Updated: Jan 5
Below is a personal experience and should be treated as such. It is not a medical recommendation for any particular exercise, supplement, treatment or drug and any new exercise, supplement, treatment or drug should be discussed with a medical professional.
My Journey - The Beginning
I was diagnosed with CMT 1A when I was 15 years old, and from that moment on, every neurologist I saw stressed the importance of exercise and "maintaining the muscle I had".
Due to being poor on my feet, I decided that I would maintain my fitness by going to the gym; I started when I was 16 and since then have maintained some form of gym routine for more than 15 years.
For the first 6 years of going to the gym, access to good gym routines and diets were sparse and I couldn't afford a personal trainer to give me advice, therefore those years were not particularly as focused or efficient as they could have been. As I got older and information became more readily available, I subsequently improved my exercise routine and diet to a level that should have shown the benefits of a frequent exercise routine.
The Mysterious Problem
When I started training properly in my early to mid-twenties, I realised after a few years that I was making no progress regardless of what I did; I could eat more, eat less, eat better, train harder etc, yet nothing made a difference in improving my strength or stamina. Simply put, nothing was working. This became truly soul-crushing when I would see someone new in a gym overtake me with 12 months of causal training against my years of hard work. I kept asking myself "what am I doing wrong?"
The reality is that I was doing nothing wrong. As it turns out. the issue is that CMT (and other forms of neuropathy) inhibit muscle growth. Why? No one knows yet. However, this was reinforced when I saw a leading professor in endocrinology who simply said: "I've never seen a bodybuilder who has CMT. CMT limits muscle growth. If you want to get big then just send-off for the brown package at the gym and go for it". My neurologist adamantly argued against this claim but was unable to explain how, or why the endocrinologist was wrong. It also got me thinking; maybe I should look into the "brown package" (that means anabolic steroids)?
Researching Performance Enhancing Drugs (PEDs)
Given my conversation with the endocrinologist, I researched PEDs for months before even considering if I was going to take any, let alone what. As it turns out, the world of PEDs huge, encompassing everything from the legal to the illegal, and drugs that fall somewhere in-between, all with different pros and cons. Below is a quick overview of what I researched:
SARMs (Selective Androgen Receptor Modulator)
Anabolic-androgenic steroids (AAS) steroids are the most commonly known form of PEDs; they are what professional bodybuilders and athletes take and have been considered (incorrectly) to be dangerous. The reality is that they are the most well-understood group of PEDs, with manageable side-effects, BUT are extremely hard to obtain from a legal source. Also as part of the risk-management when taking AAS', they often require a number of other pharmaceuticals to counteract known issues, meaning using AAS responsibly becomes even more challenging as numerous drugs are involved.
Prohormones exist as a legal way (in the UK) to sell anabolic steroids via some chemical tweaking. They come with all the side effects of anabolic steroids and even more issues, such as the high likelihood of extreme liver damage. Most people would argue AAS are a safer option over prohormones and personally, I would never touch these.
SARMs (Selective Androgen Receptor Modulator)
SARMs are a group of relatively new PEDs. The majority of them are currently undergoing research (so they lie in a legal grey area), with the goal of the pharmaceutical companies that are creating SARMS is to develop a medicine that has all the benefits of anabolic steroids yet none of the side effects, achieved by SARMs being selective in where they target in the body.
However, SARMs haven't quite reached this goal, hence why some are still undergoing trials, with new ones being developed regularly. Given how they work, they result in fewer side-effects than anabolic steroids but are also not as powerful.
I ended up choosing SARMs as I could legally obtain them, they were affordable, they were the safest option and they sounded like they were more than potent enough for my needs.
SARMs - My Journey So Far
I started with a SARM called LGD-4033. Although this worked well for me, I have come to realise that LGD is very potent and therefore, if I was to start again, it would not be with LGD-4033, but with a SARM called MK-2866 (aka Ostarine or Enobosarm). I have tried this SARM as well and have personally found it to help with strength and recovery, however, I found it to be a bit more hepatoxic, although it is worth noting that this can vary significantly from person to person.
Moving on from MK-2866, there is LGD-4033 and RAD140. I've used both and found them to be on par with each other, but personally, I found that RAD140 aggravates my IBS so I do not use it regularly.
How I've used SARMs
I've done two 6-week cycles on Ostarine, a 6-week cycle on RAD, and more than five cycles of LGD-4033, ranging from 6 to 10 weeks in length. Overall, I personally found LGD to be the most effective as it seemed to help improve blood flow, which was particularly noticeable during an intense leg workout; I would feel my feet warm up and sensation coming back to them, something that was particularly noticeable in the winter months.
However, my journey has not been free of side-effects. Most importantly, the main challenge with SARMs is finding legitimate sellers. A lot of companies will sell either prohormones and label them as SARMs, or poorly made SARMs. This can be extremely dangerous as they can do a lot of damage to your liver and your endocrine system (hormones).
