Auntie Sceb

Paper crafting my way to an apocalypse scrapbook with some knitting sewing and cooking thrown in.

ME/CFS Recovery? Remission? Misdiagnosis?

on November 15, 2015

For several weeks now I have been feeling better.  I have been dancing Ceroc (modern jive), salsa, belly dancing and burlesque!!  I have also been walking in fact I walked 7 1/2 miles on Friday, worked Saturday evening, went to Ceroc afterwards and today walked 7 1/2 miles again.  I have no PEM (post-exertional malaise) and I have been consistently doing more, ie no boom and bust.  I don’t know what’s happened but I’m happy it has.  I want to make it clear now I started doing more because I felt better and able.  I didn’t do more and therefore felt better as in graded exercise.  I have some theories but let me show you my pics first from my walk round the local reservior.

Reservoir   Reservoir Reservoir and my shadow   Wellies Reservoir by night   Reservoir by night Reservoir by night

So what has happened?  I can’t pin point it exactly.  I will tell you what has happened to me but this is not meant as medical advice merely a dialogue of events.  It may be worth discussing with your GP if anything stands out to you.

1  I split up with my boyfriend and moved in with my sister.  Unlike my boyfriend my sister had no expectations of me and didn’t push me to do more than I could.  She just let me ‘be’.  Because I had no pressure I felt able to relax and I think I finally rested and my body was able to start to heal itself.  I compare ME to landing in quick sand.  Everyone (well not everyone but those not in the know) tell you to fight but actually I believe in ME this is what stops you getting better.  If you were to land in quick sand you know that fighting would cause you to sink so you would try to relax then gradually ease yourself out.  Instead with ME we are made to feel we’re not trying hard enough so end up struggling and getting stuck deeper.

2  I had been struggling with heavy periods for some time.  Sometimes my iron went low but often it didn’t but you have to think what is it doing to your body to make that extra iron.  It got to the point that I had finally managed to get back to working two days a week with ME but then once a month I would flood so badly I couldn’t work if my period fell on my work days.  I begged my GP for help as I just didn’t want to take more time off sick.  So I now have the contraceptive implant and take the contraceptive pill without a seven day break.  The result is I have no periods so no problem.  My GP suggests this may be related to my ‘unstable hypothyroidism’ (see 3!!) and that once it is more stable I should start having the 7 day break.  I suspect it may be related to endometriosis which my sister has just been diagnosed with.

3  I have had hypothyroidism for several years.  I have regular bloods but I usually have to increase or decrease my levothyroxine each check.  More recently I have found myself to be more stable taking a different dose on alternate days on my GP’s advice and taking it at night – usually it is recommended to take in the morning but as I work shifts ‘morning’ can vary considerably also there are several foods that stop thyroxine from being absorbed effectively.  These changes seem to have kept my levels within range. Though on higher does of thyroxine my levels were normal but my heart rate when up to 130 (normal 60-80) and I felt quite anxious!  My GP says that maybe I was misdiagnosesd with ME/CFS and ALL my problems could be down to my hypothyroidism yet still won’t refer me to an endrocrine specialist!!

4  My vit D was low enough to need on prescription on one occasion.  When my levels were within range my prescription was stopped.  I found my fatigue and my bone pain increased.  I now take vit D regualarly and whether down to the above or the vit D I have very little pain (now off Tramadol and Amitriptriline) and no fatigue.

So am I fully recovered?  I don’t know but I feel good right now and I’m happy for that and I’m going to make the most of it…


One response to “ME/CFS Recovery? Remission? Misdiagnosis?

  1. You are also looking fantastic 😄 really great news xxx


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