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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 

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  • Sassylass
    Sassylass pam_87693

    Posted

    Pam,

    Because of some other comments you've made regarding POTS and autoimmune disorders I've been doing some research.You have been telling many people who have any type of autoimmune disorder that they most assuredly also have POTS, which stands for Postural Orthostatic Tachycardia syndrome. You describe it as something that makes you feel tired or dizzy. I could see why Anyone who is searching for answers to why they feel tired all the time would definitely want to look into this, and YES it has been associated with SOME Autoimmune disorders. You also stated a positive ANA. Titre was a necessary indicator for POTS.

    I do not believe it says anywhere that a positive ANA Test has ANYTHING. at all to do with POTS.

    Postural orthostatic Tachycardia is more than feeling dizzy and tired, and there are certain tests to be done.

    Everyone who has autoimmune disorder, or feels dizzy and tired does not have POTS, anymore than everyone who has dry mucus membranes has Sjogrens

    And just to clarify, POTS is an Autonomic disorder, not an autoimmune disorder.

    I felt the need to point these things out Pam, Because I, like many people, have a positive ANA titre, and Chronic Fatigue Syndrome. I am just beginning the potentially very long search for the source of my positive ANA and felt that I should say that sharing knowledge is what we are here for, and you seem very knowledgeable, but

    There are opinions and there are facts.

    • pam_87693
      pam_87693 Sassylass

      Posted

      You are quite right POTS is a disorder of the automatic nervous system, to put it simply your body is out of balance. This can be caused by many problems. You Get POTS with diabetes, alcoholism, some drug reactions the list could go on. With relation to the young women with fibromyalgia they could have POTS because they may be double jointed, however while the most likely AI diseases are the connective tissue diseases SLE, Sjogren's and APS or if you look in POTS UK with Fibromyalgia as long as you have a positive ANA test which is done to see if the body has turned upon itself. I hope this clarifies you and I would suggest you look up POTS UK. You can also get POTS post an operation, trauma, sepsis, childbirth etc it doesn't mean you feel fain, merely that your body is out of balance. I was born Hypermobile but my POTS didn't start until 29 years ago after the birth of my last son. I am very poorly at the moment I have been diagnosed with dysautomnia actually, when I get by 3 days of testing I will know more. Please look at POTS UK
    • pam_87693
      pam_87693

      Posted

      And yes I was in exactly the same situation as you until Sjogren's jumped on for the ride, I had the positive ANA but still no Sjogren's markers. There could be many like me. I have loads in BS who have like me all the symptoms except I had them at 20 not 40 so I still don't know exactly what I have but the testing wil reveal something I hope!
    • pam_87693
      pam_87693

      Posted

      Please look up POTS UK I was born with a connective tissue imperfection EDS Hypermobility Type, then I have had numerous operations and 4 sons, so all outonomic so far, then I had Hyperemisis Gravidarum with my last son, that is when I felt faint, then fibromyalgia then a Positive ANA, with a night titre autoimmune. I am going for a full evaluation at the only autonomic unit in the UK soon to find out why I have Dysautomnia 
    • pam_87693
      pam_87693 Sassylass

      Posted

      You are quite correct, in all your assumptions yes Hypermobility is nothing to worry about until it becomes hypermobilitly syndrome. This is an inherited connective tissue defect, Sjogren's is an connective tissue disease similar to its close cousin SLE 
  • pam_87693
    pam_87693

    Posted

    LOOK UP POTS UK they have an excellent website, you ought to then if you fit any the illness or problems mentioned, download all the material necessary to take to your GP and to your Consultant. POTS was only really bought to the UK very recently so you DO need to inform everyone and anyone you see about this. I am not a doctor but I have done considerable research on this subject and POTS UK will enable you to find out if you problems are POTS related or not. If you have then you need to join the POTS UK FB group. If you have Sjogren's I suggest you join the BSSA who do not do FB but British Sjogren's is run by BSSA members for people with Sjogren's Syndrome, fibromyalgia and POTS. Fibromyalgia with a positive ANA and Hypermobility both of which I have are both secondary POTS as of course is Sjogren's. However if you have had an operation, childbirth or trauma that could give you POTS too so Please do look at POTS UK
    • bronwyn97278
      bronwyn97278 pam_87693

