Vitamin D deficiency

[anjo]

Among other things, I have been in the most severe pain for the past 18 months

After having plenty of the normal blood tests I was tested for vitamin D deficiency

Turns out it was extremely low, taking meds now and told it might take 18 months to 2 years before I am sorted

The worste pain I have experienced with very little ease even when taking regular quite high doses of morphine and nerve treatment drugs

So if you start randomly getting severe pain and weakness in your neck, shoulders and mainly for me the bottom of my back and down my thighs, it's just a thought but ask for your vitamin D levels to be checked

Just a thought as if it sorts me out then I hope it might help someone else with this upto now, unexplainable pain

[USAhousewife]

I guess I am lucky, my PCP tested me Oct of 12/4/2013 and my level was extremely low and he put me on 5000 iu of Vitamin D3. He retests every 6 months and doubled my dosage to 10,000 iu a day. And despite the months of flaring constantly, taking care of my husband, and his death 2/24/2015, I am feeling better. I have read many people with Alzheimers patients are extremely low in this vitamin, as were several cases of various autoimmune patients. So I def think the vitamin is very important for all of us.

USAhousewife

[Bronagh2015]

Yes Anjo I couldn't agree more with you! Because many of us have sun sensitivity we have little chance to get enough vit D naturally and so are lacking in it. Also if we are taking calcium to protect our bones it cannot be absorbed properly without vit D. I had very low levels and after about a month of taking supplements I had great improvement in joint pains and fatigue 😀

[Footygirl]

Hi

I too was tested for vit D and was defficient. I had a week of one a day then have 1per month now. As I was seeing the GP for another matter I asked if I could have a maybe one off booster. Regardless of my detailed reasoning, like not having the same lift from the monthly tab, I am to have another blood test. Does anyone think a tab of vit D extra now and then would seriously harm me?

Reading the fact that your PCP, USAhousewife, recommends 6 monthly testing, I shall persist as the lifting of brain fog and an ability to raise my head and enjoy looking around at the world, during the first couple of months, makes me more than willing to swallow yet another capsule.

Are there lots of us NOT tested for vit D ? Is it a small thing to ask, for the lift in feeling better, even short term? Are there lots of us who ARE.It seems a small question. Would it benefit us to find the answer to that question in some sort of poll?

Just an idea. We all have parts of this mosaic, maybe we could find an answer or not, that would at least give us a small feeling of "control" in some small way that is driven by us, not variously qualified doctors both interested and ignorant who are so reluctant to diagnose our other many and varied symptoms.

Perhaps an administrator could advise us, having such an experienced and knowledgable overseers' view of the matter.

Positive thought to us all.

Footygirl

[Fennella02 in reply to Footygirl]

Footy girl, your question about vit D is very interesting. I have recently found that I have low levels even though I am not especially photo sensitive and get plenty of sun. My local hospital has never tested my levels in the last 15 years of Rheumatology follow up. My other clinic which is a large Lupus specialist clinic tests every 3 - 6 months.

Clare

[EOLHPC]

Great thread, anjo!

My lupus UK local support group has recently published our spring newsletter. In it there is a piece from the feb 2015 Arthritis Digest: winter lupus flares associated with low vitamin D levels - new findings. The piece briefly discusses the findings of a recent summer/winter trial. There were several revealing results (all listed apparently in Clinical & Experimental Rheumatology), but the result that most interests me is that the people supplemented with oral drops of vit D rather than tablets had significantly higher levels of vit D.

I guess I'm reasonably well informed on the subject of vit D etc, and have been on a regime of daily high dose vit D (6,000 iu of D3 in capsul form) prescribed by my pain consultant several years ago, and approved by my rheumatologist. My vit D levels have tested ok & I've been responding reasonably well to the other treatments I'm on generally. Whatever, I'm told by my Drs & co that this vit D supplementation is especially important for me because at 61 my sjogrens is currently most active & that I'm mainly palliatively managing the debilitating multisystem effects of a lifetime of infant onset SLE that has progressed mainly unimpeded (without consistent systemic treatment until 4 + years ago). Despite all this vit D, and conscientious lifestyle management, my rate of loss of bone density remains as high as ever (15 years into regular 3 yearly dexa scans) with osteoporosis diagnosed, but IV zolendronate treatment at our metabolic bone unit has been postponed while hypogammaglobulinaemia is investigated. Ho hum

So this thread hits the spot with me, and now I'm v curious about oral drops of vit D: so far, somehow, I've not encountered mention of this treatment method...am wondering is anyone here on oral drops?

