View Full Version : fibromyalgia dx vitamin d deficiency


k31kozumi
04-13-10, 11:08 AM
i have been diagnosed with fibromyalgia. my pain is widespread since a car accident and injuries not completely healing. at first i healed fine. a desk job and stress caused the pain to come back. with trigger point therapy i got relief but i believe never got to the root of the pain. (main trigger points)
anyway i was just found to be severely vitamin d deficient. after a month of supplementation my fatigue is getting better. also my muscles are loosening up and i am finding the main trigger points on my own with self massage and using tennis ball trigger point techniques.
researching vitamin d deficiency i found that it can cause muscle weakness, fatigue, and muscle injuries cannot repair themselves.
i believe this has been my problem as i am finding my muscles to be repairng now.
please look into this if you have similar problems. may not be your cause or whole answer but it certainly can't hurt.
fibromyalgia is varied as it is a catch all type diagnosis. not everyone has the same symptoms, causes, experiences. i don;t know about nervous system related fibro as i believe mine to be muscle injury related only so i mean no offense to those who cannot relate with my story.
just want to help others as i suffered through hell for years and am now seeing some relief.
also research is now showing many ppl w/ fibro have vitamin d deficiency for whatever reason....also in general american population rising dx of d deficiency as well.

pumibel
05-06-10, 03:04 PM
I have also heard about the vit D deficiency linked to fibro. I was dxed with FMS a couple of years ago, and they were going to do a test for the vitamin D. I left my job and lost the insurance before getting the blood drawn though.

I have to do blood work for the VA soon, so maybe they check it too- they know i have the FMS. I may just start with a supplement over the counter. My mom has fibro too, so she should try that as well.

Mary
05-06-10, 04:24 PM
I take a daily vitamin D supplement. I have found that it helps. My joints don't ache as much when I am taking it. The pain has not completely gone away as I have inflammatory arthritis, but it is bearable most days.

Mary
05-06-10, 04:25 PM
I have also heard about the vit D deficiency linked to fibro. I was dxed with FMS a couple of years ago, and they were going to do a test for the vitamin D. I left my job and lost the insurance before getting the blood drawn though.

I have to do blood work for the VA soon, so maybe they check it too- they know i have the FMS. I may just start with a supplement over the counter. My mom has fibro too, so she should try that as well.

Welcome to the forum. :)

Sit-n-Spin
05-09-10, 12:03 PM
I was just diagnosed again with a D deficiency and have fibromyalgia. I'm taking 50,000 IUs a week for eight weeks.

I read that the skin condition keratosis pilaris can be alleviated by sun exposure or even just taking D3. I never had that condition, although you are supposedly born with it, until recently and have it pretty bad on my legs and arms. I used to be in the sun all the time, but have recently had a D deficiency diagnosed twice in the last couple of years.

Do you have any other problems from your deficiency? I think it causes problems with inflammation which might cause fibro symptoms and obviously skin problems like I mentioned. Ironically, I'd been avoiding the sun because of the rash because I didn't want to aggravate it and it's so ugly!

k31kozumi
05-10-10, 05:00 AM
other symptoms besides severe muscle pain:

muscle weakness, muscle twitching and spasms..even rolling spasms up my torso, traveling tingles also

extreme fatigue, insomnia (bc of pain), even though i take adderall it did nothing for my cognition (i thought i had developed the worst adhd in the world)

cognitive issues...just could not think at times because my thoughts were so slow and i was extremely forgetful,,

when cognitive issues happen i would also have racing thoughts at times and recurring thoughts, also couldn't stand very long i had to lie down so i hardly ate during those days,

i started having vision and hearing issues, hypersensitivity to sounds like high pitched especially and i would think they were words at times...drove me nuts, and vision got wavy, saw things move that shouldn't (i understand that to be from muscle tension now on the eyes)

tinnitus

i quit my job in 2007 and just started working again this year
also ive been in school all the while but i did wiithdraw a couple of semesters

im still supplementing with vitamin d and since my d level was a 12 it will take me almost a year to get it at a good level but each month i am getting better! i also take 50,000 iu 1x week and everyday i take 1500mg D3 in viactive chews. i also get at least 15 min of unprotected sun exposure most days. thinking about upping D3 supplements as i could go up to 5,000mg but im holding off till i do more research.

