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Sjogren's Syndrome Support

A very warm welcome to Stephen from New York!

@cuzzinphatty

Hi there, Stephen

My name is Danielle and I am a Ben’s Friends intern. I wanted to take a moment to welcome you to Sjogren’s Syndrome Support. We are happy you found us here at Ben’s Friends!

I understand that you were diagnosed with Sjogren’s have dealing with fatigue, brain fog, pain, among other symptoms. I am so sorry that you dealt with these uncomfortable symptoms for a few years prior to receiving concrete answers. I wonder how your current methods of treatment are working for you. How are you feeling overall? I hope you keep us updated.

I can see that you have already posted in the community, which is wonderful. I always encourage new members to create their own discussion posts by clicking the + New Topic tab. This is a great way to connect with others, ask new questions, and share your story.

As always, please give me a shout if you have any questions or concerns.

Hope to hear from you soon,

Danielle

Thank you. I was prescribed hydroxychloride and they suggested the paleo diet. I was told that the med could take 4 months to work. I also take 1500 mgs of turmeric a day. The pain in my fingers was so intense I could barely drive. The neuropathy in my foot and toes had me in tears. Three weeks after taking the new med and turmeric as well as following the paleo diet my pain is totally gone. No pain whatsoever. The fatigue and brainfog continue. The brainfog has ben around a long time. I saw 2 neurologists and both said there was nothing wrong. One treated me for migraines , I wasn’t having headaches at that time. I would get lost , stop talking mid sentence , forget names etc… People laughed about it constantly. I just rolled with it figuring it had something to do with both my parents having dementia. The fatigue started a few months before my diagnosis. I walked a treadmill 6 days a week for 5 miles each day , one day I couldn’t do it , not for 2 minutes. It was the finger pain that sent me to a rheum who put it all together.

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Hi Stephen,

Thank-you for your message, it is great to hear from you!

I am so sorry to hear that the neuropathy in your feet and toes had you in tears. I cannot even imagine. On the other hand, I am thrilled to hear that your new medication and turmeric have had a positive effect.

I understand that your fatigue and brain fog continue to persist. How awful that people have laughed about these symptoms. You are certainly not alone. These observations and concerns are valid, and I hope healthcare professions will take your fatigue and brain fog seriously.

Have you since received any support or input about how to manage these symptoms? How are things going for you this week?

I hope you keep us updated. We are thinking about you!

Danielle

Danielle , thank you for your kind words. My pain is minimal but the fatigue and brain fog continue to haunt me. Its sad that it took so long to diagnose this. Some symptoms have been there for a decade , including brain fog. Ive been to 2 neurologists that didn’t catch it , several other drs , fortunately my GP sent me to my rheum for intense finger joint pain and she caught it immediately. Honestly I was a laughing stock over the brain fog , even my loved ones thought it was funny. I blamed it on my parents dementia. I got lost all the time , I couldn’t remember names , it was horrible. I have a great GP , she was always sending me to specialists , always in touch and trying to help. The specialists just didn’t catch it. My new rheum suspected it immediately ordered xrays and bloodwork to confirm it. Im doing as instructed including the paleo diet. I am at peace now just knowing what it is and trying to deal with it. Noone laughs anymore. I do get support , my wife and I are both disabled and raising 3 young grandchildren. The grandchildren have social workers here often that have helped us in so many ways. They know of our issues and help in every way imaginable. They are a gift from above for sure. This week has been bad but not from the ss. I have sciatica bad from an accident in 1998. My spine was damaged and I have cadaver bones in my spine now. My buttocks right down my leg is in intense pain. I avoid opioids and just deal with it. Other then that I am well. Again I thank you and everyone here for the well wishes.