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Posted By : JellyLegs1978 - 2/6/2017 12:54 AM
Hi

My doctor told me about 6 months ago that he thought I had fibro. This was after diagnosing costochondritis, anxiety, health anxiety and me still.not accepting the diagnosis.

He basically told me pain never killed anyone so ignore.the pain and get on with life. I just couldn't do it. I'd been going to the docs since last February about the crippling rib chest and back pain and they wouldn't listen.

I asked him 3 months ago to test my vitamin d He told me he didn't believe in all these faddy vitamin deficiencies and refused.

A month ago I saw a different doc who ordered ecg, chest xray and bloods. The only problem that came back was a massive vitamin d deficiency.

I started 20,000units on Thursday to be taken daily for 2.weeks.

On Saturday I started feeling quite dizzy. By yesterday I could barely stand. My mouth is all swollen, lips are massive. Nausea, sickness, shaky, my body feels fizzy like it's tingling all over. Anxiety is through the roof. Palpitations are.constant.

I went to emergency doctor.as I was worried the dose was too high and I was having toxicity but he said the vitamin d is just amplifying the effects of the lyrica.

Does.anyone know anything about vitamin d replacement at all? I've now started with diarrhoea too, although the dizziness feels slightly improved

Thank you for reading

Posted By : JellyLegs1978 - 2/6/2017 12:56 AM
Sorry about the random full stops... stupid phone puts them wherever it likes
X

Posted By : Sherrine - 2/6/2017 7:18 AM
I take 5,500 IU of vitamin D3 daily. This includes the D in my supplements as well as the D in my calcium and multiple vitamin. This has helped me with pain. We have quite a few members who take vitamin D and I've never heard of this happening. Perhaps you need to try something besides Lyrica if it's causing all of these problems. Here is a link about Lyrica and side affects are included.

/www.drugs.com/lyrica.html

There is a link in Fibro 101 about vitamin D3 and how it works in the body. D3 seems to work best...better than D2. You can double check on that. My level started at 13 so my doctor told me to start taking D3 and he checked to see how my levels were doing periodically. I am now at 50 and feel a lot better. The 5,5000 IU seems to be a maintenance dose for me but everyone is different. I hope this helps you.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 2/6/2017 10:23:42 AM (GMT-7)


Posted By : bcfromfl - 2/6/2017 9:54 AM
I'm not a fan of the massive-dose injections. Not only is it just excessive, it's not in a form that the body can readily use (unless this has changed recently). I, too, am chronically low, and even with daily supplementation of 5,000IU am still considered low. Supplementation has brought me from the 30-35 range up to about 55-60. (Should be more like 70-80.)

The fact that your doctor is categorizing vitamin D into a "faddy deficiency" tells me you need another doctor. Vitamin D is also a protohormone, and serves a variety of functions beyond simply being a "vitamin."

For anyone else reading this thread, it's important not to supplement vitamin D in substantial dosages without being tested regularly to monitor serum levels.

Bruce

Posted By : JellyLegs1978 - 2/6/2017 4:23 PM
I now have a dilemma....

I missed my lyrica last night. I'm down to 25mg at night only now. I'm tempted to just not take it anymore as I've done a whole day without it now. I'm worried about anxiety rearing it's ugly head though.

The rib and sternum pain is there and I can just about tolerate it although anxiety is creeping in.... I could go to alternate days now? Or just quit....

Posted By : Sherrine - 2/6/2017 4:55 PM
We really can't give medical advice here. This is something you should pass by your doctor. I don't take Lyrica so I have no experience with it.

Your rib and sternum pain could be costochondritis. There is a link in Fibro 101 about that too. You can see if this sounds like what you are experiencing. I get that and use ibuprofen with food and Tylenol to help with the discomfort.

If you haven't read Fibro 101 yet...the first thread on the forum...do so. There are things in there that might help you.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : JellyLegs1978 - 2/6/2017 5:05 PM
Thanks Sherrine.

It's been quite a while since I looked up there so I'll have a recap in the morning as it's late here now.

The doctors diagnosed costochondritis about 8 months ago just before they decided it was fibro

Posted By : Sherrine - 2/6/2017 7:27 PM
It doesn have to be either or. Quite a few of us with fibro also have costochondritis too. I also take a muscle relaxer called Robaxin...less than half of what was prescribed...and it made a significant difference in my pain. When you are in intense pain your muscles tighten up which causes more pain. Just something to think about. Please try to relax. Worrying causes stress which causes more pain.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : eat2bwell - 2/7/2017 7:11 AM
If you are taking 20,000 units of vitamin D it is most likely the vitamin D2. The vitamin D3 is what you should be taking since it is more effective for the body. I was tested and showed 19 ng/ml which is low. The range given to me by the VA doctors was 30 - 90 ng/ml. After 3 months on 5000 IU of D3 I got may level to 72 ng/ml. This may work for you but the important thing is to be tested. We are all different and how much we need is different. Sick people need more. Here is an article that explains it.

http://www.naturalnews.com/027345_Vitamin_D_exposure_sun.html

Posted By : mhwilson - 2/7/2017 1:16 PM
Hi, Jelly. I am a Fibro patient with almost non-existent Vit D levels. I take 10,000 iu's of D3 daily for the rest of my life. Since I first started it, I have never had any of the symptoms you are describing. However, I did try Lyrica at one time and had horrible side effects right away. Two weeks of that and I was done! Sounds like you need to speak to your doctor about the Lyrica. I had the nausea, dizzy, upset stomach, etc. A lot of what you described.

