Tirupal, I was diagnosed with the Beast in 2000. I've been battling it for 16 years. Had 2 transsphenoidal surgeries (2001) and 2 years after the surgeries I had a Gamma Knife procedure (2003). My tumor was 2.5 x 2.5 cm in size. My IGF-1 level was just under 1400. The first 9 years I was on 6 shots daily of sandostatin, the lowest we got my IGF-1 level was 600 -750. In 2009, my Endo switched me to the Sandostatin LAR, that eventually lowered the IGF-1 level down in the 200's. Two years ago my Endo switched me to Somatuline, now my levels are steady in the 120 range. In 2014 I had my first hip replaced due to excessive bone growth that was causing displacement, a month later I had an Occipital Lobe Craniotomy to remove a 2.0 cm tumor that was encased by a Cavernous Malformation (ganglion mass of blood vessels).....all of which my Neurologist suspected was directly connected to the Beast. I've had 2 TIA episodes (mini strokes), have made 2 trips to ER for chest pains, which have been diagnosed to be muscle spasms pressing on the pericardial sac. Like you, I battled severe fatigue, coordination issues, short term memory loss, cognitive issues, migraines, mood swings along with the constant joint and muscle pains...........I still battle them.

I was 44 when I was diagnosed and that night my Endo described the Beast as a "life altering condition". In 2009, I had to retire from a career in Architecture. In 2013 I was awarded full and permanent disability.

An important key in dealing with this condition is learning to listen to your body and recognizing the signs. It's a life of adapting and adjusting to the realities of what this Beast does to our systems. My day now consist of a 20 minute (5 miles)ride on a recumbent bike every other day. The off days I do a routine of light weights, stretches and a Tai Chi routine for Beginners and Seniors. I eat more healthy and I follow up with my team of doctors regularly (blood work every 3 months, annual MRI's). I've learned to listen better to my body and when I feel the fatigue coming on I stop. I can work around the house (cleaning, yard work, renovating the house, etc., etc..) for about 2 hours before I have to take a couple hour break (usually including a nap). I rely heavily on a GPS device while driving as I can easily get lost even on routes that I'm very familiar with. I forget things easily so everything is written down in a journal or added to a digital recorder that is with me at all times. My studio is decorated with post-it notes to remind me of things I need to do or places I need to be.

The hardest part is the mental portions. The depression is always out there on the horizon, like a fog bank....sometimes it comes in with the tide, but it's always out there. Years ago someone told me something that has stuck with me....and since being diagnosed it took on a whole new meaning......."pain and heartache aren't options in life.....misery is a choice.". As a young man, I was a gymnast, I pole vaulted in college on a scholarship.....I was always active, in good health, so you can imagine the struggle dealing with this. Life's river has many forks in it.....this is the one I'm going down now and I choose not to be miserable. One good thing, I now have ample time to spend on my fine art work......this Beast may be a life altering condition, but, if we keep it controlled, it's not a life ending condition.....and I'll take that.

Lifespalette, Thank you so much for replying. It is inspiring to know that there are people like you out there fighting hard each day and stay so strong and impregnable. It gives me immense hope. I applaud you for such positivity.
And thanks for relating your struggle with that of mine, it gives great comfort. I can certainly learn a lot from you.
I have also started a bit of stretching, exercising, occasional badminton, and taking stairs at work as much as possible, hoping to increase my stamina. And with a bit of change in my food habits lately, I guess I can adapt.
I'll keep trying to learn more, and, like you do, I'll start listening to my body and stay motivated.
Thank you.
-Tirupal

Tirupal - With all my heart I can so relate to your story. The fatigue, the mental fogginess and the sense that no one really understands how you feel because you may look OK on the outside. I underwent surgery 2 years ago. Although my IGF1 levels initially fell, within months they started to climb and the fatigue was dragging me down. I found I was withdrawing from others, I had difficulty with concentration and the challenge of my job was overwhelming. When the surgeon reviewed the MRI the remanent of the adenoma could not be removed safely. While waiting for radiation treatment, I was started on Somatuline injections and cabergoline. My IGF1 levels dropped but I started with migraines for the first time in my life. In December 2015 I underwent 5 weeks of radiation therapy and continued with Somatuline injections and cabergoline. The headaches continued and as Lifespalette mentioned, the fog bank of depression hit me - the first encounter of my life. I

....have recently started on pegvisomant injections ( to replace somatuline) that will hopefully help with the chronic headaches. I have also noticed some thinning hair, dry skin and wow.... the memory issues --- thank goodness for post-it notes and the calendar/alarm on my phone.
This has been quite a journey and I am still learning each day. You are absolutely correct - try to keep as active as you can: physically, mentally and emotionally. Listen to what your body is telling you and please advocate for yourself with your medical team.

I'm sorry to hear how difficult it is for you.

I'm not sure if this helps but here we go.

I've been in remission of acromegaly since surgery seven years ago. I've been feeling fine. However, in a chance blood test I was found to be quite deficient in vitamin B12.

Vitamin. B12 is responsible for maintaining energy levels in the body, and a sustained deficiency of it is life threatening.

Apparently.

I now take high dose supplements (drops under the tongue), and eat foods high in it now and again. My levels are back in the normal range.

Considering that I have been in remission of acromegaly for so many years, and yet I was deficient in something that provides the feeling of 'energy' without knowing it is potentially important.

It could be worth a blood test for you to find out.

Trys
acromegaly.wordpress.com

Thank you Zippy62, and Trys. It means a lot to me that you can relate to what I am going through. It gets very hard at times to muster the strength, physical and mental, required to deal with even small things.
But, I have followed what I believed might help me, keeping myself as busy as possible, as much as my mind and body can take. With work, hobbies like music, photography, and reading, a bit of Badminton once in a while.
It was really hard sometimes though, and that's when I tried to take a break.
I followed an ample diet, and surrounded myself, for a change, with people who don't know my condition. So, I was being treated normally by them; which was actually helpful, in the sense that I have adapted to this lifestyle now and slowly getting used to all this
I still have the mood swings, depression at times, occasional fatigue which requires some medication, but my hobbies and some time with friends help quite a lot to keep me going( also mobile reminders, post-it notes to aid memory, and some sitcoms for relaxation.) I have even started going to gym a couple of months ago, and that does help retain my stamina.
I get a little afraid, sometimes, because I felt a little hyperactive before my acromegaly symptoms started, and I can't help but to think it might probably return, but that might just be me being silly and paranoid.
Anyway, I went in for a check up and blood test today, and I hope for good results.
Trys, I will try a B12 test for sure, that is a helpful suggestion. I am a vegetarian, and I have taken some B12 supplements for a while long ago, so I believe checking that would definitely help.

At 33 I am on Disability from my Workplace. Its been six years since I have had my macroademona, and five years since the radiation. I am several courses already into my second degree...

I have had so many depressions in and out having to learn to deal with being such a young man, the start of his career in the government, and then having it taken away from me. As much as I know, I have to conserve my energy and pay attention to my doctors.

My life now seems like an endless wait room of appointments, and blister packs of medications and replacement hormones.

I love my education and 'working' towards something. I crave that aspects from work, having completing reports, having being graded and affirmed on the reports I now complete for my university classes.

I love animals, work on my house, and have taken up road biking. It is so nice to be able to be here and be amongst friends who understand all we endure and live through. Blessings! :0)