Re: Low Vitamin D

[Guest guest]

Greetings a,

I know that there is a correlation between low Vitamin D levels and joint pain.

No one seems to be sure which way it goes (does low D levels cause the

pain/inflammation or or does something about the pain/inflammation result in

drops in D level). Either way, I know it is something my rheumy checks often and

that I, per his order, take daily as well.

Blessings,

 

Subject: Low Vitamin D

To: Stillsdisease

Date: Wednesday, May 16, 2012, 2:51 PM

 

My rheumatologist called me at work today and said the test I took on

Friday showed that my vitamin D level was extremely low and he wants me to start

right away on 50,000 unit capsules. I wonder if the low vitamin D could be the

cause I my excess pain recently and maybe I don't need the Gabapentin? Just a

thought.

[Guest guest]

a,

Mine was extremely low as well and I was started on the same amount a couple of

years ago. I thought because I have an allergy to the sun that may be why mine

is so low but have read it is not that uncommon, especially for people that live

in less sunny areas and as people age.

I do not notice any difference in my pain though. I had read and been told that

the vitamin D is very important for bone health. I’m glad your doctor has

prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

good luck,

]

From: a

Subject: Low Vitamin D

My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

[Guest guest]

Earlier in the year I also had a low Vitamin D count - was put on 50,000 MG

daily for 3 weeks followed by 1,000 (over the counter) daily.

in Philly

To: Stillsdisease

Sent: Wednesday, May 16, 2012 3:51 PM

Subject: Low Vitamin D

 

My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

[Guest guest]

Thank you for your reply . Living in Minnesota I certainly fit into the

less sunny areas. Even though you didn't notice any difference in your pain, did

you notice any difference in your level of fatigue?

>

> a,

>

> Mine was extremely low as well and I was started on the same amount a couple

of years ago. I thought because I have an allergy to the sun that may be why

mine is so low but have read it is not that uncommon, especially for people that

live in less sunny areas and as people age.

> I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor has

prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> good luck,

> ]

> From: a

> Subject: Low Vitamin D

>

>

> My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

>

>

>

>

>

>

[Guest guest]

That’s hard to say a with the fatigue of several conditions and

medications over the years. Sorry I can’t say about that one.

Let us know if you find it is so for you.

Smiles

From: a

Subject: Re: Low Vitamin D

Even though you didn't notice any difference in your pain, did you notice any

difference in your level of fatigue?

[Guest guest]

Hi a,

I'm new here, my name is Holly. I'm a counseling psychologist with 10 or more

years of Still's experience.. sadly! I have found an amazing amount of relief

from depression and some decrease in pain levels from using a light box. I have

had to be on mega-doses of D but it's measuring in the normal range since I've

started sitting near my light 45 min/day or more. I live in Wyoming where light

is most of what we have! But, it seems most of us could use more. I bought a

small 8x9? portable light from Amazon. This one is called Sphere and it's very

small, and comes with a little pouch to carry it around in. It's worth a try

for all the stuff that comes along with Still's disease. Good luck.

> >

> > a,

> >

> > Mine was extremely low as well and I was started on the same amount a couple

of years ago. I thought because I have an allergy to the sun that may be why

mine is so low but have read it is not that uncommon, especially for people that

live in less sunny areas and as people age.

> > I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor has

prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> > good luck,

> > ]

> > From: a

> > Subject: Low Vitamin D

> >

> >

> > My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi a, Holly & ,

I wanted to chime in on the posts here. Welcome to the group Holly! I have

fibromyalgia, and as knows my 29yo daughter has fibromyalgia and Still’s

and now they are looking at the possibility that she also has Lupus. My

daughter and I share so many of the same symptoms possibly related to the

fibromyalgia but not sure, it’s confusing. One thing I have in common with

you ladies, is that my vitamin D levels were also low and the doctor prescribed

Vitamin D. I live in sunny Southern California and walk my dog outside several

times a day and still have deficiency. I take and have been taking a supplement

of just D3 at night before bed. This was all through being diagnosed with low

levels of D. I continue to take the D3 and notice when I don’t take it, I

have more pain. For me the Vitamin D is helpful with my type of pain. It’s

mostly muscular related.

I’ve also been on Neurontin, which is Gabapentin if I remember correctly, for

nerve pain, I have a neuropathy in my left leg, and it gave me a lot of side

affects especially at a higher dose and I really did not gain much benefit from

taking it at all. I know it does help a lot of people, but I just wanted to

share my experience with it. I remember feeling like it was working a bit for

awhile and then nothing different so I went off of it. I also tried Lyrica and

was off of that even quicker with no help and many side affects. I know for my

daughter, the Lyrica has helped her nerve pain however the Neurontin was about

the same for her as me, we did not feel the benefits from it.

