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Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by sixty on Today at 04:09:44 PM »
Thanks Judy.  Sjogrens is an asshole!  Forgive the language.
Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by Judie P on Today at 04:03:02 PM »
Good question, Sixty.  I have been diagnosed with COPD and no doctor nor my family or I can figure out how I got that.  My doctor looked it up and found that Sjogren's can cause it.
Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by sixty on Today at 12:49:22 AM »
Is there anything that can be done for this issue of losing elasticity in one's organs, such as your lungs?  I'm currently trying to figure out what's causing my breathlessness with a pulmonary guy and a cardio guy.  My thoughts are it's the Sjogrens, or maybe I also have scleroderma.  Does anyone know if such a condition can be seen with a MRI or other test?  Then of course what can be done about it.  Probably nothing.  So frustrating and scary.  Thanks for any response!
Living Life In Spite of Sjogren's / Re: Let's talk weather 2021
« Last post by meirish on Today at 12:08:33 AM »
OK folks, I am still updating on our weather around the upper midwest. Spring must be here because the trees are either in bloom or slowly blooming. The lilacs are just starting to bloom also. If I wasn't so stuffed up I would enjoy being able to smell the fragrance.

I was very chilly, drizzling and cloudy today again. WE will get some sun and have a few days in the 60's and one in the 70's but the wind keeps blowing more than usual and the air still has the chill many days of the cold temps way up north. Also, a good share of the corn is planted and we have not had a good enough rain yet. The drouth word is being mentioned. One hates to talk to much about rain because when it is dry it is dry and often when it starts raining it won't stop raining. We can't be pleased I guess.

All in all it is a very unusual May for us. But I do remember when the boys were young my hubby took them fishing on Memorial Day but they had to come home as it was snowing so much and windy on the lake and it was miserable. This is the upper midwest, lest I forget. Hope y ou are all comfortable and content with your weather  patterns this spring season. meirish
Living With Sjogren's / Re: Need help mouth too dry to swallow food
« Last post by meirish on May 14, 2021, 11:59:56 PM »
I am sorry that you have gotten so bad. Just to let you know that you do need to get some protein. I would be nice if you could see a dietician who could help you with finding foods and protein drinks with the right vitamins and minerals to help you maybe gain a little weight but more importantly keep you from losing anymore.

When you don't eat enough of the right combination of protein, carbs, fat, vitamins and minerals your body will start to burn your body fat in order to maintain bodily function. It is seldom mentioned in any articles but we must maintain a certain amount of carb intake to help maintain the energy that the brain needs to keep healthy and functioning.

If it isn't possible to see a dietician maybe there is health store close to you that could help you find the right products such as drinks and puddings that would maintain a healthy balance. The health store  people work with those who do a lot of heavy duty sports and exercises plus special diets and must be able to help your find ways to meet  your body's needs. I know these products can be expense but you might be able to find clerks who will work with the budget you have in mind.

Also the drugs mentioned above are excellent for helping increase mucus production in the mouth. It could be very helpful to you. Be aware that these drugs will make you sweat but talk it over with your doctor and make plans for the ability to start at a half dose and work your way up to the full dose. I was never able to use the full dose and got along good on the hang dose. I hope you are able able to get some help.

Try eating mashed potatoes with a gravy, pureed meats through the blender with gravy and blender vegetables. Even putting all these foods in a blender and then adding a milk or broth base with some finely chopped onions and simmering on the stove until you have a soup works great. Some people even use canned squash or pumpkin with the mashed potatoes and blender meats and spices to make soups. When your body is craving these foods you will find that these soups will taste very good to you.Good luck and keep us updated if you would on how you are getting along. There may be other ideas from people also. meirish
Living With Sjogren's / Re: Need help mouth too dry to swallow food
« Last post by Kathy57 on May 14, 2021, 09:47:09 PM »
I?m sorry you are experiencing this.  Have you been diagnosed with Sjogrens?  What you need is a prescription for Pilocarpine or Evoxac.  Both should substantially increase your saliva production.

In the meantime have you been able to eat creamed soups or malts or shakes?  Before I was diagnosed I lost a lot of weight also.  You can buy high vitamin and protein drinks at the grocery or health food store.  Make yourself drink them.

I remember thinking that if I would ever be able to chew and swallow my food properly again,  that I would let myself get fat!  Well I am not fat but certainly not skinny!😂.  It takes time but it will get better.  Now I enjoy my food way too much!  You need medical expertise.  Try to get in as soon as possible.  Ask if you can be called for a cancellation to get in earlier,  if at all possible.  I?m on several meds that have helped me but it took awhile to get used to taking all of them.

Change doesn?t happen overnight.

Hang in there and let us know how you are doing.

Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by meirish on May 14, 2021, 06:23:26 PM »
As a person who has had CT scans and x-rays that show some of the same wordage I think that I would advise you to see someone who will scan your cervical area and maybe even thoracic to check for pressure on the spinal cord. This may not be related to a tear. I am not a doctor but I had some scattered type pain in both hands and up arms that were attributed to my carpal tunnel for several years. I eventually had burning in my hands and when I saw my neurologist I told her about the burning in my hands. I had no neck pain or symptoms that I would connect with disc problems in my neck.

Lo and behold the CT came back with very significant findings and I was told that I needed a spinal fusion or I would be paralyzed to could die. So she gave me a referral to someone she had told me about. A very good neurosurgeon in the cities. Within 2 weeks I had the surgery. I saw the CT when in the neurosurgeons office and it scarred me to death. Could almost have obstructed the spinal cord with my disc and I had no neck pain at all. He told me later I was in serious condition when I went to surgery and I am lucky to have done as well I am have.

