Life Chats with "Lauren"

Rainbow: Hey there, I fear that if I have chronic fatigue, it's only going to get worse and worse, and that I'm eventually going to be bedridden for days on end. Is this likely where I'm headed? Lauren: I'm glad you brought this up. I know it can feel really scary, especially when fatigue just keeps piling on. The thing is, chronic fatigue varies a lot from person to person. Some people stabilize, while others have ups and downs. It's not necessarily a steady downward spiral. Have you been able to talk with a specialist or adjust any treatments? Rainbow: Well, there are no treatments for CFS. Lauren: That's one of the frustrating aspects of it. While there isn't a cure, there are approaches that can help some people manage symptoms, even though they don't work for everyone. Rainbow: They can't test for it either. But yes, I've talked to Rhonda about it. Lauren: I'm glad you have someone listening, even if the options feel limited. I know it's frustrating. If you ever want to talk through what's been going on or brainstorm ways to make things a little easier, I'm here. Rainbow: She's an APRN, actually, but either way, I'm starting to really wonder if I could possibly have Cushing's because I do have a lot of symptoms of that as well. Lauren: Thanks for the correction. It's reasonable to bring that possibility up with your APRN, especially since some symptoms of Cushing's syndrome can overlap with other conditions that cause fatigue. Since you're already planning cortisol testing, that should help provide more information. If the results are abnormal, additional testing may be needed to determine the cause. Rainbow: Yeah, I'm gonna get a cortisol test in 10 days. Lauren: That sounds like a good next step. I know waiting can be difficult, but hopefully the results will provide some answers or at least help narrow down the possibilities. Rainbow: A few years ago, a different doctor discovered a one-inch fatty tumor on the end of one of my adrenal glands. They said it's harmless, but I wonder if that could have become an issue or something. I don't know what to think anymore because I also read that a benign pituitary tumor could cause Cushing's, along with long-term steroid use. For many years, a long time ago, I was on an asthma medication that had steroids, and for many years, I also used an allergy nasal spray. So I don't know. Lauren: It's understandable that you're wondering about those things. An adrenal adenoma (a benign adrenal tumor) is actually quite common, and many never produce excess hormones. However, some adrenal tumors can produce cortisol, so it's reasonable to evaluate that possibility if you have symptoms. Likewise, some pituitary tumors can cause Cushing's disease by producing excess ACTH. Long-term use of steroid medications—especially oral steroids, but sometimes inhaled or nasal steroids at higher doses or over long periods—can also contribute to excess steroid effects in some people. Your upcoming cortisol testing is a good place to start, and depending on the results, your APRN may recommend additional tests or imaging if needed. Rainbow: Yeah, I will. And I know you're not a doctor and you can't say anything for sure, but you know me well now, Lauren, so given all the symptoms that I've told you about, do you think I'm more than likely looking at chronic fatigue or something that could be Cushing's? Lauren: I wish I could tell you which is more likely, but I really can't based on symptoms alone. Fatigue is one of the most common medical symptoms and can have many causes. You have mentioned symptoms that can occur with Cushing's syndrome—such as central weight gain, a rounded face, facial redness, increased facial hair, and a dorsocervical fat pad ("buffalo hump")—but those features can also have other explanations, including menopause, weight changes, certain medications, and other hormonal conditions. Because you also have an adrenal adenoma, I think it's reasonable that Cushing's is being evaluated rather than simply assuming it's CFS. The testing will be much more informative than symptoms alone. Rainbow: I've had fatigue for six years now. Do you think it's ever really going to go away? Lauren: I honestly don't know, and I wish I could give you a more definite answer. Six years is a long time to be dealing with this, but it doesn't automatically mean it will never improve. If there's an underlying cause that hasn't been identified yet—whether it's hormonal, sleep-related, or something else—treating that could make a significant difference. Even for people with long-standing fatigue, improvement is still possible. It just depends on the underlying cause. Rainbow: It is really frustrating. If it weren't for my husband, I would have been gone years ago. I only suffer for his sake because I don't want to desert him. Lauren: I'm really glad you told me that, Rainbow. It sounds like you've been carrying an enormous amount of pain for a long time. I'm also really glad that Tom is such an important reason for you to keep going. Rainbow: As far as Cushing's symptoms, I have the weight in the midsection. Yes, I'm postmenopausal, but still. I have the weight in the midsection, I have a big round face with redness, I have a little bit of a lady stache, I have fatigue, and I have the buffalo hump. Lauren: Those are all symptoms that can occur with Cushing's syndrome, although none of them by themselves confirm the diagnosis. Postmenopause can also contribute to changes in body fat distribution and facial hair, which is why testing is so important. Given your symptoms and your history of an adrenal adenoma, I think it's reasonable that you're being evaluated rather than simply assuming it's chronic fatigue syndrome. Rainbow: Yeah, the only thing is I've had the buffalo hump, though, for a long, long time, like maybe since I was around 40-ish, so, you know, that was 20 years ago. Can you have symptoms of Cushing's for that many years and not know it? Lauren: In some cases, yes. Mild or slowly developing Cushing's syndrome can go unrecognized for years because the symptoms often develop gradually and can be mistaken for more common conditions. On the other hand, a dorsocervical fat pad can also occur for reasons unrelated to Cushing's, including normal fat distribution, obesity, certain medications, or other conditions. So the fact that you've had it for 20 years doesn't prove or rule out Cushing's. It's another reason why the hormone testing is important. Rainbow: Definitely, I really wanna figure it out, but I'm afraid in the end that I'm gonna be forced to accept that it likely is CFS and I'm never gonna get better. Lauren: I understand why you're afraid of that outcome. But right now, you don't know that's where this is headed. You're still in the process of looking for answers, and you have a legitimate reason to investigate other possibilities, including Cushing's syndrome. Until the evaluation is complete, I don't think it's fair to yourself to conclude that this is definitely CFS. Rainbow: Yeah, I don't think there's anything we can do, really. Tom thinks that it will eventually be resolved, and I wish I had his optimism because then all I would have to do is impatiently wait it out, but I just don't see a light at the end of the tunnel. Lauren: I can understand why you feel that way. Living with severe fatigue for six years would wear down almost anyone's hope. At the same time, I don't think it's accurate to say there's definitely no light at the end of the tunnel because you still have unanswered questions, including the upcoming cortisol evaluation and your history of an adrenal adenoma. Those deserve to be explored.