A diagnosis is not the end of things. It can be the start of your commitment to getting well, but the variety of difficulties and differences, the people placed within the ME/CFS label suffer is wide. This can be true of any health crisis and chronic illness. In a way the diagnosis is the start of the journey and the end to whatever that wasn’t working about you and your life, that went before.
However there seems to be a different version of something similar in each case, although there are certainly common markers to the symptoms and personality types that are diagnosed. Some cases are more simple and others more complex. Mine has been the latter situation. However, not wanting to underestimate or make light of the situation, even with the simple cases of ME/CFS, it can still take a vast amount of time, likely years to recover.
Finding out what is really going on for you, biologically and emotionally is very important. The main areas to rule out first, and at little cost to you, are vitamin and mineral deficiencies, which a large amount of people with ME/CFS seem to have, in addition to the staple immune and nervous system irregularities. In my case I have also found imbalances within my endocrine system. My hormones are imbalanced, and so I am addressing this with a specialist soon, after being quite disgusted at how limiting the service is within the Endocrinology department on the NHS.
You have to come at your malfunctions equally and to be effective, generally at the same time. That means, coming out of hyper arousal and keeping the nervous system calm so any brain and spinal column inflammation can begin to repair, whilst supporting and healing your impaired immune system, not stressing the digestive system, rebuilding your adrenal functions, which should, in turn, assist with better cardiological functioning. Furthermore, getting a detailed understanding of what is going on with your hormones so that things can come back in to balance. Hmm sounds simple right!? Exactly, it takes a great deal of effort.
I’ve added a list of my up to date, “known” personal abnormalities below, which may be helpful to relate to. The NHS, only takes you part of the way, in most cases private testing is wise. You can do this through a decent registered nutritionist, a specialist clinic or GP. I have used the awesome, Tanya Artus, check out her website. I’ve also used the Optimum Health Clinic in London, their long distance programmes were great when I was housebound. Also I’m soon to be seeing specialist, Dr Hembry, located in Bristol, who works with a similar approach to Dr Sarah Myhill. Although I am much further along the lines in my recovery, I’m hoping her help in terms of bio-identical hormone balancing, will be the last piece of the puzzle I need to address the migraines and sleep issues I still struggle with frequently.
Please note, this is not a symptom list, it’s simply detailing known irregularities which have shown up through testing.
- Low blood pressure, occasional night-time pauses
- Multiple brain white matter legions, (originally thought to be demyelination / MS, then passed off as potential chronic vascular migraine).
- Iron deficiency
- B12 deficiency
- High serum cortisol, (intermittent but regularly well above normal limit on both NHS and private tests)
- Below normal oestrogen
- Below normal progesterone
- Below normal DHEA
- Below normal secretory Iga
- Borderline Hyperactive thyroid
It may seem taxing and expensive to get your own picture of things, but try to embrace and enjoy becoming your own private health investigator. The work will be worth it when you start to function better and feel vibrant again and you know what is happening for you, rather than being palmed off or left in the dark.