Hallo again. Thank you for your message. I apologise for not replying sooner but I was extremely unwell for the past two weeks. I ended up going to see a GP while on holiday and had some blood tests done, showing nothing (other than vit D3 deficiency). I have low BP but this I already knew. Some of the dizziness apparently may have come from neck problems and I was sent to a physio. Some of the symptoms were also "blamed" on the heat (high thirties).
Over the past two years I also had several blood tests (incl. thyroid and all you have listed, and a head MRI (due to lingering labyrinthitis) but all was ok. But as I was feeling progressively worse, I was given the diagnosis of CFS (in the absence of any other cause).
However, I have had similar "crashes" in the past, but this one was definitely the worst. Usually they are brought on by overdoing things, stressful periods, and/or prolonged lack of sleep.
This time there was none of that, instead plenty of rest, much better and longer sleep, healthy diet etc. So no apparent trigger. Yet I have been feeling simply awful. It is difficult to explain how this is affecting my life - I was once active (full time job, gym 3-5 times a week), now I do not go out of the house (due to extreme weakness, dizziness, and not knowing from one minute to the next how I will feel), and as I have 3 young children I feel guilty, frustrated and angry that I cannot be a "proper" mum to them. So forgive me trying to get some answers and some help, but I am desperate! I am trying to look for answers anywhere I can. This time you have the "short straw". I just hope that maybe one day someone will say "yes I think this sounds like ... and you need to do ...". I do not expect a miracle, just an idea of what I need to do.
This episode started like this: shorter than usual night's sleep after overnight travel, but felt "ok", following by day-by day worsening of my fatigue and feeling increasingly weak and faint, despite sleeping much better and longer than I do at home), my BP was dropping and was around 90ish over 50-60 with 65bpm, so I though maybe it's the heat and my BP. Then it got even worse with me spending several days unable to be upright due to weakness, but my BP was 120*/70-80, with 80-90 bmp for a few days. It was an overwhelming feeling of needing to lay down and do nothing as even speaking was too exhausting. My arms and legs had pains like after vigorous exercise and felt very "wobbly". My brain was foggy and I couldn't concentrate or focus. Additionally, at the "worst" times, my tongue goes white (not due to anything on my tongue, just the colour fades from red/pink to white), which can last from a few minutes to a few hours, usually while my BP and pule are higher than normal, and that is when I feel most like "collapsing".
It has improved minimally gradually and now that I am home I can function on a very basic level (get up, give the children breakfast, watch them play, make dinner (in stages, not all at once), put them to bed. But I cannot continue to function like this! I need to know why this is happening and how I can improve it.
Additionally, around the "worst time" is when I have my "period" (several days of bleeding or spotting, on average every 3 weeks, despite having a Mirena coil). During that time, and since, I have had the feeling that my legs (especially the back of my thighs) are swollen and painful, certain veins feel as if there was a bruise there. I keep thinking that this may have at least something to do with it.
I am sorry I am being so "pushy" and time consuming, but I really am desperate. I feel like I am slowly dying at times as my body refuses to function normally, and being told that there is nothing wrong that anyone can see or that my symptoms are too vague, is the most distressing.
Please please give me your thought. Or perhaps suggest where I should go next. As I said, my GP has ran tests showing nothing and also doesn't know what else to do.
P.S. My apologies for possibly sounding "angry" earlier, but I really am desperate and frustrated...