[Manju-Manu]

Thank u anjo...I am having the same symptoms neck pains, shoulder pain, lowerback pain, pain down the lower legs..but I have never checked my vit d levels..will do it..

[ShellyB1]

I had my first rheumy appointment at the beginning of the year and he tested my vit D levels because of some of the symptoms I described. I was found to be deficient and put on 3200iu of vit D3 for 3 months.

It will be interesting to see whether my levels have come up when the blood tests are redone in a few weeks, I would have thought I got enough sunshine and I eat vit D rich foods.

The pharmacist at my local chemist told me she paid for a test while she was in India and diagnosed deficient and they put her on a few massive doses followed by a much smaller dose a couple of times a week.

Everywhere seems to vary but the difference between the drops and capsules sounds interesting.

[Footygirl]

Hi. So there is a question in the question! Drops hhmmm! Not heard of that method of administration. I will certainly ask when my results come back. Don't we broaden our minds on here? Every post seems to bring much more than "just" specific answers. Logical given our so very various conditions I expect but this appears to cross a lot of boundaries. Does anyone else have access to any other trials? It would be so useful to find out if the taking of this vitamin, drops or capsule, would benefit a lot more of us than previously thought.

If anyone has access to any informed reasoning, or other findings which could start a real dialogue about the benefits, to a lot us of Vit D I for one would be very keen to hear it.

XO

[nancy12]

I have the neck pain and cannot hold my head up or my shoulders back. The pain also runs down into my left hip. That is the side that seems to be pulling my head down. They have done blood work and now 20 X-Rays of my back and hips.

[MarsBarKid]

And check RDA as in America its 10,000 IU's daily. Australia 1000 IU's daily. I got low too and looked it up so upped mine and felt heaps better taking 10,000 IU's daily

Bit of a bad thing when Medicos cant agree on recommended daily dose!

Over 50'sneed to take CO Q 10 for energy too. Seems body stops or slows down making it.

Then Magnesium for muscles which gets leached out if doc puts you on a diuretic and forgets to mention it as I found out hard way. Or just plain lacking. Can get blood test for this.

Many take a multivitamin which holds small amount of all the body needs.

I always took a multi daily plus a Garlic cap as work in service industry so come up against sick folk etc. Never had flu to date and put that down to Garlic.

Body needs these vitamins I remember one time dentist telling me to take B vitamins too as had split at side of my mouth. Never had one since and take a B Complex daily too.

In fact take a bunch these supplements and fit enough apart from several years on unexplained chronic pain which came after a long wait, Orthopedic Surgeon told me last December after asking if ever been in accident etc, or a bad road trauma years ago that that was likely cause of deterioration in my left hip and knee as both injured in it along with a head injury. And that likely cause too of chronic pain. Seems these trauma's can look as if not a lot of damage at time and you;re back to normal, then it starts to come home to roost as you age. Meantime you dont even put whatever you suffer from down to an accident on the road say years back now do you? Being ex British Army I though myself fitter for my age then most. Came as a shock when leg started off slowing me down and now cant walk for long at all as left leg shorted etc - waiting for private health cover to kick in to get it fixed. Public health surgery long waiting lists here.

One thing I always remember as my Irish Grandmother told me, "You are what you eat"

so be careful what you put into your body only get the one issued she said and 100%

right. And our bodies need these vitamins and now they tell us the soil is tired so not always enough in our food. Nor do we go out in the sun due to being told to slip slop slap to avoid skin cancer.

Oops Australia = slip on and cover up skin, slop on sunscreen cream, and slap on a hat.