“SCOLIOSIS BODY MIGRAINES” 

Introduction by Greg and then Trenna’s words, with only a little editing

The inverted commas in the title were in the original document. A “Body Migraine” is a Trennaism. In this case the term she used to describe this set of symptoms.

Introduction

This is another post that I am including mainly for the benefit of those with musculoskeletal issues. That of course incudes those, like Trenna, with Marfan Syndrome.

Trenna’s words below were on her iPad. It looks like she started writing it in 2017 but she never finished it. Looking at the original, which I’m NOT posting, it is clear she has dictated to the iPad and Trenna hadn’t finished going through it and cleaning it up.

I have done my best to do that. The rest of the post is Trenna’s words, with only a little editing from me.

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Day 00/0/17 restart of regular SBM. Why?

My theory is that I am doing more intense muscle related exercises. 

My quads, gluteals, abdominal muscles have virtually disappeared over the past year. I do not feel they support me. 

So far, the physiotherapists have been unfamiliar with Marfan’s syndrome, except for what they have picked up on Google prior to my appointment. 

Therefore, they don’t understand that if I squeeze my muscles they WILL cramp. This affects my spine curvature and I end up having severe pain and am unable to do even my less strenuous exercises. 

This is unacceptable to me. The result is a day or more of sheer pain unable to move freely, followed by a day of fatigue & weakness & while I recover I lose at least three days of useful activity time which defeats the point entirely!

SCOLIOSIS BODY MIGRAINES

Starts with headache pressure above eyebrows followed by pain at the base of my skull, left side. Next, cramping of right buttock, sciatic nerve pain

Neck/head pain progresses to right side.

The time it takes to get from one stage to another takes anywhere from 15 mins – 2 hours.

By this stage I am unable to walk with head held up, to look in someone’s eyes, without pulsating pain, my torso becomes scooped.

Bright light & noise become less tolerable.

Sitting helps for a short while but I get no relief from standing or walking but I feel that I ought to change my postural position regularly.

When I move from a sitting position to a standing position my entire head pulsates in agony I need to put pressure on my forehead to ease the pain and when possible put pressure on the left side of my neck to help ease the pain.

From previous history the best medication to control the pain for several hours at a time is 2 Pannadeine Forte + 1 Diazepam.

Diazepam is crucial for slightly relaxing my skeletal muscles. It releases pinched nerves but I’m not sure if that is the cause of the pain.

Causes are hard to determine, over the years I have accepted the pain is as a result of having Marfan’s Syndrome.

More specifically;

Scoliosis curvature

Dural ectasia pushing on nerves…

Poor posture 

Leaning forward to perform a task *

Hormone imbalance 

A full (hard) bowel 

I am ageing physically faster than my peers 

Marfan’s syndrome connective tissue deterioration

I have taken on less strenuous jobs. I have taken my time with my exercises but my muscle tone is disappearing. I had been coping without these type of migraines for the good part of several years, getting one maybe once or twice a year.

Whereas I rarley had to cope with them before, sometimes I get them several times a week. The only change to my life has been the loss of my muscle tone, heart failure, chronic atrial fibrillation and worse eyesight. All of these require me to tense my body and therefore create a situation that would bring on such a problem.

I am doing more exercise than ever before and I have always exercised since the start of 2003.

I can only attribute it really to the degeneration of my body. Plus the amount of physiotherapy I am doing is causing the pain. I am being asked to tighten my muscles especially my glutes, squeeze them hard. I don’t think this is appropriate for a Mafan person whose muscle is diminishing.

I believe strongly in exercise for good health, but these type of migraines that take a day, and then a second day to recover from.

I’m very tentative about doing anything physical now.

* GM: There is a Trennaism for “Leaning forward to perform a task”. She called it “leany do-ey”. She always knew if she did more that just a bit of leany do-ey she would be in for painful consequences.