My theory is that to affect the acute, you prepare during the chronic stage.
Chronic Stage – Muscles have increased rigidity. They sometimes contort, and feel stolid. Sensory nerves are week making things hard to either grasp or not crush. This is due to a feed-back loop due to dying nerves. Ability ranges from walking unaided to barely able to operate a wheelchair. Ability degrades during the day and some function can be restored, temporarily with rest.
Acute Stage: Muscles begin to tighten as strings of a violin. Bruising and muscle tears are occasional visitors. Function and mobility are zero. Rest and isolation are a must. Sometimes an aura precedes the event. Sometimes their is only a short 5-10 increase in muscle tightness from chronic to debilitated.
The muscles are not healing fast enough between spasmodic events. Thus, a snowballing affect occurs. A spasmodic event damages the muscles. The muscles heal slowly. The next event occurs on already damaged muscles. The damage and pain are markedly greater. Recovery time is even slower due to the increase in damage and the decrease in muscle function. This cycle repeats itself until patient collapse and external sedation.
Provide the muscles high-protein drinks similar to power-lifters. Immediately following an event, or even during an event, if possible, consume a BCAA solution.
Ideology behind the method:
In the chronic stage, super-loading the muscles with chemicals that encourage repair will help to break the snowball effect and deprive the event from affecting mangled muscles.
In the acute stage, or immediately thereafter, the BCAA helps reduce the inherent pain of the damaged muscles.
Drink at least one protein drink per day. Ingesting two protein drinks if muscles feel as they are significantly damaged.
Once there is a lag in the acute event, consume a BCAA.
Originally, the acute stage would last from 36 – 96 hours. All of this time was spent in pain levels from 8/10 to 10+. Damage to the muscles from these events were significant enough to make the chronic stage elevated in pain. Baseline pain during a chronic stage was 5/10 – 6/10.
After using protein/BCAA drinks for about a month, a significant reduction in the damage to the muscles caused by the acute event was noted. The baseline pain during an acute event remained unchanged, but the baseline pain during the chronic dropped to 3/10 – 4/10 and eventually 1/10. Additionally, recovery time from an acute event was reduced from weeks to days.
After three months of using the protein/BCAA drinks, significant effects were noted in the acute stage. The acute stage no longer was 96 hours of solid extreme pain. The acute stage morphed into a set of pulses, generally 4-hours long. Fatigue recovery was about 4-hours. The pulse would resurface 13-18 hours later and the series continued for 4 or 5 pulses. However, there were interludes where pain levels would drop considerably, sometimes to 3/10 and even 2/10 during the acute stage. This would make it difficult to place a definite ending of the acute stage. As the pain levels would drop considerably between pulses, the only real way to decide if the acute stage passed was to wait 24 hours for a resurgence of a pulse.
Preparation of the muscles during the chronic stage is key to a positive effect during the acute stage. I feel the next step would be to add a electrolytic enhanced drink readily available in multiple markets to see if muscle function and cramps can be decreased.
I am not a doctor. I am a person that is struggling with his wife to find a way to deal with this enigmatic disease. If you try this, expect different results. This study in no way is scientific. This test was executed while taking all my normal medications, which are many. It is entirely possible that none of this works and I’m delusional.
Jay C. “Jazzy_J” Theriot
Jay C. Theriot can usually be found as “Jazzy_J” on the IRC Channel #ExtremeSpasticity on Freenode.net –> see: irc://irc.freenode.net/ExtremeSpasticity You will need an IRC Client such as HexChat to connect.