Sjogren's and neuropathy

So sorry you have joined our club. The good news is that you are describing great medical care and follow up. Having a team of medical  professionals who are kind and competent is a long journey for many.

I have SS (Sjogrens Syndrome) and lupus overlap. I took Plaquenil for two years and found that it provided relief. I stopped when other medications increased my side effect profile.

I have neuropathy but maybe not as badly as you describe. I take Lexapro and Klonopin with Vitamin E, Magnesium and multi-vitamin. I also use therapeutic grade oils and heating pad for relief.

I have not progressed to Lymphoma nor do I know anyone who has. Many of us caution against "Dr. Google". It can both inform and scare you often needlessly.

Tell me about your symptoms and I will answer any questions that I can. I know there are others who will respond also.

Take Care

Hello Jenifer,

?Well Shoot, I am sorry you are here with us as well, but you sound like you are being well taken care of!!  It can take an army of specialists!!  I do NOT have the lymphoma issues, but I do have the neuroopathy in both of my lower legs and feet, caused by my SS.  My glands do get swollen, due to the slaiva issues, I have been lucky so far, as I have learned to massage them when they get like that, and it helps me greatly.  Also, they put me on imuran, which has helped with the dryness, big difference.  The massaging tends to soften them up, and they do end up draining on their own.  I do drink a LOT of water, floss and brush several times a day. I also will suck on a ittle piece of lemon, which activate the saliva, this also helps.  I also see my dentist at least 2 times a year, he tells me I am his queen of flossing!  Our teeth can be so vulnerable to this darn disease!  I also have the tinitis in my ears, and it has gone inside to my organs.  I am unfortunate in that I can not take the Plaquenil, as it caused damage to my eyes within the first 3 months, and had to be taken off immediately.  Once it causes damage, it does not return after going off, this is why one must see an Opthomologist every 3 months when you are on it.  It is unusual, not everyone has this issue, and you most likely will not, I am the unlucky 4%. My mom has Lupus, and has no issue with it at all.  I too now have Lupus.  I felt so much better for 2 months...too bad!!  But, all my specialist are taking care of me, and I am functioning pretty well now.  As you know, there is no cure, but they can help us, and there are new meds coming out all the time, so don't dispare!!  Also, it is not unusual once you have one auto immune disease, you normally have others as well, which I do now.  Crazy thing!!  I only wish it was just the dry mouth and eyes...I would not wish this on anyone, for those of us that have it to the extent we do!!

I sure wish you well!!!  Take the time you need to rest all you can, when ever you need to!!  The fatigue can be crazy!!  Keep us posted!!

Hello! I had bad neuropathy that got worse after awhile. Klonopin helped but plaquenil stopped it after about 4 months of taking it. Apparently it doesn't do that for everyone but did for me. I took plaquenil for about 1.5 years and then went off of it and haven't had another neuropathy episode. Best wishes!

Hi Jen! I'm a lot like you. I had just about all your symptoms and new something was wrong with me, but my primary care doctor just dismissed it and chalked it up to medication side effects of my Cymbalta and the lovely catch all diagnosis of Fibromyalgia. I believe some doctors use this as a diagnosis when they don't have an answer and don't want to go digging for a answer. Where is Dr. House and his team when you need him? 

Eventually, I noticed that my submandibular glands were the size of golf balls. They had been this way for over a year, but I thought that must be normal because my primary care doctor always checked my neck at visits and never said anything. I compared my glands to my children's and my husbands and theirs were not palapable, so I thought I better point it out to my doctor. He freaked out when I showed him and sent me to the ENT who biopsied one of the glands and it came out noncancerous. He then told me he suspected Sjogren's and performed a lip biopsy which came out positive. I was so happy that he went digging to find out what was actually wrong!

I had been on Cymbalta and Klonopin for years for anxiety and depression, but my Neurologist tried increasing the Cymbalta for my neuropothy I was having in my legs, feet, hands, and lower arms. It didn't help. However, after I was put on Plaquenil by my Rheumatologist my neuropothy went away. I didn't know what caused it to disappear, but I guess the Plaquenil must have done it.

I too suffer from multiple swollen glands off and on in different areas of my body. The ones that have worried me the most are the ones on both side of my groin which now have been there since last April. (I write down new symptoms so I can remember when they start.) I saw an Oncologist and he did a CT and bloodwork, but all looked normal. He said enlarged lymph nodes and swollen glands were sometimes just a normal part of having an autoimmune disease. I thought for sure I had cancer and worry that eventually some of these swollen lymph nodes will turn into cancer. I try not to think about it and take each day at a time.

