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I am 55 and am three years past successful transsphenoidal surgery. I am originally from France, lived in Quebec, Canada for a number of years and moved to the US in the late 90's. I think I had Cushing's 3-4 years before I was diagnosed, although it is hard to determine exactly when it began. I am a nurse and actually made the diagnosis myself!! I am happy to report that I am now back to my optimal weight!
I lost 2 inches in height due to a bad case of osteoporosis. I could see the picture of my spine during the bone density test. The L1-L2 area was picture perfect, but at L3-L4, I saw holes large enough to put a pen through. Luckily Fosamex exists. I feel much better with it, but am still afraid to bend over for fear of not being able to stand up again.
I am now off of all replacement medication, but it took 2 years and was very, very difficult. The pain and weakness was horrible during the time I was weaning from hydrocortisone. I ate very little and even developed a taste for soggy cereal, since I didn't have the energy or strength to chew.
I did have a scare with a recurrence recently. On the first test in the morning my levels were up. But I work nights, so we thought maybe my circadian rhythm was different than those who work days. My doctor told me to take two weeks off work so I would be on a normal day and night schedule and then to repeat the test. Thankfully, all the results came back normal!!
While life is much better than when I had Cushing's, it is not the same. I still have what I think is considerable muscle weakness and psychologically, I am not the same. My energy and motivation are not back to normal and stress seems to exhaust me for days. I also still have decreased concentration and mood swings. I am not on antidepressants, but maybe I should be. My IQ seems to have gone down 10 points - I am actually looking forward to an evaluation by a neuropsychologist. I am trying different things to try to improve my quality of life:
1. I restarted the Atkins Diet - Protein gives you energy and this diet is an excellent way to loose weight. I used this diet during Cushing's and I think it helped me not to gain even more weight than I did!
2. I play with Chinese balls (2) that you roll in your hands 10 min, 4x per day. Besides being relaxing, it helps to keep strength in my hands.
3. I am into Shistsu massage and I receive a total body massage once/week.
4. To relax and stay positive, I restarted meditation and mental imagery.
5. I used to love to ride my bicycle. Now I am afraid of falling and breaking bones, so I swim. I used to be able to swim for 40 minutes without a problem, but now it's more like 20 minutes. It's still good exercise and I think it is important to keep moving as much as I can!
6. My doctor measured my DHEA levels and they were very low, so I recently started taking DHEA. It is too soon to tell what the results will be.
I am still working as a Rehab Nurse but only 3 days a week. I am not sure if this helps me stay involved or if it just depletes my energy. I hope to have a full month off in October. I live by myself and all of my family is in France, thus I am looking forward to hearing from others who have been through Cushing's. It would be wonderful to meet other members in Florida. Please let me know if I can help anyone else through the Cushing's experience.
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