Hi , I am new . Have been diagnosed Sjogren's 8 month. Dry eyes, nose , throat, breathing problem, GERF . lost a lot of weight.
Now I've been buring foot and numb finger &arm . Please tell me about your experience of it and how can i copy it. Any advise will be great.
Xiao
Hi Xiaoqin
You're having a lot of symptoms, which is neither fun nor soothing nor easy to deal with.
Different folks on here deal with the same things differently. Some things, like dry mouth & eyes and the burning feet I treat with medicine. I'm in the States & use evoxac/cevimeline, 30mg 1-3 times daily, for the dryness. At higher doses it causes too much sweating and where i live it's hot so sometimes I don't take the 3d pill.
For the burning feet & numbness: i've been on gabapentin for more than 20 years, started for chronic pain. Now it also controls Restless Leg Syndrome. When I have a run of burning /numbness, I'm allowed to increase my dose briefly & that seems to work.
GERD: I'm fortunate that mine mostly disappeared with a change in diet. If I eat something I shouldn't, or even for an unexplained flare, I eat some fresh parsley. If it's a bad flare, I'll make tea with basil & drink that. Fresh is best but it needs a lot; dried works as well but doesn't taste as good. Both of these uses come from an herb book and were approved by my gastroenterologist. I keep meds on hand just in case: famotidine/pepcid and pantoprazole. I don't like pantoprazole, omeprazole, nexium, proposed, ranitidine partly because they give me migraines. That's why I changed my diet & found the herbs that help me.
I use OTC eye drops several times a day. Right now I'm using bisine dry eye relief. I have a separate RX for elestat when eye allergies bother me. I used Refresh Plus for Sensitive eyes for 15 years but then needed more moisture. Refresh Plus is a good place to start. Also, talk to your eye doc.
It is very important that you treat your mouth & eyes as the dryness damages them if left alone. What you use to brush your teeth matters: there are Many dry mouth toothpastes which should be used with a dry mouth rinse rather than a water rinse, all after 1st flossing. Rinse for a full minute & don't eat, drink or chew gum for at least 20 minutes. This routine doesn't fix dryness but it creates a healthier stasis in your mouth.
Many of us drink water all day long, and that's vital, also. I drink 48-72 oz of water daily.
As to dry nasal passages, I use a saline mist up to 4 times daily, 2 squirts ea. side. I can't use a Neti pot but i have a battery powered forced-saline rinse for my sinuses & it helps a lot, even if it's gross.
As to your cough, have you had it checked out? I have a couple of lung diseases that have nothing to do with Sjogren's & my cough comes from those non-SS issues.
Other folks will pop up with what works for them. I hope you find relief for at least some of your symptoms, if not all, and soon.
hi, the burning and tingling feet and also a lot of pain have settled for me with the use of hydroxychloroquine. I think it is quite commonly prescribed for Sjogren's. I was having major difficulties last year and walking was becoming very difficult indeed but this has been great for me and settled it really quickly. Good luck. x
Have you ever been tested for diabetes? Some of those symptoms are common with diabetes. In order to rule it out you might want to ask your GP to do an A1C. It's just a simple blood test.