Dear Sjogren's Angels,
I have severe progressive polyneuropathy (both peripheral and autonomic neuropathy). I cannot walk, use a motorized wheel chair. The small fiber neuropathy (skin) now has made my fingertips and palms of my hands numb. I do not 'type' as fast as I did, and I drop things a lot. I take 3600 mg gabapentin to stop the incredible pain in all my skin. My lips and tongue and the end of my nose, and the area around my mouth are numb.
When I started with Sjogren's in 2002, I had no idea that autoimmune disease was the beginning of a saga that controls every aspect of my life.
In addition I have a deficient immune system and have a four hour infusion of 50 gm Gamma Globulin every four weeks. I started this in 2013, and will do this for the rest of my life. I takes 10,000 blood donations to get enough Gamma Globulin for ONE four hour infusion. I get immunity from all those people and I am no longer sick with everything going around, so I am very grateful. But the rogue side of my immune system is once again on the warpath.
Because my conditions are relatively rare and because doctors cannot predict how any one case will progress, if at all, I had no idea what could happen.
My esophagus has autonomic neuropathic damage, and my esophagus stopped moving food down into my stomach about two or three times a week. With this blockage any food that I kept eating just piled up until with the last bite I couldn't swallow it. If I drank some liquid, it also did not go down, just stayed on top of the pile. Then I had to wait and wait until finally the blockage 'released' and food began moving again.
[NOW this is happening three or four times a day! [/u] It is depressing and scary. The food itself doesn't cause the blockage. The blockage is spontaneous.
But now I must eat very slowly and 'intentionally', taking small bites, and drinking a liquid with my food. And waiting to see what happens.
This doesn't hurt, and it is actually hard to know it has happened because you can't 'feel' your esophagus to any great extent. BUT it is often progressive until you have to be tube fed!
In addition to this neuropathy in my esophagus, I have neuropathy in my bowel, with sometimes constipation and sometimes diarrhea. So I am trying the FODMAP elimination again: no lactose or glucose, and no fruits or vegetables or nuts or anything that has one of the FODMAP sugars. There is nothing 'intuitive' about it. No apples, Yes oranges. No cashews, Yes pecans. No onions, yes green beans. and on and on. NEVER any onion or garlic! Lactose free dairy products and glucose free baked goods.
I completely changed what I eat about a week ago, and I'm still waiting to see what happens, but I had a normal 'movement' today, which shocked and pleased me.
There are no drugs or treatments for the problem with my esophagus or bowel, but both are progressing. I hope at 82 I won't live to see the end stages.
YOU will NOT have this happen to you. I know of no one else with degree of damage, so don't worry.
I just have to vent sometimes.
Elaine
I remember you...oh how terribly difficult.
Does neuropathy ever affect muscles that could result in incontinence? Or anything about Sjogren Disease where that could happen?
Sunflower
Hi Caroline, I am not online much lately due to feeling lousy. Golly Gee!!!
O am so sorry to hear about the esophageal stuff as that is so lousy. There is a fellow on you tube that I just read about. I see him on my phone when I click on on the "thingy" that gets me on the you tube info channel. My memory failed me for the name of "thingy", sorry. Anyway, I saw the article and was reading and thinking that it sure sounded like autoimmune to me. He had had problems since before age 20 and only getting worse and probably around 40 years old.
He had a scope of esophagus and was to have the esophagus stretched. When dr. attempted to do this the esophagus tore and he had to have surgery. Finally after all the surgery and biopsies they diagnosed him with EGE or something like that. It is autoimmune and not surprising that esophagus tore knowing what the AID can do to our tissues. He talked about his diet and it is complicated just like you expressed. Might be interesting if you could find that online.
I am sorry that things keep getting worse but I am 81 and seems liked things are happening more often and some of the problems are not even related to the autoimmune diseases as far as I can tell. Chronic kidney disease which the doctors all insist is from high blood pressure not diabetes(type 2) or the AID. I don't agree with them but at my age doesn't make much difference. I hope you can manage to get the diet adjusted as that could help make your life a little easier. Hang in there girl, you are continuing to manage quite well in spite of it all. Hugs. meirish
Elaine,
I'm so sorry that this has gotten worse for you. Your issues sound miserable 😖. I was just wondering how you were doing. I'm not on the site as often as I used to be.
I'm hoping that you can swallow your food again - sooner rather than later! Life isn't fun when you have limited enjoyment of a good meal. So frustrating.
Hang in there and much thanks to you and Irish for all your advice and "sharing".
Don't you ever wonder why you were chosen for all of this? Why?! When I get to meet my maker, I'm going to have lots of questions!
Kathy
Dear Sunflower:
Alas, yes! Neuropathy (autonomic). affects my gastrointestinal and urogenital systems...the nerves that control my urination and bowel elimination are severely damaged. I am incontinent and wear 'pullups'. My rectal nerves, that give us control of bowel movements, are also damaged, although I am not 'fecally incontinent' yet.
However, my neuropathy affects my intestinal system and causes diarrhea alternating with constipation. It is part of my gastrointestinal neuropathy (I also have esophagus and small bowel problems).
For the diarrhea I take 6 teaspons of Metamucil every day. This makes my diarrhea less liquid and easier to control. This is recommended by my gastroenterologist.
I know that these are highly unpleasant topics. However, if we don't discuss them it only makes the problems more scary and lonely.
I know that I have just about the worst case scenario for Profound Progressive Polyneuropathy. This will NOT happen to 99.9% of those diagnosed with Sjogren's.
HOWEVER, in all references to my polyneuropathic condition, Sjogren's is OFTEN cited as one of the underlying causes, along with diabetes. I am not diabetic. My FIRST autoimmune diagnosis, in 2002 was Sjogren's. 22 years later I am completely disabled and spend most of my day dealing with medications, coping mechanisms, doctors appointments. I am confined to a power wheelchair.
I have a rheumatologist, gastroenterologist, neurologist, immunologist, dermatologist, cardiologist, and about 8 more kinds of doctors, including a Pain Specialist.
All are part of the Duke University Medical Center and are the very best there is.
This condition (polyneuropathy) is expected to shorten my life by about 3.1 years. This does not make me sad, by the way. My husband is my caretaker, but he has progressive dementia which also affects his life expectancy. I am 82 and he is 85. My death will NOT be tragic. I have a therapist that I meet with weekly for over 10 year, and I'm not depressed, just very realistic about my life.
Elaine
Sorry to hear about your mounting health issues. I dont believe I could be as strong as you or as good of an outlook.I When I first joined here in 2010, there was a woman on this site (forget her name) who had a similar problem and had a feeding tube put in. I forget what country she was in or what her other problems were besides Sjogrens. So that just makes two people on this whole site that this has happened to....so yes, it is a rare occurence. :)