and afterwards my joints were so sore I could barely walk for a few days. This conditioned me to avoid long car trips.

I’ve been at concerts where my back will start hurting so bad halfway through the opening act that I can’t stand up anymore. Again, I learned to avoid spending too much time up on my feet.

I was able to improve my health a lot the past year or two, so I decided to challenge all of my fears. My situation changed, but I was still playing by the old rules. I need to overwrite these bad memories with good ones. I needed to shake off my chains!

I drove a couple hours north of my home state of Massachusetts to Maine. A good friend of mine grew up there, so she gave me plenty of ideas of where to go and we kept in contact by phone during the trip. I visited some beaches, ate some great food, spent hours walking around Portland, and played a couple open mics. Unlike most open mics that only give you 10 minutes to play, the first restaurant gave me 40 minutes! The second bar I played at wasn’t and open mic anymore but I was able to talk my way into playing for 30 minutes. I met a lot of very interesting people that kept me company after playing my music.

These were the happiest two days I could remember in recent memory. I was on top of the world. Sure I was sore as hell afterwards, but I just didn’t care.

One of the more annoying features of Chronic Fatigue Syndrome is post-exertional malaise. Any physical activity is followed by a long period of immune system flareups. This means a variety of symptoms such as muscle aches, dry skin, nausea, headaches, and other things. Any time I do a lot of physical activity for a long period of time (hours or a couple of days), it is followed by a couple weeks of all of my symptoms flaring up and feeling like I had a bad cold. After my two-day Maine trip, for the first time, I didn’t get sick afterwards.

This trip filled me with a lot of confidence for my future. I really needed it. I can’t let past memories of bad experiences prevent me from doing things, I need to constantly challenge my limits. Things change over time, but if you aren’t constantly challenging your limits, you’ll never know what you’re really capable of.

Adderall – The King of Prescription Stimulants

My life completely changed when I first started taking Adderall. For the first time in a while I had an abundance of energy and motivation. I thought I was cured.

Unfortunately, strong stimulants come with some side effects. The most obvious one is that it’s difficult to sleep. You don’t need as much sleep when you’re on drugs like Adderall – you can get 4-6 hours and wake up feeling ready to go, but after a few days of this it starts to creep up on you. Your muscles get more tense and a variety of ticks can develop which vary from person to person. Some rub their fingers together, some make facial twitches, and worst of all some grind their teeth together.

Tolerance develops very quickly with stimulants. I recall looking up a drugs experience site for people with Chronic Fatigue Syndrome, and all the reviews for Adderall were either “I just started taking it last week! It’s great! I’m cured!” or “I started taking it a year ago… it’s not working as well anymore. I’m tired and my brain is getting foggy again.”

Doctors prescribe Adderall for daily use, but in my experience, using it daily just makes all the negative effects listed above much worse. I learned this the hard way. I took it daily for many years and it helped me live somewhat of a “normal” life for a while. At the end though, I was sleep-deprived, my muscles constantly felt like they were on fire, and my fatigue/brain fog levels were getting pretty high again. I realized there was nothing to do but stop it, so I did. After a year of withdrawal (sleeping up to 15 hours a day, only getting out of bed to use the bathroom, only being capable of watching TV) I began cycling it.

Cycling helps reduce side effects and prevents tolerance. Some people take “Adderall vacations” on the weekends. I take it 2-5 times a week depending on how much I need to get done.

Adderall is fairly easy to get prescribed from a psychiatrist. It’s cheap for insurance companies, it’s their go-to stimulant drug. In fact if you try to get a perscription for a wakefulness-promoting agent like Modafinil, they’ll refuse to cover it and say “Why not just take Adderall instead?”

I’ve seen some members of the CFS community say they don’t like stimulants due to the side-effects and crash. While it’s true that there are some uncomfortable side-effects like muscle stiffness, ticks, and insomnia, it’s done more for me than I ever could have imagined.

Dealing with Doctors

Not getting anything out of doctor visits? There are things you can do.

Anyone with a mysterious chronic illness is familiar with the disappointing routine of seeing doctors. They run their tests, can’t figure out what’s wrong, try different medications that don’t help, then don’t know what to do. There are some things you can do to get the most out of your appointments.

The visit

We’ve all had doctors that are always in a rush. They hurry you along, asking you to get to the point, and they’re out of there before you know what happened. You are paying for their time, and this is your health and your life at stake here. Warn the nurse if you have a lot to say before the doctor sees you. This way he’ll know and can deal with his other patients first, giving you all the time that you need. You need to speak up and address everything on your mind.

Doctors know far less than what you would think – it’s up to you

Doctors are used to dealing with only the most common of problems. They don’t know what to do for anyone coming in with an unconventional illness. They will run their tests, find nothing wrong, maybe try a couple of medications, but then they’ll be left scratching their heads. You can’t walk into appointments just hoping that the doctor will come up with a great idea for you – you need to have an agenda for every appointment. I understand that when you feel like crap, the last thing you want to do is research things on your own. However, once you find that first drug that makes you feel a little better, that will be just enough to help you looking for more.

Doctors often don’t understand the medications they prescribe

Doctors have a short list of medications they try people on, the drugs that are pushed on them the hardest. For example, go see a rheumatologist for your joint pain, and they will throw Neurontin and Lyrica at you. Look around your doctor’s office: You might notice that every piece of stationery has a drug name on it. The drugs you see advertised on TV are also the ones being pushed on doctors. They are not prescribing unique drugs for your unique problems, they are prescribing the most common heavily-advertised drugs that vaguely treat symptoms similar to yours. The dose of each medication is very important as well, which doctors do not always understand. 10mg might not do anything, but suddenly relief comes at 30mg. Often they will try you on the introductory dose and then move on. For many medications, the starting dose will be completely ineffective, especially for those suffering from particularly debilitating illnesses.

Educate yourself

The internet is a great resource, so take advantage of it! When looking up drug information online, don’t just look at the “WebMD” type of sites. These will tell you the “official” information provided by the drug companies themselves but don’t tell the whole story and won’t tell you what to expect. Look up sites where users discuss their personal experiences. There may be effects, side-effects, concerns, and warnings that you won’t see on WebMD. I used to think drug experience sites like drugs.com and erowid.com were just full of junkies trying to get high… no, often these people are sick and desperately trying to feel better – just like you and me.

 

You need to take an active role in your health care. Putting the effort in can be the hardest thing to do when you aren’t feeling well, but it’s something you need to do.