And It's About Time There Was Some Support For Cushing's!
My diagnosis and bio is I currently have steroid induced Cushings. So I am not sure that I have entered a support group that is appropriate. Since age 6, I have had obesity, round face, difficulty losing weight. Have failed vertical banded gastroplasty in the mid 80's. I lost weight initially, but the moment I came off the liquids to solids, the weight started coming back on. Went on a Liquid fast diet, same thing, weight gain immediately after moving to solids.
Diagnosed with arthritis and fibromyalgia about 10 years ago and had received multiple steroid injections into joints over the years. A year or so ago, after a year of extreme job stress, I developed a mycoplasma infection of the lungs, progressing to severe blood infection and severe asthma. Hospitalized about 35 days last wwinter. With that event the diagnosis of immune deficiency was added. I get immune globulin infusions.
Over the Spring and Summer I had severe signs and symptoms of Adrenal insufficiency when coming off the steroids. Saw and endo who put me on Hydrocort to a maintenance dose. Just beginning to recover when mid October had re occurence of the mycoplasma and it's been downhill since then.
I was hospitalized in November to initiate a higher IV steroid regimen to try and gain control of the inflammation in my lungs. I am now on a third round of high steroids at home and looking at another potential hospitalization, to decrease inflammation and get the asthma under control. The symptoms of Cushings are major: buffalo hump, I have gained and inch of fat from my ear lobes to my chin; extreme gluteal and back muscle weakness, I have fallen twice in the last week due to loss of balance, my hair is becoming brittle and falling out again, etc.
My questions are for those of you who have suffered with the Cushings: how do you keep your glucose under control? is there any way to minimize the amount of weight gain? I am using some medications to help with the swelling. They seem to increase the "lousy" feel. I would be interested to know how some have you feel you successfully conquered some of these issues. how did you deal with people who make rude comments about your new "toad" face, puffy eyes?
I know if I am in the wrong place, someone will be kind and get me re-directed. Meanwhile, I appreciate any thoughts and encouragement you who have suffered with this syndrome may offer. Thank You
I have pretty good understanding of the pulmonary issues and my pulmonologist IS very concerned about the amount of steroids this situation is taking.