1. Community
  2. Bones, joints and muscles
  3. Polymyalgia Rheumatica and GCA

Hello all

Posted , 9 users are following.

helenemiles
helenemiles

I have recently been diagnosed with severe vit d defieciecy following weeks of suffering from extreme pain : started in my elbows but then has travelled like waves .. Running through my body shoulders hips ,back , behind my knees . As the weeks have gone on the pain has increased and my movement and mobility has been restricted due to the severity of the pain . I have felt extremely tired , unwell , awfull sweats and genially felt rubbish !! I have noticed that at times part of my body appears ok ish although very painful to touch as if I have been working out at the gym or have pulled a muscle following the areas affected . The other day the bottom half of my body appeared ok but from the waist up ..... Well it was as if I had some one else's tosro attached if that makes senses !! Then like a wave it seems to change ... Right side looser less painful to move but left awful .... 

I have never taken so many Zapain in my life !! 

I have started on vit d 22'000 capsules last week 3 times a week for 5 weeks as my levels were 19 but my symptoms do seem more like that described by others with PMR .

I am 49 white British ,full time working mum , very independent (well usually) 

would really appreciate any ones thoughts and advice .

i am back for a review on the 13th but not convinced that the symptoms are the result of vit d deficiency alone sad

helene 

1 like, 18 replies

18 Replies

  • EileenH
    EileenH helenemiles

    Posted

    Hi Helen and welcome over here - I've already said my bit so I'll leave it to others to comment.
    • helenemiles
      helenemiles EileenH

      Posted

      Thank you for you advice smile 

      I really appreciate it .

      helene

  • tina-uk_cwall
    tina-uk_cwall helenemiles

    Posted

    Hellos Helen, if you have had a blood test that revealed a low vit d count, what else were you tested for. Were you tested for CRP/ESR levels in the blood. Very often these levels are not raised when there is inflamation in the body so cannot always tell the full story but When they are raised question inflamation and therefore could some of your pains be due to inflamation.

    low vit d does result in painful joints so perhaps your Dr wants to see if there is an improvement now you are taking high doses of vit d. Before he considers another diagnosis, however, it is not unknown for patients to have multiple conditions all at the same time that all have aps a symptom painful joints.

    i would see if CRP/espr levels have been taken and take it from there. Good luck. Christina 

  • lodgerUK_NE
    lodgerUK_NE helenemiles

    Posted

    Helen

    Vit D Deficiency causes aches and pains exactly like PMR and it is an exclusion test read the Diagnosis and Treatment of PMR on the British Society of Rheumatologists site.

    I had Vit D deficiency and was put on 40,000 units per day for 5 days and then after a further test 20,000 units per day for 10 days.   Result up to speed and then have taken 1000 units per day as a maintenance dose.

    Until your Vit D is corrected they won't be able to make a diagnosis.

    • EileenH
      EileenH lodgerUK_NE

      Posted

      Helene's been on high dose vit D (22,000IU 3 times a week) for a couple of weeks now - but the symptoms have got far worse over the last 5 days which why I wondered about her symptoms being PMR. 

      When you were vit D deficient did you also feel ill, have sweats and have the sore skin we often have in PMR or was it just joint and muscle pain? How quickly did it start to improve?

    • helenemiles
      helenemiles lodgerUK_NE

      Posted

      Thanks lodger for your advice .

      I started on vit d last week .... My symptoms appear to have increased in intensity (or may be just coincidence !!!!)

      did you experience the same ?

      helene 

    • lodgerUK_NE
      lodgerUK_NE EileenH

      Posted

      Eileen

      Yes, I felt rubbish, aches and pains in joints and muscles.  I knew it could not be PMR (on high dose of pred for GCA).

      Once diagnosed,   Dekristol (pure Vit D)  20,000IU twice a day for 10 days.   The aches and pains subsided rapidly, with 5 days. The rubbish feeling took longer.  But remember I was on pred at the time.

      Then 2nd blood test still not up to scratch so 20,000IU  per day for 10 days.  Stopped feeling rubbish within 5 days.

      3rd Blood test, level correct. 

      Then on maintenance dose of 1,000IU per day, I buy them as I can't be bothered to faff on with a prescription and they are not expensvie at £5.50 for 90 days supply and they are pure Vit D only

      I hesitated to answer Helen originally as I thought that the dose was too low and not consecutive (too spaced out). As as different scales are used for measuring the deficiency I felt I would leave it be.

      Eileen,  JW at Bristol uses a Vit C extract below:

      They use a glucocorticoid “sandwich” test when not sure of the diagnosis  (20 to 90% possibility it is PMR): 100mg/day Vit C for a week, 15mg/day prednisolone  and another week of 100mg per dayVit C.

      Would this help Helen?

    • EileenH
      EileenH lodgerUK_NE

      Posted

      I gave all the links to Helene over on the vit D thread I "met" her on - including the Bristol bit.

      It was the fact that her symptoms seem to have increased rather than decreased over the week of vit D - 66,000 IU in a week is a fair bit after all! - that made me think of the possibility of PMR and I suggested she had a look at it all. That's why Helene is here!

    • helenemiles
      helenemiles EileenH

      Posted

      I am here smile 

      and feeling pretty lousy I have to say !! Torso and above feels not bad today but from the waist down so so different ..... 

