Hi, here to ask a question. So overall I feel like my lupus has been getting under control. The only thing I can't seem to shake is pain in my hands. It is seriously driving me over the edge. Simple daily tasks seem so difficult to perform. I feel like I'm losing my ability to do anything extra with my hands. Saturday did some yard work that afternoon I could hardly move my hands. Between my thumb and index finger on my right hand was bruised I didn't whack it on anything bruised and hard as rock. The muscle was completely hard. My knuckles swell, forget about lifting anything heavy. I also seem to be feeling what I think is bone pain in my wrists. That bone that sticks out on your wrist carrying a bag of money at work feels like my bones are gonna break. While my knuckles are not swollen a 100% of the time they still hurt 100% of the time. Every visit with my rheumy whom I do like she checks for swollen knuckles if they are not swollen she dismisses it. Every visit I tell her nothing has changed as far as my hands go. At this point I feel like they are getting worse. How do I make her understand this. Just driving my car turning the steering wheel is hurting my bones. How do you all handle this? I love to decorate cakes and I'm really good at it but at this point seems as though I won't be doing it much. If I push I pay you all know the story. What do I ask her for she has never offered any sort of pain meds I've never asked. Saturday I took my husbands pain pills he had from a toe surgery a while back. I've never had scans done on my hands other various body parts. Is it common for lupus patience to get scans on ones hands. I do have carpel tunnel in both hands but I really don't think the things I'm experiencing have to do with carpel tunnel. What do you all think of this? Thanks for reading.
The doctor gave me a suggestion, that I will pass on. But first you should talk to your doctor about this. Mine suggested wearing a wrist brace at night while I sleep. It helped me. But check with your doctor it could be a sign of something more serious. There was a video at my rheumy's office that showed how we just chalk things up to Lupus and don't talk to the drs about them. It said we need to tell them things so they can help us.
I had the same issues quite some time ago and was also told to wear a wristband. However, I had to wear mine day and night!
Please do speak with your doctor and let us know how you are doing.
Peace and Blessings
Look For The Good and Praise It!
How's the pain, did you call the doctor?
Hi tomcatsgirl - my lupus was diagnosed because of my hands. My thumbs stopped working so I took it upon myself to go to a neurologist. They did horrible painful tests with needles, ect, turns out, I don't even have carpal tunnel -which I thought I had for years. All their tests came back normal, except my ANA came back positive and I was shuffled off to a rheumy.
What I've figured out with my hands is, if I don't use them at all the pain is dramatically lessened. If I use them lightly (cooking, but no cleaning or crafts) the pain is bearable. If I must push through and use my hands, they are useless for days afterwards and the pain is terrible. Steroids help. It allows me to get through the light days easier, it doesn't stop the bad days, but it does lessen the pain to start with and that helps. Pain pills do help. They block the pain, and that allows me to do more and get through the tough days pain free - but the payment from those days are worse. Because the pain pills allow me to use my hands without the normal pain to stop me, I over do it, and it just makes the re-coop time worse.
I have a couple types of braces, and compression gloves... Nothing helps. I don't shake hands anymore, or do dishes, or open can food or water bottles. I don't cut my own food or open doors anymore. The more I don't use my hands the easier my hands can do things like wash my hair. I have a stick shift so driving doubly sucks for me. I understand your pain and I sure wish I knew a trick to make it better. I'm in the same boat with you regarding bringing this to the docs attention. At my Rheumy they test my grip strength, and when that's fine they move on. On multiple occasions I have explained how it hurts and where, somedays I feel like the doc listened others I feel dismissed. Keep trying, and hopefully you'll stumble on something that works and you can come back and share it with us!
As I read this thread, it takes everything in me not to break down in tears. When i first started to notice something wasn't right, it presented with my hands and hips first. I should probably let you know I am only going to be 28 in Aug and this started when i was 24. I have had so many shots in my hip due to doctors telling me I have bursitis that i finally gave up. They quit working and I got sick of explaining it to each doctor. My hands, is a whole different story. They hurt 24/7. Some days are better than others. I wake up with hurting hands and go to bed with hurting hands. Sometime I even wake up in the middle of the night with painful hands. Ive been able to deal with everything from the migraines to the GI but one thing ill never get use to is the painful hands. Im so glad to read this thread and see that I'm not alone. I haven't been diagnosed with lupus yet, although I did have a positive ANA test back in march. After testing positive I asked the doctor to investigate further and his response was " it takes to long so Id rather not". After hearing that and living in Cold gloomy Oregon I decided to move to Arizona. I see a new doc tomorrow and hope he will run the appropriate test to see what exactly is going on, if not lupus.
Early on in my diagnosis,it was my hands that eventually lead me to the ER. They hurt so bad,I would cry and think that I should just cut them off. I would go thru ice packs like crazy because my hands were so hot and inflamed. The saddest part is that I am a hair stylist and I couldn't work. I would think they were getting better so I would go to work,then later that night I would end up getting admitted into the hospital for a few days of steroids. I don't know where in Az you live but there are some good doctors in Phoenix. I live in Prescott but I see a rhuemy in Phoenix named Dr.Trent Smith. He is great!
I live in prescott as well shanna. Thats crazy. I am actually seeing Dr colella at the health center. Im new here and no one had appts anytime soon so i went to him and i am so glad i did. He is amazing. I was wanting to get active in the community to keep my mind off stuff. any suggestions? Im down in quail wood so just about any area around us will do. Also when i came out here to check it out in feb and i moved here in may thats when my problems started to flare up really bad. does the elevation cause issues for you?
I think a change in elevation might flare things up,I've lived here a long time ,but when I travel to other places I notice it. Is the doctor you found in the valley? I know where Qualwood is, I live in Prescott Valley. What a small world. I own a small salon in Prescott Valley called Perfect Image. If you ever want to talk,hit me up,maybe we could be our own support group over coffee or something.
Well it's been a few months since this post thanks to everyone for sharing your stories. It sure helps to know I'm not the only one that feels like cutting off my hands lol. Not much has changed except the weather and that has helped the tingling and numbness but fall is around the corner along with that comes cooler weather and the joys my body gives me in the cold is not something I'm looking forward to. So I asked for something other then Tylenol for my pain she thought it was a bad idea. Okay. I've never asked for anything I'm not a drug seeker. She mentioned scans of my hands and then said wait we haven't done those yet. Nope I said and she moved on. I had an one episode last week lasted about two hours. Both my hands from the wrist down major pins and needles asleep feeling. Running my hands under warm water usually helps this time it did not. Weird thing is I didn't feel cold however we had a dramatic weather changes for a few days. The pain is the same over use and I hurt. Oh I was given braces that I never wear which I should but they rub right along the knuckle where a lot of my pain is and it feels worse. I'm sure they would help the wrist.