With legitimate SARMs, I came across a few side effects but found that they could all be managed to a safe degree. Below is a list of the issues I have personally had with taking SARMs
Elevated ALT (Alanine Aminotransferase)
Increased blood pressure
For me, the most important are the first two issues. My ALT, an enzyme in your blood that indicates how healthy your liver is, is normally raised when taking SARMs. I found supplements were able to help with this and that by taking the SARM for a short period of time (also known as a cycle), this resolved this issue as your body has time to recover.
My testosterone production does get suppressed when on SARMs, which is an expected side-effect. This has never led to any issues, however, the danger is that when you stop taking the SARM you are left with low testosterone. This can lead to a whole host of other issues, such as depression. I treat the low testosterone with a pharmaceutical called Clomid (also known as Clomiphene). Clomid naturally causes testosterone production to increase in men and has been shown to be safe to take long term. I am fortunate in that I can buy Clomid legally and from a pharmacy, but is something people may struggle to source, with counterfeit Clomid existing.
Clomid is normally referred to as a PCT (post cycle therapy) drug. This means that it is used to treat any side effects after you have used a PED. PCT can be overlooked when using SARMs, which is can be dangerous.
My cholesterol is also usually impacted when taking SARMs (HDL too low, LDL too high), as the oestrogen in my blood is reduced (due to a lowering of testosterone) and oestrogen is cardioprotective. I found this to be easily resolved by eating well and taking supplements such as Krill oil and CoQ10.
I have experienced some hair loss recently with taking higher doses of LGD. Coming off the LGD and taking finasteride seems to have stopped this, but this is something I am still looking into.
What to expect with PEDs (Performance Enhancing Drug) and CMT?
I noticed huge improvements to strength using SARMs, as well as muscle growth, neither of which I was able to achieve naturally. The main issue I found for 7 years + of going to the gym was;
a) I was never able to develop in mass or strength
b) My muscles would fatigue very quickly
c) Massive imbalance in the muscle I had e.g. skinny forearms and weak hamstrings.
SARMs reversed this and for the first time ever, I started making progress in improving my strength, size and stamina.
How long did I take SARMs for? (Also known as Cycle length)
When people discuss how long they take a PED for they normally talk about their "cycle length" as they cycle on and off the PED for health reasons.
Most cycles range from 6-12 weeks depending on how you react to the SARM/steroid. Some people’s testosterone or stamina starts to fade after 6 weeks, whereas other people can push it to 12 weeks. As a starter, I aimed for a lower dose and only for 6 weeks. I did find that when taking Ostarine I needed a dose of 25mg as I had no reaction to any less. LGD and RAD doses for me can range from 4-12 mg. With those two SARMs I started at the lowest dose and monitored how I reacted to them by noting my energy levels, strength etc.
Any PED done correctly is expensive. I would estimate that it costs about £125+ per month for supplements, and then add onto that the cost for roughly 3 blood tests (1st blood test before you start, 2nd test when you come off the SARM, and last test after you come off all your supplements (PCT) to make sure you're back to normal and can start again).
Due to the side effects listed, I take supplements that help with cholesterol & liver function (this is called on cycle support), and then Clomid once I have stopped taking the SARM to help restore my natural testosterone levels.
On cycle support is easy to buy as they are just generic supplements (fish oil etc), however, I did a lot of research to see what supplements are proven to work and what is just myth. As with all sports supplements, you have to do your research into who is a good vendor of quality supplements as opposed to those selling snake oil.
The law and purchasing PEDs
Luckily, I live in the UK so purchasing and using SARMs are legal, and in fact, even buying and possessing anabolics would be legal as UK law only makes using the postal system to move steroids a crime. Being sold SARMs might be classed as a Food Crime (from Q3 2018) so any company selling SARMs as a pill would likely be breaking the law. Personally, I have now swapped to buying SARMs from slightly more expensive vendors that have third-party testing to prove that what you buy is what you get and are selling the SARMs in a manner that is more compliant with UK law.
The End Result - Was it Worth It?
Absolutely. I have an identical twin who had rarely gone to the gym and prior to me taking SARMs there was little to no size difference between the two of us; so after 7 years, and taking every normal supplement possible, trying type of diet, exercise regime etc I had no physical change in comparison to my genetic clone.
After my first LGD cycle, I added almost an inch onto my forearms. Now I'm significantly bigger and stronger in all muscle groups. Having an identical twin has shown to me the issues CMT causes with muscle growth and how SARMs or PEDs would at least help with the quality of life for someone with CMT e.g. better grip strength, better balance, fewer twisted ankles, as long as they are taken correctly.
Furthermore, it also turns out that CMT does impact sports performance and causes muscles to breakdown as the nerves die. This is something my neurologist failed to mention to me which is probably the most important issue when it comes to CMT and exercise. I am also lucky that I am under the support of a leading endocrinologist who specializes in this field (PEDs), so I do have that safety net to fall back on.