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Yes all you describe is typical POTS

Posted , 8 users are following.

pam_87693
pam_87693

If you are Hypermobile. If you have chronic fatigue, fibromyalgia and ME I think personally they are exactly the same thing, I have been diagnosed with all 3, if you feel anxious, tired all the time, if you have an ANA marker in your blood you have POTS! You can have POTS from being diabetic, being an alcoholic, loads of other things but for the fibromyalgia type things it's now called POTS which is that you feel dizzy faint sweat etc you DO need a positive ANA 

2 likes, 68 replies

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  • kaz_40
    kaz_40 pam_87693

    Posted

    can you describe what ANA marker is please I have fibro Me and Ms diabetes thryroid problem high blood pressure asthma 
    • pam_87693
      pam_87693 kaz_40

      Posted

      ANA is a marker for certain information it is Anti Nuclear Antibody test, just a blood test
    • kaz_40
      kaz_40 pam_87693

      Posted

      thank you will have a word with my gp about it many thanks
  • kaz_40
    kaz_40 pam_87693

    Posted

    can you explain hypermobile with fibromyalgia for me please 
    • pam_87693
      pam_87693 kaz_40

      Posted

      Hypermobile means you were born with bendy joints Fibromyalgia is when your body gets tired, the skin can be painful if touched
  • sylvia17461
    sylvia17461 pam_87693

    Posted

    I agree if you have been "diagnosed" with ME/CFS and fibromyalgia they are for the most part the same thing but I strongly disagree with the pots !my belief is you have  hypothyroidism undiagnosed and not treated  hypothyroidism under treated or thyroid hormone resistance undiagnosed and not treated !!! Thyroid disease is one of the most misdiagnosed illnesses because blood tests have been proven over and over again to be completely unreliable ! Thousands of patients are suffering the most dibillitating symptoms because doctors and endos stick rigidly to blood tests no matter that these symptoms point to hypothyroidism so they are left to suffer with no light at the end of the tunnel. 
    • pam_87693
      pam_87693 sylvia17461

      Posted

      Yes I agree with that too, but they have NICE guidelines and that is that! I went to endercrinolgy a few weeks ago all negative because while the young consultant had heard of Hypermobility he hadn't of POTS, I left him the information so hopefully he WILL understand when I see him next, but as I am going for autonomic testing I think I will be finding out as he didn't do the test I wanted him to do!
    • pam_87693
      pam_87693 sylvia17461

      Posted

      Yes you are right but you need to know what is causing your thyroid problems! My thyroid burned out as I had what is now called PCOS. This had now become a minefield. In my day it was called Stien Leventhral there is a strong relationship between it and Psoriasis. It is inherited but I cooked from scratch and have always eaten healthy food, despite that as it went undiagnosed because of failure of previous GP to write notes, now I am Hypothroid as PCOS causes insulin resistance and on a return to endocrinologist. My bloods are normal.
    • bronwyn97278
      bronwyn97278 pam_87693

      Posted

      Hi Pam.....are we talking PCOS or POTS....having read all inputs upto here, am getting confused????.................Bron
    • pam_87693
      pam_87693 bronwyn97278

      Posted

      we'll both in my case! However I was born Hypermobile felt odd as a child (scoliosis) only found 2 years ago! Secondary POTS to EDSHT. Then I developed PCOS from my mum with Psoraiasis (there is a connection) it causes insulin resistance. You put on weight and gradually it burns out your thyroid! With my first son I had preeclampsia (am told there is an unto immune connection) with forth son I had Hyperemisis Gravidarum for the entire pregnancy. I started feeling faint, 9 years later Sjogren's with a Pos ANA by this time I was feeling awful, tired cold, no energy, then thyroid burnt out! So I am Hypermobile with secondary POTS, I have Sjogren's with secondary POTS. IF you look up POTS UK you should understand 

       

    • bronwyn97278
      bronwyn97278 pam_87693

      Posted

      Hi pam; I think he would have known re POTS, but maybe not in relation to Fibro ME etc.....every nurse/enrolled nurse knows re POTS......please don't get too defensive, we know you are trying to guide others to this awareness, and we are all in this with you.............Bron
    • pam_87693
      pam_87693 bronwyn97278

      Posted

      Well that's wonderful neither my GP or any consultant knew about Hypermobility and POTS, they do now, however I now have Dyautomnia!
    • pam_87693
      pam_87693 bronwyn97278

      Posted

      I have inherited BOTH!

      Father had EDSHT

      Mother Psoriasis which gave me PCOS,

      I had 4 sons 1) Cot death 2) EDSHT Beighton 3 3) EDSHT Beighton 9 4) EDSHT Beighton 3 IBS

      Both EDS and PCOS are INHERITED but as yet NOT understood. 

      EDSHT was NOT thought abnormal until 2013 

      PCOS was called Stien Leventhrall in my day. 

      It was considered to be a fertility problem it ISNT 

      IT IS an inherited DISORDER of the ENDOCRINE SYSTEM 

      It leads to infertility, obesity, hypothyroidism, metabolic syndrome and is a 

      LIFE LONG DISEASE NOT A FERTILITY PROMBLEM

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