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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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  • sylvia8311
    sylvia8311 pam_87693

    Posted

    What is a ana
    • loxie
      loxie sylvia8311

      Posted

      ANA refers to antinuclear antibodies - a positive result indicates that antibodies are present but doesn't always indicate an autoimmune disease. PoTS is an acronym for postural tachycardia syndrome - in short an abnormal increase in heart rate after sitting or standing up. It typically causes dizziness, fainting, sweating and other symptoms.  Very similar symptoms to vertigo but comes on after movement.  Not so sure any of this relates to those with fibro, as PoTS doesnt cause pain.
    • sylvia8311
      sylvia8311 loxie

      Posted

      Wow thanks very helpful I'm going to my doc tomorrow I'm going to talk to her about this
    • pam_87693
      pam_87693 sylvia8311

      Posted

      It's a blood test to look for certain markers that may give your doc an idea of why you feel poorly
    • bronwyn97278
      bronwyn97278 loxie

      Posted

      Hi Loxie; yes this I agree with, too.   I feel that, perhaps, what we get with the Dizziness, ?could be referred to as a Form of POTS, but I don't get the Tachycardia....and not ALL the time, as do people who do have diagnosed POTS......sorry if this causes an upset and leads to further Deep debate...but do feel, for the sake of other Fibro/ME sufferers, that to mislead them with the added POTS label, should not be????   From what little I know re POTS...it means that when a pt stands from a lying/sitting position, their Blood Pressure drops and they get increased heart rate (usually upto 40 beats per minute more than their lying heart rate)....I can say that I had an extra mobility as a child in One Thumb, but it stopped being so after hurting it playing Basket ball (nothing major...just sore and swollen for a few days)....I have 2 nieces and a grand-daughter who all have the same, and My father was Definately Hpermobile...could do Lots of things that others couldn't do....but Never had ME/Fibro...was fit as a fiddle until he contracted his Pancreatic cancer at the age of 72....and Definately No POTS....I feel it needs a lot more research for me to follow through on this one.................Bron
    • pam_87693
      pam_87693 sylvia8311

      Posted

      A blood test, to check for inflamitory markers. It can go up and down but in the UK after a reasonable high titre most consultants don't bother to do it again. It is a test for autoimmune problems. 
    • pam_87693
      pam_87693 bronwyn97278

      Posted

      Hi then yes if you were Hypermobile as a child you have inherited a slight genetic defect of your connective tissue. I was Beighton 9/3 now. You must remember pregnancy hormones indeed all female hormones play a part. So of course does age, not helped that the entire medical profession didn't realise that EDSIII and Hyoermobile were exactly the same problem until 2013!!!! I has been a HUGE blunder! So if you are either 1) Hypermobile historical or now EDS is a small imperfection of the connective tissue. 2) you have an autoimmune disease of the connective tissue shown by a blood test which gives you a positive ANA you may have POTS. There are lots of AI diseases but many target a since organ. However the ones quoted in POTS UK are autoimmune connective tissue diseases. Of course there are many other causes of POTS please look at the UK POTS site. You may have high BP or low BP you may not feel faint, indeed you may not have and blood pressure or heart problems, but Fibromyalgia with an ANA is saying your body is out of balance, because of that you have tiredness, pain, exhaustion, be bad tempered, not coping with stress, have been told you have anxiety, depression, it's in your head, it's a mid life crisis, feel dizzy some times, feel better when in bed, feel worse when in bed, wonder if you have heart problems, have cold extremities, Raynaulds, tingling in your hands and feet, have headaches, migraines, allergies, you may have POTS!
    • bronwyn97278
      bronwyn97278 pam_87693

      Posted

      Hi Pam; sorry, don't have any of the above listed problems...."feeling better/worse in bed, no heart probs, don't suffer from abnormal cold extremities/Raynauds/allergies.....used to get migraines with my cycle, and only get headaches (minor) when neck muscles too tight....I know one other lady on forum who says she has Sojgrens and another who has Raynauds....but not enough to be able to put them all into one category.........I will continue to research what you have mentioned....but at present, feel I have found the Right treatment for myself.....thankyou..Bron
  • chickabee
    chickabee pam_87693

    Posted

    Hi Pam,

    Excuse my ignorance, but how can you be 'hypermobile' with fibromyalgia?  The onset for me was a gradual slowing down of all mobility.

    Am due to see the GP Friday, so will ask about the ANA marker

    Thanks

    Chickabee.

