Sjogren's Syndrome Support Group

Sjogren's syndrome is an autoimmune disorder in which immune cells attack and destroy the exocrine glands that produce tears and saliva. It also associated with rheumatic disorders such as rheumatoid arthritis, and it is rheumatoid factor positive in 90 percent of cases.

2 Online

sore feet

Are sore feet part of SS? My feet can hurt so much I hobble around. I don't have arthritis, just SS.

Replies

jewl12
jewl12

I'm wondering if Sjogrens makes Everything sore. I also have very sore , stiff feet. When I get up in the morning I can hardly walk. I have some ostio but not RA. The doctor checked me for RA because I was so sore all over . My feet, my ack , my neck, hands. Especially if I sit even f0r a short time and when I get u[p in the morning. I checked negative for Ra but that's when the Sjogrens showed up. He was suprised at that sense he said it usually went along with RA or some other autoimune disease. As far as I know I only havew Sjogrens. He didn't give me much info. not did he seem too concerned. When I went back for something else and questioned him further and still complained about my feet, he gave me a perscription for Plaquneil. I took it for a week and decided to stop because of all the negative remrks I found on line about it, even though I think I could tell a little difference in mu feet even after a week. But the side effects really scared me off. I wonder how many other people have Sjogrens that don't have an other autoimune disease and how it affects them.
Tom59
Tom59

You stopped taking plaquenil because of what you heard? I'd say that's crazy to some extent.
I take it with great results as do many people. Sure you can get itchy and some other side effects but the chances are really low.
If it helps you take it until you have side effects. The worst one is the eyes but you should be having them monitored anyway.

I'd say as you age you have to take into consideration all the things that happen , unrelated to SjS. We tend to blame everything on it. I'd say stiffness could be age.
I also know if its severe its probably both SjS and age. Feet can be problematic for anyone.

I have RA- MOST SjS sufferers get primary SjS the other is called secondary which includes other auto immune conditions. I am NOT saying your feet are not SjS but I will say they probably are just feet being feet.
Try orthotics get some GEL inserts. I always wear them...my feet have always hurt though through all my sports. I honestly thought everyones hurt in some way.
deleted_user
deleted_user

Lindoreen,

Sjogren's causes joints to be drier than normal, which creates pain. You can also have muscle issues with Sjogren's, like cramping, spasms, or the ever popular peripheral neuropathy. Mention this symptom to your doctor(s). My food pain turned out to be a combination of dryness and PN. Treatment with glucosamine really helped with the dry joint problem, Plaquenil reduced the inflammation, and treatment for the PN over time got rid of the burning and tingling so that my feet stopped being my #1 complaint. Your doctor can order x-rays to rule out rheumatoid arthritis which actually damages the joints.
deleted_user
deleted_user

Jewl12,

You should do more reading from reputable sources--NIH.gov has good articles about Sjogren's, also the Sjogrens Syndrome Foundation (www.sjogrens.org).

Plaquenil is like a first line of defense against the inflammation and it's damage with Sjogren's. Long term improvements are well worth the potential risks for most of us. It was the drug that gave me back my life by reducing the fatigue, joint and muscle pain, and made me feel like life was worth while once again. Routine eye checkups to rule out any Plaquenil building up in your retina are recommended.

I've been dealing with Sjogren's for nearly 15 years since my diagnosis, and I've only met one person who had the eye problem with Plaquenil out of thousands I've met online. My rheumy, a researcher in the Sjogren's field, has never had a patient who developed a eye problem. My eye specialist, who did research for Restasis on Sjogren's patients, has never had a patient who developed an eye problem with Plaquenil. It's worth a try to give yourself some relief.

