Anyone have hip pain or suffer with feet hurting. I seem to hurt more in summer months
I've just developed peripheral neuropathy these past few months. Not only do I have foot pain my toes and sometimes up to my knees go numb. I have Sjogrens with CNS involvement. My neurologist adjusted my meds, but really hasn't helped much.
You need to discuss this with your doctor. Management will depend on the type of pain it is. For example, peripheral neuropathy is often a problem in SS, as another poster has pointed out. In my case this causes tingling, numbness and sometimes uncomfortable electric-shock sensations in my hands and feet, though nothing I'd actually describe as pain. In some people, however, it can be felt as pain or burning.
Many of us have joint, muscle and tendon pains too. Pain in your hips is more likely to be down to one or other of these than to peripheral neuropathy. I have also had flare-ups of rheumatoid arthritis in my big toes in the past, and that can be very painful too.
In general, I tend to get more pain in my joints and tendons in hot, humid weather, though we're all different.
You need to sort out what kind of pain you're having and then address it with your doctor's help.
It's more of soreness in my hips and soreness my feet maybe shouldn't have said pain but stiffness
But thanks for your response I feel so lost with this
If it's stiffness, it's more likely to be joint/muscle/tendon pain - all of which are common in Sjogren's syndrome. Well, they are for me anyway!
We tend to get small nerve peripheral neuropathy which doesn't show up in nerve conduction studies and EMGs. Even some good neurologists are unaware and just say, "well, these tests don't show a problem."
Foot pains need to be looked at medically. If it's stiffness and/or bone spurs, physical therapy can help. I use gabapentin which helps me with a number of issues including the burning, tingling and unpredictable sharp pains of the neuropathy. Other folks can't stand gabapentin.
According to what I just read at a US National Institute of Health site, talk to your docs because sometimes treating the SS inflammatory response can lead to some healing. I emphasize "can" because this disease varies so much from person to person.
I, too, get remission on the neuropathy, for which I am thankful as those are the only remissions I've ever had in my long life with SS.
This is a confusing disease so we often feel a bit lost. Life doesn't end with this diagnosis even if it does require some adjustments.
We get it, and we're always here.
P.S.: I get a lot of soft tissue hip pain which responds well to wet-dry physical therapy.
what about bones hurting?? my collar bones hurt off and on and today my arm bone leading from my wrist to elbow ...again off and on...(cant remeber the scientific name for that bone...brain full of painkillers
are these the bones hurting or the tendons attachments? but when i press the actual bone it hurts. Also have stomach pains and bloated tum for 3 days now...not sure if this GERD ? gastritis? SS? (have all of them 
Seeing the rheum next week ...so will get prescribed plaquenil and predisolone...oh and will suggest biphosphnanate IV for osteoporosis as my stomach cant handle it) ..all so depressing
Hi shaq, the pains in my arms (and, more recently, my left leg too) are made worse by pressing on the area, but my GP says it's the tendons that are causing the problem. The arm pains are going off a bit now, but I'm just coming out of a period of about a year where the pain in my left arm regularly woke me when I turned over onto that side in the night.
I've had bloating on and off all my life. It's sometimes related to constipation, but not always. It gets so bad sometimes, I can't get into my normal clothes and have to wear something loose. It can be quite painful too. Because it's such a long-term thing and doesn't seem to be getting any worse, I've never bothered to have it investigated. I don't think it's the result of SS, as it started in my teens and I didn't get my first SS symptoms till I was about 50.
I do, however, suspect that the bloating and the SS, as well as the mysterious sudden attack of RA in my mid-30s, might all be the result of the presence in my intestines of that certain organism we're not allowed to mention on the Sjogren's forum!
Forgot to add when replying to shaq: a couple of years ago, when I had a pinched cervical nerve for a few months, the severe nerve pain it caused in my arm felt exactly as if it was deep within the bone.
hi lily..went to the rhuem yestrday . got plaquenil and cortisone injection and pregabalin for nerve pain....he seemed to think that pain on sides of my neck (cant move my neck far to left or right with lot of pain and stiffness) is coming from thinning disc (C6/C7)..though orthopedicic guys didnt mention that i could have a trapped nerve.
my bloating is probably related to GORD and gastritis...i tend to be opposite to constipated...and just ignore it..i tend to wear clothes which r 2 sizes too big for me..
my feet pain has eased off to be replace by swollen tendon in palm of hand ...making driving uncomfortable.
i started plaquenil last night but feel dopey today ..cant remember from last time if this is due to plaq,..I have a follow up in 4 months time with blood tests for liver and kidney functions. I was lectured for taking myself off plaq after a few months the last time and told i would be reassessed in 1 yrs time then dosage reduced to half and if symptom free for another year i can stop the plaq.
the rhuem had also prescribed iv bishposphonate for osteoporosis which i didnt bother to tske, so now he has precribed prolia injection x2 yearly...and got another lecture on not taking osteporosis seriously.