Well now, that was unexpected.
It had seemed for some time now that I had been abandoned by all and sundry from the medical professional. My pain consultant told me he didn’t need to see me again. My physiotherapist told me there was no point seeing him again. Occupational health had said it was lovely to meet me and she hoped all would go well. Even my doctor had given out to me for making an appointment to see her instead of getting my prescriptions renewed through reception. All I was left with was my wonderful support worker, Sue, who for personal reasons hasn’t been in contact now for at least two months. It seems as if the medical profession were more than happy to dispose of me despite the fact that my health was far from healthy. It seemed that it was rather up to me to work out (or rather continue to work out) how to handle having M.E. My future was uncertain but it was certain that the medical profession had had enough of me. A very lonely and frightening reality.
My pain consultant had made two referrals, really in his own words just to make sure there was nothing else going on. One was to see a clinical psychologist who spoke to me and looked at my records and declared me a model patient, that the rest of her patients should aspire to be like!
The second was to see a Rheumatologist. My pain consultant however was adamant that if it looks like a dog (i.e. M.E.) and barks like a dog then it must be a dog (M.E.). I therefore paid no heed to my appointment, attending simply to ‘be sure’ but knowing that nothing was really going to change. I had M.E. and this consultant just like all the others would tell me to just keep doing what I was doing and he didn’t want to see me again.
My appointment came on a bad day. I was feeling the worst I had felt for months. I had driven and walked too far the day before and I was paying for it that morning. By the time I reached the consultant, I was in a lot of pain and very fatigued. In hindsight, perhaps this was the best thing to have happened. There was no way this guy could simply dismiss me and say that nothing was wrong or say that I had M.E. and accept that it was okay for me to have to handle it alone. (I had already made me mind up to tell him that really I needed more support).
His questioning of my story was very different from previous medical professionals. They seemed to want a narrative – he rather wanted to know the progression of my symptoms and their timelines. He wasn’t interested in where I had been or whether or not I was working, he simply wanted to know my symptoms.
His next step was to get me to rank a series of very much M.E. symptoms (fatigue, dizziness, tingling sensations, brain fog, muscle pains) from 1 rarely to 4 everyday.
Finally, he did what I can only assume was a Fibromyalgia tender points test. His clear skill in what he was doing was obvious as he was able to pick up weaknesses in both my knees (hurt in a riding accident) and in my neck (sore for the last couple of months) – all without my having to tell him.
It was then the shock came. He told me that he didn’t think I had M.E. but rather something called Dysfunctional Breathing Syndrome or as it is sometimes known Hyperventilation Syndrome. I was vindicated in his statement that it was not a panic attack – they were very different. My doctor has spent the last ten months telling me I have panic attacks – despite my numerous times telling her that they were not!
To be honest much of the rest of our consultation was spent with me going (in my mind), “sorry, you don’t think I have M.E.?!” on repeat.
Apparently, I breath too many times per minute – he guessed about 20 times per minute while a healthy rate should be about 8 times. Later when I tested myself at home, I got rates from 17 – 30. All far too high.
Additionally, if you breathe in, then out, then hold your nose, you should be able to do so for at least 30 seconds. 15 – 30 seconds is a sign of a moderate breathing problem, 0 – 14 a severe problem. I scored 12 seconds.
The rating test he gave me was also highly indicative of it. He said a score of about 10 was completely normal. I, on the other hand, had a score of 36!
His conclusion then was that I had this Dysfunctional Breathing Syndrome with secondary Fibromyalgia – i.e the Fibromyalgia was caused by my dysfunctional breathing. By over-breathing, I wasn’t giving a chance to Co2 to convert the O2 into my blood stream – this therefore in layman terms carried my breathing problem around my body. This, in addition, means that my body cannot handle excess acids (such as lactic acid) and the minerals in my body that would naturally deal with excess acids in the short-term would by now be nearly gone if not gone altogether. This therefore explains the Fibromyalgia type pain.
The suggestion is that this all started after I had effectively been ill for about 6 weeks, with a series of bad colds culminating with particularly bad respiratory symptoms in my final cold. It would also explain how for the first two months of being ill, all I experienced was intense fatigue and breathlessness, at times acute sessions of hyperventilation or as I have come to know them collapses. After some time however breathing issues began to create pain issues in my legs and the triangle across my shoulders to the top of my neck.
Of course, there is no guarantee that this is indeed what I am experiencing. M.E. may still be playing its role. I cannot therefore afford to get too excited about a curable illness.
If he is right however then this is exciting news. Within six weeks to two months of specialist respiratory physiotherapy, I should be right as rain. Inconceivable. The best news of course is that my private health insurance will now cover the treatment – they did not cover M.E. This means that instead of waiting for two months for my NHS physiotherapy appointment that came through today, I will only have to wait a matter of a week or two. Theoretically, it is possible that not only will I be healthy again soon but I could even be running by Christmas.
My mother-in-law said the news, ‘floored her’ and I totally get what she means. I am only just beginning to come to terms with it. I had myself all set for a personal battle for recovery or at least remission from the worst symptoms of M.E. I was emotionally preparing myself for no longer being able to work full-time, perhaps even part-time. To have the future path that you had prepared yourself for so thoroughly changed takes time to get used to.
Although I must not allow myself to get too used to it – just in case.