February 21st, 2008
The Lupus Foundation of America has many walks for lupus coming up. I can’t walk myself because there’s no walk near me and I can’t handle the long time out in the sun. I am sensitive to the sun. Lupus makes some people photosensitive. The person’s body does not react normally to the affects of the sun. If I’m out in the sun for too long it usually sends me in to a full flare. It’s not as bad if I cover myself up from the sun.
I really need the sun because I have problems with not getting enough vitamin D levels. About a year ago my vitamin D levels were critical. I had my doctor’s nurse yelling at me because she couldn’t reach me. My phone voicemail wasn’t working right. I couldn’t understand why she was so upset over a supplement. I checked the internet for information on vitamin D supplements. Last time, I had my D levels check was not normal again. Once again I was put on 50,000 units of Drisdol once a week for 8 weeks. I take high dose calcium and vitamin D supplements by doctors orders. I go back to the doctor next month. He told me that people with lupus and other autoimmune disorders have difficulty with keeping vitamin D in there body. He actually told me somewhere they are doing a study about it.
Vitamin D is received into the body from the sun and from your diet. Now I can see why in school they preached about drinking enough milk and getting out in the sun. Well outdoor sun isn’t an option for me too long. When I do go outside I usually wear my silly aqua colored hat with the floppy sides to cover my face. It’s the kind of hat that blossom use to wear on the TV show. I have tried finding a different hat and most of them don’t cover my face enough. I have special sun block that I wear when I’m out in the sun. And let me tell you that stuff is greasy.
The lupus foundation of America has a few articles on vitamin D deficiency. The article I read states the vitamin D deficiency is the most common deficiency in lupus patients. There is also a good web module on lupus and bone health.
Filed under Life with Lupus | Comments (26)
Hi! Thank you so much for dropping by and your comment. I’ve already added you to my links.
If you don’t mind, may I ask how you got it? Sorry if I had to ask, it’s just that I’ve met quite a few bloggers with lupus.
I’m glad to have met you and I’m looking forward to getting to know you more.
Take care and have a nice day.
I never drank mild until I was in my 20’s. I hate the sun. No I live in cloudy Seattle. BUT, I feel I know what started my MS, and people who drank milk, gots lots of sun, still got MS. I hink the trigger of all the immune system diseases is less impoetant than the inner mechanism that fails.
I changed your link on my 100 Chronic Illness Blogs list. Let me know when you change your address, so I can send viewers straight over. GO PINK! Diane-
PS: I plan to highlight your blog tomorrow on my site.
Love your new site. I’m adding it to my blogroll.
First time visitor here on your new site, it looks great! Wordpress can be tricky sometimes..
I too have to take mega doses of Vitamin D, my doc always comments on my pale appearance, duh!! It’s not like I’m going to go out and lay in the sun
Wishing you a pain free day today
Michelle
Although all my symtoms indicate that I have lupus and my doctors are almost sure that I do because of my medical condition but testing is not conclusive,I have now found out I have a vitamin D deficiency which is more evidence to me of the lupus.
[...] a vitamin D deficiency is something I’ve touched on in the past. A vitamin D deficiency can cause a whole host of problems. I’ve had a stroke which the [...]
Hello All,
Your input needed.
Since the last 9 months I have had chronic fatigue and I was unable to perform usual tasks. My doctor diagnosed very low values of Vitamin D 12 and then 7.
I have been put of over the counter vitamin D, 4,000IU a day, yes 4,000IUs. My doctor and bone specialist think I may be depressed and don’t offer much help.
If I have 2,000 IU at a time I nearly feel like I am drugs and I fall asleep, so I stated taking 1,000 IU doses four times a day. I have been on 4,000 IUs for the past four months and even few hours without Vitamin D feels like I am dead. Just yesterday I was out of town and forgot my Vitamin D and took my chances. I felt like I had fever the whole day without any physical signs and I was shaking , I could feel warm blood flow around my head and face.
Finally came home and took Vitamin D , it took me three days to come back to normal regime of 4,000IU a day. As it stands I am hooked on Vitamin D can’t live without it , even an hour delay causes me to shake and feels like I someone hit me with a bat on my head and then flu like fatigue all over the body. Basically I have become useless for any physical work. I have no weight loss ,actually some weight gain as I eat more to get energy but there is none and I unable to exercise.
Please advice….
I have many lupus symptoms including the positive ANA reading. I was just referred a couple of months ago to a rhemetologist. My regular doc diagnosed me with RA. My rhem. appointment was last week. This doctor said no to the RA and ran more tests. They told me my Vit. D levels were very low and put me on 50,000 IU 4 times per week. (Not a typo). I have only taken it two times as I have since had a massive headache for two days. Wish me luck at work tomorrow!
Kathleen,
My heart goes out to you. Dealing with the vitamin D defiency is pretty scray. Its always up and down. I take the vitamin D with calcium, but I have to take it seperately. He wants me too.
Chronic Chick
Well last Thursday I spent the day in the ER. I have a kidney infection and pleurisy yet again. I had to move on Saturday from a house I lived in for nearly four years. The landlady would not fix the heat or a crack in the foundation which was allowing mold growth in my bedroom. Hopefully the move will eliminate some of the environmentally related symptoms. I am still very frustrated that I still have no official diagnosis.
