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help please!!!!

Posted , 7 users are following.

sandy67
sandy67

I am sitting in bed crying my eyes out and just can't stop.  For years I have been back and forth to doctors and different specialists, recently rheumatology.  I have been loosely diagnosed with RA, fibromyalgia, ME etc., and had so so many tests, scans, xrays, meds!!!  I never understood the fibromyalgia diagnosis as it seemed to me anyone without any other diagnosis was simply diagnosed with fibro, regardless of symptoms, so was never happy with it.  Rheumatologists can't seem to make their mind up, one says its RA, another says not, the guy who scanned me said it was very clear that it was RA, looking at the inflammation, but my last visit I saw a locum who dismissed it and discharged me.  I have been suffering the most severe headaches for over a month now, every day, all day and had a brain scan yesterday which, thankfully, showed nothing sinister.  I have phoned today for blood results and was told my vitamin D levels are very low and to repeat with calcium - I already take calcium tablets and havedone for a few years! So -is this the real culprit?!  I looked up the symptoms of vitamin d deficiency.  The first thing I read was that one of the first signs of vitamin D deficiency is a sweaty head!  I have told many, many doctors and specialists about my head sweating uncontrollably for at least the last two years. It was put down to perimenopause.  It is embarassing going anywhere public, meals out, my daughters awards evening yesterday, constantly wiping my brow and fanning myself.  So, apart from this symptom, aching bones and muscles (I can barely move some days and spent 18 months practically bed bound and obviously unable to work - putting my home at severe risk), a bad gut (I suffer diahorrea regularly) and possibly the headaches too!! I am crying partly out of relief, partly frustration, partly I have no idea about (yes, depression is on the symptom list, as well as cognitive problems - I almost drunk a melted candle the other night!!)

Anyway I have an appointment with my gp shortly. I am just scared he won't agree that the vitamin D deficiency could very well be responsible for all of my symptoms.  I feel very strongly that this could be the answer and if it is,well I get my life back with treatment!! 

I just want to know whether anyone has any advice, whether anyone else has had the same problem?

TIA xx

1 like, 22 replies

22 Replies

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  • Misssy2
    Misssy2 sandy67

    Posted

    I got this on line

    Symptoms of bone pain and muscle weakness can mean you have a vitamin D deficiency. However, for many people, the symptoms are subtle. Yet, even without symptoms, too little vitamin D can pose health risks. Low blood levels of the vitamin have been associated with the following:

    Increased risk of death from cardiovascular disease

    Cognitive impairment in older adults

    Severe asthma in children

    Cancer

    Research suggests that vitamin D could play a role in the prevention and treatment of a number of different conditions, including type1 and type 2 diabetes, hypertension, glucose intolerance, and multiple sclerosis.

    Have you had MRIs for Multiple Sclerosis?   Fibromyalgia is very debilitating....my mother also has alot of your symptoms as do I.....I have been diagnosed with Fibro...currently being tested for MS. 

    My sister has MS and has alot of these symptoms as well.

    Everyone is different...you could also be deficient in other vitamins...combinations of illnesses....or conditions....are hard to pinpoint.

    • christine26761
      christine26761 Misssy2

      Posted

      It certainly seems to with this Fibro..I've been on double the recommended dose of vit D3 and double the dose of magnesium...the doc suggested....years ago..works well, be blessed..have a nice day Missy..:-) xx
    • sandy67
      sandy67 Misssy2

      Posted

      My friend was recently diagnosed with ms - I told her last week that vitamin D can cause this too - she was always so healthy, same age as me- 48, so she is finding it really difficult to deal with.  I am convinced she may be deficient too and told her to have blood tests. Her docs are rubbish though - mine, thankfully, listens to me and is really good! x

       

  • sandy67
    sandy67

    Posted

    Thanks for all your replies, I haven't been on in a few days, as have been back and forth to docs and sleeping a lot!  My vitamin D levels still came back low, even though I am taking the Calcious Vitamin D pills andgetting a lot from other sources.  My gp now thinks it is a parathyroid tumour.  I have looked this up and on the parathyroid website it does say if your vitamin d levels are low it is for only one of two reasons - 1 you are not getting enough (which I clearly am) and 2 - it is a parathyroid tumour - and this, in itself causes the whole list of symptomsI have!!!! aching bones and muscles, depression, confusion and forgetfulness (did I mention I almost drank a melted candle?!?!- only stopped myself cos of the flame! - I was just thirsty and saw liquid! that scared me!!). So, it is looking like it will simply be a case of removing this tumour (they are almost always benign!) but osteoporosis could have set in now as when you are not producing vitamin d, calcium is taken from your bones and will show high levels, this in itself means a parathyroid tumour - anything over 10.1 apparently.  This could be good news - I am not sure yet, but at least if that is the answer I will know at last what I am dealing with - this has been going on for at least 18 years - I was only 30 when it started and a so called "specialist" said it was just general wear and tear - ha ha.  another one said I just needed to lose weight - I was a size 12-14 and 2 stone lighter than I am now - some of them are a joke and an embarrassment to their own profession!

    Thanks again for replies - I do appreciate the advice so much!! And I hope everyone gets some proper relief - living with constant pain is no picnic!! xx

  • amanda_02465
    amanda_02465 sandy67

    Posted

    Hello hun,

    I am sorry sorry that you are going through all this, BUT I think I have an answer for you as regards what is going on. I think you have EHLERS DANLOS SYNDROME, EDS for short. I have this and if it wasn't for a chance meeting I wouldn't have even known it existed. Have a quick Google of it and see what you think.

    Best of luck

  • denise85279
    denise85279 sandy67

    Posted

    hello S andy, Im sorry about your problems ect.but I have been ill for yrs.pains in my whole body and can,t walk up a slight hill now even the pains in my buttocks neck shoulders arms and spasms, IBS Migrain skin condition lots and lots os allergies ostio arthritis spondilters rhumatoid arth. the list goes on and it,s 6 yrs. later they ay its fibromialgia im at a total loss now ive personaly came to the conclusion it causes lots and lots of chaos  throughout the body It,s terrable thing and my memory is all over the place foggy brain forgetful i think they dont know enough about it really and i think it involves lots of other things .( just my opinion )  
  • Cindy-Lou
    Cindy-Lou sandy67

    Posted

    Hi Sandy it sounds as though you are in a bad place just now with everything getting on top of you. I was diagnosed with fibromyalgia twenty one years ago & through all those years I've had all the symptoms along the way at sometime or other & still have, however if you don't have a good team of Consultants/rheumatoid nurses/Drs to help you you must feel very dispondent & that's not fair. I've tried all the usual painkillers over the years, hospital pools, physio the lot & I can honestly only say now that I am in control at long last. I take Duloxetine everyday oxycodone, oxynorm & paracetamol to back them up, I know now when to take either or all depending on what sort of day I am having & also..... I have just found out how to sort my 'sweaty heads' out only by chance because my husband has been diagnosed with cancer & side effects of the treatment are bad sweats & his oncologist suggested he buys sage tablets, & they do work quite quick too, so I'm on them too! Also for restless/ painful legs etc we bought a circulation machine & that's worth its weight in gold. I'm not saying my own answers will work for you but any hints are better than nothing hunny. Hope this is of some use to you & take care.

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