k31kozumi
05-10-10, 05:02 AM
i forgot to mention weight gain! vitamin D reduces visceral fat levels and i have lost some of the weight. im sure thats due to a few things like im more active as well since i feel better.

Sit-n-Spin
05-10-10, 09:03 AM
other symptoms besides severe muscle pain:

muscle weakness, muscle twitching and spasms..even rolling spasms up my torso, traveling tingles also

extreme fatigue, insomnia (bc of pain), even though i take adderall it did nothing for my cognition (i thought i had developed the worst adhd in the world)

cognitive issues...just could not think at times because my thoughts were so slow and i was extremely forgetful,,

when cognitive issues happen i would also have racing thoughts at times and recurring thoughts, also couldn't stand very long i had to lie down so i hardly ate during those days,

i started having vision and hearing issues, hypersensitivity to sounds like high pitched especially and i would think they were words at times...drove me nuts, and vision got wavy, saw things move that shouldn't (i understand that to be from muscle tension now on the eyes)

tinnitus

i quit my job in 2007 and just started working again this year
also ive been in school all the while but i did wiithdraw a couple of semesters

im still supplementing with vitamin d and since my d level was a 12 it will take me almost a year to get it at a good level but each month i am getting better! i also take 50,000 iu 1x week and everyday i take 1500mg D3 in viactive chews. i also get at least 15 min of unprotected sun exposure most days. thinking about upping D3 supplements as i could go up to 5,000mg but im holding off till i do more research.

How long did you take the 50,000 IUs? I took it about 12 weeks last time and just had it prescribed for 8 weeks this time. I almost took one again yesterday by mistake just in that auto-pilot mode. Oops!

Have you tried cod liver oil? We have some Carlson's brand with lemon flavor that is actually tasty. Our son even likes it.

k31kozumi
05-13-10, 01:31 AM
i was prescribed 4 months for vitamin d 50,000IU, viactive 3x day, and sun exposure 20 minutes every day i can, and i am on month 2. at 4 months i am to have another test. my dr said i will still most likely be low in d but the numbers should be higher than the 12 i was in march!

i am still improving. have a ways to go of course but positive improvement so far.

i used to take cod liver oil in capsules years ago. i like the viactive though. also d3 supplements are pretty cheap and precisely measured so id probably go that route if i stop the viactive.

k31kozumi
06-03-10, 10:39 AM
just thought id update on my status...
i am still improving and still taking the same vitamin d doses

i have more strength, as my muscles are healing, and much less muscle pain.

i still have a lot more healing to go as my muscles were pretty bad (my vitamind level was 12 back in march)

i still have to pace myself and not overdo it but it really looks good so far!!

k31kozumi
08-21-10, 12:32 AM
another update.

i no longer have any fatigue or need for naps.
i still am loosening up.

i feel almost 100% again after 3 years of chronic pain.

i start nursing I in fall and i work full time! and i am not worried about it at all.

thank god.

OnlyMe
08-23-10, 08:33 PM
I am so happy to hear you are doing well.

k31kozumi
08-30-10, 09:52 PM
good news today!

my bloodwork came back and my vitamin d level is 29.8!!! up from 12!!!

muscles still getting better thankgod.:)

INaBOX
01-14-11, 11:58 PM
im confused. just from what ive been researching tonight. if you have a vit D deficiency, then maybe you didn't have fibromyalgia. i heard that vitamind D is actually bad for people with fibro (check the link i posted in this forum).. and that exposure to light worsens the symptoms. also, food containing high levels of vit D is to be avoided as well.


so, those of you who mentioned they had a deficiency, do you think you had fibro in the first place? lots of vit deficiencies have negative symptoms.

