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Sick of Sjogren’s Symptoms

Anyone else out there suffering with Sjogren’s Syndrome ?

I haven’t been formally diagnosed but my ENT and rheumatologist believe I have it ( along with my diagnosed psoriatic arthritis, asthma, IBS and hypoglycemia ). ANA bloodwork is positive but all other bloodwork for Sjogren’s is negative. ENT did not recommend a lip biopsy to help with a diagnosis because my dry mouth and other symptoms are too severe and recovery would be brutal ( his words ). So, instead, I have been diagnosed with sicca complex, even though I probably have seronegative Sjogren’s. We are treating the symptoms, with not much luck overall.

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I have #POTS , #Joint hypermobility EDS #Fibromyalgia #Hypoglycemia and #Osteoarthritis . Lately, for about the last 3 weeks, I've felt good! I have very mild symptoms: dizziness, pain, fatigue, headaches, constant thirst, but hardly any tachycardia. This has my worried, thinking it's not actually POTS, but something worse. I think my doctor may think I'm crazy if I continue to ask him if it's normal to feel ok. It's just that I'd felt really, really bad for such a long time. I'm just trying to understand if POTS symptoms can mostly go away. Will they come back? It's weird to feel good. Can anyone relate?

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What you think

Unsure if I have reactive hypoglycemia or just hypoglycemia, doctors don't listen just brush me off, think I'm a hypochondriac. All diabetes blood test come out negative. This blood sugar level is after a snack 1 hour after .
#LivingWithPOTS #Gastroparesis

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Quick Tip Thursday: Keep Medications And Meals In Sync

You may experience hypoglycemia (low blood sugar) if you eat too few calories in comparison to your diabetes medications. Having too much food can cause hyperglycemia (high blood sugar). Discuss managing your meal schedule and medications with your diabetes health care team.

#Diabetes #DiabetesType1 #DiabetesType2 #Diabetestype3 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #ChronicIllness #AutoimmuneDisease #Lifestyle #Health #Medication #meals #HealthCare #Support #SupportGroups #MightyTogether

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Mystery Night Episodes & My Resolution

Almost 6 months ago now, in addition to my other chronic health issues, I started having what I can only refer to as “night episodes”. I’ll wake up feeling weird, nauseous, shaky, weak and generally discombobulated. We had originally assumed it to be a hypoglycemia related thing. I took consistent readings of my blood sugar for a while and did a 10-day continuous glucose monitor and neither showed anything abnormal.

I’ve tried tracking my heart rate, my blood pressure, my temperature. I’m going to see a rheumatologist and a neurologist. But I’m struggling to even describe my symptoms.

Sometimes my limbs feel disconnected and floaty. Or they’ll feel unnaturally heavy.

Sometimes my head feels pressurized and floaty.

Sometimes I feel like my body is filled with bees. They’re not stinging, it’s not painful. But they are buzzing around. And I’d like them to stop.

Or it feels like my body has been hooked up to a very low voltage power source. Not enough to hurt, barely even enough to shock you if I touched you. But enough that I’m extra aware of so many nerves all at once.

The only thing I’ve found that helps is heat and food. I will grab a small snack and get under my heated blanket. Then I can usually get back to sleep. Once I get back to sleep, I’m usually okay.

I don’t get night episodes every night. But some weeks they’re more frequent than the nights I don’t. But they do seem to be connected to my circadian rhythm and anxiety as they’re more likely to occur on nights before I have to work the next day or when I stay up too late (past 10pm) and they have gotten a little less intense as I’ve been working on my anxiety coping skills.

Some nights have been especially bad though. One night I kept having a head-squeezing paired with the brain equivalent to the feeling in your nose before you sneeze. It would happen at random though the night. I was so scared I was about to have a seizure, which is odd, because I’ve never had one before. But I think it was so close to what I imagine the lead-up to a seizure feeling like. (For those that are aware of the lead up to their seizures anyway.) Then another night I woke up at 5am in a panic. I oriented myself, thought it was odd and tried going back to sleep. Every time from then on when I would get to the twilight phase of sleep, it would happen again. I’d get an electrical tightness across my chest and upper arms, and panic. Then rhythmically, even after I’d given up going back to sleep and got up, I’d feel like someone were taking each of my internal organs and squeezing them. It was discomforting to say the least.

