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@athenalee

Thought I’d share this article: ‘I struggle every day with the loss of my former life’: what it’s like to live with chronic pain
https://www.theguardian.com/australia-news/2021/jun/29/i-struggle-every-day-with-the-loss-of-my-former-life-what-its-like-to-live-with-chronic-pain

I’m beginning to feel like the people telling their stories in this article. I have Primary Biliary Chonlangitis which caused liver cirrhosis. I received a liver transplant last August. Things were going great. Then in November I developed tremors, still not sure of the cause. Soon after I started having numbness in my right leg and feet, tingling, and sharp pains.

Saw a neurologist in March, he thought it might be Sjogren’s, which was confirmed with a blood test. Saw a rheumatologist PA in May, more tests. Pain in my neck, back, legs, hands, and eyes is tremendous by most afternoons, along with fatigue. I’ve had a sore throat and glands for two months now, along with an ongoing cough. Raynaud’s Syndrome, which I’ve had for a number of years, is a several times a day occurrence now. Saw the rheumatologist PA again, offers no treatment ideas and no insights as to why this has come on so quickly. Neurologist has no solutions, he’s referring me to a neuromuscular MD. I’m trying to be hopeful, but it’s hard.

I’m on Gabapentin, which helps the sharp pains in my feet and legs, but does nothing for the rest of my pain. Can’t get a muscle relaxer or pain med for “as needed” and to help with sleep. I know there’s not a lot that can be done about Sjogren’s, but there are some options I’ve read about. So, for now I walk every morning, do some exercises, and eat well. I have to work and I live by myself, both of which are a struggle.

Obviously my experience plays out around the world and with so many others on Mayo Connects, so I just don’t understand why it’s so difficult to get providers to work together to come up with a treatment, instead of passing us around to the next doctor…

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Replies to "Thought I’d share this article: ‘I struggle every day with the loss of my former life’:..."

Hello athenalee I was told I have Sjögren’s and I was giving treatment for years with all the pain and stuff that was going on I was on prednisone, metatrexate, hydroxychloroquine and folic acid but what I want to know is what blood test you take to fine out you have Sjögren’s? Because my Rheumatolgist wouldn’t do a blood test and I ask her to do it just to confirm but she wouldn’t she just use the fact that am having pains, dry mouth and dry eyes to say that is my problem so I decided to get a second opinion and he did this blood test smith antibodies and Sjögren’s AB,anti-ss-a/-ss-b and they both came up <0.2 so am at this cross road and I don’t know where to turn because I have been living in pain for years and I have been to so much doctor and not much help Tylenol is my best better and I don’t take it often but when the pain is really unbearable I take especially when I have to go to work. I hope you get some meds to soon