I have been living with Lupus SLE, Sjogrens , Barretts, hypo active thyroid and severe allergies for over 25 years. I have never joined a forum because I have always been so busy at trying to run my business. I am getting desperate for any kind of input on this disease for it has begun to take a toll the last 2 years. My personality and drive has pushed me for 25 years. However, I am 59 and feel like I am now losing the battle.
For years due to the severe SLE Lupus, I was plagued by skin ulcers, bleeding ears from the ulcers I would receive from the radiation from my cell phone. I was a hiker, kayaker, dancer and long distance bicyclist while operating a business and raising 3 girls. I was diagnosed with Sjogrens after the Lupus.
When I was diagnosed, the fact that I would almost never sweat, would get severely overheated while doing outdoor activities in addition to terrible constant thirst finally made sense. I was actually part of a study through Dr. Victoria Werth at University of PA hospital.
I would not take the plaquenil and the compound quincrine for years until I moved South. I knew that moving to an area with a hotter sun and bad pollen would make everything worse. Taking the plaquenil and quincrine provided me the ability to go outside without 3 layers of clothing and a hat for the first time in 20 years.
Can you believe I am an Appraiser? "Outdoors" with the Lupus and Sjogrens when during the day or when the temp went above 65 was not a good thing for me. I cannot go more than 5 minutes of walking in the warm temperature now without feeling I am going to pass out from heat, thirst and being out of breath. I have been taking care of 2 grandchildren due to my daughter being ill. It will be 4 years in June.
I still work and the fatigue is driving me crazy. Three years ago, the thyroid got out of control (still out of control) and I gained 30-35 pounds (was always thin), glands started swelling in my jaw and becoming severely painful due to the issues with the salivary glands. The ENT tells me that he can inject Botox to ease the pain from the salivary glands. My eyes have now decided to dry out and I have developed a constant cough that I thought was a result of living here with severe allergies. Antihistamines and Sjogrens do not work well together.
I have swollen glands in my upper back, armpits and neck. I am due to get another scope on my esophagus on the 1st. I have developed in the last 6 months carpal tunnel in both hands which are requiring surgery. My breasts hurt so bad, I wish I could get them removed. My Rheumatogist is now at Vanderbilt; Dr. Huston. (2 hours each way). My Internist can't seem to see the whole picture. I know from what I read that everything is related.
I complained last year to my Internist that these glands are hurting etc. I have gotten several mammograms due to the pain. Oh, I am now plagued with gout (not controlled), also. I take synthyroid, 2 nexiums a day, 2 plaquenils a day along with quincrine, allergy medicine, inhalers, allopurinol(?), gabapentin and assorted vitamins. I am desperate for relief from pain medication if I can find someone to provide it. I don't know what else to do.
I wish I could move because I know my allergies would be lessened which would ease the use of so many allergy medicines that dries one out even more. Moving to a different environment would probably lessen the drag on my body but of course my husband's job position is based here and I transferred my business to TN when I relocated 8 years ago. I am actually too tired to even consider packing and moving.
I really don't know what more one can do. Where is the remission? How does anyone get to remission? What more medicines can ease the pain, cough, swollen glands, exhaustion, dryness. Thank you all for listening to me. You can see I am frustrated. It is just so good to find others that are dealing with some of the same issues.
If I were in an area with relatively close to a Doctor who is currently studying Sjorgrens, I would be on his door step. I feel that I cannot get a Doctor to really care enough to look at everything, together.
*Edited to provide spacing*
Dearest Prijon,
Welcome welcome welcome. We are here to listen, to give suggestions and only suggestions (we are all so different,as you know), and support.
You have so much to handle, and it is amazing how much you've done, in spite of it all! As we get a bit older, sometimes the burden of illness makes us more and more exhausted, and now you are caring for grandchildren and your daughter is ill. This is very very tiring, I know because I have done the same thing. Children are so full of energy and when they are young they are likely to fling themselves at you without warning!
I, too, live in the South, and have since most of the list of my 'conditions' (see below the post) began. At this point, my Immune System Disorder has attacked both my Peripheral Nerves and Small Fiber Nerves, as well as my moisture producing glands, my bladder, and so on.
Our tendons and ligaments are also weakened, and I have carpal tunnel in both hands. i had surgery on my left hand (I'm left handed) and it was very simple (compared to other surgeries I have had) and worked perfectly. Both my menisci in my knees have torn, as well.
Have you ever tried a short course of prednisone or medrol, to break your constant state of flare?
I do not think most Internists can see the entire picture. And you will be lucky to find a Rheumatologist who does. It sounds like you have found that at Vanderbilt. I have a friend with Rheumatoid Arthritis and Barretts, and she finds great help with a mixture of plaquenil, methotrexate, prednisone and a biological (perhaps Humira, I don't know).
We each have to find our own way through this, and you are certainly making every effort, and have so much to deal with. It is best to prioritize your concern about your conditions, so that they are ranked in order of importance to your health and your quality of life.
It would help us if you made paragraphs with short sentences and most of us have trouble reading 'dense prose'.
I'm sure others will add to this, Prijon.
Hugs, Elaine
Have you tried eliminating wheat/gluten? I have read that there is a high percentage of Sjogren's patients that are gluten sensitive. It is not a cure, just something that might help in some small way. The only way I am able to function is to not do certain things. It is hard and disappointing, but no way around it for me :(
Welcome to this forum. You came to the right place as there are so many who have suffered and are suffering as you are. It has been noted before, and you are living proof, that people with autoimmune disease are a willful bunch who persevere and succeed beyond belief in spite of so many health issues.
I am much older than you and have managed to do a lot of things too, but as we get older it is harder for us to bounce back. You have so many things on your plate that to tell you to slow down is something that would be very hard for you to do. It does seem that your Sjogrens is acting up as evidenced by the carpal tunnel. I would advise you to have the worst wrist down first as you will be slowed down even with the one being done and it takes time to heal. Do not put it off as the longer you wait the more permanent damage you can have. I had both of mine done at separate times.
You may need to find a new GP or internist to help you organize your care and sort things out. This is hard to do, I know but is worth it. It sound like you could be getting to the point of having stronger medication as in the form of immune suppressants. The problem is, the amount of activity you do probably is contributing to some of your symptoms. Our bodies can't take much stress without our autoimmune diseases being ramped up. Slowing down is going to really be hard for you after all this activity.
My advice would be to get the carpal tunnel surgeries done before adding the stronger meds. You will need to have a good conversation with your rheumy. Also, it might be a good move to find an immunologist who can help treat the autoimmune and the allergies that you have. These conditions are closely intertwined.
Have you seen an ophthalmologist to get you started on Restasis for your dry eyes. Prednisone would probably help some also but shouldn't be depended on for the one and only treatment for pain. If you suffer from chronic pain it sometimes helps to see a pain control clinic.
All your symptoms are caused by your ramped up immune system that is increasing production of antibodies as it tries to kill your body off, literally. This ramping up also is probably some of the cause of the intense fatigue we have. It is so stressful for our bodies to run on high all the time. Hope you can take some "quiet times" and give your body a chance to rest more. Ask questions and read a lot of the threads as there is a lot of good info here. Good luck. Irish