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Help please!!!!!!

Posted , 6 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, 14 replies

14 Replies

  • andrewwakelin
    andrewwakelin sandy67

    Posted

    Hi. Fibromyalgia and ME are common misdiagnoses when people actually have McArdle Disease - when the diagnosis is corrected later. So if underlying all this are life long issues with your muscles, you may like to read the page on our AGSD-UK web site, under "Type 5 McArde Disease", called "Could my problems be due to McArdle Disease?".

    https://www.agsd.org.uk/

  • aveline
    aveline sandy67

    Posted

    Hugs to you!!

    Is it wrong that I laughed a bit when reading that you almost drank melted candle wax??  

    Do you have low B12, too?  Have you been tested for Coeliac Disease? (yeah yeah, you don't mention gut symptoms but it's so much more than that, including auto-immune and malabsorption, both of which you probably have)

    AndrewWakelin - what a great link!! How wonderful of you to volunteer to help others and spread the word!  I pray that you continue to manage so well, yourself.

    Best wishes to you both!

    • sandy67
      sandy67 aveline

      Posted

      Hi Ihave thoughtmany times overthe years that coeliac may be the culprit, as I know I suffer when I have eaten breadand so try to elimate it when I can, but it is hard. blood tests came back negative though, but doctor said there are other tests.  He agrees it could be the vitamin d deficiency causing a lot of my problems, at first he told me not to get carried away but when he realised that i am already taking calceous and it STILL came back as very low, he started thinking a lot and said that I must not be absorbing it.  I am outdoors a lot, I love the sun and hate being indoors when its nice out.  I eat lots of salmon and mackerel.  I love eggs and eat loads! I even drink milk as I am not a big coffee/tea drinker, so water and milk are my drinks throughout the day.  B12 has always been borderline low.  I have always been told that I have an autoimmune disease as my ANA test comes back.

      Its ok to laugh at the candlewax- it was scary at the time when I realised what I almost did!! but it would look hilarious!  It was hot melted and still burning so it would have been quite some shock.  I am just finding that I am getting confused lately - the headaches don't help though, waking me up and stayingwith me all day,so that may be makiing me confused.

      thanks for your reply

       

  • jacquibutter
    jacquibutter sandy67

    Posted

    This sounds a ;ot like Lyme disease-alot of patients get labeled ME and MS but private tests show Lyme.  Request that you have test but may come back negative but may not be negative-look up EuroLme group
    • andrewwakelin
      andrewwakelin celia0407

      Posted

      This from NHS Choices:

      Chronic fatigue syndrome (CFS) causes persistent fatigue (exhaustion) that affects everyday life and doesn't go away with sleep or rest. CFS is also known as ME, which stands for myalgic encephalomyelitis.

  • jacquibutter
    jacquibutter sandy67

    Posted

    late posting but have you looked up Lyme disease
    • sandy67
      sandy67 jacquibutter

      Posted

      yes Jacqui, I looked it up a while ago but symptoms didn't fit.  isn't that caused by an insect bite?
    • sandy67
      sandy67 jacquibutter

      Posted

      its caused by a bite from a tick and I am pretty sure I have never seen that rash on myself, so doubtful, but I know the symptoms can be the same
  • dondons1uk
    dondons1uk sandy67

    Posted

    Hey

    I had a vit D deficiency diagnosed earlier this year but only when i paid for a private blood test because I was so weirded out by things I was doing and odd symptoms.  The cognitive thing is the oddest.  Went to someone elses flat door trying to get in because I was convinced it was my door!

    Anyway, dr put me on Vit D and I did notice a remarkable difference in about 2 weeks.

    It turns out now I also have an autoimmune disorder.  So I think lots of things can contribute.

    It is frustrating.  I've been there and cried regularly, and probably will again.  

    I think the best thing to do is keep a diary of symptoms.  LIke columns.  Physical mental and emotoinal and jot it down every day.  You can then start to see any patterns occuring.  Also photographs of any rashes etc.

    Then as you start to elimante things see how those symptoms go.  So when you start taking Vit D supplments do all your symptoms go, or just some?  If some remain, it may help the dr narrow down what else is going on.

    Sadly it seems to me so many symptoms are generic to so many things its really hard to always pinpoint

    Best of luck and wish you well

     

    • sandy67
      sandy67 dondons1uk

      Posted

      I have been taking large doses of vitamin D and go today for another blood test, but I think it is just not being absorbed, so that's another thing to be investigated!  I think you can have injections but will see the doc again next week after the bloods come back. Yes the cognitive problems can be scary!

      Thank you and good luck to you also x

  • barbara98940
    barbara98940 sandy67

    Posted

    Hello, it could be a food allergy/intolerance. As part of the symptom diary write down what you've had to wat and drink and whether any symptoms appeared, or worsened, and how long afterwards this happened. Some food allergy/intolerance symptoms happen immediately, some minutes, hours, or days later which can make it very difficult to pin down exactly which food is the problem. Have a look at the website allergyuk for more information. Are you aware the blood tests won't pick up an allergy if you haven't been eating a food? It may be that a food allergy/intolerance is the reason you're not absorbing nutrients - as food is moving too quickly through your gut (you mention diarrhoea). There are no tests for food intolerance, except for excluding the food for a couple of weeks, noting if symptoms improve; reintroducing the food, noting symptoms; then repeat to check. Also check out blastocystis hominis which is a parasite that many people have in their gut, which for many people doesn't cause symptoms, however others suffer a lot of food allergies/intolerances and poor absorption of nutrients which would explain your inability to absorb vitamin D. There is a lady pharnacist IW who writes about gut issues (as well as hashimotos hypothyroidism, which if you haven't got hypothyroidism you might have ignored her posts, which is a shame as she is really informative on gut problems). Hopefully this has given you another line of enquiry. Good luck with your detective work! I'll PM you IW name. If you register on her website to receive her emails you'll get lots of interesting stuff, free. It's because of her I found out about blastocystis hominis. My GP looked down the list if foods this parasite means you can't eat and said: "this is everything on your list". As one of the ways to eradicate this parasite is harmlessly taking a particular probiotic yeast in capsule form (so it doesn't get destroyed by your intestine on the way down to your gut), I'm going to try it - I've got to wait for change in thyroid meds to settle down first. All the best.
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