Not everyone has to develop another systemic disease. I have Primary Sjogren's and Secondary Fibromyalgia. It's plenty and I'd still be miserable if it hadn't been for the improvement with Plaquenil and a select group of other meds that have given me my life back.
hjs03
hjs03

Plaquenil gave me my life back!! My feet and legs would be so sore and in pain just from one trip to the grocery store. After I started Plaquenil, (after a few weeks) I was able to do more and after a few months, I was able to go shopping and walk and more!! I still have stiff feet in the mornings, but after about 30 mins the stiffness goes away!! I would give Plaquenil a chance!!
deleted_user
deleted_user

When i wake in the morning I have very sore heels and the pain and stiffness radiates up my legs to my back. Usually improves after walking around a bit. I was also diagnosed with Raynaud's Phenomenon, which often goes along with SS. In heat or standing or walking for to long my feet get swollen, bright red and feel like there on fire. In cold they turn white/blue and ache like there in the freezer. This also effects my hands. It has to do with the blood vessels. You should do some research on this phenomenon.
deleted_user
deleted_user

Thank you all! Sounds like the answer is Plaquenil. I am going to get right on it. I have had plantars fasciitis in the past, but was wondering if the pain I am experiencing now might be due to the SS. Seems to be a possibility. Will see what the RX does.
Tom59
Tom59

http://en.wikipedia.org/wiki/Synovial_bursa

These are what get affected by dryness. They get affected you have joint problems. They actually now use a synthetic fluid for people to hips, knees, elbows even shoulders.
They just give you a shot to help with lubrication most people have excellent results using it.

http://arthritis.about.com/od/synvisc/f/synvisc.htm
jewl12
jewl12

Sounds like the majority say Plaquneil is a great medication and that my fears are unwarrented. I guess I'll try again. And Tom, I know I'm getting old but I think my feet have something to do with arthritis and not just old age. I also have knots on some of mu toes that my doctor says is arthritis. By the way, I'll be sixty two in March and although I used to consider that old, the older I get, the younger it seems. I have also tried gel inserts, heel inserts,, arch supports, good shoes, the works. Some things help a little, not a lot.
deleted_user
deleted_user

Other things which are helping: icing my feet, putting them up whenever I sit down, and multiple kinds of shoes which I now switch between depending on my activities and how my feet are feeling. Before I get up in the morning I lie in bed and stretch my feet, doing ankle rotations, pointing toes and flexing. I also jiggle my legs around for awhile to get the blood circulating, then I stand up very carefully when I first step onto the floor. I too am often stiff and sore whenever I stand up so i do so very carefully and gather my balance before I start to walk. I am 62 and was so athletic when I was younger, a dancer, played soccer. Bothers me to see this happening. I swim and do water aerobics and highly recommend them. A lot of fun too. All of us there have some sort of physical problem so we all feel accepted and welcome
deleted_user
deleted_user

My doctor told me that eye complications from taking Plaquenil are very rare. The risk of complications from going without treatment for your Sjogrens is significant tho. Most people have to take Plaquenil for several months before they start to feel better so be patient. I've been on Plaquenil for six weeks and I'm amazed at how steadily I'm improving every day. I've had no side effects. For me, it's a miracle drug. I don't know who invented it but I'm deeply grateful to them.
nursea49
nursea49

If you look up any drug you have to take you would freak out. If you are monitored like everyone has suggested you should be fine. It does take several months to work so you do have to be patient.
Plaquenil has relly helped me.
jltraw
jltraw

I think if I didn't take plaquenil I wouldn't be able to walk....I have tried not taking it, trying to cut back some of the meds and I realize very quickly that it was not one to get rid of! One of those meds that the benefits outweigh the side effects.

Just follow the recommended eye care.

Well Wishes
Jackie
deleted_user
deleted_user

Thank you all for your input. Would you believe that when I talked to my rheumatologist about my sore feet they didn't mention that it had anything to do with SS? I am taking it steadily now. I love this group! It is so helpful.
deleted_user
deleted_user

Lindoreen - My feet hurt pretty bad, where I too am hobbling. Mostly it's been in the morning but the past few days have been hurting all day. My heels are what hurt. They're fine when I'm not standing on them. Has anyone tried massage?