Microwench
01-22-11, 04:07 PM
My dr randomly (he is random in the best ways!) told me he wanted to test me for a vit D defficiency last year. I was crazy low. I belive the preferred threshold is somewhere around 50, and I was somewhere around 12-18.

He put me on high dose (50,000iu weekly) vit D for about 2 months, then told me to keep at it with daily OTC supplements.

I can't explain in detail, but I can definitely say I fell better overall since starting the supplement. Less fatigue, less pain. And if i can get that from an inexpensive OTC supplement instead of more drugs, that makes me happy.

I currently take 1,000iu daily of Vitamin D, as well as 40mg Vyvanse for ADHD, 10mg Prozac and 100mg Trazadone for the Fibro.

MrObvious
03-12-11, 03:12 AM
I know i feel like crap if I don't take D and I don't have Fibrio. My wife does and she and I take 1kIU a day and we feel better. She even says her Fibrio may just be a D deficiency.

Lunacie
03-12-11, 12:01 PM
Do you have any other problems from your deficiency? I think it causes problems with inflammation which might cause fibro symptoms and obviously skin problems like I mentioned. Ironically, I'd been avoiding the sun because of the rash because I didn't want to aggravate it and it's so ugly!

Other problems that seem to be related to a Vitamin D deficiency are:

Seasonal Affective Disorder
Worsening of PMS
Rickets (soft weak bones)
Depression
chronic fatigue
weight loss
diabetes
heart disease
stroke
osteoporosis

I've suffered from Seasonal Affective Disorder, Depression, Chronic Fatigue most of my life, and began having easily broken bones at about age 45. I learned that deficiency of Vitamin D can cause SAD, so I started taking it about 4 months ago. The SAD and depression and fatigue have all gotten better, although I still don't have as much energy as I would like to have. So hopefully I won't have any more broken bones.

Also - Vitamin D3 seems to be the one related to the health issues.

ArtGypsy
03-12-11, 12:43 PM
I don't do flu shots (me or my kids) - we take a high dose of Vitamin D3 instead (it is proven just as effective and we are RARELY sick).

But I have had joint problems for years. I was told I had Fibro - but I didn't believe it because all I had was joint pain. So I'll say it's just Arthritis.

I HAVE noticed that my joint pain is practically gone. And it is during the winter months when I take the high dosage of Vit D.

Never really put the joint pain and Vit D together.....huh :)

Lunacie
03-12-11, 01:46 PM
I do have arthritis in my lower back/hips, have had it there for 35 years, so far I can't tell that the Vita D has helped with that. Wish it would.

ArtGypsy
03-12-11, 05:22 PM
I do have arthritis in my lower back/hips, have had it there for 35 years, so far I can't tell that the Vita D has helped with that. Wish it would.

What dose do you take? I take 5,000 IU's a day. If it's cold or flu season I take 10,000 IU's and if I'm getting sick - 20,000 IU's a day.

My arthritis mainly effects my feet, hands and neck.

Lunacie
03-12-11, 06:54 PM
What dose do you take? I take 5,000 IU's a day. If it's cold or flu season I take 10,000 IU's and if I'm getting sick - 20,000 IU's a day.

My arthritis mainly effects my feet, hands and neck.

That sounds like a lot to me, I take about 1,250 IU a day. I may bump it up when the summer starts to wind down. Cold weather makes me ache all over as well as getting the SAD.

I wish this thread had been here two weeks ago before I started getting sick, it would have definately been worth taking a bigger dose for a few days.

My neck bothers me mostly when it's cold. I sprained it when I was 19 and have less than 75% mobility in it now. My hands have started to bother me in cold weather, don't know if that's arthritis or not. I don't remember any family members having much trouble with arthritis in their hands, but my dad's knees were horrible too.

