I thought it was the dish that ran away with the spoons?

Well, in the nursery rhyme it is but for me it's POTS!

Click this for an explanation of POTS

And this for an explanation of SPOONS

Monday, 5 July 2010

A week on florinef...

My first week on florinef, I was exhausted and downhearted. I think everything was just getting to me, the fact my symptoms this year have been so much worse (despite having had POTS for the past 9 years, because it took me that long to find out what it was) was worrying me that I was going downhill, once you let fear in, you just start to suffer more, which is why I like Nikki's favourite quote "He who is afraid to suffer suffers already from his fear." I want to suffer as less as possible so I'm trying to just get on with life and not be afraid.

I don't think I am going downhill though, I just have different symptoms that are more noticeable. I had symptoms of fatigue for years, used to have nausea but thankfully that one went away, used to have severe pelvic pain, that one went away- so really it's just a change of symptoms, and if anything I'm much better than I was, the only thing is I am also much busier than I was, so perhaps that's why I am feeling as if I'm not improving, because I'm doing more and thus feeling tired a lot, but at least it's because I've been doing things and not like it was in the early days, tired just from getting out of bed!

One symptom I do HATE which I wish would go away though is my tremors. I get this weird feeling that's similar to the one you get when you need to stretch- that feeling of tension that's usually relieved by stretching so the stretch feels good- well I get that tension feeling but it's not relieved- it just kind of builds up in my chest into this feeling of 'too much energy, not enough air' in there- so I feel like I can't breathe enough oxygen. I guess it's the 'fight or flight' feeling, because it makes me feel like I need to move. I can't sit comfortably with it, it makes me want to keep moving to alleviate the feeling. I only ever get it when I'm still. A lot when trying to sleep (which disturbs me) and a lot when sitting. What's also horrible about it is if I try to just ignore it, my body gets these odd jerks/tremors. My leg will twitch/jump or my arms kind of go violently in and my shoulders shrug. I don't do this myself, it just happens to my body, and it's really annoying!

One of the downsides of florinef is I've noticed I am feeling this way more often. But I also noticed in little bits and bobs, my head is clearer and I'm not as tired/fuzzy, so I don't want to give up. Although these 'twitchy/wired up' feelings are actually my least favourite symptom, so if I can't find a way to soothe them and they continue to be this bad, I might have to see about a medication change. But I'm going to give it time and hope that maybe something else has caused the tremoryness to be worse, like the heat and a week of deprived sleep due to being too hot.

I am possibly going to have a very busy next week as well! I have the Summer Ball of the walking group this coming weekend, then next week my boyfriend is on about going to watch a practice golf championship in Scotland together, so that would be over 5 hours of travelling, staying in a B and B, walking around the golf course, watching the golf, another night at the B and B and 5+ hours home, I also made arrangements to see a friend (before I knew about this golf thing, otherwise I wouldn't have made those arrangements and would have just rested!) and, if possible, my bf might be moving house that Friday (a week on Friday) so I'd be helping with that. If he's NOT moving that Friday (it depends how fast solicitors can get the paperwork done) I am going to a POTS group meeting- yes, real life potsies meeting in my home city!

So that's a rather intimidatingly busy line up... hope I can gather the spoons for it!!! I am going on holiday soon after, so I know I can rest, rest, rest for two whole weeks, thankfully.


  1. Wow that is a lot! And really exciting about the pots group!! it would be awesome to meet in person other potsies! the closest one i know of is shannon and she's still like 3-4 hour drive away lol. good luck and hope you have tons of spoons for the week!

  2. Thanks for sharing your experience with Florinef, my doctor just recently started considering it as an option, but wants to wait until my symptoms worsen. It's good to know what to expect. Sounds like you are going to be busy, be sure to listen to your body.

  3. I'm glad it's helping some for you. As I said to you I've been on it 4yrs now and it means I can get out of bed. I found any side effects mostly dissipate in about 2 weeks (same when you go up in dose) so you might find it settles down some more in a week or so. The jerks are annoying, I get them a lot, I saw neuro about it but it turns out it's just that pesky blood flow thing. Have you tied yoga? I find when I do it regularly it helps a fair bit, and when I get lax it starts up worse again. Make sure you keep up with the salt and water as it needs these to work properly (plus the potassium). Oh, and I found Vit D and magnesium supplements help a lot with the muscular stuff. I'm excited to hear you have a POTS group nearby. Let us know how it goes. :)

  4. Hey Michelle, I was actually attempting to get into my yoga practice again, I started it years ago when I was 17 and loved it, but what with one thing or another, haven't kept it up. It helps so much though, helps stretch my back (which aches a lot) and eases muscle and joint pain and is also relaxing and strengthening. My problem is finding a good time to do it, my best time is evenings but I'm usually still digesting food! Then by time that's gone I feel too tired! I'm not making excuses for myself as I WANT to do it!! I might join a class when I'm back off my hols (too busy the next few weeks) and do it at least once a week then.

  5. During winter I do not like to take florinef even though I have adrenal insufficiency and low normal aldosterone levels.

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