Body Pain Question

[Guest guest]

.. It appears that my veins

swell where you can actually see them as they must become inflamed

and they literally hurt because of inflammation etc. This is from

head to toe so that it takes every bit of strength to get out of bed,

Sarcoidosis can effect even the lining of the blood vessels. So yes, it could the systemic inflammation.

One of the things that I've done to figure out why this is happening when I'm going thru it-- is to do a mental inventory of what it is that i've been eating. If I go on a dairy product binge, then I truly pay with more systemic inflammation. If I drink sodas, or get that wonderful order of fries-- then I pay dearly.

If I forget to take my anti-inflamatories in the morning-- by noon I know it-- my body is screaming at me.

You might want to have your MD run a CRP and an ACE test-- to see what the inflammation markers are in your blood. They may be quite high.

Take care,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

I wanted to ask if anyone else has experienced this with their

sarcoidosis. Since my initial attack in 1980 and being hit with so

much prednisone I developed alot of allergies to foods, chemicals,

preservatives, colors, outside allergens. But since that time I get

episodes where my whole body is thumping. It appears that my veins

swell where you can actually see them as they must become inflamed

and they literally hurt because of inflammation etc. This is from

head to toe so that it takes every bit of strength to get out of bed,

get to work and you just want to zone out as it hurts so much. Over

the years I tell doctors what I am going through and they would say I

am gelling from the cold here in Wisconsin to some thinking I am

probably nuts. But your whole body hurts and heat seems to make it

feel better. My feet actually hurt so that I wear thick socks and

it makes them feel better. I am not sure if this is something that

other experience with sarcoidosis or if I am having more allergic

reactions. I get this same reaction from antibiotics I can't have to

sometimes I can't figure out why.

Has anyone else experienced this?

Thanks

Kat

[Guest guest]

-Hi, I haven't noticed the vein swelling but I think that we all know

how hard it can be to get out of bed at times. I saw in your post

that you were from Wisconsin. I am from Il only 6 minutes from

beloit. I was wondering if you were close to me and could share some

information on any docs that you thought were good. We just moved

here recently so I am still trying to get settled in and get all my

docs set up. Any help would be greatly appreciated. It would be

nice if there was enough of us to get together some time. I hope

that your pain improves soon. Tammy

Neurosarcoidosis , " K " wrote:

>

> I wanted to ask if anyone else has experienced this with their

> sarcoidosis. Since my initial attack in 1980 and being hit with so

> much prednisone I developed alot of allergies to foods, chemicals,

> preservatives, colors, outside allergens. But since that time I

get

> episodes where my whole body is thumping. It appears that my veins

> swell where you can actually see them as they must become inflamed

> and they literally hurt because of inflammation etc. This is from

> head to toe so that it takes every bit of strength to get out of

bed,

> get to work and you just want to zone out as it hurts so much.

Over

> the years I tell doctors what I am going through and they would say

I

> am gelling from the cold here in Wisconsin to some thinking I am

> probably nuts. But your whole body hurts and heat seems to make it

> feel better. My feet actually hurt so that I wear thick socks and

> it makes them feel better. I am not sure if this is something that

> other experience with sarcoidosis or if I am having more allergic

> reactions. I get this same reaction from antibiotics I can't have

to

> sometimes I can't figure out why.

>

> Has anyone else experienced this?

>

> Thanks

> Kat

>

[Guest guest]

Kat, have you seen a doctor when the inflammation is visible? If not, can you take some close-up photos to show them?

I don't get them vein swelling you described. I do have days when I feel achy & exhausted all over, and it doesn't necessarily correlate with the weather. My feet are very tender due to neuropathy, and hurt more if they are even slightly cool. At home I usually wear 2 pairs of thick men's tube socks, the extra-large size. Even with that, I have to wear slippers around the house because the little nubs from the carpet hurt my feet. I can't walk in my driveway without thick soled shoes because it hurts. I used to love going barefoot, but no more. Even when I'm in my hot tub, I keep my "outdoor" slippers (a pair of large men's slipons) by the tub. Summer is actually worse for me because of the air-conditioning everywhere. My kids & grandkids make fun of me for wearing socks with sandals! I've mentioned before about using the handwarmers sold in sporting goods for hunters. They also have toewarmers, but the handwarmers are cheaper & stay warm longer. At Walmart, they are about $1.25 for a pack of 4. You shake them up, then put them in your shoes or socks and they'll stay warm for up to 12 hours. Some of my shoes I can put them on top of my toes; if the shoes are too tight for that, I put them under my arch. I use these if I'm going to be somewhere for several hours that is air-conditioned & I can't wear my thick white sox!