ArtGypsy
03-12-11, 07:07 PM
That sounds like a lot to me, I take about 1,250 IU a day. I may bump it up when the summer starts to wind down. Cold weather makes me ache all over as well as getting the SAD.

I wish this thread had been here two weeks ago before I started getting sick, it would have definately been worth taking a bigger dose for a few days.

My neck bothers me mostly when it's cold. I sprained it when I was 19 and have less than 75% mobility in it now. My hands have started to bother me in cold weather, don't know if that's arthritis or not. I don't remember any family members having much trouble with arthritis in their hands, but my dad's knees were horrible too.

It comes in 5000 IU capsules. It's not a lot, especially if your deficient. Google Vit D3 dosage and you'll see a lot of info on how what the RDA is not sufficient. And overdosing on it is very hard, your body gets rid of it quickly.

Vit D doesn't get the publicity it should - like Vitamin C does, but it is really just as, if not more, important to immunity and other areas of our health.

Lunacie
03-12-11, 07:14 PM
Most of the bottles I see around here are 400 IU, itty bitty little caps that look like miniature fish oil capsules.

Since I have had my Vita D levels tested I'm just assuming they are deficient. I know my family doesn't eat much fish or green veggies, but I've been serving more green veggies lately. The oldest girl Will Not Eat any veggie but corn and sometimes carrots. I'm going to start steaming broccoli and sneaking it into stuff. ;)

ArtGypsy
03-12-11, 07:28 PM
Schiff just came out with a "Mega-D3" - but it's about $18 a bottle of 60 (I had a coupon for $5 off and found them on sale so I bought them).
If you have a health food store, or even look online, you can get a bottle of 60 probably for around $6.

We had the H1N1 go around pretty bad a year or so ago and I still refused to get the flu vaccine for me or my kids (although I am on medication, I'm not FOR Rx's or vaccines) and we all came through the season with no illness and I attribute it to the Vit D3.

It's really hard to get what you need through food - but I am all for going for it nutritionally first.

INaBOX
03-17-11, 07:57 PM
I know i feel like crap if I don't take D and I don't have Fibrio. My wife does and she and I take 1kIU a day and we feel better. She even says her Fibrio may just be a D deficiency.

it's hard to diagnose fibro because we're really just looking at the symptoms. if your wife does have a vit D deficiency, then id suspect she doesn't have fibro at all.

Arei
03-18-11, 04:17 AM
I have fibro and was diagnosed with severe vitamin d deficiency, and while I noticed an increase in energy, I've had no relief of pain symptoms. And I've been taking pretty high doses for quite awhile too :/ I atleast take 7,000 units a day between my multivitamin and 5000u D3 pill. It's bumped up to 9K if I remember to take my calcium pills :P My doctor told me that in people with severe deficiency, 5000-8000 or more might be nessecary. For awhile I took a 50K pill once a week (may take it again). After I had it checked again after my first few rounds of this, my level had dropped even more, but I went a month of forgetting daily supplements. My doctor told me it would take taking a 50K pill every day over a month or two to overdose, so 5000-10K a day is not too much, especially if you are severely low.

The only thing supplement wise that has had any affect is Fish oil. I took this and bam, while it's not major relief, I'd stay there's about a 20% improvement, and at the very least, it has eliminated all discomfort during exercise, which is a major breakthrough for me.

I have been somewhat inactive since the start of the year (and the inactivity has increased my pain level) because I'm still recovering from an antibiotic screwing up my gut. I'm very IBS-y now. But WOW the fish oil benefit during exercise is crazy!!! I'm hoping now that I FINALLY have a job and if I can get on a good schedule that includes exercise, after awhile the pain will subside.



Vitamin D is good for bone pain I have heard, I'm not sure about muscle inflammation, which seems to be my issue.

