Hello all
Posted , 9 users are following.
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
helene
1 like, 18 replies
EileenH helenemiles
Posted
helenemiles EileenH
Posted
I really appreciate it .
helene
tina-uk_cwall helenemiles
Posted
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 helenemiles
Posted
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 lodgerUK_NE
Posted
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 lodgerUK_NE
Posted
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 EileenH
Posted
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 lodgerUK_NE
Posted
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 EileenH
Posted
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 helenemiles
Posted
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
helenemiles EileenH
Posted
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
pparker1213 helenemiles
Posted
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.=""> 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>
lodgerUK_NE pparker1213
Posted
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 pparker1213
Posted
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 helenemiles
Posted
helenemiles EileenH
Posted
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 helenemiles
Posted
helenemiles EileenH
Posted
hoping that you have a pleasant Sunday 😄