Recent Posts

1

Chat Live in Real Time / It's that time again!

« Last post by Linda196 on January 20, 2022, 04:48:12 PM »

If you have never visited us in chat before, why not give it a try? W talk about anything, soo if you have questions, concerns, or are just feeling social, this is the place https://kiwiirc.com/nextclient/irc.dal.net/#SjogrensWorld
We start at 8PM EST tonight!

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Living With Sjogren's / Are you affected by barometric pressure?

« Last post by araminta on January 20, 2022, 10:16:42 AM »

I suspect this had a lot to do with three miserable days I had shortly after Christmas - exhausted, aching, no appetite.   I used to get migraines when I was younger and thought that they were, at least some of the time,  linked to low pressure.

We've got high pressure at present and I feel quite a lot better.   Maybe it's my imagination?

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Living With Sjogren's / Re: Gastrointestinal Neuropathy, GERD, and the whole gang

« Last post by Kathy57 on January 20, 2022, 09:58:13 AM »

Elaine,
I was wondering how you were doing.  I really haven?t been reading a lot of posts because I?ve been busy taking care of other people, but that?s not a bad thing.

I?ve been feeling okay (but not great) but able to do what I need to, so that is a blessing. 

I do not have the severe problems that you have with your motility, but I?ve been kind of miserable lately with my Digestion.  My esophagus is very dry and I know things move very slowly through my system.  Yesterday I was craving hard crusty bread with butter and so I indulged with a very large chunk.

Later, I started experiencing stomach pain and cramping - and this has happened before on several occasions.  I wasn?t able to eat supper and I had made an amazing dinner that everyone else thoroughly enjoyed!  I just felt miserable like nothing could move forward at a certain point.

Finally, I started throwing up but it was so scary cause I had trouble getting it up.  I felt like things were stuck in my esophagus and at one point I felt like I was choking and couldn?t breathe.  I went to bed early, and this morning I can take water and some of my meds.

I do not believe that I have a virus because when this happens to me no one else gets sick.  I feel it?s my Sjogrens!  I just had an Endoscopy and I do have Bad GERD, Barrett?s esophagus, inflammation and all the rest, but I take meds and usually I?m okay.

I wonder if it was the chunkiness of the bread?  Did I not chew it well?  This has happened before and I?m totally knocked out for a day.

I?ve been busy taking care of my grandkids and my husband and I think maybe I don?t drink enough water or chew my food well enough? 

I love to eat!  But I guess I have to be careful. 

Your fancy party sounds amazing!  I hope you are able to enjoy many more without having to deal with these issues. 

I?m sorry you are having these terrible issues, but it reminds me that we are not alone. 

I hope your day is a good one,

Kathy

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Living With Sjogren's / Gastrointestinal Neuropathy, GERD, and the whole gang

« Last post by Carolina on January 19, 2022, 05:00:13 AM »

Hi,

My gastrointestinal problems are legion now.  I had and endoscopy colonoscopy two weeks ago, and the doctor was frankly appalled at the conditions he encountered.

Both my esophagus and my bowel are serious dysmotility.  That means that the contractions that move stuff along are weak, and sometimes stop working entirely.  In addition there was significant inflammation and the lining of my esophagus was sloughing off.  I had a polyp removed from my colon was well.

Last night we had a fancy party where I live....amazing decoration, a live band, and food to die for.   Well, I had three or four bites of the food...and nothing went down.  The food stopped about midway down and the pain stopped me. 

The type of dysmotility I have is sometimes called the 'nutcracker' variety.  My esophagus clamps down on the food and it is painful.

I have to 'force' myself to expel the food (don't ask) but the condition continued all evening and my plate of food was basically untouched.  if you knew me you would know that I always eat everything!

I know that certain 'textures' of food are most likely to trigger this problem (if anything I eat actually triggers it).  Dense foods like chicken breast or bagels seem the worst.

When the problem sets in, even liquids just stop at the 'nutcracker' point and don't go down. 

Does anyone else have this?

I'm sure it's part of the neuropathy caused by my Immune System attacking me. 

I just have to be very conscious of what I'm putting in my mouth...evaluate the food carefully, take very small bites and wait and see.  This is so NOT ME.

Well, I guess it has to be the new me.  There aren't any treatments that I can find on-line.  But I'm talking again with my GI team in about three weeks, to discuss test results, symptoms and options.

On the positive side, I'm at the lowest weight in 20 years.  I've lost 50 pounds in the past 5 years...so that's a positive.

Elaine



 

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Living With Sjogren's / Re: Diplopia

« Last post by Carolina on January 19, 2022, 04:21:30 AM »

Wow, Scottie, I'll bet that's what I have.

It only affects my vision when I'm reading......I don't see things in the room as double...only the words on the page.

Some times there appears to be a partial page to the side of the read page, for example.

I also have been diagnosed with Macular Degeneration, so I don't know if that has something to do with the problem.

My retinal special (for MD) doesn't deal with this, so I've made an appointment with a regular ophthalmologist to address this problem.