Costochondritis (aka slipped rib, stuck rib) is something else we have in common. I had a severe case of bronchitis turned pneumonia back in '07 that kept me in the hospital for 7 days and with cough-variant asthma. This began the rib pain that took me 9 years to have properly diagnosed. If you so much as gently poke my ribs, they burn and sting for a while. Coughing and sneezing are torturous most times. And some days I don't even want to wear my bra. I have had cortisone injections in my ribs (and yes, that too was awful) and it helped for a very short bit. However, I have realized after numerous cortisone injections in my body that they don't work for me other than a 2-4 weeks, but hopefully you are different. I have researched treatment, and most say it goes away. However, as I stated earlier, it has been almost 10 years and I still deal with it daily. I have spoken to my chiropractor about treatment as well. Best of luck with that one.

Lastly, if my doctor said those words to me (the ones you spoke of in your original post) I would be looking for a new doctor. You know your body better than any person so be a strong advocate for yourself. Best of luck

Posted By : JellyLegs1978 - 2/8/2017 12:22 AM
I have looked on the box.and it's 20,000 units of D3.

Do you experience palpitations with costochondritis? Or a reaching heart?

Posted By : mhwilson - 2/8/2017 1:55 PM
I do not have any of those symptoms with my ribs. It can cause sharp pain, burning/stinging sensations, very tender to touch, and I get muscle cramps very easily. If you are having heart palpitations, you should see your doctor and get a referral to a cardiologist. I have had a pacemaker since I was 24. My issues started as what they thought was a simple heart murmur. However, the Vit D nor the rib problem have ever affected my heart. Hope you see your doc soon!

Posted By : Sherrine - 2/8/2017 4:36 PM
Mhwilson is correct in that you should see your doctor. But don't panic. People with fibro can get palpitations. I have them. When it first started happening to me I was on vacation in Hawaii. As soon as I got home I made an appointment with my doctor. He ran an electrocardiogram, and echocardiogram, checked my carotid arteries, did an ultrasound of my heart, and had me wear a monitor fo 24 hours. My heart was fine. I didn't have to see a cardiologist and I had peace
of mind because I was thoroughly checked out.

I get the palpitations occasionally. But do see your doctor about this. It is better to be safe than sorry.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : healseeker - 2/18/2017 8:21 PM
It seems that eat2bewell echoes my thoughts exactly. My D3 levels are 67 and I take 5,000IU/day. Like you've said on another forum, they pretty much monitor our words so we better be careful about trying to help people with our vast knowledge of the healing powers of foods and supplements otherwise we'll probably get banned temporarily. So we'll play it low key and keep our thoughts to ourselves and not share the knowledge with the world. By the way, I got shingles and in the beginnig of the viral disease I got rid of it in 3 days before my body succumbed to scratching and scarring but I'll keep that info to myself on how I healed it. Nobody else should know about it because my share with the world is muted. Gina

Posted By : Ljm2014 - 2/19/2017 1:39 PM
Each fall I remind folks here to up their d for the winter..mine got too low and felt horrible.

Last winter I took 6,000 a day over winter, and by accident did not get rechecked til august..my d level was only 30, which is not high enough for me..so this winter I am taking d3 at 10,000 a day , so will see if that level keeps me higher than 30..

Get in the sun 15 to 20 minutes when you can..

Lj

Posted By : getting by - 2/19/2017 2:17 PM
Ljm2014, What does the doc say about taking 10,000 iu of vitamin D3 a day? I am just curious because mine thinks my dose is a little high. I take over 5000 iu a day. I read somewhere women should only take 4000 iu a day. I feel good on my dose, my levels are at 95. I guess it can get toxic if it is too high. I take 5000, then I have some in the multivitamin and in the calcium.

Just wondering...

Hugs, Karen...
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Posted By : Sherrine - 2/19/2017 2:50 PM
Karen, I'm going to add my input. I'm sure LJM will too. Your D levels I think are a little too high. I take 5,500 IU of D3 to maintain my level of 50. This includes D in my calcium supplements and also my multiple vitamin. I have my D levels checked too just to make sure they don't go too high. I have trouble absorbing things so I'm probably not absorbing all that I take. I dont want to go above 50. I think that's the high end of the safe amount.

I'm no expert but that seems reasonable. Some think 30 is considered normal range and I've read 30-100 is fine. But vitamin D is fat soluble so it stays in your body longer. You can take too much D so it's important to be checked by your doctor regularly. If your doctor thinks you are taking too much then listen to him. I think 4,000 IU is considered the highest safe amount for women but, in my case, I have absorption problems.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Posted By : getting by - 2/20/2017 7:35 AM
We have discussed it, but as I am feeling good, we are leaving it. We are watching for toxic symptoms though.
Moderator-Depression


fibromyalgia, Chronic fatigue, depression, allergies

Posted By : Ljm2014 - 4/9/2017 11:06 AM
Karen,

Just saw your question

My dr told me up to 10,000 a day is fine..esp over the winter when my tends to get too low.

Since 6,000 did not keep me in a good range, I took 9,000 because of what is in other pills..

I am about due to be tested again..he would have given me the 50,000 once a week but taking it daily made more sense to me

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