Friday, my ITB was increased to ~175 mcg/day. I’m typing this about 48 hours after the increase. I was fairly active yesterday. I did have to take a 2-hour nap mid-day, but I was able to do a bit of shopping, without my wheelchair. My muscles did fatigue, but as long as I kept moving them, I was OK.
I met up with a friend at a flea market and talked to him a few minutes. Standing still hurt me. The market was hot and my muscles fatigued from standing still. Once I returned to my auto and relaxed a few minutes, I was fine to continue on with life.
The “Why?” is resurfacing again. We are treating symptoms. We did have a discussion about it with the PA. The only place we didn’t check for MS is in the thoracic portion of the spine. Additionally, he said I didn’t have other markers of MS. I don’t know what the “markers” he referred to are. So I am left adrift in thought. I have to state that I query my mental state frequently. To the point of questioning if anything is real.
What we know now:
My muscles fail to relax. This seems to be the core of the issue. The assumption is that there is a genetic defect in the way my nerves operate. The concept of it being genetic is terrifying my kids, for good reason.
I have osteopenia which is the precursor to osteoporosis.
I have osteoarthritis which causes a great deal of pain in various joints. This pain is more of an aggravation. My wife bought me a larger wedding ring so that I can wear something. The ring moves from finger to finger depending on how swollen my fingers are and which fingers are swollen. I love having my ring.
I have an acute phase that destroys me physically as well as mentally. I have tried very hard to learn the stages of the acute phase so that I can tell early when something is coming on. This is, loosely, what I have:
Stage 1 (2-4 hours):
- A sensation of heat moves about my person like a cloud. There is no rhyme or reason to it. However, it seems that there is only one location at any given time that has this sensation.
- The palms of my hands and feet feel like they are on fire. This sensation can extend up the appendages toward the main body. The usually don’t extend past the knees or elbows.
- The muscles in my face are drawn taught. This is generally on my left cheek, but has been as much as my entire face
Stage 2 (2-4 hours):
- My muscles tremble. Generally this is everywhere from my neck below. It is not generally externally noticeable.
- If I am relaxed, half-awake, I can feel minute spasms throughout my body. This is the most interesting feeling of all. The sensation is almost like having a hundred mice or rats run across your body. Where their feet contact, you have a small spasm.
- I begin to lose focus and my cognitive skills are diminished. My external mood is affected. I want to cocoon myself from the world.
- I begin to feel fatigued.
- I cannot stay still. I’ve got to keep my arms and legs moving.
Stage 3 (4-6 hours):
- Cramps in various muscle groups begin.
- Abdominal wall buckles. I don’t know how else to describe this. It’s a cramp-like sensation, but it feels more like the wall of muscle folds in on itself. It will take your breath away.
- Externally noticeable spasms start. Usually in singular or only a few muscle groups. My arm will launch off my body. I’ll kick a dog off of me he/she is laying on my legs.
- Even typing becomes difficult. I’ve made some blog entries during this stage. The are short statements and don’t give a lot of information. They are more cries for help or just trying to document the pain that I’m going through.
- Muscles sometimes get strained during the cramps and minor spasms.
Stage 4 (12-36 hours):
- Evil is here. Full body spasms. These usually will pull muscles in several locations throughout my body. The remnants of a full body spasm drop me for a week or two while the muscles recover.
- I lose consciousness, thankfully, during some of the greater spasms.
- Time is irrelevant. I have had been in this stage for 24-48 hours in the past. Your focus is on the “now.” There is no thought given to anything else. You just want this stage to stop.
Recovery (1-2 weeks):
- Rest. Depending on what stage the acute phase stops at, you are completely exhausted. Muscles are fatigued. You pray “Thanks” that you have some freedom from the disease for a few.
- Heating pads.
- TENS unit.
- Food. You get extremely hungry.
Note: I have gone from baseline to the final stage in under 20 minutes. Times are generalizations.
The rapid acceleration through the stages occurs when I do to much and I artificially trigger the event. For example, this morning at Mass. I wanted to get a shot of the Advent Candles being lit. I forgot they were done before Mass. I ran to get my camera and got the shot. I didn’t make it through the first reading. I left, got home and took my meds.
You may have noticed that the frequency of the acute events are about every 3 days where the recovery time is from 1-2 weeks. This is where we developed our theory that prior to the overdose, my muscles never recovered from the previous event. Successive acute stages only added agony to pain. Since we have achieved a measure of success in lowering the veracity of the acute stage, my muscles have some chance of healing (if I’m careful) thus lowering the affects of the acute phase. The process has a critical point of no return. We have been searching for ways to avoid that critical point.
My wife and I have learned that taking a cocktail of Zanaflex, oral Baclofen, Lortab and Horizant kill the progression of the stages. We have successfully done this 3 times. However, my body has a tendency to want to return to the acute phase more regularly when we stop it. It is almost like my body wants to go into spasm, but we are depriving it the ability to do so.
I am exceedingly thankful that we have found a way to stop from progressing to the final stage. We are working on extending my good days. Before the increase, I would have a mix of 3 bad days to 1 good day. We increased the ITB Friday with hopes of extending the number of good days. The last 48 hours indicates that we may have made progress.
Rest is extremely important. I have to rest the muscles or I will fatigue them and trigger the onset of the acute phase. Sitting and relaxing don’t seem to be sufficient all the time. Riding in my car, sitting in my recliner, and reclining as a passenger with my legs elevated seem to help. Sleeping helps the most. Sometimes the relaxation must be chemically helped.
There are multiple components that we are fighting. Muscular, Neurological, Psycho-social and Spiritual. All four aspects seem to play together to kick my butt. When we do warfare, we have to address Neurological as well as Muscular issues. Psycho-social and Spiritual must be addressed, but in a different way. You can take a pill for depression, but that is not the cure, only the treatment.
I went from being a rather active producer as well as a consumer to not even really being able to consume. My life took a serious down-shift into ultra-low gear. My desire to be a producer must be addressed, less I keep injuring myself trying to do things.
Of all aspects, I find the psycho-social is the hardest to address. I don’t know how to handle it successfully. I have always been a fixer. I want to fix the world. The truth is, I can’t even fix myself.
Well, I think I may have gotten everything out that we know about my condition. I would really like to know what I have and why I have it. Not only for myself, but to alleviate the stress on my children.
Thanks, and God Bless,
Jay C. Theriot