      Peach day brings something new ... Apart from my poor elbows which are the only original symptom that seems to have remained the same .

      if I didn't laugh I think I would be section ink myself !!! At this rate 

      Helene 

    • EileenH
      EileenH helenemiles

      Posted

      Does any of the moving pain relate to what you did the day before? If I cleaned windows for example my shoulders were agony for a day or so. If I tried to walk far it was the hips and lower back but the upper back wasn't too bad.

      I've just written an essay to another lady on a new thread - about Bowen therapy. That might also be worth a try - it has worked for a lot of us with similar problems. Google hewitt bowen therapy Durham to find a site that explains a bit about it. It kept me going for a long time before pred.

      We are firm believers here laughing rather than crying - though we know where you're coming from  lolsadlol

    • helenemiles
      helenemiles EileenH

      Posted

      Hi 

      re pain

      no it doesn't , that why I am puzzled and very curious to attempt to get to the bottom of it .

      at the moment despite the hand marks on my patio windows I have no energy to clean them .... And I don't think I have the strength in my arms as yet ... 

      I will have a look at the Bowen therapy , thank you smile

  • pparker1213
    pparker1213 helenemiles

    Posted

    Helene,

    I was diagnosed with PMR last July after many many tests. MY ESR and CRP levels were not exceptionally high but everything else pointed to PMR. 20 mg of Prednisone made me feel like a new man the next morning. I am currently down to 8 and feeling pretty good. Interestingly, I was never initially checked for Vitamin D deficiency. Somewhere around Dec my rheumotologist did another blood workup and this time checked Vitamin D ( I forget why exactly). It came back as  < 9 and she put me on 50,000 units once a week for 3 months. a recent check showed the level at 22 and she ordered another round of 50,000 units once a week for 3 months.

    i have to say that i found little change in my pmr "symptons" from the vitamin d supplement but i am sure it has helped in other areas. the prednisone is the only thing that has controlled my pain.

    probably tough to say what is what. best of luck.

    dave 9="" and="" she="" put="" me="" on="" 50,000="" units="" once="" a="" week="" for="" 3="" months.="" a="" recent="" check="" showed="" the="" level="" at="" 22="" and="" she="" ordered="" another="" round="" of="" 50,000="" units="" once="" a="" week="" for="" 3="" months.="" i="" have="" to="" say="" that="" i="" found="" little="" change="" in="" my="" pmr="" "symptons"="" from="" the="" vitamin="" d="" supplement="" but="" i="" am="" sure="" it="" has="" helped="" in="" other="" areas.="" the="" prednisone="" is="" the="" only="" thing="" that="" has="" controlled="" my="" pain.="" probably="" tough="" to="" say="" what="" is="" what.="" best="" of="" luck.="">

    i have to say that i found little change in my pmr "symptons" from the vitamin d supplement but i am sure it has helped in other areas. the prednisone is the only thing that has controlled my pain.

    probably tough to say what is what. best of luck.

    dave>

    • lodgerUK_NE
      lodgerUK_NE pparker1213

      Posted

      Dave

      What is the scale used?

      0 to 148 is the scale used where I am.  I was at 48.

      50,000IU once a week for three months is zlich to what I had. No wonder mine was corrected in 7 weeks. And still going strong with the 1000IU per day.

    • helenemiles
      helenemiles pparker1213

      Posted

      Have now been stated on prednisone 20 msg following admission lady Tuesday !! Pain unbearable ... Hips shoulders, elbows, neck and back ... Awful feeling rough as hell . 

      Have felt much better I have to say .... Not back to my normal self by far but feeling more human thank goodness . 

      Awaiting a few more tests to confirm diagnosis .

      hoping that I can now manage the symptoms a little better .

      take care 

      Helene 

    • EileenH
      EileenH helenemiles

      Posted

      There are no tests that can "confirm" diagnosis - just ones that make it more likely. PMR is a diagnosis of exclusion - that means they have ruled out other things. Not even the ESR and GCA tests can rule it in or out - mine are very normal, otherwise I have textbook symptoms. And they can be raised on other things too. But they will have been an early test I would hope, it won't be those you are waiting for.
    • helenemiles
      helenemiles EileenH

      Posted

      Thanks Eileen 

      I have so much empathy for others out there who have experienced these symptoms for many years !!! 

      My expeience yet awful has only been a few months in duration .

      this forum has been both helpful informative and really supportive .

      thank you for your reply .

      helene 

    • EileenH
      EileenH helenemiles

      Posted

      I'm so pleased my wander over to the vit D forum may have resulted in a diagnosis and relief of your symptoms. Low vit D is common in autoimmune disorders of all sorts but it isn't known whether it is cause or effect - in some itis probably causative. It is easy to deal with, if things then get worse - it's something else! 
    • helenemiles
      helenemiles EileenH

      Posted

      I am so so very grateful that you did wander over smile

      hoping that you have a pleasant Sunday 😄

Back to top

Report or request deletion

Thanks for your help!

We want the community to be a useful resource for our users but it is important to remember that the community are not moderated or reviewed by doctors and so you should not rely on opinions or advice given by other users in respect of any healthcare matters. Always speak to your doctor before acting and in cases of emergency seek appropriate medical assistance immediately. Use of the community is subject to our Terms of Use and Privacy Policy and steps will be taken to remove posts identified as being in breach of those terms.