In July it will be 3 years since I was diagnosed. I now also have severe joint pain everyday. I started Methotrexate, which has been a rollercoster ride of side effects, but it has eliminated my joint pain. The doctor doesn't know it yet, but I cut my dose down to 3 pills instead of 6 and my side effects are better, but I still get joint pain relief. I now know that when I feel really tired and bad and my joints hurt that it's a flare and not the Flu. 

I wish you the best of luck and congradulate you on getting a diagnosis. It's an unfortunate diagnosis, but a diagnosis at the least. This way you're able to know what's wrong with you and get on the road of proper treatment and hopefully get to feeling better. Just know you are not alone and there are lots of us like you out there that can relate. I hope you get to feeling better!

Take care,

Cara

Hi Jenifer

My neuropathy comes and goes. If the time flares up too badly, I increase my gabapentin briefly. I've been on that for 22 years & it takes care of the restless legs.

Here's what my docs says about the swollen glands/nodes: only worry if they continue growing. Thus, I don't worry about the one on backside of one knee because it hasn't increased since I first noticed it about 7 years ago. It's a fact of aging that our bodies find new ways to lumpify!

Hello jenifer, I was told my small fiber neuropathy was caused by SS also. I do have diabetes but neuro said it wasn't that type of neuropathy and it was from SS along with my other symptoms.

Sf neuropathy

Choking

Joint and muscle pain

Numbness

Dry throats and mouth

Now gritty painful eyes

It also caused a posterior nosebleed requiring emergency surgery and 4 holes in my sinus and a blown artery.

I bet you find many people here have a lot in common with you unfortunately 😢 And know you always have a place here to talk ask questions and or vent. Everyone here hs been so wonderful!

Wishing you a pain free day!!!

Hi jeniferpg!

I was diagnosed 6 years ago with Sjogren's, but had fatigue and other symptoms before that. I recently started getting pain in my legs which my doctor has told me is neuropathy. It was so painful at first that I couldn't put any weight on my right leg. I am now on Gabapentin and it has helped somewhat. I'm hoping that as time goes by it'll take away most of my pain. For me it has become quite debilitating. I've been on Plaquenil since I was diagnosed and it has helped with other symptoms immensely. Do you suffer a lot from your neuropathy? Are the meds helping you? Let me know how you are doing.

Take care,

Christina

Hi Jeniferpg,

Sorry you had to join the club...it's not one that any of us wanted to be in. The illness is like a roller coaster with up and down days. Plaquenil is the gold standard medication and works for many people. It worked for me within two weeks. I had been on since 2012 until a couple of weeks ago when my new insurance denied coverage of it. My doctor is writing a letter. Apparently, it was still working, because I am now getting rather achy. 

There is a sjogren's forum you may wish to visit: www.sjogrens.org   You can learn a great deal from that site (go to the Living With Sjogrens) section after establishing a free name/pw.  Also, in the top right-hand corner of that site is a search engine which you can look up anything you want to know about Sjogren's, if it has been discussed on the site, it will pop up.

You can get some great handouts from the Sjogren's Syndrome Foundation site. Definitely download the handout on how to massage your salivary glands. I had a dentist at the NIH tell me that Sjogren's patients should massage their glands in this way every day.

Finally, there is a wonderful book (The Sjogren's Book) by Dr.Daniel Wallace which will tell you everything you ever wanted to know about Sjogren's. It will tell you how Sjogren's affects various body systems. You can purchase the book on the SS Foundation site in their shop or on Amazon.

The one thing I would tell you is that SS is different for everyone. We all share similar symptoms at one time or another...they wax and wane. We all just do the best we can. I do think it is important to be as educated as possible. I facilitate a Sjogren's support group in PA. and always try to provide the latest studies and research on SS. While there has not been a lot of research in the past, this is no longer the case anymore. It helps to understand what Sjogren's is and what comes with the territory.

The key is establishing great docs who will really listen to and work with you.

Take care.

SjoDry

Hi Jen,

Small fiber neuropathy is my number one symptom.  My Rheumy is not sure if the Sojogren's caused it.  Tongue numbness.  Headaches, earaches.  Arm pain and numbness.  Basically head down to upper body.  So may weird syptoms.  Heart PVC's, exhaustion, always just feeling wiped out.  Eye burning and tearing.  No real mouth problems other than tongue numbness.  I go to Mass General and Im treated with Rituxan infusions.  Helps alittle.  It's been 6 years.  Total life changing. Physically I look fine.  No support for family.  They say I am basically a hypercontriat and Sojogren's is just a bit or dry eyes and mouth.  BS!