Hi everyone. I was recently diagnosed with SS and am overwhelmed have many questions and concerns . Does anyone have constant numbness in arms, legs, and hands? Neuro says neuropathy just wondered if it could be SS symptom? Also any advice on controlling tremors and joint pain? Has anyone found any meds that help? Any diet advice? Any advice/support you can give me would be greatly appreciated.
Hi Ann! I had tremors when my disease first flared, but they eventually subsided. I also have numbness in my feet and hands and burning/weakness in my thighs. Ask your neuro about neurontin or amatriptaline (sp). Do you have Raynauds? As for diet, I have gone to clean eating and gluten free. It seems to help, I definitely have more energy. My neurologist also recommended I use no chemicals when cleaning or in my make up/ body products. I’m still working on eliminating those things. It’s a lot of work!
I have neuropathy from my waist to my toes. I take 1800mg of Neurontin per day. It does help a lot. I am also on Plaquenil which is for my Lupus but I think it helps the SS also. As for diet...I am mostly GF and have been totally GF and I honestly don't see much difference. My hubby must be GF so that is why I am basically. Good luck!
Thanks Reet I can definitely relate. My tremors have improved some & I have neuropathy in my left hand, all of my right arm and hand, and both legs to my thigh. I also take neurontin but only 600mg a day so it helps some maybe I should talk to my neuro about increasing the dose I was just recently prescribed it. Thinking of trying GF and see if that helps. Any advice on joint pain/stiffness? Thanks again.
It can be overwhelming. Most of us have been there. I have numbness (neuropathy) in my toes. My podiatrist put me on a prescription called Metanx, which is mainly a vitamin combination. It has helped some. Some help is always a good thing for me.
I am celiac so have eaten gluten-free for many years. In addition I try to eat an anti-inflammatory diet. It seems to help. For my joint pain my rheumatologist put me on fish oil 2400 mg three times a day and I added glucosamine chondroitin 2 tabs three times a day. They have made a difference and have no side effects. I also get in a warm tub and soak 30-60 minutes which greatly helps reduce my joint pain.
All I can say is that these things have worked for me and are safe. A lot of us have found that what works for one may not work for another but it may be worth a try for you. Hang in there. You will find something that will help.
Tessa said:
Hi Ann! I had tremors when my disease first flared, but they eventually subsided. I also have numbness in my feet and hands and burning/weakness in my thighs. Ask your neuro about neurontin or amatriptaline (sp). Do you have Raynauds? As for diet, I have gone to clean eating and gluten free. It seems to help, I definitely have more energy. My neurologist also recommended I use no chemicals when cleaning or in my make up/ body products. I'm still working on eliminating those things. It's a lot of work!
Hi Tessa thanks for the response! I was recently prescribed neurontin I can't tolerate amatriptaline. It helps some. I take 600mg daily do you think I should ask my neuro for an increase? My tremors have improved some. What is Raynauds I'm not familiar with it? Thanks for the tip on chemicals also!
Hi, I also have tremors. Neurontin has helped with the tingling and numbness in my feet but not the tremors in my hands. I seey rheumatologist this week and maybe he has a solution. I’ll keep you posted.
Welcome! I have for many years experienced numbness in my legs. Recently, within the past year, severe muscle weakness in my upper arms. I was diagnosed with SS about a year ago. I don't have tremors, but do have joint pain. My joint pain was diagnosed as osteoarthritis. Who knows.
I am not currently on any meds for SS. Do take a few supplements, like Vitamin D, Biotin, Fish Oil, and a Probiotic.
SS really scares me. I know it is taking a toll on my eyes, mouth and skin. (so dry)
Find a good Rhuematologist. I am seeing a new one next month. Also a dentist and eye dr with a knowledge of SS.
Good luck!
Ann, talk to your dr about increasing your dose. I know it takes time for neurontin to build up but it also takes time for you body to adjust to the side effects. If you take too much too fast you will feel like a Zombie!
Thanks Tessa! Have you had many side effects from it? I haven't yet.
Hi Connie! Nice to know I'm not alone in this! Having a really hard time getting a Rheumatologist, the last one neuro referred me to just called and said they are booked until December! So I called neuro back & told them I need a new referral. Hate the dr waiting game its so frustrating. Thanks for the advice and support.
Hi Sarah! I'm still waiting to get in to a rheumatologist very frustrating. I live in Maine so drs like that are very limited. The last one couldn't get me in until December! I called neuro back for a new referral. Keep me posted on how you make out.
Hi Snowflake! Thanks so much for all the advice and support! Greatly appreciated.
Ann, when you are feeling discouraged, just log on here. I have found this site, and everyone who contributes to it, to be a very good source of information and encouragement.
I have numbness in both hands and very shaky hands as well. I have severe pain and use pain meds for it, I see a specialist soon hoping they can help me more! If I sit my feet go numb like the circulation is cut off. I am not sure if it is from SS or not but I am seeing more and more with SS patients!
Hi Allison! I agree it seems a lot of people with SS have it. My neuro says it has nothing to do w/neuropathy so now I'm waiting to get in to a rheumatologist and see what they say. Neuro put me on a low dose of neurontin which helps some but think I need an increase in dose. Also have extremely painful stiff joints. I can definitely relate.
Thanks Connie! I will for sure. It's so good to talk to people who truly know what you are going through and give you so much support and advice.
I will ask my rhematologist and let you know what he says. He is a teacher and has a lot of knowledge. Hopefully there is some explanation there.
Thanks Allison. I hope he has some answers just think positive! Talk soon.