    • pam_87693
      pam_87693 chickabee

      Posted

      OK I was born Hypermobile (double jointed) of course nobody thought it was anything to worry about then! It isn't BUT if you then start to feel tired, your body aches, your head aches then you need to see a rheumatologist. I started to feel faint after my last son's birth 29 years ago, I was diagnosed with ME, then the problems got worse, chronic fatigue syndrome. Finally Primary Sjogren's with a positive ANA but I don't have the SS markers loads of us don't but I do have Hypermobility syndrome and POTS. When I explained this all to mt rheumy she agreed with me, and added fibromyalgia which I actually don't think I have as I have aches but not sensitive skin. However I do have Hypermobility Syndrome and POTS! all these are in rheumy except the POTS, but if you are anxious, very dry, or soaking wet if you do anything it could be POTS. Of course this is breaking science in the UK I would urge you to look at both POTS UK and the BSSA on your search engine. The BSSA is the charity for Sjogren's which means we offer have dry eyes and mouth. 
    • kaz_40
      kaz_40 pam_87693

      Posted

      I have continually dry mouth and eyes all this is very interesting thank you for sharing it with us
    • pam_87693
      pam_87693 chickabee

      Posted

      Yes exactly just that that you are feeling rundown and tired so you MUST tell your new GP and don't be fobbed off that it's all in hour head, it might be but not the way he or you are thinking if you have tinnitus ringing in the ears it's not your ears you are hearing your brain!
    • pam_87693
      pam_87693 kaz_40

      Posted

      Yes Sjogren's often starts with the Sicca symptoms then fibromyalgia and finally if you get swollen glands you may have a positive Anti Nuclear Antibody test if that is positive you may have autoimmune disease  
    • Meg53
      Meg53 pam_87693

      Posted

      Wow Pam, this is fascinating, so thank you. I have a positive ANA but none of the markers for Lupus. I have all the usual fibro symptoms, chronic fatigue, dry eyes and mouth and sensitive skin. Must look into this further.

      Meg

       🌺

    • pam_87693
      pam_87693 jeanne81532

      Posted

      The sicca symptoms of Sjogren's Syndrome are dry eyes, mouth, skin, vagina, 
    • pam_87693
      pam_87693 chickabee

      Posted

      I was born with EDSIII now calledEDSHT it is an inherited connective tissue imperfection. If you have a positive ANA with a high titre you may have a connective tissue disease. Many AI diseases start with people feeling run down, in pain, tired achy, they don't have the get up and go they once had. They may feel anxious, isolated, frightened, dizzy, have tinnitus etc. If this continues they should see their GP, and get their bloods checked out. If their inflamitory markers are high, the GP may wish to do further tests. A positive ANA with a high titre is an indication of an auto immune disease. Fibromyalgia is common in AI diseases. In my case I inherited a connective tissue imperfection, then contracted an AI connective disease
    • bronwyn97278
      bronwyn97278 Meg53

      Posted

      Hi Meg and others; I'm not sure if any of you are interested (you may not even be able to connect to sight, as I Think it's an Australian Foundation); but I have been on to a website called Fibromyalgia Network....which I find to be a Very good sight.....it explains all overlapping conditions, what Can Overlap, treatments, how to manage with family etc...very informative....if I could send you what I have downloaded as files, I would put the information on here for you all to read.......but do try......I know other countries will have similar sites, and probably have similar news......it even has a poem similar to what others have put here for us to read,,,,how to tell others about us.....good reading.......biggrinBron
    • pam_87693
      pam_87693 kaz_40

      Posted

      OK then Kaz you must go to your optician and ask him to do a Schirmer Test. As him to do a tear break up test too if he is able. IF you have dry eyes Schirmer of less than 5mm is positive, or if you have more tears than 5mm but your tear break up is bad, your GP or optician might suggest you see an opthalmic consultant. It is most important that you keep dry eyes healthy. It isn't anything to worry about, but your GP will be able to advise you upon the most suitable products. If your mouth is dry too, ask your GP to do a blood test for inflamitory markers. These are your ESR, CRP, and ANA ask him to check your thyroid function too. 
    • pam_87693
      pam_87693 Meg53

      Posted

      Then you need to see a rheumatologist again have they checked you for Sjogren's? I don't have either the Sjogren's markers or probably the Lupus ones either, not sure if anyone has ever bothered with SLE. However I have had the sicca symptoms of Sjogren's age 20, now at 68 I am trying to explain to my consultant why I have seronegative Sjogren's. For anyone in the UK and has the Sicca symptoms of Sjogren's Syndrome, the dry eyesand mouth I will explain how I have arrived at this. My dad was Hypermobile. My mum had Psoriasis, I then had PCOS, 4 sons, 1) SIDS at 11 weeks 2) EDS 3 posriasis 3) EDSHT Beighton 9 with Plantar fasciitis 4) EDS3 IBS after his birth I started to feel faint at 39, then Primary Sjogren's with a positive ANA 48, hypothyroid 58 now Primary Sjogren's, hypothyroid, Psoriasis, PsA, Hypermobility Syndrome, Fibromyalgia, and POTS
    • pam_87693
      pam_87693 chickabee

      Posted

      Father had EDSHT I was born EDSHT Beighton 9 

      my mother had Psoriasis, from her I developed PCOS 

      I now have Primary Sjogren's, Hypothroid, Psoriasis, PsA, Hypermobility syndrome, Fibromyalgia and POTS 

      Dyautomnia my body is totally out of balance!

    • Meg53
      Meg53 pam_87693

      Posted

      Thanks Pam, will look into it, My Son gets psoriasis. 😀
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