Ramblin' Rose

Moderator

Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Body Pain QuestionDate: Thu, 19 Apr 2007 03:48:32 -0000

I wanted to ask if anyone else has experienced this with their sarcoidosis. Since my initial attack in 1980 and being hit with so much prednisone I developed alot of allergies to foods, chemicals, preservatives, colors, outside allergens. But since that time I get episodes where my whole body is thumping. It appears that my veins swell where you can actually see them as they must become inflamed and they literally hurt because of inflammation etc. This is from head to toe so that it takes every bit of strength to get out of bed, get to work and you just want to zone out as it hurts so much. Over the years I tell doctors what I am going through and they would say I am gelling from the cold here in Wisconsin to some thinking I am probably nuts. But your whole body hurts and heat seems to make it feel better. My feet actually hurt so that I wear thick socks and it makes them feel better. I am not sure if this is something that other experience with sarcoidosis or if I am having more allergic reactions. I get this same reaction from antibiotics I can't have to sometimes I can't figure out why.Has anyone else experienced this?ThanksKat

Exercise your brain! Try Flexicon.

[Guest guest]

Tracie,

That is exactly what I have been going through for 30 yrs. The doctors will say everything is coming back normal, even my ACE which is so frustrating as your whole body is thumping in the veins and you can see it most especially in my hands were they are showing so much. So when your blood tests come back normal they think that you do not have anything going on. So you are saying it is a systemic inflammatory reaction? I know it has always been a reaction but never have heard that the sarcoid was doing this to me a response. I kept thinking I was sensitive to something most especially dairy. I had to totally go off dairy in 1994 as I was found to be allergic to the cow protein. Then I avoided it for 6 yrs and was able to tolerate it. I was so bad from no one finding out that I would have cereal in the morning and want to go right to bed as I could not stay awake and could barely lift my arms and legs and walk and I would fall asleep. Then I developed so many other allergies to food stuffs, etc.

KatSee what's free at AOL.com.

[Guest guest]

Rose,

Boy do I know your foot pain. I have had this for 30 yrs and all the sarcoid information I would read would never say anything about that. It was only that little pamphlet from the lung association. That is why I love wearing these thick padded aerobic socks and they make my feet feel so good even in summer. LOL I special order them through an exercise club in California. I always wish I could wear them to work. LOL Somehow they lessen the pain. Sharing information with this group helps make you feel like you are not alone and not going crazy.

I just wish I knew what to do when the vein thumping starts as it wears you down with the constant total body pain as it is 24/7 with no let up. The one thing that I was doing was the neurologist told me to take vitamins, and then a calcium magnesium pill besides the fish oil and I was wondering if I was getting too much calcium and now I see that sarcoid is sensitive to calcium. I only knew the Vitamin D part.

KatSee what's free at AOL.com.

[Guest guest]

Hi Tammy,

Yes, I can share with you. I live in Milwaukee. I just started seeing a neurologist that is really good for my NS. He is a director of several clinics. I will get you the information as I know he has some in the suburbs of Milwaukee and further south. He was recommended by many doctors and staff at St Lukes to help define if I had MS or NS. I know that he is really guarded as they have to be before they diagnose with MS. He has also gone to other states to talk about stem cell replacement recently for MS.

KatSee what's free at AOL.com.

[Guest guest]

.. So you are saying it is a systemic inflammatory reaction? I know it has always been a reaction but never have heard that the sarcoid was doing this to me a response

Kat,

It's not so much as a response-- or reaction, but actual cells in the blood stream and lining of the blood vessels that becomes inflamed.

Our bodies normally send out white blood cells to fight infection. Then our bodies send out TNF-a protein cells to clear the white cells. It then has to send TNF-b protein cells to clear the TNF-a cells.

Our immune system gets shorted there somewhere== and the white cells, the tnf-a and b cells aren't cleared as they should. They just build upon each other, and form the granulomas. It is actually the TNF-b that we seemingly produce to much of-- so it is that final step that is screwed up.

I'll try to do some research to find the articles I've sent out on this-- in the meantime, go to FSR Foundation for Sarcoidosis Research www.stopsarcoidosis.org and check out the site.

They have explained this issue in their brochure.

HEre is a site that explains vasculitis. Inflammation of the blood vessels.

http://renux.dmed.ed.ac.uk/EdREN/EdRenINFObits/VasculitisLong.html

Here is one from Cleveland Clinic on sarcoidosis and your organs.

http://www.clevelandclinic.org/health/health-info/docs/3500/3572.asp?index=11865

Hope this helps,

Tracie

NS Co-owner/moderator************************************** See what's free at http://www.aol.com.

[Guest guest]

Judy,

When they did all the testing on me in January everything was coming back normal. Ace for me is usually normal and they did the antibody tests, vitamin tests, spinal tap, and they tested me for lupus, lyme, MS etc. With my prior history of sarcoid attack in 1980 and occasional flareups of erythema nodosum and then various sarcoid tumors in my ankle etc they are diagnosing me with neurosarcoidosis at this time due to the 3 lesions found on my MRI. I know when I eat certain foods usually with dairy, or my sensitivities to foodstuffs, and different meds etc the vein thumping starts again throughout my whole body. I just know that I have researched so much all these years to try and figure out what is going on. I also know that I have a hard time in the morning and it seems to ease up during the day sometimes. I know when I take breaths of fresh air it seems to ease it up sum which Tracie has been explaining about the deep breathing. I have regular blood pressure. I just have never been able to figure out what has actually been causing this and it drives you nuts.

KatSee what's free at AOL.com.