My daughter was on Kineret with much success Holly so I know how you feel to

have found something that works so well for you. It seems to be mild enough

also not to have extreme side affects. Unfortunately though my daughter began

loosing weight, and got sicker this past year and they finally took her off

Kineret so that they could run extensive testing to determine a possible

additional illness that can be exuberated by the taking of the Kineret. So she

had help for the Still’s with it, but they suspect possible Lupus along with

the Still’s which Kinert would aggravate. Such an individual formula for each

of us. My hopes are for everyone to get better and feel good days and find some

enjoyment in their life. My daughter is not up to being on a support group.

Bless her heart, she just doesn’t have the energy. I wish she was going to

counseling because it really gets her down a lot and so far she does not wish to

take antidepressants at all. Her moods swing and she has a lot of trouble

especially around her period. I k now how hard life is on her, and feel so much

compassion. Like any Mother I want the best for her. I try to be nurturing

without being over bearing. It’s a balance too. So tricky at times. But,

have to keep up the hope for all of us to have a life that is at least peace

filled and joyful.

All my best,

From: hollydorst

Sent: Friday, May 18, 2012 8:11 AM

To: Stillsdisease

Subject: Re: Low Vitamin D

Hi a,

I'm new here, my name is Holly. I'm a counseling psychologist with 10 or more

years of Still's experience.. sadly! I have found an amazing amount of relief

from depression and some decrease in pain levels from using a light box. I have

had to be on mega-doses of D but it's measuring in the normal range since I've

started sitting near my light 45 min/day or more. I live in Wyoming where light

is most of what we have! But, it seems most of us could use more. I bought a

small 8x9? portable light from Amazon. This one is called Sphere and it's very

small, and comes with a little pouch to carry it around in. It's worth a try for

all the stuff that comes along with Still's disease. Good luck.

> >

> > a,

> >

> > Mine was extremely low as well and I was started on the same amount a couple

of years ago. I thought because I have an allergy to the sun that may be why

mine is so low but have read it is not that uncommon, especially for people that

live in less sunny areas and as people age.

> > I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor

has prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> > good luck,

> > ]

> > From: a

> > Subject: Low Vitamin D

> >

> >

> > My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

> >

> >

> >

> >

> >

> >

[Guest guest]

Hi a, Holly & ,

I wanted to chime in on the posts here. Welcome to the group Holly! I have

fibromyalgia, and as knows my 29yo daughter has fibromyalgia and Still’s

and now they are looking at the possibility that she also has Lupus. My

daughter and I share so many of the same symptoms possibly related to the

fibromyalgia but not sure, it’s confusing. One thing I have in common with

you ladies, is that my vitamin D levels were also low and the doctor prescribed

Vitamin D. I live in sunny Southern California and walk my dog outside several

times a day and still have deficiency. I take and have been taking a supplement

of just D3 at night before bed. This was all through being diagnosed with low

levels of D. I continue to take the D3 and notice when I don’t take it, I

have more pain. For me the Vitamin D is helpful with my type of pain. It’s

mostly muscular related.

I’ve also been on Neurontin, which is Gabapentin if I remember correctly, for

nerve pain, I have a neuropathy in my left leg, and it gave me a lot of side

affects especially at a higher dose and I really did not gain much benefit from

taking it at all. I know it does help a lot of people, but I just wanted to

share my experience with it. I remember feeling like it was working a bit for

awhile and then nothing different so I went off of it. I also tried Lyrica and

was off of that even quicker with no help and many side affects. I know for my

daughter, the Lyrica has helped her nerve pain however the Neurontin was about

the same for her as me, we did not feel the benefits from it.

My daughter was on Kineret with much success Holly so I know how you feel to

have found something that works so well for you. It seems to be mild enough

also not to have extreme side affects. Unfortunately though my daughter began

loosing weight, and got sicker this past year and they finally took her off

Kineret so that they could run extensive testing to determine a possible

additional illness that can be exuberated by the taking of the Kineret. So she

had help for the Still’s with it, but they suspect possible Lupus along with

the Still’s which Kinert would aggravate. Such an individual formula for each

of us. My hopes are for everyone to get better and feel good days and find some

enjoyment in their life. My daughter is not up to being on a support group.

Bless her heart, she just doesn’t have the energy. I wish she was going to

counseling because it really gets her down a lot and so far she does not wish to

take antidepressants at all. Her moods swing and she has a lot of trouble

especially around her period. I k now how hard life is on her, and feel so much

compassion. Like any Mother I want the best for her. I try to be nurturing

without being over bearing. It’s a balance too. So tricky at times. But,

have to keep up the hope for all of us to have a life that is at least peace

filled and joyful.

All my best,

From: hollydorst

Sent: Friday, May 18, 2012 8:11 AM

To: Stillsdisease

Subject: Re: Low Vitamin D

Hi a,

I'm new here, my name is Holly. I'm a counseling psychologist with 10 or more

years of Still's experience.. sadly! I have found an amazing amount of relief

from depression and some decrease in pain levels from using a light box. I have

had to be on mega-doses of D but it's measuring in the normal range since I've

started sitting near my light 45 min/day or more. I live in Wyoming where light

is most of what we have! But, it seems most of us could use more. I bought a

small 8x9? portable light from Amazon. This one is called Sphere and it's very

small, and comes with a little pouch to carry it around in. It's worth a try for

all the stuff that comes along with Still's disease. Good luck.