Pain is such a weird thing and we often we can think we are having pain related to one thing and it turns out we are off the mark. I am having issues again with discs in the vertebra above and below the fusion. Time will tell. I had to have a carpal tunnel repair 3 months after my fusion and am having another one on the other hand. This will make 3 carpal tunnel surgeries on the right wrist and 1 on the left. However, I need to have the left done again. The one the orthopedic surgeon did after the fusion.

He said that most people only have one on each wrist but my inflammatory AID has just messed with my tendons in my wrists and elbows and keep making problems. Pain is hard to decipher but I continue to have positive CTs and EMGs in both these areas. It is getting old. Thank goodness I have avoided pain meds and do the compression gloves on hands which help and also will wear vinyl gloves on hands with put some pressure on my hands with some relief. No cure as still pain but at least more tolerable. Heard and ice packs help also. Hope you get this sorted out. These darn discs can really cause us more problems then I ever imagined. Good luck to you. meirish

Be aware that most tissue contains collagen. Sjogrens and other autoimmune diseases are called collagen diseases. This means that the collagen in our tissues is affected. The collagen gives the tissue its elasticity or makes the tissue "supple". With the Sjogrens and lupus, as  understand it, the tissues with collagen are affected. They can become inflamed and swollen and can lose their normal elasticity. The tendons and other tissues can become more elastic and stretchy. This makes sense as it can contribute to the discs having more room to move to areas they should not be, ire, laying at an angle and pressing on the spinal cord.

The tissue can also become less stretchy which will show up in scleroderma which cause the tissues of all tissues including heart, kidneys, liver, etc, to become more hardened. I don't have the right vocabulary to explain this so I hope Linda comes along and adds more info. Thanks.
Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by Judie P on May 14, 2021, 01:44:37 PM »
By the way... my husband and I think it might be a ton of stress leading up to opening the business again after 13 months and a big zoom presentation I am giving tomorrow (while in a lot of pain).  I forgot what it was like to deal with doctor's who don't get us.
Living With Sjogren's / Re: debilitating muscle spasms and pain
« Last post by Judie P on May 14, 2021, 01:12:42 PM »
I went to see the "urgent" appointment MD Wednesday night.  My doctor had already prescribed 10 pills of Norco.  Thought maybe I could get some x-rays or MRI started, or an opinion that would help me figure things out more.  OF course, I got the "I just want to get home" doctor attitude. After explaining that the pain was going down the right side of my neck, shoulder, and arm with lots of muscle spasms, she decided I had a torn rotator cuff when my range of motion was slightly limited and needed physical therapy.  She decided to do an x-ray, which I assumed was for the neck and shoulder area.  Nope.  She decided to check for dislocation or fracture, to make sure her "diagnosis" was correct.  Well, x-rays don't show tears.  Before I left, she could not understand why I came to see her as my regular doctor prescribed 10 pills of Norco.
I did find out that she was not the doctor I saw for C-diff, but was the one who initially gave me clyndomycin for skin MRSA which gave me C-diff.  (Of course she denied it when my husband saw her for MRSA two years ago).

Here are the x-ray results:
No acute osseous abnormality


History: right shoulder pain

Comparison: None

No evidence of fracture or dislocation. No evidence of periosteal reaction.
Joint spaces are preserved. No evidence of soft tissue swelling or

Limited evaluation of the right chest is clear.

In April of 2019, my neck x-rays showed Severe degenerative changes of the cervical spine with severe central
canal and neural foraminal changes as described above. No significant
change from prior exam in 1917.

2. 11 mm cyst at the inferior left parotid gland.

Living Life In Spite of Sjogren's / Re: I guess I am moving!
« Last post by meirish on May 14, 2021, 01:29:59 AM »
I am getting very excited about this move. I have done 4 long distance moves in my life when the boys we young. It is stressful as heck, but I always have a book and organize everything and have notes up the ying yang---whatever that is. I always think ahead and check out everything by phone from my current home before I even get to the new town. Easier and helps you know what will be awaiting you.

When we moved from our hobby farm for one year taking our 16 year old son dragging his heels, we left the 19  year old and 22 year old living on the acreage while we were gone.,So we had the farm acreage payment and the rent at the new rental. There were so many issues that I had to keep track of all those years as hubby traveled and I was always in charge..,,he was never home (lucky him) when as emergency occurred and I learned to take care of things.  When we moved that time I had a three ring notebook with information about insurance, the well and what to do if so and so happens..the hot water heater...the electric box...the list was very long. This was to guide the boys through issues that might arise for them. The three of us came home for a visit 6 months later at Christmas and I found the book with a huge sarcastic title written on it. The older two boys thought the book was a hoot. I was so worried about leaving that acreage with the tractor equipment and can get in trouble and parents are always responsible!!!! Silly me...we all lived through

This move is going to be very hard as I have the problem that comes with age...the executive functioning isn't as good and I can't hardly do  more than one task at the same time. Keep getting off on a tangent and start another task. Just walk by a few dirty dishes and then have to clean up the kitchen. Hope my kids don't try to help me cause I sure won't be able to pack and talk at the same time.

I was so lucky today as I was able to get my sons family doctor to consent to take me on as a patient and work with me to line up all the specialists I will need and to teach me about that towns health system. This will help immensely. I see him the second day I am in town. So far things seem to be falling into place but it ain't over til the fat lady sings.

Elaine, your facility sound very, very nice and I am so glad that you are happy and content there. Some nice things help when our health is not good.

Linda, it will be an adventure as you say. I am so excited as the library is only 1 1/2 blocks and the downtown district is so close that on good days I hope to walk slowly down there with my walker. Just the thought of more people around and more activity is exciting. I will be a few floors up and I think I can watch the police station so that will be interesting. Right close to and above the town will make for some activity and noise which I crave. Thanks for you posts. It helps to hear from others. Take care friends. meirish
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