New to the Group, New to the Deficiency

I have been going through this painful mess since like June of last year.  (I actually had the symptoms during the first trimester of both my pregnancies in 2006 and 2007.... but those went away.  This summer it came back with a vengence.  I have muscle, joint, bone pain all over.   Headcahes, rib cage hurts, chest hurts, hard to breathe, panic attacks, no depression (but I already take an anti-depressant and an anti-anxiety from 2008).  No fatigue, no fever.  If I am asleep, I am ok.  Once I wake up, even if it's just to get up to go to the bathroom, the pain comes back instantly.  Then I'm asleep, and I am fine.  

My GP mentioned lupus and sent me to a rheumatologist.  He took some blood tests and just called me two days ago to tell me that I was very low on Vit D.  and gave a script for it to take once a week.  I still have to go back in a few days to follow up on the other lab work.  But, since finding this WONDERFUL group, I am convinced that it is the Vit D.  I mean, my symptoms are so much like others.

Just wondering, is there any food that can also boost your levels?  I don't drink milk.  I will not drink milk.  So, I need other avenues.  I eat yogurt every day, I eat spinach, fish.... But need to know if there are any other stuff anyone may suggest.    Just want to get this done and move on.  I can't imagine some of you having to deal with this for so long.  It's crazy.  But I am definitely doing my research and trying to figure out how to improve my quality of life.

[AlisonWonderland]

Just wanted to add my level was 18 on a 30-100 scale.  So, that seems a bit low.  I'm 33 female and have unintentionally lost 12 pounds in about 50 days.  Wonder if that has something to do with it also.... Saw Dr. Holick had a book on Vit D Def, so I am picking it up from library to look over.

[Gary3243]

I was like you, diagnosed about a year ago at a low level (either 15 or 17ng, cant remember).  Did the 50kiu per week for 8 weeks, then per doc went to 1k per day.  It was a mistake for me to go to 1k.  My levels went to 35ng at the end of 8 weeks, but once I started on the 1k/day started going down.  During the summer I treid to get sun everyday in the mid day for 20 minutes.  Went to 2k and with the sun my levels went to the mid 40s.  Felt like I was starting to have more energy.  With Fall coming on I went to 5k/per day but no sun.  Stayed in the low 40s, but just last week was down to 31ng.  Im now taking 10k/day along with some calcium and magnesium.  Im trying to get my D levels over 50ng and have yet to be able to do that since being diagnosed.  Not sure of the level you will need, but I would recommend taht you take a D supplement everyday.  Good luck!

[singlesh]

My situation seems a little similar to yours. I started getting symptoms about 6 months back after weaning my son from breastfeeding for almost 2 years. Although, i did take prenatal vitamins with vit d during pregnancy, I did not continue with it during breastfeeding. That probably drained my body of all the vitamin d and when it was tested about 3 months ago, it was 6 ng/ml. I had similar symptoms like mainly, bone, muscle and joint pain especially in the back. I have been taking the 50,000 iu prespription for 3 months and now i am on about 4000iu/day. My symptoms have gotten a little better but there are good and bad days.
About a month back, my levels were retested and they had gone up to 64 ng/ml! but most of my symptoms remained. I have heard it can take a long time for the pain to go away even after normal levels are reached so i am hoping that is what it is.
You mentioned that you get rib cage pain, where do you get it specifically? I get rib cage pain too in my back and in the front - sometimes between my breasts and under my breast and on the sides of my chest under my armpit. I also get breast pain which scares me the most. I have been to the dr multiple times about it and they keep reassuring me its nothing. Have had mammos and US but it still scares me. I hope the breast pain is actually the muscles and bones under the breast and nothing else. Do you get breast pain too?

[Gary3243]

It can take a year or more at optimal levels for symptoms to subside.  I hope to get my levels to yours (60-70) and then need to maintain.  With summer coming up that will hopefully help.    

[AlisonWonderland]

Sorry you have this stuff, also!  My rib cage pain is in a few places.  Right under my breasts.  Like I'm being squeezed.  The I have the sternum pain, then I have really bad pain above my breast on left and right side.  They said I had pleurisy, costrochondritis.....  It hurts to wear a bra, because my bones ache.

As far as breast pain, I have had some.  But, being that I have had breast issues before, I don't worry so much, because cancer doesn't usually cause hurt breasts, so if your breasts hurt, most likely it isn't cancer.  My pain is like electric shocks and it's gets to be annoying, but, doctors deal with one thing at a time, so, we'll get to that when we do.

Hope I answered all your questions!  Feel better.