[Guest guest]

Kat Are you on ny blood pressure meds? I am on lizinoprel (sp) it is an ace inhibitor-angiotensin converting enzyme reducer, This is one of the tests they use to stage how active your sarcoid is. They also look at your c-reactive protein, it is an indicator for inflamation. When my husband was in the hospital for his week of failing kidneys and slightly failing liver which has all resolved thank goodness. One of the blood tests they did was also an indicator for neurosarcoid. But right now I absolutely can't remember the name of the test. I just hate it when my mind goes blank. When I think of it I will let you know.. Gentle Hugs, Judy in PA

[Guest guest]

Kat, I live about 20 min. northeast of BrownDeer/MenomoneeFalls area....just west of West Bend.. I would also like the name/s of any doc that are good in this area. I had my lymph node biopsy at St. Lukes, Milw. Any help would be great. hugs S.katskreations1@... wrote: Hi Tammy, Yes, I can share with you. I live in Milwaukee. I just

started seeing a neurologist that is really good for my NS. He is a director of several clinics. I will get you the information as I know he has some in the suburbs of Milwaukee and further south. He was recommended by many doctors and staff at St Lukes to help define if I had MS or NS. I know that he is really guarded as they have to be before they diagnose with MS. He has also gone to other states to talk about stem cell replacement recently for MS. Kat See what's free at AOL.com.

Ahhh...imagining that irresistible "new car" smell? Check out

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[Guest guest]

I meant northwest of Milw. sorry Solberg wrote: Kat, I live about 20 min. northeast of BrownDeer/MenomoneeFalls area....just west of West Bend.. I would also like the name/s of any doc that are good in this area. I had my lymph node biopsy at St. Lukes, Milw. Any help would be great. hugs

S.katskreations1 (AT) aol (DOT) com wrote: Hi Tammy, Yes, I can share with you. I live in Milwaukee. I just started seeing a neurologist that is really good for my NS. He is a director of several clinics. I will get you the information as I know he has some in the suburbs of Milwaukee and further south. He was recommended by many doctors and staff at St Lukes to help define if I had MS or NS. I know that he is really guarded as they have to be before they diagnose with MS. He has also gone to other states to talk about stem cell replacement recently for MS. Kat See what's free at

AOL.com. Ahhh...imagining that irresistible "new car" smell?Check out new cars at Yahoo! Autos.

Ahhh...imagining that irresistible "new car" smell? Check out

new cars at Yahoo! Autos.

[Guest guest]

Hi ,

The neurologist I see is Dr. Bhupendra Khatri who is located in the St Lukes Hospital building. He is the regional director and he does do talks in other states for MS stem cell research. I found an article in the journal and I could send to your email address. He was recommended by many of my specialists, as well as nurses etc. If you make an appointment you can tell him I referred you. He is very nice and has a lot of neurologists helping him do the workups. I go for my IV treatments right in the clinic.

Khatri, Bhupendra O MD

2801 W Kinnickinnic Riv # 630, Milwaukee, WI 53215

KatSee what's free at AOL.com.

[Guest guest]

Hi Tammy,

The neurologist I see is Dr. Bhupendra Khatri who is located in the St Lukes Hospital building. He is the regional director and he does do talks in other states for MS stem cell research. I found an article in the journal and I could send to your email address. He was recommended by many of my specialists, as well as nurses etc. If you make an appointment you can tell him I referred you. He is very nice and has a lot of neurologists helping him do the workups. I go for my IV treatments right in the clinic.

Khatri, Bhupendra O MD

2801 W Kinnickinnic Riv # 630, Milwaukee, WI 53215

If you need a good rheumatologist. Rheumatic Disease Center, Dr Kurt Oelke. I can get the address and phone number.

KatSee what's free at AOL.com.

[Guest guest]

Hey, Kat, do you get a kickback for every patient you send to this doctor? You know, like $100 if someone gives your name when they buy a car, etc? Maybe you could ask for a free blood test or shot in the hiney?!? Just being silly, of course. I'm waiting for my cat to decide to come in, so that I can go to bed. I'm giving her 10 more minutes.

Ramblin' Rose

Moderator

From: katskreations1@...Reply-To: Neurosarcoidosis To: Neurosarcoidosis Subject: Re: Re: Body Pain QuestionDate: Tue, 24 Apr 2007 22:11:47 EDT

Hi ,

The neurologist I see is Dr. Bhupendra Khatri who is located in the St Lukes Hospital building. He is the regional director and he does do talks in other states for MS stem cell research. I found an article in the journal and I could send to your email address. He was recommended by many of my specialists, as well as nurses etc. If you make an appointment you can tell him I referred you. He is very nice and has a lot of neurologists helping him do the workups. I go for my IV treatments right in the clinic.

Khatri, Bhupendra O MD

2801 W Kinnickinnic Riv # 630, Milwaukee, WI 53215

Kat

See what's free at AOL.com.

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[Guest guest]

Rose,

I wish I would!! It would help pay for the bills!! I have a few people here too I told to go to him. They had a really nice article on him which is on line with his photos. He definitely has worked his way up from his country and helps so many.

KatSee what's free at AOL.com.