> >

> > a,

> >

> > Mine was extremely low as well and I was started on the same amount a couple

of years ago. I thought because I have an allergy to the sun that may be why

mine is so low but have read it is not that uncommon, especially for people that

live in less sunny areas and as people age.

> > I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor

has prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> > good luck,

> > ]

> > From: a

> > Subject: Low Vitamin D

> >

> >

> > My rheumatologist called me at work today and said the test I took on Friday

showed that my vitamin D level was extremely low and he wants me to start right

away on 50,000 unit capsules. I wonder if the low vitamin D could be the cause I

my excess pain recently and maybe I don't need the Gabapentin? Just a thought.

> >

> >

> >

> >

> >

> >

[Guest guest]

Wow, I've never heard of a light box but it certainly sounds like something

worth checking in to. Thanks Holly.

> > >

> > > a,

> > >

> > > Mine was extremely low as well and I was started on the same amount a

couple of years ago. I thought because I have an allergy to the sun that may be

why mine is so low but have read it is not that uncommon, especially for people

that live in less sunny areas and as people age.

> > > I do not notice any difference in my pain though. I had read and been

told that the vitamin D is very important for bone health. I’m glad your

doctor has prescribed it for you. I think it is a very good thing that the

medical profession is learning more about how supplements play a part in our

bodies health. I was just told at my Monday appointment that the bleeding spots

under my skin will be helped by taking vitamin C.

> > > good luck,

> > > ]

> > > From: a

> > > Subject: Low Vitamin D

> > >

> > >

> > > My rheumatologist called me at work today and said the test I took on

Friday showed that my vitamin D level was extremely low and he wants me to start

right away on 50,000 unit capsules. I wonder if the low vitamin D could be the

cause I my excess pain recently and maybe I don't need the Gabapentin? Just a

thought.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello . Thank you for your very informative reply. I feel bad for both you

and your daughter. I know when I was first diagnosed with Stills the dr.

insisted I take an antipressant. He said there's no way you can be in pain

everyday and not be depressed. My husband was against it at first but now I

think he's glad I take it. If Kineret causes weight loss than sign me up! I

never did lose the extra 50 lbs I gained when I was on prednisone. To this day

I have a love/hate relationship with prednisone. I never felt better in my life

than when I was on prednisone. But I blew up in weight, and my personality was

on a level with Sybil. (Guess I'm showing my age, half of you probably don't

even know who Sybil is).

> > >

> > > a,

> > >

> > > Mine was extremely low as well and I was started on the same amount a

couple of years ago. I thought because I have an allergy to the sun that may be

why mine is so low but have read it is not that uncommon, especially for people

that live in less sunny areas and as people age.

> > > I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor

has prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> > > good luck,

> > > ]

> > > From: a

> > > Subject: Low Vitamin D

> > >

> > >

> > > My rheumatologist called me at work today and said the test I took on

Friday showed that my vitamin D level was extremely low and he wants me to start

right away on 50,000 unit capsules. I wonder if the low vitamin D could be the

cause I my excess pain recently and maybe I don't need the Gabapentin? Just a

thought.

> > >

> > >

> > >

> > >

> > >

> > >

[Guest guest]

Hello . Thank you for your very informative reply. I feel bad for both you

and your daughter. I know when I was first diagnosed with Stills the dr.

insisted I take an antipressant. He said there's no way you can be in pain

everyday and not be depressed. My husband was against it at first but now I

think he's glad I take it. If Kineret causes weight loss than sign me up! I

never did lose the extra 50 lbs I gained when I was on prednisone. To this day

I have a love/hate relationship with prednisone. I never felt better in my life

than when I was on prednisone. But I blew up in weight, and my personality was

on a level with Sybil. (Guess I'm showing my age, half of you probably don't

even know who Sybil is).

> > >

> > > a,

> > >

> > > Mine was extremely low as well and I was started on the same amount a

couple of years ago. I thought because I have an allergy to the sun that may be

why mine is so low but have read it is not that uncommon, especially for people

that live in less sunny areas and as people age.

> > > I do not notice any difference in my pain though. I had read and been told

that the vitamin D is very important for bone health. I’m glad your doctor

has prescribed it for you. I think it is a very good thing that the medical

profession is learning more about how supplements play a part in our bodies

health. I was just told at my Monday appointment that the bleeding spots under

my skin will be helped by taking vitamin C.

> > > good luck,

> > > ]

> > > From: a

> > > Subject: Low Vitamin D

> > >

> > >

> > > My rheumatologist called me at work today and said the test I took on

Friday showed that my vitamin D level was extremely low and he wants me to start

right away on 50,000 unit capsules. I wonder if the low vitamin D could be the

cause I my excess pain recently and maybe I don't need the Gabapentin? Just a

thought.

> > >

> > >

> > >

> > >

> > >

> > >