I have been going back and forth on whether to add a bio here because I don’t yet have a diagnosis. Also, it is really difficult to believe in myself sometimes and occasionally I feel relatively good. Some members of my family don’t support or believe me, but my husband is incredibly supportive and has been with me since my symptoms first started. My sister and my dad have both said to me that they don’t think anything is wrong with me and either implied of outright said that I am just depressed. They keep pushing me to continue with school even though I am taking two classes right now and can barely keep up with them at this point. I graduated from college a few years ago in biology and really would like to go on but don’t really feel like it is possible since I was barely able to get the degree in the end due to my energy levels (mental and physical). At this point I am going to L.A. to visit Dr. F next Tuesday so I am hoping that I will be getting a diagnosis and that something good will come out of this.
I think that my symptoms started as a sophomore in high school. I noticed that I was always tired for some reason and couldn’t seem to “wake up” mentally a lot of the time. I also developed cluster migraines that were particularly hideous. This is also when I noticed that I had a buffalo hump below my neck which I assumed was caused from a fall on my head when I was seven years old. The logic here doesn’t really make sense since I only developed neck and shoulder problems and pain in high school with no symptoms beforehand. I had chiropractic care for years for a stretched ligament in my neck that could never seem to heal. At this time I was very thin (5’8” and 140lbs) so there was no reason that I should have had a fatty lump at the base of my neck. I also had stretch marks on my sides at this weight. I have since gained around 90lbs (about 120 if you count some weight lost over the years due to drastic measures) and I am now 25 years old. There are a ton of stretch marks now all over my body from my knees to my elbows.
I really don’t have an explanation for the weight gain since I have never eaten much. Over the years I kept assuming that I was going to start losing weight because I kept making changes that should have led to weight loss. When I talked to anyone about it the problem was always me and what more I could be doing relating to something they randomly read about weight loss. There was always an explanation for why it wasn’t happening and why I needed to just try harder. I have continued to exercise throughout most of my “illness” either intensively (beachbody insanity several times, running daily) or light (walking or yoga). The intense times are unsustainable for me and it is incredibly hard to get dressed or take a shower let alone do intense physical activity. Nevertheless, I try to run or walk a little every day. In my diet I have made considerable changes such as becoming a vegetarian, vegan, going on juice fasts of vegetable juice for weeks, and just severe calorie limitations. Now I just stay under 2000 calories a day. Frequently I don’t eat very much because I don’t have the energy to make anything. Some people on here talked of acquaintances not recognizing them- I have the same thing. I felt ugly on my wedding because of my weight and have noticed that people are not as kind to the heavier me.
Whenever I talked about having low energy and feeling down the answer was to go to a counselor and that I was depressed. Counseling throughout college was to no effect. I honestly don’t think that I am depressed. I feel happy much of the time, but I’m just very tired and foggy and it is incredibly easy to feel down because of this.
My symptoms and the development of new ones have gotten much worse over the years. During college I had to take a semester off and towards the end I felt like there was no way to keep up with my class load even though I pretty much studied all day long. My memory is terrible and any classes that required memorization were impossible. I developed low grade fevers that continued off and on during the day for at least three months. I sought medical treatment and was tested for HIV, lyme, lupus, hypothyroidism, etc., but the cause never became apparent and I think my doctor lost interest in trying to figure out what it was. My doctor said I probably had PCOS because my testosterone was at the high side of normal, and an infectious disease doctor said I was just depressed. I was too tired to fight for myself and I thought maybe the stress and work of school was getting to me and maybe I really was just depressed. I thought that the weight, the brain fog, the aches, and the tiredness would go away once I removed myself from a stressful situation-it didn’t and has since gotten worse.
I just had a cortisol saliva test done that I ordered from ZRT labs and it indicated high cortisol, but it wasn’t that high and was lowered in the evening. I don’t really know what this means since I thought cortisol was supposed to remain high at night if you have Cushing’s, but I guess I will see what the doctor thinks next week. I have so many of the symptoms and I don’t know what else to do if I don’t end up having Cushing’s. Some other symptoms that I have experienced or that are persistent include: eczema on my fingers, round face, fat neck, sore joints (hands, feet, ankles, hips, shoulders, back) and muscles, excessive sweating, high blood pressure readings, becoming more awake at night and having trouble falling asleep, hip, ankle and foot pain, very dry hair and loss, trouble climbing stairs and descending due to weakness, lower back pain and more neck and shoulder pain (my hump is bigger), blood pounding in ears after little activity, blotchy arms and cheeks, acne on my chin, hirstruism, feeling swollen and uncomfortable, body stiffness, spinal cyst, lightheaded, shaky and clumsy, feeling hot (maybe hot flashes), long recovery from colds and chronic sinus infections, long recovery for injuries, arms and legs fall asleep easily, menstruation date fluctuates constantly, trouble giving blood, nausea and stomach problems, anxiety, twice a bump on the side of my cornea that was inflamed and I could visually see and feel, and a few instances where I had abdominal pain so bad that I couldn’t move. As far as easy bruising goes- I never know why I have bruises but I don’t get them often. I do have some other weird things with my skin such as having “sleep” marks from very short term positions that will not go away for a long time. Also, easy breaking of skin… I once used an electric massager on my back and didn’t realize until later that it had literally mauled me. I had horrible red and circular scratches and (now) a large scarred area. Other times I have had scratches so minor that they barely broke the skin, but I still have a scar…
Being sick all the time is a very humbling experience and at times it can be way too humbling to the point where I feel worthless. I hope there is more understanding and love for people experiencing pain on a daily basis since it seems to be much more common every day. It has been really beautiful to see on this forum the support that parents are giving to their children with Cushing’s and support from doctors and other family members. I don’t know if I would have believed I could have this if not for your stories and your personal struggles to get treatment. The more I read (scientific articles and medical information and bios) the more I recognized that what I was feeling all these years was real and could possibly get better. Thank you for reading my story.