Am new to this site. Just wondering if anyone else has any good suggestions on how to deal with the pain and shortness of breath associated with lupus. For me these are the worst symptoms. I have dealt with the extreme weight loss (from 205 to 131lbs in 3-4 months), skin rashes, sun sensitivity, pain from head to toe every day, extreme night sweats, muscle wasting (atrophy), nerve damage, tingling in the feet, brain fog, protein in the urine (1478 was the total amount), high ana result (1:10520), now have eye trouble because of the plaquenil I took for a total of 12 days. I walk with a cane most of the time because of the muscle wasting and nerve damage primarily felt from the waist down.
I have done the medicine cocktails: plaquenil (double-vision), imuran (stomach ploblems), procardia & tramadol (rashes-upper body), sulfa & iodine (allergic reaction), lidocaine patches for pain (severe rash on upper body) and quite a few other meds and so I got to the place where I really don't want to try anything else. I was however able to take CellCept which was a relief to my PC because everything he tried caused me severe allergic reactions.
The shortness of breath was thought to be because of pneumonia that I kept having, then pleurisy and shrinking lung disease and then they said I had asthma and bronchitis, which my PC said was not true and finally I had to go and have a ventilation profusion test done (i think that's what u call it) and it showed that I had a very serious respiratory infection that had been there come to find out for well over 1 1/2 years. My PC put me on antibiotics and told me to do something so simple and yet so effective for the chest pain when I breathe. Apply flex-all to my chest at night and when needed during the day for what turned out not to be pleurisy but a muskuloskeletal problem. Since I began with the flexall, my chest feels so much better.
The sob causes me walk slow so I don't hyperventilate and I can't do any lifting because it takes my breath away.
These by far are the worst symptoms for me. Does any one else have these symptoms and what advice do you have--every little bit helps.
Glad to be a part of a community of people who know exactly what I am going through. ops: