Sjogrens World Forums

Diet has nothing to do with neuropathy, so neither the intestinal block nor the esophageal block are affected by diet.

There is no cure or prevention for immune mediated neuropathy.  I do take 3600 mg Gabapentin (Neurontin) a day for the intense pain of my Small Fiber Neuropathy (every inch of my skin).   So there is a treatment.  Fortunately I tolerate that much gabapentin.

Elaine

Hi

I can only imagine the pain you must have been in. I have a friend who had a blockage but it needed surgery and she said it was the worst pain of her life. I hope you and your doctors find a way to stop it returning.

Take care - Scottie

Elaine, I'm so sorry you have to go through this, repeatedly at that! Have you had to adjust your diet to hopefully help prevent it?
Hopefully, your experience, great attitude and determination will be an example to any other members who may be faced with this sort of concerns.

Just spent three days in hospital when my small intestine suddenly 'closed'.  This is the result of autonomic neurological damage to my gastrointestinal system.

VERY Painful...unremitting constant pain and then the added joy of a naso-gastric tube for three days. The condition is Diagnosed with a CT Scan.

The blockage or spasm relaxed after about 36 hours and I had bowel movements which had been above the blockage.  The biggest difficulty is explaining why I have the blockage and why I can now go home once it is gone.  Their fear is that it will come back and I'll have to be readmitted.

The 4 pseudo blockages have happened about 4-6 years apart over 20 years.  I have no warning, just pain. 

I also have neurological damage to the opening of my esophagus to my stomach.  The opening spontaneously stays closed and food just fills up to my throat.  I've had two procedures in about 10 years, but not working well.  The next step is a difficult surgery, so I'm hoping to be able to just put up with the problem rather than have the surgery, which may eventually fail to solve the problem!

I'll be 84 next month and I want to wait this out without surgery if I can.

Elaine

Welcome! Since I'm on the opposite coast, and in Canada, I'm not much help, but I've seen comments about UCSF Sjogren's Clinic, that are favourable, if that helps.

Hi, I'm new to the forums so hopefully I'm asking in the right place. I wanted to ask if anyone knows of rheumatologists in the San Francisco Bay Area who are knowledgeable about Sjögren's. I currently have Kaiser insurance so someone within Kaiser would be ideal, but I'm open to paying out of pocket if necessary

Sounds like you've hit the jackpot for medical professional! I'm so glad for you.

I'm also sorry you have so much to deal with but it really sounds as though they are going to help.

Wishing you all the best for 2026.

Take care - Scottie 

Dear Sjogren's Angels,

By sheer luck I now have a medical professional who knows exactly what I'm dealing with!  Talk about feeling validated.  If you read/scan his notes you will see that he is thorough and sympathetic,and very knowledgeable.


Assessment & Plan
Chronic lymphedema of lower extremities
Chronic lymphedema in the lower extremities, exacerbated by neuropathy and lack of mobility. Contributing factors include gabapentin-induced swelling and vascular insufficiency. Lymphedema is not primarily due to venous insufficiency but rather secondary to neuropathy and autoimmune conditions.
- Prescribed pneumatic compression pump for daily use, typically for one hour per day.
- Referred to specialized lymphedema therapist for instruction on compression techniques and equipment use.
- Provided prescription for compression garments to be fitted at a medical supply store.
- Coordinated with physical therapy for ongoing management and monitoring.
 
Autonomic dysfunction with temperature dysregulation
Autonomic dysfunction characterized by temperature dysregulation, with episodes of erythromelalgia and acrocyanosis. Likely due to capillary dysregulation from nerve damage and autoimmune conditions. Management focuses on accommodating autonomic fluctuations without exacerbating skin sensitivity.
- Recommended use of Circaid compression garments to manage temperature dysregulation and provide comfort.
- Educated on the use of compression garments to accommodate autonomic fluctuations.
 
Chronic peripheral neuropathy with small fiber involvement
Chronic peripheral neuropathy with small fiber involvement, contributing to balance issues and hypersensitivity to touch. Neuropathy is a significant factor in her inability to walk and contributes to lymphedema.
- Continue current management with gabapentin for neuropathic pain.
- Encouraged use of assistive devices for mobility as needed.
 
Steroid-induced skin atrophy and senile purpura
Steroid-induced skin atrophy and senile purpura, resulting in fragile skin prone to tearing and bruising. Skin condition exacerbated by chronic steroid use and autoimmune conditions.
- Recommended over-the-counter oatmeal-based lotions such as Gold Bond eczema, Cetaphil eczema, or Aveeno for skin care.
- Suggested use of Dormin for additional skin reinforcement and bruising prevention.
- Advised on the use of a skin cocktail with hydrocortisone and Benadryl for localized inflammation.
Diagnoses and all orders for this visit:
 
Varicose veins of both lower extremities with complications
Lymphedema of both lower extremities
-     Ambulatory Referral to Physical Therapy
Pain syndrome, chronic
H/O diastolic dysfunction, grade 1 on TTE at Duke Cardiology of Raleigh 10/11/2011
Polymyalgia rheumatica (HHS-HCC)
Polyneuropathy
Idiopathic small fiber sensory neuropathy
Adrenal insufficiency (HHS-HCC)

This doctor knows erythromelalgia, too!

I also have constant painful Sciatic due to compression of nerves at L4-5.  I am seeing a Professor of Neurosurgery on the faculty of Duke Medical School on Monday 

I have a large Squamous Cell Carcinoma on my cheek very near my eye.  My doctor is a Professor of Dermatology on the faculty of Duke Medical School.  He is coordinating MOHS surgery with an Ocular Plastic Surgeon.

My gastric-esophageal autonomic neuropathy causes food to stop moving into my stomach.  The second surgery did not last for more than 6 mos.  The first surgery lasted for 9 yrs.  Now more drastic surgery is under consideration.

I am getting a custom power chair which will make my life easier.  I already have a hospital bed (the most basic one). 

I am getting tired of all this.  I spend all of my time coping.

Sorry my post is so lengthy, but I know that HERE I will be understood.

Elaine

Our Facebook link is  https://www.facebook.com/profile.php?id=100064832792640

Where is Irish?
Postings are sparse.
I can not help but think Sjogren's World needs to establish a Facebook presence, to reach more people receive better access for everyone. It can be closed and private as it is here.
I know because I have not been here for years...I have no right to suggest this. But I feel that many with Sjogren's need the expertise of the women who have provided great support for many years on this site.
Just a thought...
I have been looking for up-to-date posts and have also observed comments to be as sparse as up-to-date postings.
❤️ Kimbo