Does anyone else get The horrible nerve pain

I am hurting so badly. All down my left side of my lower body, especially the bottom of my foot and heel and calf. Trying to figure out if this is typical Sjögren’s stuff or is is caused from the 4 cervical vertebral joints which have spinal stenosis. Also, my first Rheumy appointment is in October, finally! I can’t take this pain anymore! Advil only takes a little edge off. I heard that lyrica is a good medicine to try, what is everyone’s experience with it? Does it help the pain? What kind of side effects does it cause you?

Hey....I definitely get nerve pain. It shows up in different forms (tingles, burning spots, etc) that is from SS. However in your case it does sound like a doc would have to tease out which is causing your pain. I moved from Advil to Aleve and it helps me more but some things just work better for some people. Maybe worth a try. I haven't needed prescription pain killers yet, thankfully. (I am still able to refuse them, I should say). Good luck with the new rheumy. Hopefully he can give you some strategies that will help.

Thank you for the reply! I tried aleve and it caused anxiety for me. I have been sticking to Tylenol and Advil. The pain I am having now is really amped up so I guess it is time for something else. I really didn’t want to take any narcotics though.

I have had neuropathy associated with Sjogrens for a number of years. It started as numbing and tingling in my feet and has progressed up my legs and into my arms and hands. I have had the nerve conduction studies done and it is getting progressively worse. I have turned down lyrica and other med's , I am now faced with my reumy wanting me to go on high doses of Cellcept . I'm fighting going on the med's due to the side effects which I'm afraid my be worse than the symptoms. Sorry I'm not much help but just want you to know there are others dealing with the same symptoms. The only drug I've taken is Plaquenol I think it's helped alittle with tiredness . Hope when you have your appointment in Oct. your doctor can help you make the right decision for you. Good luck!

Hi Allwithlove,

Yes, my worst nerve pain is sciatica in my left leg. I started with Gabapentin, but it made me absolutely spin, and that spinning feeling never wore off, and I was started on a low dose. Then on to Lyrica and most of the time it does the trick for the nerve pain. The Dr should start you our low and gradually increase the dosage, it will help to prevent side effects.

I hope it works as well for you!


Be very careful NOT to exceed the daily recommended dosage of Tylenol, Advil or any of the OTC anti-inflammatories, they are very hard on the kidneys and liver! I was made to reduce mine!

Thanks for the posts! It really is a wonderful feeling, having the support, especially from someone who has been there! Thanks for sharing!

Cervical pain usually doesn’t manifest itself in sciatic pain. Sounds like you’re experiencing neuropathy associated with Sjogren’s. Maybe you should try to find a rheumy that could see you sooner?

I get a very severe sharp pain which shoots from my shoulder, up my neck to just below my eye area. It only lasts a few seconds as long as I find the right position for my head and keep perfectly still. It sort of stops me in my tracks.

There doesn't seem to be any pattern as to when it attacks. It can happen 2 or 3 times a day but sometimes I can go nearly a week without it happening.When I mentioned it to my GP she wasn't interested. Said something about the nerves.

It is usually on my right side though very rarely it happens on my left. It bothers me.

I have always been very curious about everything and I like to know exact details but this doesn't always happen with SS.

This evening has been a very bad few hours for me. It was my own fault as I did too much during the day as we are trying to sort the garage out to make more space and get rid of all the unwanted items and rubbish. I should have stopped sooner but I feel as if I can keep going. I must make more effort to remember to stop earlier.

I hurt all over with the osteoarthritis and then my restless legs decided to join in. I spent a long time watching TV and doing a Sudoku puzzle stood up. In the end I gave in and went and sat in a hot bath. My usual remedy. Unfortunately it didn't work as well as usual though it did help a lot.

That's enough moaning from me for now.

Best wishes to everybody.

Hi, so sorry you have so much pain, certainly have been there, my conditions include spinal stenosis lumbar and cervical, ss

fibro, osteo,. I have been trying to defeat these pains for years, altho what you describe only happened once or twice.

I've tried a number of meds, but no hard core opiates. However, my go to (every day) combination is 1200 mg gabapentin, about 2000 tylenol in divided doses, plus about 200 mg tramadol also divided. take the tylenol and tramadol same time, in an hour or so, pain is controllable. I have lots of "prescrilptions" in medicine case, but side effects worse. cannot take nsaids because of an ulcer.

that severe you're expierencing was helped by ice txs 20 mins on 20 off for a day, next day followed by heat same routine.

the heat brings up the circulation. Best to you,Sabra

Thanks for your thoughts guys! my Rheumy moved my appointment up to October 7, so not much longer. I do want ask for some prayers right now though. My 77 year old mom (also diagnosed this year with Sjögren’s)passed out yesterday morning while just sitting. She went by ambulance to hospital. They kept her overnight and are doing tests. They suspect it is heart related, but no confirmation yet. Thanks in advance!


Thank you for your prayers!!!My mom is back home but with no explanation as to why she passed out. I am just glad she is ok for now!

Good to hear, though I'm sure no answer is a little frustrating.


I went through this close to a year ago, had to have been, as I had a sore skull with a big knot on it for a long, long time. Had the MRI, but heard no explanation. I have no memory of getting there, on the bathroom floor, my mom found me, the ER Doc said that with a concussion, I probably never will remember it!

It may not be Sjogren's related, but who knows?

I'm so glad she is home, and nothing was broken! I went through the broken hip ordeal with my mom, and I mean it was a LONG ordeal!

Thanks SK! Does your no also have Sjögren’s?

That was supposed to be your mom. Does she also have Sjögren’s?