After being told by my consultant a few months ago that I’m now at the top end of severe and that there’s nothing more they can do for me I felt very despondent. I brooded for a few days and then decided that she’s wrong. There must be something that can help. If she has given up on me then fine. I haven’t given up on me! I can’t afford to. I have a little girl who depends on me and looks up to me to be a good role model. I can’t just quit because of one person’s opinion. What message would that send!
So I’ve started my journey of self-preservation. I’ve been doing a lot of reading, mainly physiology as I am a physiologist! I find comfort in knowing why something is happening to me. I hate to be kept in the dark. I’ve read about lifestyle, diet, supplements, exercise and so on.
I’ve already changed my lifestyle dramatically but there is still more that I can do. My diet has been severely modified after finding that I’m allergic or sensitive to many foods. Everything is prepared from scratch. I tried many supplements but sadly it seems that my body doesn’t like them and they have all but one given me a flare up, some really nasty. That’s the problem with multiple chemical sensitivity. As for exercise, well I am trying to walk on the flat as much as I feel is safe. I still have to use a wheelchair though as some places are simply too far for me and I lay myself up for several days, and that’s if I can do it in the first place!
While listening to podcasts I looked up a book that was recommended but as it was written by an American it seemed to be mainly about insurance and that doesn’t apply in the UK. However, there was a book recommended in the comments for being more physiological and more about restoring balance again. I went ahead and bought the second one and am so, so pleased that I did. It’s an amazing book and explains so much.
What was this book, I hear you cry! It’s Adrenal Fatigue, The 21st Century Stress Syndrome by James Wilson (not the one from House, TV show!) Please note that this is an affiliate link.
This book has given me hope even though the questionnaires confirmed me as being really severe.
In essence, adrenal fatigue or adrenal insufficiency as it’s called in the UK, is where your adrenal glands are run down by cumulative stresses without sufficient recovery time. The stresses can by physical, emotional or psychological. Those of us who are battling chronic illness always have a degree of physical stress so any other stresses on top can run down our adrenal glands until we don’t have enough capacity to function properly.
The adrenal glands are the pyramid structures that are on top of our kidneys, hence the name. This is where we produce cortisol and adrenaline, the stress hormones. If our adrenals are run down then we have a reduced ability to cope with stresses and we become ill.
Symptoms of adrenal fatigue (insufficiency) include;
- fatigue that is not relieved by sleep
- general muscle weakness
- poor memory (I even had trouble remembering this one!)
- anxiety and low mood
- reduced sex drive
- weight gain
- hypoglyceamia and fainting
- salt cravings
When I look at this list of symptoms they are very similar to those of fibromyalgia and chronic fatigue syndrome (FMS/CFS). This makes me think that there might be a connection between them. In fact, I even wonder if it’s all the same condition but each of us presents with slightly different symptoms and severities.
The adrenals are part of the HPA axis (hypothalamus-pituitary-adrenals axis). We already know that the hypothalamus is messed up with FMS/CFS so it is plausible that the adrenals are also involved. I don’t know if they are cause or result but I feel that in my case they are involved.
The good news is that adrenal insufficiency can be helped with a low dose of steroids. I have often asked my consultant why I feel so much better on steroids (for psoriatic arthritis) as I have more energy than I can imagine, even though it is still less than healthy people. I was told that it doesn’t do anything for FMS/CFS and that I must have been euphoric on them. I have another theory, I really don’t think I’ve been euphoric on steroids but maybe they were helping underlying adrenal insufficiency and giving me a temporary boost.
From everything that I’ve read about adrenal fatigue, it seems to be ignored in general by doctors and only Addison’s Disease (no adrenal function) is acknowledged. This made me really nervous about seeing my GP but eventually I plucked up the courage (after several months) and saw him yesterday.
My GP was great. He sat and listened to my journey and reasoning, and actually agreed that adrenal insufficiency might be a problem. He admitted that he didn’t know an awful lot about it but was happy to refer me to an endocrinologist for testing. So now I have to wait for an appointment to come through. I actually felt encouraged for a change after a medical appointment. If I do have adrenal insufficiency then there is something that can help me.
I have found the bone numbing exhaustion, akin to just having given birth, to be the hardest part of my illnesses. I am pretty hardy when it comes to pain and only use painkillers when necessary. I think I’ve just got used to it. But the fatigue! Oh boy! The fatigue is actually what lost me my career and has stolen my quality of life. If I can get on top of this then I have really achieved the holy grail for me. I want so much to have the stamina to walk and go sightseeing, to play with my little girl and even to have sex all night long! 😉 You know what I’m talking about! It would be a dream come true. I would be the richest person alive. My quality of life would drastically improve.
So I’m at the start of my journey to recovery. I’m still making lifestyle adjustments, with the help of the book and my diet is being tweaked a bit more. I’ll keep you posted with what I find out and what the tests reveal.
If you have any suggestions or know anything about adrenal insufficiency then please let me know in the comments. You might have the missing part of the puzzle for me.
Love and spoons, Cath x