Marcos01
09-05-11, 06:10 AM
I think you can get vitamin supplements online as that may help you to deal with the situation better. Looking at your case, i suggest it would be better if you consult a physician and consume the nutritional supplements on a daily basis as that may help you to lead a stress-free life.

Lebatron
10-26-11, 11:50 PM
Dr Mercola was one of the early advocates of the importance of Vit D-3. If you wish to learn more about the latest on D do a search for D at mercola.com.

His recomendation was to have a level around 60. I believe now that he prefers to see 80. He also mentions that one test out there that is commonly used gives back inaccurate values and suggests people to use another one. I don't remember the details but it is covered on his articles about D. Just ask your Dr. what lab was used and see if it was the right choice or the wrong.

I notice some of you are just taking 1000-2000mg a day. If you aren't getting much sun each day you will not hurt yourself if you take 5000 instead. In fact it is said your skin can produce 5000 worth in just 30 min in your nude. However how many of us go outside mostly nude? Sure tanning is close to that, but most people say they get sun everyday when in fact all that means is that some sun shined on their face and hands. You got to put that into prepective. That is not enough exposure for the skin to make a healthy dose of D for you.

If 5000 sound like a high number to you concider that some vit D experts are saying 20,000 would not hurt. Outdoor working people like farmers of old easily manufactured 20,000 D per day in the sun. If that sum does not harm, and how could it when we evolved to make D that way, then surely 5000 per day in pills is hardly over doing it.

We are entering a new age in which Rickets has made a comeback even among healthy people. Children are spending to much time indoors. And the poor diet of factory foods many parents are feeding their chilren today adds to the problem of D deficency.

There arn't many foods high in D which is why the skin makes it for us. Its black children in northern lattitudes that are the most susestable to this problem. Thier high pigment blocks to much sun. They evolved to have optimal skin for eqator latitudes. As man moved north they lost the dark pigment so that the skin can manufacture D easier. An adaptation to the new habitat.

There was a great post over at mercola.com that said someting to the effect that if your family Dr was not checking your D level on a regular basis he is basically guilty of malpractice. Why did this guy say this? Because there is so much evidence out there now just how important vit D is to health. It's links to cancer, the immune system, and many other things is huge. As some say D is the new vitimin C. lol.

Anyway, I know it is still common among family doctors not to even care what your D level is. They are old school and think that just because some factory foods are Vit D fortified there is no way it could be a problem. Sadly your average GP is flat wrong again. My GP has never once bothered to have mine checked, and I suffer from Celiac's. How ironic is that. It's very important for Celiac's to find out where their D level is at even more so than the average healty person. Sadly, I know the doctors in my town are no better than the one I already got so I take it upon myself to take control over my own health. BTW that's Dr Mercola's solgan as well.

Lizzie80
06-29-15, 08:56 PM
just thought id update on my status...
i am still improving and still taking the same vitamin d doses

i have more strength, as my muscles are healing, and much less muscle pain.

i still have a lot more healing to go as my muscles were pretty bad (my vitamind level was 12 back in march)

i still have to pace myself and not overdo it but it really looks good so far!!

I have to wonder if what seems like a jump in fibromyalgia patients is linked to the anti-sun stance of our culture starting around 1985. I am EXTREMELY pale, haven't had much sun exposure since my teens (I'm 35), have chronically low vitamin D levels, overweight, fibromyalgia sufferer. I need to get out more and get sun, but taking walks on concrete is just killer on my joints. I live in the city, no place to just sit outside. Supplements have been mostly ineffective for me. I do believe sun exposure is healthy and helpful, at least in moderation. A lack of it seems to have caused or contributed to some of our modern woes.

Lisa_Mac
07-24-15, 05:08 AM
I've been found to be very deficient in Vitamin D. I was prescribed 1000iu a day of D3 but I've only really seen an improvement since I've upped my dose to 10 000 units a day. 1000 for someone who's deficient (under 20 ng/mL) is not enough. Don't forget to supplement with Vitamin K and Magnesium as well and to drink plenty water.

