Sjogren's Syndrome - SjS

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Mrs Bucket

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I'm wondering if there's anyone here or has a family member/friend that is afflicted with Sjogren's (pronounced show-grins) Syndrome.

Two years ago I was very sick for quite a period of time, I would be bed-bound with a multitude of illnesses. A chronic problem I had was I would be very thirsty and feeling very dry internally and externally. I was sent off to see a pain maintenance specialist which then had my RF (Rheumatoid Factor) blood work done. The red & white blood counts were off the chart and I was sent to a RA (rheumatoid arthritis) specialist which did my blood work again and determined I had Secondary Sjogren's Syndrome.

In Sjögren's, the body's immune system attacks the moisture-producing glands. Lymphocytes (a type of white blood cell) then attack and destroy these glands causing painfully dry eyes and mouth. Sjögren's can also cause dryness of the skin, nose and vagina. It can affect organs such as the kidney, gastrointestinal tract, blood vessels, lung, liver, pancreas and central nervous system. It is an all invasive disease.
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source

When I was advised by the specialist that SjS was incurable and invasive, I was cautioned to avoid stress.

Healthy discussion is welcome as SjS isn't meant to be kept hidden away.

Health is wealth, dear friends. :hug:
 
Mrs Bucket said:
I'm wondering if there's anyone here or has a family member/friend that is afflicted with Sjogren's (pronounced show-grins) Syndrome.

Two years ago I was very sick for quite a period of time, I would be bed-bound with a multitude of illnesses. A chronic problem I had was I would be very thirsty and feeling very dry internally and externally. I was sent off to see a pain maintenance specialist which then had my RF (Rheumatoid Factor) blood work done. The red & white blood counts were off the chart and I was sent to a RA (rheumatoid arthritis) specialist which did my blood work again and determined I had Secondary Sjogren's Syndrome.

source

When I was advised by the specialist that SjS was incurable and invasive, I was cautioned to avoid stress.

Healthy discussion is welcome as SjS isn't meant to be kept hidden away.

Health is wealth, dear friends. :hug:
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http://www.alldeaf.com/lifestyle-health-fitness-food/60892-any1-here-lupus-sjogrens-raynauds.html

Steph9700 has it and this is her thread on it.
 
Thanks Botts, I didn't realise I posted to Steph's thread.

There goes the memory!! Extreme fatigue gets to me and the best of my memory.
 
Mrs Bucket said:
I'm wondering if there's anyone here or has a family member/friend that is afflicted with Sjogren's (pronounced show-grins) Syndrome.

Two years ago I was very sick for quite a period of time, I would be bed-bound with a multitude of illnesses. A chronic problem I had was I would be very thirsty and feeling very dry internally and externally. I was sent off to see a pain maintenance specialist which then had my RF (Rheumatoid Factor) blood work done. The red & white blood counts were off the chart and I was sent to a RA (rheumatoid arthritis) specialist which did my blood work again and determined I had Secondary Sjogren's Syndrome.

source

When I was advised by the specialist that SjS was incurable and invasive, I was cautioned to avoid stress.

Healthy discussion is welcome as SjS isn't meant to be kept hidden away.

Health is wealth, dear friends. :hug:
Click to expand...

I did a quick read up on this after you mentioned it to me in PM, and I must say that even though I admired you before, I admire you even more now! I suffer similarly from fibromyalgia. Different illness altogether, but chronic pain goes along with it. I feel for you, my dear.

I read that dry eyes and a dry mouth is part of this disease. And, it become lethal in a certain percetage of people. Forgive me for dwelling on the negative; but I'm still learning about this disease. I understand it's an auto-immune disease. To the degree that you're comfortable with, can you discuss you med regimen? I understand if you don't want to... That might be too private, but know this... You can always, always hit my inbox if you need to gripe! I get it. Chronic illness is stressful.

You have my love and respect! :hug:
 
deafgal001 said:
Thanks for sharing. Do they give you any treatments to help it be more managable?
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Mrs Bucket can interject, but the reading I did suggested that there's no cure or real protocol for treatment. They treat symotomatically. This may mean artificial tears for the severe dry eyes. The person also must adhere to a very good oral hygiene regime to prevent dental issues. The mouth can get very dry, which can lead to bacteria in the mouth and dental cavities.
 
Oceanbreeze said:
I did a quick read up on this after you mentioned it to me in PM, and I must say that even though I admired you before, I admire you even more now! I suffer similarly from fibromyalgia. Different illness altogether, but chronic pain goes along with it. I feel for you, my dear.

I read that dry eyes and a dry mouth is part of this disease. And, it become lethal in a certain percetage of people. Forgive me for dwelling on the negative; but I'm still learning about this disease. I understand it's an auto-immune disease. To the degree that you're comfortable with, can you discuss you med regimen? I understand if you don't want to... That might be too private, but know this... You can always, always hit my inbox if you need to gripe! I get it. Chronic illness is stressful.

You have my love and respect! :hug:
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:hug: It is great being able to relate with you when we both share similar paths regarding pain and illnesses.

SjS is an autoimmune disease and with this I have to be careful with what I eat and drink as some foods/drinks will trigger the "already very dry" parts of my body. The dryness will become so parched that when I drink water, it will not help I would have to drink gallons of water before I feel relieved. This isn't good because it causes me to go to the washroom and it will cause bladder inflammation when the bladder itself is already very dry.

