Just checking in. I started using this discussion group when I was first diagnosed 8 or 9 years ago. My mother also has Lupus, and this is a wonderful resource.
It's been awhile, but I had back surgery in March. The first few weeks I did fine. But, with docs okay and some restrictions like I went to visit my daughter, my grandson, and my son-in-law a marine, for 2 weeks. I had the greatest time, spent nearly every minute with my grandson who is now 17 months old. He and my daughter lived with us for 7 months, while Daddy was deployed.
Anyway, needless to say i wrecked my new back, but it was worth it. Had no pain while there, but after, I am having a lot of pain. i see surgeon soon and the x-ray will hopefully show no damage. It feels more like muscle pain.
But my Lupus is fairly quiet, I've been getting good sleep, and that always helps.
Hello, long time since I have posted here. If you remember me, you already know that my mom and I have Lupus. Very different symptoms, but still SLE.
She has the mouth ulcers and nose ulcers that never go away. They are large and all white. They recently did a biopsy and they are benign. One in her mouth, far back, is most painful. It was explained to her that it is near a bone and that is why it hurts so much.
I forgot how to look up old topics, so I have to ask, what is the best treatment? She takes plaquinel, and some gerd meds. Her doctor is not nearly as aggressive in her treatment of Lupus as mine.
Thank you Lisa, this info will be very helpful to my mom. I copied and pasted this info and just e-mailed it to her. I know she has not tried these meds, so it's great there might be some relief for her.
I check in occasionally on this board, it's not like the old days, when a question was posted, you would get several responses in the next hour or so. I miss that.
I will check in more often, when I have something that I really need expert advice on, I come here.
My Lupus is under control at this time, I know you have been having some problems. How are you doing today?
thanks again, your help means a lot to me, TinaView Thread
They are calling within two weeks to give me the exact date for surgery. Probably early Jan.
I am getting a new artificial spine disk, with a titanium plate in front with 4 screws and a titanium plate in back with 2 screws. I will have an incision in the front lower abdomen and also in lower back. The cushiony disk that should be between L5 and S1 is completely shot. Surgeon said it is "bone on bone".
The cause is from Lupus inflammation in other parts of my body, putting extra strain on tendons and ligaments in lower back. Not from an injury,as i first thought. (remember the dogs hurled me down the deck stairs?)
O.K. now about the Lupus blood disorders, after testing and retesting, we got down to the nitty gritty of the anti-phospholipid antibody syndrome. This term covers a lot of different disorders that all but one cause clots. I have the anti-cardiolipid, risk of clots. And the one and only phospholipid that causes excessive bleeding, the anti-prothrombin anti-body. They only know of a couple of cases where someone has both at the same time. My Hemo is going to be on hand during the surgery and is ordering a special medicine that will stop the bleeding, if that happens. Having extra blood on hand will NOT help, it takes a medicine that sounded like rhfactor something? something?. And I'll start the Lovenox shots and continue 325 mg. aspirin daily to avoid clots.
I was nervous, but after seeing the docs today, they have all bases covered, and they don't foresee any problems for me, just that I will feel much better in 3-4 months. I will be able to play with grandson Gabe, when they visit end of January, if I sit on floor and not twist, bend or lift.
Well, so much for this episode in my Lupus Saga.View Thread
Hang in there kenronkea, this is the most typical story of all Lupies. I know you want answers, have you tried other Rheumatologists. Find someone, who is thorough and dedicated to your case, I have much better luck with women doctors....no offense Doc Z, but in general they are less arrogant, admit if they simply don't know, more likely to refer you to other specialists. Keep trying until you have the answers that will bring a diagnosis and treatment. All the best to you.View Thread
High fiber, Low fat, no acidy foods, and exercise when you are well, even if it is only a short walk. No carbonated sodas.. I have been told all these things, and do my best, but continue to gain weight. I was always "too thin" before this disease. My doctors wouldn't have recognized me 10 years ago. But there is no special diet, except to eat healthy meals, grains and veggies and low acid dark fruit. Keep posting. This board is not as active as it once was, but I;ve been here for years, have learned a lot and hope some of the oldies and really knowledgeable ones come back to webmd. Yogurt with berries and granola is a great treat and also crab, tomatoe, gr. pepper with a little low fat mayo, all diced small and kept in fridge overnight, are two of my favorite meals. Eat more often, but smaller portions. Have healthy easy foods available at all times so you don't get overly hungry and lose control and overeat the wrong foods. Look forward to getting to know you.View Thread
oh you will have times of wellness. That's what get's us thru the pain, knowing it is temporary. But you will likely have recurring episodes without any forwarning. Continue to make plans and live life the best you can, and when your sick and have to cancel, you will find out who your real friends are. Stick with the compassionate ones, they don't need to understand, who does?? But have that support from the good people, and forget the others. And keep drama a stress to a minimum. Rest when you are ill, exercise lightly when well, it will help. And that pain you have with swelling, get cortisone shots before it gets too bad. I waited and ended up with a contracture that took months of therapy to straighten out my arm again.View Thread
I was told by a doctor that in women, a heart attack isn't as painful as the well known left arm stuff. For women it is more often a tightness and discomfort. For your own peace of mind, get it checked out quickly. All the best to you.View Thread
I would take a good guess that you also have severe sjogren's. I have broke a few teeth eathing oatmeal. Doctors put me on, Salagen for the severely driy mouth and eyes. Systane eye drops daily sometme Restasis and a steroid drop and Biotene toothpaste for dry mouth. Drink lots of water, and see your eye and dentist often, like every sic months. All the best to you. Oh, in winter I use a humidifier near my bed and oil body after shower. If Saliva glands are swollen and not functioning, the Salagen will help, but water intake is a must.View Thread