Nice to read.. I too have been Vitamin D deficient and have done 3 rounds of 50,000 units of D for 12 weeks. I have been off of it for a month and can tell that it low again. Bloodwork scheduled for WED..
Cindi, I am still having issue with vitamin D going on over 2 years. They barely get the levels up, but not where he wants them to be.
Chronic Chick
I am so glad I found you! I have had so much lab work done. Pos ANA, pos IGG(?) low vit D, not to mention fatigue, shaking, etc. So many things point to Lupus. I see the Rhumatologist next week. Hoping to get some answers. My MD said answers don’t come easy and I could go quite a while without one. I was so overwhelmed to hear that. I just want to feel better!
Stacey,
I hope you find an answer. Its so hard dealing with sickness. I know I struggle with wanting to feel better.The D level is so hard to get up and stay up.
CC
I just happened on here while researching my low vitamin D and Calcium. I have Lupus SLE, Fibrom yalgia and most recently R.S.D. I know I’ve had to take Calciumm in the past but wasn’t sure if maybe the R.S.D. was causing my issues now. I feel like I’m in the 7th circle of hell. I’m having a flare up of all 3. I don’t have the positive ANA yet but I have in the past. I know all these little issues usually precede bigger ones. Once R.S.D starts it doesn’t just flare , it stays and sometimes cripples you with atrophy. Somedays I just wanna pull the covers over my head and give up…
Heather,
So sorry to hear about the hell your going through with the pain.
It plain old sucks. I feel your pain. Some people have the lupus with no +Ana
CC
I have been in and out of seeing a Rhumatologist for two years now. I am only 16. Lupus has been in question for the entire time, but I did not have enough full-force symptoms to make my doctor diagnose me. She said she was hesitant to diagnose that. I am going back to see her for the first time in 1.5 years now. I got one blood test back today saying I was low on Vitamin D. Thats all they said. I have to wait until monday to find out what that means. I have been experiencing a plethora of more lupus related symptoms recently and I was wondering what the relation is of Vitamin D is. Is it a symptom OF lupus or is it usually low in lupus patients because of the limited time in the sun? I guess what I am asking is, is this going to be the one thing that makes me doctor fully diagnose me? I still have yet to find out my whiteblood cell counts etc.
i also have this awful disease. i get these lesion all over my hands. they feel like something is feeding on me like mites. i’ve never had a history of protein in my urine but the urologist wants to do a biopsy on my kidneys although the test came back negative for protein in the urine. i told them that i work out alot and i sip on protein drinks/shakes all the time. but did they listen? noo, not at all.. i don’t know if the vitamin d will work for me i’m still trying to figure this thing out. please comment on the above situation i’m in
Lesa,
sometimes it’s like pulling teeth to get a doctor to listen to you. My D level was checked by my rhemotolosgist. The first time they told me the nurse was actually yelling at me. At the time, I didn’t understand how important D is for you health. My level was almost nothing.
CC
I have a diease of the brain called CADASIL
(cerebral autosomal dominant arteriopathy with subcortical infarcts and leukoencephalopathy)
it causes strokes i have already had one and am expected to have more from the age of 42 it is a hereditary and there r 6 children in my family and 3 out including myself self have this the only way to tell is if one gets a blood test usually have to b admitted to hospital otherwise can b quite costly when i was going to doctors they looked at everything including lupus it got to the stage where because they could not tell me they said it was in my head well it sure was not alot of people know about this as there is only like 4000 people in the whold world with it sorry to write on this wall but sometimes it just helps to get it out there kindest regards sue
Recently told I maybe have SLE or RA and was put on 50,000 per week of Vit D. Only have taken the Vit D once and was wondering if it will make me feel better in general. I often have muscle and joint pain, feel feverish, shaky, and just in general feel down. Are these things similiar to others experience wit Vit D deficiency? Most internet articles I read only talk about effects of the deficiency on osteoporasis and elderly. I am only 30!
Hi all,
My dad has lupus. I was diagnosed with sjorgrens syndrome.Its and autimmune disease. I believe the sjorgrens has went full blown lupus. I have rhemutaoid,fribromyalgia,chronic fatigue, migraines,and rashes on my arms and chest, and vitamin d defincency. I recently had a spout of pancreatitis and was hospitalized. I have been out of work almost 2 months and my regg dr says he doesn’t know if Iwill b able to go back. My rheumie started me on plaquenil and pt which is very painful. The rheumie seems to think I could go back to work. My problem is I’m constantly fatigue and some days have trouble even doin housework. I am on short term disability thru work and thought about applying for disability. My question to you all how hard it is to get disability with lupus. Thanks for all responses.
I feel so bad,my muscles are weak, headache, nause, throwing up, very low in vitman d.My body hurts so bad, i am tried of this!!
Shelly,
It does get old. Pain never gets normal it just becomes a part of existence.
[...] My lab results won’t be in for a couple of weeks. He did the typical tests including checking my vitamin D level I always call about my test results. Why? I don’t want something to be found on my labs six [...]