If anyone is really interested there is a Facebook page called Vitamin D deficiency Syndrome which is a public group, and has LOTS of great information and a Vitamin D Protocol to help you.

http://https://www.facebook.com/groups/120738731293512/?fref=nf

Take care
Lx

Lunacie
07-24-15, 12:00 PM
I have to wonder if what seems like a jump in fibromyalgia patients is linked to the anti-sun stance of our culture starting around 1985. I am EXTREMELY pale, haven't had much sun exposure since my teens (I'm 35), have chronically low vitamin D levels, overweight, fibromyalgia sufferer. I need to get out more and get sun, but taking walks on concrete is just killer on my joints. I live in the city, no place to just sit outside. Supplements have been mostly ineffective for me. I do believe sun exposure is healthy and helpful, at least in moderation. A lack of it seems to have caused or contributed to some of our modern woes.

My worst fibro symptoms happened at a time when I was getting plenty of sun.
I think some people just don't metabolize stuff properly for some reason.

Powderbucket
08-17-15, 06:21 AM
I've just started taking Vitamin D to counter-act some of the side-effects I get from Concerta 36mg.

I've noticed that I now have an appetite, which is great! My mom was also given it for anxiety (the Rx one) and it seems to be making her happier. I think it's nice but I know it's bad if you get just that little too much.

Powderbucket
08-17-15, 06:23 AM
I've just started taking Vitamin D to counter-act some of the side-effects I get from Concerta 36mg.

I've noticed that I now have an appetite, which is great! My mom was also given it for anxiety (the Rx one) and it seems to be making her happier. I think it's nice but I know it's bad if you get just that little too much.

Lunacie
08-17-15, 10:55 AM
I've just started taking Vitamin D to counter-act some of the side-effects I get from Concerta 36mg.

I've noticed that I now have an appetite, which is great! My mom was also given it for anxiety (the Rx one) and it seems to be making her happier. I think it's nice but I know it's bad if you get just that little too much.

It takes more than "a little bit too much" to cause significant side effects.
You'd have to take one really large dose all at once, or take a large dose
daily for a few months.

Unmanagable
08-17-15, 11:14 AM
The vitamin d thing still perplexes me. I know peeps who live in places where they get massive amounts of sun, but continue to test low in vit. d and have to supplement.

How would someone find out just how well their body actually takes it in and uses it? Or is it something you just have to rely on via ongoing pricey testing to continually check levels? I'd also be anxious to know if and how dietary changes switch up the absorption of it, if at all.

The sun can energize me and bring about my best days, or, it can take me down hard and fast if I over do it the least little bit while I'm out in it. Just depends on the day.

Lunacie
08-17-15, 12:33 PM
The vitamin d thing still perplexes me. I know peeps who live in places where they get massive amounts of sun, but continue to test low in vit. d and have to supplement.

How would someone find out just how well their body actually takes it in and uses it? Or is it something you just have to rely on via ongoing pricey testing to continually check levels? I'd also be anxious to know if and how dietary changes switch up the absorption of it, if at all.

The sun can energize me and bring about my best days, or, it can take me down hard and fast if I over do it the least little bit while I'm out in it. Just depends on the day.

Good question. I know vitamin C can help with the absorption of calcium.
Is there something that would help with the absorption of Vitamin D?

Fortune
08-17-15, 06:43 PM
I have to wonder if what seems like a jump in fibromyalgia patients is linked to the anti-sun stance of our culture starting around 1985. I am EXTREMELY pale, haven't had much sun exposure since my teens (I'm 35), have chronically low vitamin D levels, overweight, fibromyalgia sufferer. I need to get out more and get sun, but taking walks on concrete is just killer on my joints. I live in the city, no place to just sit outside. Supplements have been mostly ineffective for me. I do believe sun exposure is healthy and helpful, at least in moderation. A lack of it seems to have caused or contributed to some of our modern woes.

