Discussions By Condition: I cannot get a diagnosis.

14 Years Chronic Illness.

Posted In: I cannot get a diagnosis. 0 Replies
  • Posted By: dami10
  • May 29, 2009
  • 10:38 AM

Hi, I am in medical no-man's land and any advice will be greatly appreciated:). Due to the nature of the beast, this is a long post.

In July of 1996, I had just finished my 2nd year at university. I was also a keen long distance runner, and was training very, very hard for a half marathon.

During a particularly intense training session, I had an exercise induced asthma attack. I had heard that this can occasionally happen.

I went to my GP who prescribed a salbutamol inhaler for me. I didn't have any more asthma attacks.

However, I went and did something which I now regret more than anything else in my life - I used the inhaler whilst hill-training.

I went to bed as normal. At about 3 in the morning something happened. I was suddenly forced awake by a feeling of acute shortness of breath and a dreadful rigidity in the posterior region of my rib-cage. It wasn't an asthma attack, nor was it a panic attack.

Nearly fourteen years on, and the condition has remained. My primary symptoms are a deep muscular spasm in and around my ribcage which has been rendered quite rigid on deep inhalation and exhalation with an associated constant shortness of breath and transient nausea. It has been like this every day and night for nearly fourteen years.

I look dreadfully ill and pale (to the extent that people have asked mockingly if I am a drug addict and ostracise me). I have suffered severe muscle wasting in my deep layer muscle group, particularly in my legs. I now look like two body halves welded together.

Any kind of physical activity leaves me feeling short of breath and sick - even after fourteen years!

My symptoms are invariably worse when I lie down, so I miss alot of sleep. Couple of nights a week is not unusual.

I often wake up with a headache, feeling extremely groggy and confused. It feels as though I have been poisioned.

Needless to say, I haven't been able to work for most of the last 14 years.

I was given a diagnosis of chronic fatigue syndrome after the first year of this illness. However, I believe I have been misdiagnosed.

I believe the following has happened to me:

1. My levatores costarum muscles have gone into a permanent spasm. These are accessory respiratory muscles which aid in the expanding and contracting of the ribcage. They are attached to the 'wings' of the vertebrae and the posterior ribs. They are short and of massive contractile strength. Although skeletal muscle, they are under the control of brain-stem nuclei.

2. This has caused a permanent contraction in posterior, mid-thoracic area of my ribcage (two osteopaths have confirmed that my spine has a reversed curvature in this region).

3. Lung tissue in this area is being permanently compressed, affecting gas-exchange. Thus, no matter how deeply I breath, I still cannot get enough breath.

4. My PCO2 level has risen (this is a measure of blood acidity. The normal range is 36-44. Long distance runners have low PCO2 levels, say 36, 37, 38). About 3 years into my illness, a blood-gas test showed that I have a PCO2 level of 44. Normal, but high).

5. Mild respiratory acidosis has ensued. Exercise intolerance, muscle wasting (acidosis can cause apoptosis (cell suicide) in muscle cells), shotrness of breath, nausea, and cognitive decline.

I am now 33 years old. I have been like this since I was 20. It has ruined my life, and I cannot see the situation improving.

I have given up trying to gently suggest to the medical establishment that despite being within the normal range for PCO2 (44), I may have suffered an acute rise from say 37 or 38 (long distance runners have low PCO2 levels) which I am consistently failing to adapt to physiologically. This is despite the efforts of the blood buffer system (bicarbonate levels increase to offset acidity rise).

All I know is that I am ill every day and night of my life, and I'm running out of the mental resources on which I have been relying to keep me going through this.

My guess? I misused the salbutamol inhaler. It allowed me to overinflate my lungs during a training session. This, in turn, damaged central (brain-stem) control of the Herring-Breuer reflex (which normally prevents over-stretch of lung tissue). As a consequence of this, the central inhibitory regulation of the levetores costarum muscles has been damaged, and they have been allowed to go into permanent, disfunctional, spasm.

I know I have virtually no chance of convincing a doctor of this. My brother-in-law is a GP, and he thinks that even if this is the case, by buffer system should be doing its job.

That's fine, but nonetheless I remain chronically sick and I need help and advice.

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