1. < Autoimmune Diseases

Late Stage Primary Sjogren's Syndrome

Posted by Gem @gemmax, Jun 22, 2019

I have advanced autoimmune disease , particularly Sjogren’s syndrome (about 30 years) Most doctors have never seen anyone like me, so most of the ones I am sent to, study me mostly. My Sjogrens’ has advanced to affect every muscle, connective tissue, lungs, heart and more. I am in the middle a new look at things.About 2 months ago I began to have unbearable pain. I cannot use my arms without extreme pain;deep in muscle tissue. my right is worse than my left. The pain is like nothing that I have had before. The doc says my muscles have hardened and become stiff. I already knew that, but this new pain is incredibly hard to take. .It affects the arms and shoulders, the back, thighs and calves.I can walk but it is difficult. I have developed ventricular hypertrophy; (the left ventricular wall thickens and then is unable to function normally) I have also developed a new case of interstitial lung disease, skin problems, rashes that don't go away. I also have Type 2 Diabetes. These are very serious problems. I have in the past couple of months read the doctor's update on Sjogren’s. I did not expect this sudden change. I am disabled and the pain is almost unbearable. The docs are looking really closely at the addition to my problems of MS.

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Mentor
John, Volunteer Mentor | @johnbishop | Jun 22, 2019

Hi Gem @gemmax -- After reading your post I ran across an article from January 2018 and thought that it might offer some helpful information.

Management of primary Sjögren’s syndrome: recent developments and new classification criteria
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5784475/

With all of your other symptoms you mentioned that the doctors are looking at the addition to your problems of MS. Have you ever heard of Dr. Terry Wahls? She has an amazing story of how she is able to control her MS symptoms through diet. It was her book The Wahls Protocol that got me started at eating better to help with my neuropathy and other autoimmune symptoms. You can read her story here: https://terrywahls.com/about/about-terry-wahls/

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2 replies
Gem | @gemmax | Jun 22, 2019
In reply to @johnbishop "Hi Gem @gemmax -- After reading your post I ran across an article from January 2018..." + (show)
@johnbishop

Hi Gem @gemmax -- After reading your post I ran across an article from January 2018 and thought that it might offer some helpful information.

Management of primary Sjögren’s syndrome: recent developments and new classification criteria
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5784475/

With all of your other symptoms you mentioned that the doctors are looking at the addition to your problems of MS. Have you ever heard of Dr. Terry Wahls? She has an amazing story of how she is able to control her MS symptoms through diet. It was her book The Wahls Protocol that got me started at eating better to help with my neuropathy and other autoimmune symptoms. You can read her story here: https://terrywahls.com/about/about-terry-wahls/

Jump to this post

@johnbishop Thank you for the links. I am printing one so the I can study it at my leisure. I am diabetic so I work with a dietician. For years I have eaten mostly fresh vegetables and a few whole grains. I had to add back in some tiny servings lean beef just recently because I have severe anemia that is responding to treatment very slowly. I believe that Dr Wahls' book is in my library.

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1 reply
redhead63 | @redhead63 | Jun 27, 2019
In reply to @gemmax "@johnbishop Thank you for the links. I am printing one so the I can study it..." + (show)
@gemmax

@johnbishop Thank you for the links. I am printing one so the I can study it at my leisure. I am diabetic so I work with a dietician. For years I have eaten mostly fresh vegetables and a few whole grains. I had to add back in some tiny servings lean beef just recently because I have severe anemia that is responding to treatment very slowly. I believe that Dr Wahls' book is in my library.

Jump to this post

I think lean organic grass fed meats are delicious and women at our age needs the meat protein. I eat no more than 3-4 ozs per day. I too was developing anemia

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Tigerlilly | @tigerlilly | Jul 12, 2019
In reply to @johnbishop "Hi Gem @gemmax -- After reading your post I ran across an article from January 2018..." + (show)
@johnbishop

Hi Gem @gemmax -- After reading your post I ran across an article from January 2018 and thought that it might offer some helpful information.

Management of primary Sjögren’s syndrome: recent developments and new classification criteria
-- https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5784475/

With all of your other symptoms you mentioned that the doctors are looking at the addition to your problems of MS. Have you ever heard of Dr. Terry Wahls? She has an amazing story of how she is able to control her MS symptoms through diet. It was her book The Wahls Protocol that got me started at eating better to help with my neuropathy and other autoimmune symptoms. You can read her story here: https://terrywahls.com/about/about-terry-wahls/