I suspect the jump in fibromyalgia patients is due to an increased awareness of fibromyalgia, not an increase in fibromyalgia.

Greyhound1
08-24-15, 05:22 PM
Good question. I know vitamin C can help with the absorption of calcium.
Is there something that would help with the absorption of Vitamin D?

http://m.wikihow.com/Best-Absorb-Vitamin-D-Supplements

Lunacie
08-24-15, 05:58 PM
http://m.wikihow.com/Best-Absorb-Vitamin-D-Supplements

Thank you hound. I've been trying to remember to use the magnesium spray
every day, but haven't developed the daily habit yet. That link says that along
with taking Vitamin D with food, magnesium can help with absorption. I'll try
to remember to use it.

Greyhound1
08-24-15, 07:31 PM
Thank you hound. I've been trying to remember to use the magnesium spray
every day, but haven't developed the daily habit yet. That link says that along
with taking Vitamin D with food, magnesium can help with absorption. I'll try
to remember to use it.

What I found interesting was that people with light skin produce much more vitamin D from the sun than dark skin. It says it takes 5-10 times more sun exposure than light skin.

Lunacie
08-24-15, 10:59 PM
What I found interesting was that people with light skin produce much more vitamin D from the sun than dark skin. It says it takes 5-10 times more sun exposure than light skin.

I have light skin but I'm sure as heck Vitamin D deficient.

frenchmoxie
02-14-16, 01:14 PM
I know this thread is a little old, but the information is still valuable to new folks.
Vitamin D is often low in those with chronic health conditions, especially people with autoimmune issues like myself. Vitamin D is required for the absorption of Calcium.
Vitamin D is a FAT SOLUBLE vitamin meaning that you must take your supplement with a fat containing meal or snack. Other fat soluble vitamins are A, E, and K. Just a tip. Buy the vit. D in softgel form. And take at least 1,000 I.U. I take 5,000 I U. In the winter. Because as most of us know, lack of sunlight = lack of vitamin D production

Lunacie
02-14-16, 06:44 PM
I know this thread is a little old, but the information is still valuable to new folks.
Vitamin D is often low in those with chronic health conditions, especially people with autoimmune issues like myself. Vitamin D is required for the absorption of Calcium.
Vitamin D is a FAT SOLUBLE vitamin meaning that you must take your supplement with a fat containing meal or snack. Other fat soluble vitamins are A, E, and K. Just a tip. Buy the vit. D in softgel form. And take at least 1,000 I.U. I take 5,000 I U. In the winter. Because as most of us know, lack of sunlight = lack of vitamin D production

Good reminder. About half way through my work today I noticed I was dragging.

Tie that in with hands that were hurting almost too bad to hold onto steering wheel this morning and my fibro is acting up.

I take two 1,000 IU soft gels every morning, but recently switched brands.

I wonder if switching brands has anything to do with this flare up?

Also ... it's important that the Vitamin D you take is D 3 (not 2 or 4).

Socaljaxs
02-14-16, 11:56 PM
I truly think the majority of people would test low on vitamin D. Most chronic pain sufferers usually at one point have this deficiency. When I was getting additional testing for osteoporosis the only low level I had was vitamin d.. Surprisingly I never did anything to treat my osteoporosis. Other than take vitamin d but my levels now are both good and I know longer have osteoporosis

Lunacie
02-15-16, 12:07 PM
I truly think the majority of people would test low on vitamin D. Most chronic pain sufferers usually at one point have this deficiency. When I was getting additional testing for osteoporosis the only low level I had was vitamin d.. Surprisingly I never did anything to treat my osteoporosis. Other than take vitamin d but my levels now are both good and I know longer have osteoporosis

That's actually the reason I started taking it, I'd had too many broken bones for someone who wasn't even 60 at the time.

Lunacie
07-14-16, 03:50 PM
The feeling that bugs are crawling on me is annoying.