At this point, I don’t have any answers. I don’t even have good medical terms to describe half of this. But I’m going to keep looking. The flame of hope flickers still. As a song from one of my favorite childhood movies says, “Hope is frail, but hard to kill”. Hope takes a beating. But she rises yet again.

I am determined. I will pray. I will search. I will be kind to myself. I will utilize my curiosity and be courageous. I will acknowledge my emotions. I will wander this road till I find my way home.

#Mystery #hashimotos #chronicinflammatoryresponsesyn drome #PostconcussionSyndrome #IBS


A Little About Me

My name is Tonya. I am a chronic illness warrior and am passionate about advocacy. I love to share my story with anyone who will listen.
I have been featured on my local news station and interviewer for our newspaper.
I have numerous conditions such as Gastroparesis (g tube, port, gastric stimulator and on TPN) . I have Primary Immunodeficiency and infuse Hizentra. I have Ehlers Danlos, Autonomic Dysfunction and Mast Cell Activation Syndrome. I have Chronic EBV and had an Acquired Hemaphagocytosis due to being immunocompromised and catching Covid-19 earlier this year. I deal with migraines, hypotension and hypoglycemia as well.
I'm currently writing for a migraine site and volunteer as an Oley Ambassador.
My goal is to bring awareness of little known things about my conditions. I am always bringing new information to my doctors. They appreciate it.
I hope to learn from you all and hopefully, you'll gain insights from me.

#PatientAdvocacy #chronicillnesswarrior #gastroparesisawareness #GulfWarSyndrome

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Wellness Wednesday: Staying Active In The Summer With Diabetes

Since summer is soon approaching, let’s share some tips about exercising with diabetes!

☀️Why Should Physical Activity Be Included In Diabetes Management?

Being active allows one to maintain a healthy weight and lower cholesterol, as well as lowering stress, improving memory, and reducing the risk of heart disease and nerve damage. When you are active, your body is more sensitive to insulin, which aids in managing diabetes.

☀️How much physical activity is recommended?

According to the CDC, the goal is to get at least 150 minutes per week of moderate-intensity physical activity.

☀️Physical Activity Tips For People With Diabetes This Summer

- Whenever you start a new physical activity program, get medical clearance first.

- Before, during, and after physical activity, blood sugar levels should be checked.

- Keep active during the cooler hours of the morning and evening to escape the heat.

- You could experience low blood sugar from activities like hiking, biking, and swimming if you take insulin or certain diabetes medications. Therefore, monitor your levels during this time.

- For hypoglycemia, keep quick-acting carbohydrates like sugared candy or glucose tablets.

- Keep healthy snacks on hand during physical activity, such as trail mix, nuts, granola or fruit.

- Stay hydrated with water or electrolyte drinks.

- Depending on your physical activity, wear proper footwear. Avoid walking barefoot to limit the risk of injuries to your feet.

❓ What are some summer physical activity tips you would like to share that have helped you?

Share your tips in the comments 👇🏾

#Diabetes #DiabetesType1 #DiabetesType2 #lada #mody #prediabetes #GestationalDiabetes #JuvenileDiabetesType1 #DiabetesInsipidus #ChronicIllness #AutoimmuneDisease #Lifestyle #Summer #Exercise #Support #SupportGroups #MightyTogether



Hello everyone,
I am a 43 year old malevliving with GP, IBS, Type 1 Diabetes, and Hypoglycemia. I currently have someone helping me 2 days a week with laundry, shopping, and doing things around the house. I can sometimes do things on my own when I am actually NOT in pain. But, most of the time. I am either doing things WHILE in pain, or not doing anything at all. It truly depends on the level of pain I am in. Unfortunately, as of June 16th, i will no longer have someone helping me as the program will be coming to am end. I am going to be looking for a way to get more help after June 16th. Anyway. I just wanted to introduce myself to the group and say that I am very glad I was invited. Hope to talk to some of you more in the future.

Jason S. (CoolJay)