Jump to this post

Please forgive me if I posted in the wrong place. Here it goes.... I have Sjogren's, Fibromyalgia, Raynaud's, Osteopenia, High Blood Pressure, Kidney Disease, Skin sores and Scaly Patches, Dry Skin, Reflux, Infections from Allergies, Over Weight, Arthritis, Tinnitus, Hair Loss in my ear to, Thyroid, Constipation, Hot Flashes and Sweats, NOW a small spot on my scull/brain (?) on the front right side near my eye and temporal area, maybe early Brain Fog "Senior Moments" / light Dementia - I am 65 now. I have started having a little tingling there but it is spreading toward the left back side and down my neck and shoulders. Ohhh yea Depression and Anxiety. I saw a Neurologist and he showed me my brain scan. Then he show me another persons brain scan with very advanced problems of dementia. The Dr. said pointing to my dime size white spot "tumor" and said you do not have any problems with dementia. Since then I have developed the tingling / fire cracker effects in my head. When I laugh to hard I feel like I am going faint and fall. I love to laugh but that is scary. I take 8 or 9 bottles of medications a day. The tingling has me concerned. I read a post on Primary Sjogren's then the up to date diagnosis and results it is mind boggling. I was diagnosed at 28 or 29 years old but it started at with dry hands at 19. I joined the Air Force at 23 years old then the symptoms increased including fatigue and migraines.

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2 replies
Mentor
John, Volunteer Mentor | @johnbishop | Jul 12, 2019
In reply to @tigerlilly "Please forgive me if I posted in the wrong place. Here it goes.... I have Sjogren's,..." + (show)
@tigerlilly

Please forgive me if I posted in the wrong place. Here it goes.... I have Sjogren's, Fibromyalgia, Raynaud's, Osteopenia, High Blood Pressure, Kidney Disease, Skin sores and Scaly Patches, Dry Skin, Reflux, Infections from Allergies, Over Weight, Arthritis, Tinnitus, Hair Loss in my ear to, Thyroid, Constipation, Hot Flashes and Sweats, NOW a small spot on my scull/brain (?) on the front right side near my eye and temporal area, maybe early Brain Fog "Senior Moments" / light Dementia - I am 65 now. I have started having a little tingling there but it is spreading toward the left back side and down my neck and shoulders. Ohhh yea Depression and Anxiety. I saw a Neurologist and he showed me my brain scan. Then he show me another persons brain scan with very advanced problems of dementia. The Dr. said pointing to my dime size white spot "tumor" and said you do not have any problems with dementia. Since then I have developed the tingling / fire cracker effects in my head. When I laugh to hard I feel like I am going faint and fall. I love to laugh but that is scary. I take 8 or 9 bottles of medications a day. The tingling has me concerned. I read a post on Primary Sjogren's then the up to date diagnosis and results it is mind boggling. I was diagnosed at 28 or 29 years old but it started at with dry hands at 19. I joined the Air Force at 23 years old then the symptoms increased including fatigue and migraines.

Jump to this post

Hello @tigerlilly -- You mentioned that you take 8 or 9 bottles of medications a day. Have you thought about talking with your doctor or maybe a pharmacist to review the list of your medications to see if there are any interactions between any of your medications? What is the symptom that is hardest for you to manage?

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Mentor
Becky, Volunteer Mentor | @becsbuddy | Jul 13, 2019
In reply to @tigerlilly "Please forgive me if I posted in the wrong place. Here it goes.... I have Sjogren's,..." + (show)
@tigerlilly

Please forgive me if I posted in the wrong place. Here it goes.... I have Sjogren's, Fibromyalgia, Raynaud's, Osteopenia, High Blood Pressure, Kidney Disease, Skin sores and Scaly Patches, Dry Skin, Reflux, Infections from Allergies, Over Weight, Arthritis, Tinnitus, Hair Loss in my ear to, Thyroid, Constipation, Hot Flashes and Sweats, NOW a small spot on my scull/brain (?) on the front right side near my eye and temporal area, maybe early Brain Fog "Senior Moments" / light Dementia - I am 65 now. I have started having a little tingling there but it is spreading toward the left back side and down my neck and shoulders. Ohhh yea Depression and Anxiety. I saw a Neurologist and he showed me my brain scan. Then he show me another persons brain scan with very advanced problems of dementia. The Dr. said pointing to my dime size white spot "tumor" and said you do not have any problems with dementia. Since then I have developed the tingling / fire cracker effects in my head. When I laugh to hard I feel like I am going faint and fall. I love to laugh but that is scary. I take 8 or 9 bottles of medications a day. The tingling has me concerned. I read a post on Primary Sjogren's then the up to date diagnosis and results it is mind boggling. I was diagnosed at 28 or 29 years old but it started at with dry hands at 19. I joined the Air Force at 23 years old then the symptoms increased including fatigue and migraines.

Jump to this post

@tigerlilly I totally agree with @johnbishop about medication interactions! All medicines have side effects that we don’t notice until 2 or more get together and cause havoc. I have an app on my phone that really helps me. It’s a free download from the App Store. I had really bad brain fog and using the app Drugs.com, I finally traced it to 2 of my new medications. No more brain fog! Talk to a pharmacist or use the drug app and then have a talk with your doctor. And let us know how it all turns out!

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