First of all, thank you to all of you for the existence of this Board!
I was recently diagnosed with Primary SS and am mostly confused. My terrible eye dryness seems to be under control with Restasis and night time ointment, I'm controlling the dry mouth. My chief complaint is the terrible pain in my fingers, hands and wrists. I am currently only taking motrin. The pain wakes me up at night and is equally distributed on both hands. The pain, burning, stinging and numbness lasts all day long....
Has anyone else had this type of pain and what do you do about it?
Thank you!
Welcome Mona.
I too have pain in my hands,fingers and wrist.
(other joints as well)
I am not sure if my hand pain is entirely my RA or could
it be my sjogrens too?
I take Plaquenil and Cymbalta.
Do you see a rheumatologist? has he offered any medication
to you?
eye2dry
Thank you eye2dry!
My Rheumy said that I tested negative for RA. This is a pain that comes and goes -- but has been severe for the past month which is what brought me to him in the first place! I tested negative for SL and RA but positive for SS.
Do these medications help the pain or is it primarily to minimize damage to the joints?
This has all been quite confusing!
I appreciate your response!
Mona
If your stated that you are positive for Sjogren's did he discuss treatment options? Did he suggest anything for pain?
Many here including myself use Plaquenil. Has he discussed this? It takes about 6 months to kick in. Once it did I found it helped me function better as far as joint pain. Others use different approaches. You need to decide what works for you. If you use the search bar you should be able to find more info.
Hope you feel better soon.
I had neck and shoulder pain for awhile that was so severe I had trouble dressing. I was also taking Motrin. He suggested I try several different anti-inflammatory drugs as different ones help different people. Mobic works for me.
Also, and I'm the pot calling the kettle black here....not everything has to be related to the disease. You might have carpal tunnel or something else, so it needs to be evaluated. My upper left arm is the most affected by my Morphea. Aches all the time and now has crossed into my elbow. It's been really bad and my Rheumy said that yes, unfortunately it was my Morphea affecting it, but that I also had the beginnings of osteoarthritis in it, which was what was hurting too. So even without the Morphea, it would hurt and basically be normal "getting older" stuff.
Yes, it could be related to the Sjogrens too, but I've gotten horrible about blaming everything on autoimmune and forgetting there is other reasons out there. :)
Mona, the Plaquenil started to take effect and be noticed by me after 2 months on it.
It decreased the pain In my feet , elbows and right hip.
Do you have any of the dry eyes and mouth that a lot of sjogrens people have ?
That was rally my first symptoms many years ago and I never looked into really well.
My GP and eye dr. just chalked it up to allergies and ocular rosacea.
It wasn't till I got joint pain that anyone dug any deeper on it.
Did your rheumy mention Plaquenil at all?
eye2dry
I have had ulnar tunnel syndrome (the ulnar tunnel is right next to the carpal...) AND some nasty hand pain/swelling from Lupus/Sjs....they both suck! The difference was that the UNS responded to rest, wrist brace, and physical therapy, while the autoimmune pain did not.
I have been on Plaquenil for a couple of years and Methotrexate for almost 2 years, and those have helped with EVERYTHING. My hands almost never bother me anymore - when they do, I know I have a flare coming on.
Hope that helps - sorry you are suffering! :(
Mona,
I have osteoarthritis in some of my fingers and a few other joints. They certainly improved during the first two years with nabumetone and hydroxychloroquine. In the past few months I have had increased pain in my fingers and wrists, and, to a lesser degree in my feet.
The new joint pain appears to be an inflammatory arthritis. (As I am seronegative re: RA tests, and actually SS tests as well, I was put on a short course of prednisone. I had rapid relief from the pain, and that somehow indicated to her that it is inflammatory.) They are not calling it RA but specifically said that they are chalking it up to the Sj?gren's.
The treatment, however, seems to be the same:
- staying on the hydroxycholoroquine
- staying on the nabumetone, at least for now
- today I added methotrexate (I prefered this over Arava due to studies that the MTX can also treat an AI skin condition or two that I also have.)
T
Hi Mona,
Sorry to hear about your hand and wrist pain. That's where it all started for me about 6 years ago. The connection to AI Disease wasn't made until October, 2013. I saw an Orthopedic Doctor for the pain that started in my left wrist. I was told it was a tendon or cartilage tear. I have had to have cortisone shots about every six months. Then about three years ago, that horrendous pain started in my right thumb! Then in 2011 my left thumb. The only treatment I ever received was semi-annual (sometimes more often) cortisone shots. My right thumb is totally deformed now and I have lost about 75% of strength and muscle tone in my hands. I do have to say though that Naprosyn helped a lot, as did icing the throbbing hand, thumb or wrist. The cortisone shots were a MIRACLE!! Instant relief! Have you been to an Orthopedic Doctor or had X-rays or MRI of your hands? My hands have been much better the past few months. I'm sure the Prednisone and Plaquenil have helped. Good Luck to you and if you haven't seen an Orthopedic Doctor, maybe you should.
I bought crafters gloves and am finding they help reduce the pain, stiffness, and numbness that I get from carpal tunnel.
SJOGIRL: What are crafters gloves? That may help my hand pain. Sometimes I sleep with a heating pad on my hands and have tried tiger balm on my hands and wrist. Haven't figured anything out because I am still looking for a good Rheumy. Many many years ago a doctor said I had carpal tunnel. I think this stuff has been in me a very long time.
Thank you everyone for the great comments. I saw an orthopedic Doctor two weeks ago. He gave me shots of prednisone in my right hand which improved immediately. The left hand began to get better as well. Strangely, a few days ago, the pain came back with a vegence. The balls of my hands are blue and palms are swollen and burning. The xrays show no sign of carpal tunnel or RA. both the Rheumy and Orthopedics Docs seem to be at a loss and told me to take motrin.....very frustrating.....seems you all know this feeling!
Oh....and a note about the Crafters Gloves....I wore them one night while having intense pain and I woke up and couldn't feel my hands...they went completely numb. ....again, not sure why!
I don't know if anyone asked you but do you for example drink a lot of coffee/chocolate (both have caffeine) or eat stuff with a lot of sweeteners? (the horrid non natural kind)
Those things will make my hands ache for days in too big quantities, in fact aching right now because I was silly enough to have a non kcal energy beverage yesterday to try and stay awake longer which obviously contained both caffeine and sweeteners. ^_^;
That is a great question! I'm pretty careful with my diet...trying to be gluten free, eat mostly fruits and vegies. I do drink greet tea and limit sweets.
HOWEVER, I have 1-2 cups of coffee each day. Just cannot give it up.
Have to go back to my Rheumy tomorrow, my hands turn blue and are swollen. The balls over my thumbs are blue and look like varicose veins. It's a bit scary, so need to figure this out!
Sounds like you know a lot about diet affecting the way you feel...these affect your hands?
Well basically alcohol, caffeine, corn/maize/potato starch and artificial sweeteners go right on my hands. (think that's all of them not sure)
So if I have any of that in small amount I'll notice the next day that they feel weaker than usual and achy, if I have BIG amounts then they'll start aching from the fingers and through the wrists and up to the elbows, in the wrist area especially along the tendons and the lower thumb bit (if you see your thumb as a chicken drumstick) the meaty bit attached to your palm get's super sore and does not want to help grip things at all.
If you like coffee flavour you could try and at least go de-caf since that way you can avoid most of it but still get that "beverage of life" in the day.