Hi all, congratulations on the election of your new president, wishing all my US pals brighter days under this new leadership.
Went and had a sniff test , floroscopy yesterday as my diaphragm is not positioned correctly, seems it's not paralyzed but it stll is not positioned right. Kind of was hoping a paralysis was the reason for my stomach issues, haven't seen the respirologist again yet of coarse but the dr doing the test said it was moving.....
My question to you today is do you jurt allot? I hurt all the time and wonder if that's normal with sjs. My spine and neck just kill me and I end up with those back of the neck screaming headaches that also inflame my jaw, eyes and face. I have been looking for some support from my drs about it but they all seem to be in a fog about it. i am sent from one specialist to another. All they ever find is some new phenomenon like my diaphragm being in the wrong position and that explains nothing, and then they just forget the compalint of pain like they are happy they foiund something but it's ok??? ??? Hello what about the pain! That's what I came to see you about.... >:( Do you guys have the pain and stiffness that keeps you from doing? It breeds fatigue too all I want is to sleep it away, but I can't. Is this normal or am I wierd? Thanks Sandra
Sandra,
I've just had a bone scan because of UNRELENTING and extreme foot pain (all my toes hurt like the dickens all the time)! The results showed nothing is wrong in my feet.
Apparently Sjogren's can cause pretty bad joint and muscle pain but luckily not joint damage like Rheumatoid Arthritis does.
I think because you have stiffness along with the pain, you should be checked for Arthritis in that area. Have they done that?
Honey, I'm sorry for this debilitating situation. I'm sure it is more than a little difficult to function with that kind of pain.
Janna
Sandra,
I go through each day like this, but I have found if I get up take my meds and move around, it will subside enough. I won't say I'm not tempted to crawl back in bed, but for me the pain is what woke me up.
I would say that your rheumy should be the one to address your pain. It sounds very much like what I contend with and it's osteoarthritis. Most of the time I feel like, if I could just bend forward far enough and tuck my head under the pain would quit.
The one thing besides my Tramadol pain pills that really helps me is heat and massage. Especially in the area of my neck. My family thinks my rice collar is part of my anatomy now. :D I found one of those "Bed Buddy" collars at Bed, Bath & Beyond that lays nice and flat around your neck and hooks with velco. It's wonderful. I heat it, put around my neck and I'm set to do anything I need to do. When it cools down, I make a pass by the microwave, heat it back up, put it back on, and go.
If my neck is warm, my back will be okay for a while.
I hope you find something to relieve this pain you are having. It can really be debilitating and depressing.
Hugs, Pooh
Sandra
I'm so sorry to hear that you're in so much pain. I've been in almost constant pain for many years and it's hard to describe the effect it has on your spirit, even if you try to ride above it. I tried to get by with positive attitude, warm baths, aromatherapy, acupuncture and eating as healthily as I could. I didn't have a positive attitude towards meds!
I've learned my lesson and over the past year or so I've built up a combination of things that work for me. I'm still in pain most of the time, and sometimes it takes my breath away. Sometimes it's so ridiculously bad I laugh out loud! The pain med that made the biggest difference to me is Zomorph, which my GP had to persuade me to take because I didn't like the idea of it at all. I also take Diclofenac, paracetemol, low dose nortriptyline (plus prednisolone and now Plaquenil and CellCept). I tried out different meds on the way, and built doses up slowly. I don't want/expect to be pain free but just to function. A TENS machine is on hand for times when my legs play up.
You ask whether the pain is normal or whether we are weird. Well, we probably are and it probably isn't but I'm not sure that matters! Knowing that I'm not alone with this makes a huge difference, and the love and care of people on this site helps with that more than they can possibly ever know.
Chana x
Hi Sandra
I'm another one with chronic foot pain and, like Pooh, it's down to osteo-arthritis. My pain is manageable at the moment, with a combinationof Celebrex, amitrtiptyline and paracetamol. I hope you get some ease from your pain soon.
Kathyx
Hi Sandra :)
I have a lot of shoulder and neck pain and get pain that goes up my neck and makes the bottom of the back of my skull hurt and makes the skin there tender to touch. Sometimes it flares up worse than others and I can't seem to get a doc to take a lot of notice of it. It's very frustrating. I was prescribed a low dose of Amitripyline for the shooting pains up the back of my head and I think it's helped a bit but no one has actually examined my neck or shoulders to see if there is any obvious caus other than general connective tissue inflammation.
I assume it must be par for the course or maybe they'd be a tad more concerned.
take care - Scottie :)