Topic of the discussion
Posted on 7/22/20 12:00 AM
How are you doing?
Let's talk about acromegaly and daily life!
How does acromegaly impact your daily life? Do any of the symptoms make it difficult to complete daily tasks? Have you had to change your schedules or routines or the way you do things? How do you handle it in the day-to-day?
Feel free to share your experiences and advice, we're all here to help one another!
Beginning of the discussion - 7/23/20How does acromegaly impact your daily life? https://www.carenity.us/forum/acromegaly/living-with-acromegaly/how-does-acromegaly-impact-your-daily-life-2249
Posted on 7/23/20 6:38 PM
@Courtney_J Hi, I think the thing that is really debilitating to me is the headaches. Sometimes they feel like my head is splitting open. When I feel one is coming on I know my day is over. It's had an impact on my work life I guess because I have to call in sick or leave early, which is clearly not appreciated. My doctor recently started me on some medication for it, but it takes a few weeks to kick in, so I'm excited for that to happen.
I guess also since my hands have gotten bigger, I've also been having carpal-tunnel like issues. It makes it really had to do things with my hands, so basically everything. I wear splints at night to keep my wrists straight and then during the day I try to not do too many repetitive tasks like typing, which is really hard to do when working.
Posted on 8/6/20 9:42 PM
I can certainly relate to how you are feeling. Today, I went to a jewelry store and was very surprised at how much thicker my fingers are now. I went from size 6 to 7 3/4 and my hands look so deformed that I just gave up on getting a ring.
I have been out of work for almost a year now. I just can't function properly, can’t focus.
Hoping to find a solution to this situation.
Posted on 8/7/20 4:52 PM
@Lirio15 Isn't it devastating? I used to never take my wedding and engagement rings off and I ended up having to get them cut off because they were cutting off circulation. I cried and cried. I know it's just a ring, but it means so much and not being able to wear it anymore is sad to me. I'm hoping to having surgery soon and that it'll help. What point are you at in your treatment?
Posted on 8/9/20 1:04 AM
Yes, Cora, it’s very devastating. Sometimes is not a matter of being superfluous but there are little thing that are very significant to us . And as women, is so hard to embrace those facial changes. I was just looking at pictures of myself from two years ago; the difference is unbelievable. Today, I a started having and awful pain on my finger joints , feels like having needles stuck on it.
I, unfortunately, haven't been diagnosed yet. My bloodworks are in the normal range but my body says otherwise. So, I am in a struggle point, very hopeless because i am getting worse as days go.
I am glad that you are going for surgery. I had talked to a few people that have had it done and have seen significant improvements in days.
Posted on 8/9/20 1:05 AM
The picture from 2020 was taken last Monday. I sent it to an endocrinologist and he says that I don't have acromegaly features. So, I am kind of confused now. Does anybody relate to changes similar to mine?
Posted on 8/11/20 1:13 AM
@Courtney_J Hi there! I’m new to this site but came across it when I typed in support groups for acromegaly. I was diagnosed with it December 2018. I’m in a whirlwind of emotion still to this day because I don’t have a grasp on it. With my doctors, I feel like we’re still guessing & still trying to find what works best. My acromegaly came from a tumor on my pituitary gland. I’ve had 2 surgeries to remove the tumor but it still remains in there to this day. With acromegaly, my face, body, hands, jaw & feet have all changed. I’ve gone up a full shoe size, 2 ring sizes, & my jaw is getting wider. I’ve also gained 75 pounds since I’ve been diagnosed. But I’m guessing that’s from the stress & depression. I just want to get this under control. It’s very frustrating.
Posted on 8/13/20 3:18 PM
@Lirio15 Ah I seemed to have missed the picture, but if you can see noticeable changes to your face then it sounds like acromegaly. Have you thought about getting a second opinion?
@PaigeT. Yes, I feel the same way! The medicines they've put me on haven't done anything so I'm hoping that I can get surgery because I've heard that for some people it is life-changing! My jaw, lips and nose have gotten bigger too. I hope that more research is being done and awareness is being raised in the medical community for this, there has got to be a better way to treat this!
Posted on 8/15/20 2:42 PM
Yes, medicine is not the first option when treating Acromegaly according to doctors. Usually, their first option is surgery and then, medicine if need it.
I hope you get your surgery soon because this condition certainly drains your energy, spirit, the whole you. And when untreated and undiagnosed, can become very frustrating and scary.
Surgery is the first step to hope.
Here are my pictures.
Posted on 8/15/20 3:11 PM
Paige, I know a girl who had to go for a third surgery. For the third one, she sought a different neurosurgeon, someone very skilled in that field. She says that it was the best surgery she’s had and is feeling way better.
This girl had a very advance Acromegaly. Her height is 6 feet something. But thanks to the grace of God and the good surgeon she is having a better quality of life.
So, in my opinion, the roller coaster here, is getting diagnosed and the proper treatment. If that is done in time and properly, there is hope to having a better quality of life.
Have a good weekend everyone ☀️