      Posted

      Hi Pam, me again;   I have gone in and researched 5 sights on the relevance of POTS to ME/Fibro....yes there have been SOME cases that have connected many Auto-immune diseases,,,Sjogrens, ME/ MS  Lupus, and, yes, there is Reference to one lady's on-going story that also refers to her Peripheral Nerve Neuropathy.....but they don't say that ALL Fibro ME sufferers also have these other probs, too.  Yes, if there are some who have a diagnosis of Sjogrens, it may pay to have further testing done (if they feel they want more testing)....but the latest report that I could find (2014), still says that there is no known cure for any of these conditions....just treatment for the symptoms....which does include  all of the treatments that have been suggested by our forum contributors....please don't get me wrong, I know WE would all benefit/appreciate a cure, and to be able to get back our lives.....but as one lady from another forum on POTS said " she still feels it's a combination of many symptoms, conditions that she suffers"....and a LOT more research needs to be done....she lives in USA and has paid big dollars to be seen by Many Top Specialists......I am only saying that, yes, if someone suffers from POTS as well...which could be, as there are some who complain of swollen hands/feet...but to me, that points more to Peripheral Neuropathy....and they need to have Blood Pressue and Heart Rate checked when they stand and get the dizzy spells...to get a Definitive POTS confirmation...but do we have a Cure? besides us ALL trialing Thyroxin for the decreased activity of Hypthalamus/Pituatry and Thyroid???         please reply with what you think re this.....it has my brain ticking............winkBron

       

    • pam_87693
      pam_87693 bronwyn97278

      Posted

      The only way to find out what you have got if you want to is to have autonomic testing, I am going to spend 3 days in the only hospital in the UK that has these facilities hopefully in the next month. They could have done it by now as a day patient but I am too ill to travel, so will be an inpatient. This is not really for my own health, sadly the medical profession has misdiagnosed me all my life, it is purely for research as to why some ladies in my FB group are seropositive and get treatment while others are seronegative and don't! I will ask for a DNR on my notes, in that possibility then the hospital is happy to use my body for research 
    • pam_87693
      pam_87693 bronwyn97278

      Posted

      Wonderful we all need to become our own researchers sadly to stay as well as we can good luck
  • pam_87693
    pam_87693

    Posted

    Let me try to clarify

    you all have Fibromyalgia 

    if so you could have POTS 

    you hace an autonomic system

    the autonomic system is keeping us all alive, day in day out and we aren't aware of it at all.

    the Autonomic system is made in two parts 

    the sympathetic (Flight and Fight) and the parasympathetic (rest and digest)

    when you are normal you are not aware of this at all

    when you have flu, you run a temperature, go to bed, drink lots of fluids until you feel better, you go back to work, grumble about the weather, how washed out you feel and then the sun is out you start to eat and you carry on with life and forget about your body because you are well

    However IF for 6 MONTHS you have had aches and pains continuously you will probably be paying your GP a visit,

    you may be male, you may be female

    if you are female you will be more likely to go, men are notoriously bad at going to their GP!

    you go to your GP, he suggests blood tests for inflamitory markers

    the inflamitory markers are a raised ESR , CRP, ANA there will be others

    depending on your illness 

    you may have the following symptoms (this is taken from the POTS UK page for MEDICAL PROFESSIONALS) everything from now on is taken from the same source.

    symtoms

    Chest wall pain, shortness of breath, Gastrointestinal Problems, headaches, migraines, coat hanger headache, pain or coldness in legs, fingers, ears,

    difficulty sleeping, waking up unrefshed, excessive sweating, or loss of sweating, pupils sensitive to glare (photophobia), myofascial pain, neuropathic type pain, sense of anxiety. Many patients are told their symptoms are panic attacks. The anxiety and hyperventilation of happens as a result of the symptoms above and uncertainty of diagnosis and feeling of fear related to the symptoms. It is also thought that POTS and Orthostatic  intolerance can alter breathing regulation leading to deeper reservations and hyperventilation

    POTS is secondary to the following conditions

    Joint Hypermobility syndrome/EDS Hypermobility type (most common) 

    Chronic Fatigue syndrome ME

    Lupus

    Fibromyalgia

    Diabetes

    Sarcoidosis

    Amyloidosis

    Alchoholism

    Chemotherapy (esp. With vinca alkaloids)

    Sjogren's Syndrome

    Heavy metal poisoning

    Lyme disease 

    symptoms are EMIS CONFIRM

    • pam_87693
      pam_87693

      Posted

      Thank you EMIS

      symptoms are often exacerbated by extremes of temperature, exercise, after meals, and during or around menstration.

      Some of these symptoms can profoundly affect a patient's quality of life, making it difficult to perform the simplest of activities of daily living

      EMIS please keep I don't want to have to type this out again! Thanks

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