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Author Topic: Help! Has anyone here been diagnosed with ME/CFS  (Read 2944 times)

prestige

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Re: Help! Has anyone here been diagnosed with ME/CFS
« Reply #15 on: November 09, 2018, 03:24:40 PM »

Wow ladies, thank you for your replies and sound advice.

I have not gone in to work today and have put my feet up! I tend to sit for a few hours and them pootle around the house, which makes me feel a little bit better.

I am dreading Monday morning, especially as hubby will be away for 3 days  :'(

I work part-time Monday-Friday 9 to 2.30 but the work can be full on some days. >:(

Thank you once again ladies. Just being on this forum, makes me feel a lot less isolated, fearful and anxious. Dr Google is definitely not my friend!
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Donna-paul

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Re: Help! Has anyone here been diagnosed with ME/CFS
« Reply #16 on: November 09, 2018, 05:39:50 PM »

Yes drs always says levels satisfactory but the Vit d support group on fb said my folate is really low 4.6 my ferritin is lowish 43 but my b12 is high 911. My Vit d was 39 they say need to be 125 or 200 if have autoimmune. I'm due for update blood test but dr only do once a year so may have to pay as I feel my Vit d has dropped I felt better when it went up to 94! I'm on low hrt oestrogel 1 pump and progerstone all the time as I get terrible migraines if try to take 10 days as consultant says I'm sensitive to hormones changes and levels. Could feel better but still trying Sparkle what hrt do you take?
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Katymac

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Re: Help! Has anyone here been diagnosed with ME/CFS
« Reply #17 on: November 09, 2018, 07:33:13 PM »


I have not been diagnosed as having had it but I have had fatigue, aching joints and numerous viruses  - when a child, persistent chronic tonsilitis, persistent cold sores, scarletina (a version of scarlet fever) mumps, german measles, and rheumatic fever and glandular fever  (so I could well have had Epstein Barr as well for all know, its in the herpes family) all by the age of 13!  I was on antibiotics from the age of 2 until the took out my tonsils at 12 - which is not good!

In 1998 when I was 26 my GP said he thought my ongoing problem of fatigue, aches and chronic depression was CF/ME (ME in those days was called Yuppie flu!) and said there was nothing he could do to help and there was a book I needed to read.  I have to say he was quite enlightened for his time because in 1998 they said it didnt exist and it was all in our heads.  Needless to say I have had those symptoms all my life since then but

2 years ago I was diagnosed with fibromyalgia, however, I have since found out from being on my meno journey that a lot of my problems in my life have been hormonal and hormone influenced. The list of "scary symptoms" of meno is very long and comprehensive and easily mistaken for other diagnosis such as fibro and ME or CFS.  I know I dont have fibro or CFS or ME.




Goodness me this could be me! I had Mumps, Measles, Chicken Pox, German Measles, Scarlartina and Whooping Cough all in an 18m period Then recurrant toncillitis until 21 when my toncils were taken out

CFS/ME at 26, FM at about 42!!


Don't worry Prestige - take it easy - take time off work - pace yourself (can't emphasisie that enough) the more you listen to yor body and rest the better
I second Methyl Folate - I take that B12 and Vit D all in pretty high doses and over the last year I started cycling, Yoga and ballroom dancing after a 20 year hiatus - I think becuase of the supplements (I also take Magnesium, Zinc, Potassium and K3 (at least I think it's K3 I'll check tomorrow as I'm already in bed)
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Ladybt28

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Re: Help! Has anyone here been diagnosed with ME/CFS
« Reply #18 on: November 09, 2018, 07:51:13 PM »

Hey Katymac - I thought I was just a generally sick person and a bit weird so its nice to know it wasn't only me - How are you now?

See when you say CF and FM - It makes me ask the question now - was it/is it or is it hormone related all along?
 - cos for me I am pretty sure there was a hormonal basis for it and also gut issues from taking antibiotics for 10 years straight when a child before puberty.  I have always described it like putting the wrong chemical in a piece of machinery or the wrong oil in a car - it upsets performance on all sorts of levels plus you do it before or around puberty something somewhere has to be upset?  Anyway I have had plenty of Dr's laugh at me for the gut theory over the years but now I think certain studies prove it can be a problem and it is becoming more mainstream.  If they had listened they could have got ahead on it by about 30 years!

How hormonal it really was has only come to light through my menopause issues. 

I agree, Prestige dose up on all the supplements you can - if your body needs them it will use them and if it doesnt - you will expel what you dont need - cant do any harm at all.
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Katymac

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Re: Help! Has anyone here been diagnosed with ME/CFS
« Reply #19 on: November 09, 2018, 08:02:58 PM »

Sorry to hijack Presitge but this is fascinating to me

Definitely gut related I have horrific IBS 12-15 times a day - the reduction in going led to seeing the GP which led to the cyst being diagnosed my Ovaries going and the Menopause starting!

I was tested 4 times in 3 years for Glandular Fever and was never positive

My brother has RA - same symptoms pretty much as me - but diagnosed in Sweden - first diagnositic test used was a stool sample

Vit D has maximum levels so read up and make sensible decisions - the others are pretty OK tho'
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