This double vision thing doesn't occur all of the time...in fact right now it's calm.  But for two or three months in the Fall is was very strong.

It's always something.

Elaine

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Living With Sjogren's / Re: Methotrexate dosage

« Last post by Carolina on January 19, 2022, 04:15:22 AM »

Thanks eye2dry and Irish.

I think things are improving.  I began the taper again, very slowly, and symptoms seem gone, for now.

I need some good things going for me.  In another post I'll talk about the sharp increase in the neuropathy of my gastrointestinal system...just another gift of my disordered Immune system.

I know some of you may be experiencing this, too.

I just cannot believe how my Immune System disorders this keep increasing....

Love, Elaine

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Living With Sjogren's / Re: Diplopia

« Last post by meirish on January 18, 2022, 08:38:19 PM »

Scottie, Myasthenia is sort of hard to predict. My eye issues vary from day to day. Sometimes I look in the mirror and I will have a droopy left lid but not enough to bother my vision. By night my vision can be troublesome, especially on the computer.

Weakness in arms and legs is the same. Sometimes not bothersome and other times I have difficulty picking up my feet when I walk. Sort of a little shuffle. I don't look bad with my myasthenia but when it hits there are times when I must take a pill and sit down and not move at all and just rest. Usually fall asleep and will awaken hour or two later and feel much better. As usually I can feel weak and lousy and people say "but you don't look sick". Gosh wonder where we have heard that before.

Am hoping you can find a neuro who will not be so set in their ways. Maybe a Myasthenia foundation or discussion forum in your neck of the woods will have the name of a good neuro. Good luck. meirish

Sorry I haven't done some research for you but I am the midst of having issues and testing. Will do some searching when I perk up a little.

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Living With Sjogren's / Re: Diplopia

« Last post by Scottietottie on January 18, 2022, 04:29:02 PM »

Thanks Irish 
I will keep trying to find out. eyes do tend to be worse later in the day but it's weird - some days they are pretty good all day and then I'll have a bad day. No predicting how it will be till it happens.

Take care - Scottie 

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Living With Sjogren's / Re: sugar levels

« Last post by meirish on January 15, 2022, 07:00:21 PM »

Judi, I am not going to tell you that your bloods sugars are not that high, but I would guess that you would do well to have a class on diabetes that many clinics offer for their diabetes both type 1 and type 2.

Every doctor has a different idea of what peoples AIC should run and generally speaking the older we are the doctors don't want us to be too low especially if we are on oral medication or insulin. Older people can have a tendency to have their blood sugars go up or down more rapidly and have problems with too low or too high blood sugars.

The normal time to do a blood sugar is 2 hours or so after we have eaten. This is called a 2 hour post prandial blood sugar. The class I took several times said that older people should expect blood sugars to be no more than 160 to 180 at this time. It is normal to have a higher blood sugar after one eats and it takes a while for it to go back down.

Every one of us needs to learn just what our body does with these blood sugars. I am usually 90 to 130 in the morning and it varies a lot. I need it to be a little higher as I have the propensity to have lower blood sugars and not always know it. My blood sugars are always higher through out the morning and early afternoon and then sometimes at bed time they will be in the 70's or 80's. Not always dependent on what I eat. So I have to make sure I eat a big peanut butter sandwich at bedtime.

This is something we learn over the years when we are on medication and as we get older. I have only had 2 AICs over 7.0 and this is very common for older people. Normally I run around 6.2 to 6.4 and my doc says that is perfect for a woman of 78 years old as less apt to have a really low blood sugar. This last time I had a 5.3 AIC and it scared me to death. I have been considered an "in control" diabetic and there are times I eat too much ice cream and everything else. Like I said, we all have to learn about this and after going on medication things change a lot. Also, the amount of fluid we drink can change our blood sugars and our activity level really changes it.

It would be good for you to be checked out as you could very well be having blood sugar issues or autoimmune issues with the mouth sores, etc. The big blister on your foot can be from the venous insufficiency but would be very nice to get it healed up so you don't get infection. Hope these things can be resolved for you. The one thing we learn with autoimmune is that is pretty common to have a lot of different ailments going on at the same time to keep us busy and then all of a sudden things will be a little better for awhile. Take care and good luck. meirish

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Living With Sjogren's / Re: sugar levels

« Last post by Judie P on January 15, 2022, 11:38:56 AM »

Thanks, meirish.  I am going for an A1c test on Monday.  I have been diagnosed with pre-diabetes before, but the last two years (in December) I was 5.5 and then in 2020 I was 5.7.  That is fine, but I have gone as high as 5.9.  Still pre diabetic.  It is just lately I have been urinating more, drier in the mouth, and hungry after 1.5 - 2 hours.  It could be Sjogren's finally kicking in, but I am also having small infections, like something going on in my vagina, a huge blister on my leg from supposedly venous insufficiency, and mouth sores.  My blood kit is ranging from 112 to 125 in the morning before I eat or drink.  One morning it was 139 after a huge meal of carbs and sugar the night before.  I will be 71 in April.

Thanks for your help.  Judie P.