[singlesh]

Thank you for answering my questions. I feel a little better knowing that someone else with this deficiency also has had breast pain because not many ppl seem to have it and it is not listed in the common symptoms list. The breast pain is what bothers me the most but have realized there is nothing more that i can do about it and just wait it out. I have been to multiple doctors about it and they all keep telling me that it is nothing to be concerned about. I also have fibrocystic breasts so maybe thats what it is.
Thanks!

[AlisonWonderland]

I have fibrocystic changes, too.  Also, about 10 yrs ago, I had a cyst removed.  So, I know if I tell a doc my breast are hurting, they will brush it off.  So, I didn't bother telling them.  If it seems to get more alarming, then I will let them know.  Who knows what it can be?!  Feel better :)

[TW1985]

Hi AlisonWonderland!  I know you are so glad to finally find out what is going on.  I too went through this for months knowing something was wrong with my body but having docs tell me it was anxiety. Symptoms ranging from headaches, chest pains, fatigue, stomach pains, muscle pain, dizziness, lightheadedness, weight loss and the list goes on. I finally was referred to a internal meds office in December 2011 where they drew some extensive bloodwork and found my vitamin d level to be an 8!!! They put me on 50,000 iu once a week.  However, I saw an endocronologist for further testing and he increased my vitamin d dosage to three times a week and i'm also taking calcium 4 times a day and magnesium once a day.  I still wonder does low vitiman d cause all of these symptoms or is there something i'm missing?? I'm actually about to see a urologist because i'm having some lower back pain and gonna get that checked out.  My symptoms have somewhat subsided but here lately I have been having that breast pain that you were referring to, chest pain, and back pain, also tingling throughout my head.  I really wish these things would go away.  I'm a 27yr old wife and mother and just want to be normal again!! Thanks for listening and maybe we can help each other out as we get more info!

[AlisonWonderland]

Yeah, I am baffled at the damage Vit D Def can do.  Who knew?  I go to my rheumatologist later today for more results, so we'll see what he says.  I do know that I need to take some meds for pain, because Im taking this vit, but I hear it takes a long time before you notice a difference.  I cannot deal with this pain each and every day.  So, hopefully he will give me a script.  DO you take meds for pain?  Tylenol and Advil don't help.  

Im 33 and have a 4 & 5 yr old, so they don't want to hear "Mommy's hurting".... THey want to get up and jump on me and run around and go play, so I have to get through with this.  Anyway, we'll keep in touch!

I may have to go to some more docs, too.  We shall see.  To be continued.  Feel better!

[TW1985]

The only meds I take for pain are tylenol.  My doc told me to stop taking the ibuprofen as regular as I used to.  But they are just 500 mg and I only take them when I am having chest or back pains that I can not stand at all.  Also, I wanted to ask if you knew the difference between the presc vit d and the vit d 3 they sell otc? I've been reading that d3 is better! I actually purchased a bottle to see how they work! What do you think? I'm also on  prednisone because I have some swollen lymph nodes.  My doc seems to think it's just a skin problem but we'll see! Just ready to be through this!! But I'm staying positive about it!

[AlisonWonderland]

My doc just told me I can't take pain meds, because he won't know if the Vit D is helping.  He also mentioned Fibromyalgia, but he has to see what the Vit D does to know what's up with that.  

I don't know the difference between the two.  I got a book from the library, but haven't read it yet.  It's probably in there.  I have swollen lymph nodes too, in my armpits.... But, I had too many things to tell the doc, and I may have forget to tell him that.  I'll know more in mid-March!

Stay positive :)

[TW1985]

Ok that is good to know.  Like I stated I only take the pain meds when I just can not deal with the pain so it is very limited, and I have heard an d read up on fibro also.  I'll have to get a book from the library to look further like you've done but let me know if you find any valuable information.  Thanks for the reply and you stay positive also!!

[AlisonWonderland]

The book is called Vitamin D Solution by Dr. Holick.  He apparently is the most well known doc on Vit D studies.  The person who started this group has posted some short videos from him.

[TW1985]

Ok thanks I will check that out!  Update: Saw a urologist on yesterday and of course everything checks out fine with my kidneys and urine! He is gonna check my bladder but he stated that he doesn't see anything wrong! Yaay but still having some of the same feelings so I guess we just have to hang in there and keep taking the supplements until the symptoms subside!! Will keep you posted!

[AlisonWonderland]

Good news!  Who knew Vitamin D was important????

[TW1985]

Exactly never would've thought all these problems would be from something simple as a "low vitamin D level"!! Thanks for the reply and will keep you updated on my progress.  Still having weird symptoms but I guess in due time things will get better! Talk to you later!