My eyes are very dry & SjS can lead to vision loss but I'm already there. When I get upset and the tears comes out, it's quite painful to cry. Natural tears are supposed to be watery but mine is very salty and painful to excrete. I take supplemental eye drops for the eyes and another supplemental tongue lubricant that comes in droplets form.

Oral hygiene is very important because already I suffer from halitosis brought on by SjS. It is very painful to brush the teeth/gums because the oral orifice is so dry to the point it can bleed if I brush too hard.

I take quite a bit of pain medication to help with the quality of life. Codeine Contin on a daily basis twice a day and Percocet daily to relieve pain. I always believe laughter is the best medicine. I am thankful for my husband and I think the world of him.

Much love to you OB and it is always good to know I can hit you up in PM! :ily:

Oceanbreeze said:
Mrs Bucket can interject, but the reading I did suggested that there's no cure or real protocol for treatment. They treat symotomatically. This may mean artificial tears for the severe dry eyes. The person also must adhere to a very good oral hygiene regime to prevent dental issues. The mouth can get very dry, which can lead to bacteria in the mouth and dental cavities.
Click to expand...
 
Mrs Bucket said:
:hug: It is great being able to relate with you when we both share similar paths regarding pain and illnesses.

SjS is an autoimmune disease and with this I have to be careful with what I eat and drink as some foods/drinks will trigger the "already very dry" parts of my body. The dryness will become so parched that when I drink water, it will not help I would have to drink gallons of water before I feel relieved. This isn't good because it causes me to go to the washroom and it will cause bladder inflammation when the bladder itself is already very dry.

My eyes are very dry & SjS can lead to vision loss but I'm already there. When I get upset and the tears comes out, it's quite painful to cry. Natural tears are supposed to be watery but mine is very salty and painful to excrete. I take supplemental eye drops for the eyes and another supplemental tongue lubricant that comes in droplets form.

Oral hygiene is very important because already I suffer from halitosis brought on by SjS. It is very painful to brush the teeth/gums because the oral orifice is so dry to the point it can bleed if I brush too hard.

I take quite a bit of pain medication to help with the quality of life. Codeine Contin on a daily basis twice a day and Percocet daily to relieve pain. I always believe laughter is the best medicine. I am thankful for my husband and I think the world of him.

Much love to you OB and it is always good to know I can hit you up in PM! :ily:
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Like psorasis??
 
I have eczema and have to use a good ointment to slather on after I shower, only warm water.

The already very dry parts I meant was the openings of my body ie the vagina and anus. It makes going number 1 and 2 extremely painful at times.

Any openings your body has ie eyes, nose, ears, etc is painful because it is just very dry.
 
I'm sending you a PM.
 
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Mrs Bucket said:
I have eczema and have to use a good ointment to slather on after I shower, only warm water.

The already very dry parts I meant was the openings of my body ie the vagina and anus. It makes going number 1 and 2 extremely painful at times.

Any openings your body has ie eyes, nose, ears, etc is painful because it is just very dry.
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And here I thought your only problem was to keep from sliding out of bed. Damn. Sorry to hear of this, Mrs Bucket. :hug:
 
I must say Sjogren's s sounds like something that's very painful to live with. I was feeling sorry for myself because I am in some pain from an ulcer on my leg. I'm thinking I will need to get my codeine refilled even though I don't want to risk getting hooked on the stuff.

I hope the meds will help you cope with the pain that you're in. You defineatly have my love and respect. :hug:
 
deafskeptic said:
I must say Sjogren's s sounds like something that's very painful to live with. I was feeling sorry for myself because I am in some pain from an ulcer on my leg. I'm thinking I will need to get my codeine refilled even though I don't want to risk getting hooked on the stuff.

I hope the meds will help you cope with the pain that you're in. You defineatly have my love and respect. :hug:
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Even an ulcer on the leg sounds painful to me. You have to change the bandage often and make sure it isn't a repeat growth, etc.

I am thankful for meds as they do help me with pain maintenance. Coping with SjS can be overwhelming & I am very blessed to have hubby helping me as well. His support is amazing.

Big hugs and love to you too. :hug:
 
Mrs Bucket said:
Even an ulcer on the leg sounds painful to me. You have to change the bandage often and make sure it isn't a repeat growth, etc.

I am thankful for meds as they do help me with pain maintenance. Coping with SjS can be overwhelming & I am very blessed to have hubby helping me as well. His support is amazing.

Big hugs and love to you too. :hug:
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:ty: I'm glad you have a supportive hubby. People like that are worth more than all the gold in the world.
 
deafskeptic said:
:ty: I'm glad you have a supportive hubby. People like that are worth more than all the gold in the world.
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Amen! Well said, DS!

Having someone around you that understands what you're going through, and, where you're at is always a positive thing.
 
deafskeptic said:
:ty: I'm glad you have a supportive hubby. People like that are worth more than all the gold in the world.
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Yes I am very happy to have my husband in my life.

Oceanbreeze said:
Amen! Well said, DS!

Having someone around you that understands what you're going through, and, where you're at is always a positive thing.
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Well said both of you ladies. :ily:
 
Wow..I learned something new today. I am at loss for words but here is a :hug:

There is so many people I know who are going through so much with their health so I just pray for a happy and healthy 2011 for all of you.
 
OHH Mrs B, that what ya have to deal with?? wow I really think ya will do it well enough and also your hubby must be really a wonderful person to assist with your daily pill work and others.. bless him...
 
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