But the feeling that something is taking a big ol' bite out of my foot is more than annoying. It's painful.

Especially when it happens while I'm driving and my foot jumps off the gas pedal. :eek:

And I'm really tired of the intense need to pee. :(

HealingSoul
07-16-16, 12:34 PM
Those are symptoms of late-stage Lyme.
I had those symptoms too!!
Misdiagnosed 20 years!

Lunacie
07-16-16, 03:16 PM
Those are symptoms of late-stage Lyme.
I had those symptoms too!!
Misdiagnosed 20 years!

I don't think I match enough of the symptoms listed at https://www.lymedisease.org/lyme-basics/lyme-disease/symptoms/

That site says:

Many Lyme symptoms, such as fatigue, cognitive impairment, joint pain, poor sleep, mood problems, muscle pain, and neurological presentations also occur in other diseases. Hence, the symptoms of Lyme disease significantly overlap those of chronic fatigue, fibromyalgia, rheumatoid arthritis, multiple sclerosis, Parkinson’s disease, ALS, depression and Alzheimer’s disease. Many Lyme patients report being misdiagnosed with a different condition before being properly diagnosed with Lyme disease.

In order for the Centers for Disease Control (CDC) to recognize a Lyme case for surveillance purposes, there must be “objective” findings, such as positive blood tests, Bell’s palsy or joint swelling (even though Lyme blood tests are unreliable and the CDC’s accepted “objective” indicators are not common).

I've never had Bell's Palsy or swelling of the large joints. I see no point in getting the blood test.

That said, the son of a friend was thought to have MS or something like that and after being treated for Lyme disease is doing much better.

_Karen_Cee_
07-25-16, 12:52 PM
I'm a fibro sufferer as well, currently taking Vit D 50,000 IU once a week. I have slight olive complexion and living here in GA we do have a lot of sun (a LOT right now, it's blazing hot today!) so whether it's because of the auto-immune component of fibro or something else, I was told last week I probably need to stay on it regularly. Each time I take it, and my levels go up, eventually they go back down.

Lunacie - you mentioned your hands hurting...mine hurt in a bad way more than any other part of my body. My elbows are getting there, increasing pain levels. But my hands...oy vey...what do you do for the pain?

sarahsweets
07-25-16, 01:36 PM
I'm a fibro sufferer as well, currently taking Vit D 50,000 IU once a week. I have slight olive complexion and living here in GA we do have a lot of sun (a LOT right now, it's blazing hot today!) so whether it's because of the auto-immune component of fibro or something else, I was told last week I probably need to stay on it regularly. Each time I take it, and my levels go up, eventually they go back down.

Lunacie - you mentioned your hands hurting...mine hurt in a bad way more than any other part of my body. My elbows are getting there, increasing pain levels. But my hands...oy vey...what do you do for the pain?

Im in the process of figuring out if my issues are related to rheumatoid arthritis or not. ( most likely is). They rx'd me lidocaine and its helped a little.

Lunacie
07-25-16, 01:36 PM
I'm a fibro sufferer as well, currently taking Vit D 50,000 IU once a week. I have slight olive complexion and living here in GA we do have a lot of sun (a LOT right now, it's blazing hot today!) so whether it's because of the auto-immune component of fibro or something else, I was told last week I probably need to stay on it regularly. Each time I take it, and my levels go up, eventually they go back down.

Lunacie - you mentioned your hands hurting...mine hurt in a bad way more than any other part of my body. My elbows are getting there, increasing pain levels. But my hands...oy vey...what do you do for the pain?

Fortunately the pain in my hands isn't a constant. Different pains seem to come with each flaire of this odd disease.

When any of the signs are noticable and annoying, I bump my Vita D3 dose and add Aleve or Ibuprofen.

I also bought a small TENS unit at Walmart and use that on particularly painful areas. It's been very helpful for my knee, less so for my back.