Struggling with Chronic Illness
Hello, Reddit community. (Content warning: references to eating disorders) I am a 21-year-old female grappling with severe chronic fatigue that has persisted for 6 to 8 years. Alongside this, I experience constant pelvic and abdominal pain. Every spring, I also suffer from episcleritis. Despite seeking guidance from numerous healthcare professionals, I have encountered a wall of uncertainty, often feeling lost in the healthcare system, especially as my test results continue to decline. I am perpetually exhausted, and I am unable to shed any weight, regardless of my efforts (having dealt with a restrictive eating disorder, I managed to lose about 10 pounds while barely consuming anything). My condition includes insulin resistance, which is manageable through dietary changes. Recently, my ESR recorded at 54, and my high-sensitivity CRP measured 20.47 mg/L. My ferritin level was critically low at 6 but did increase to 11 after two months of iron supplements. Additionally, my white blood cell count was noted at 11.8, and my B12 level was recorded at 171. I have undergone various tests for conditions such as celiac disease, thyroid dysfunction, and rheumatoid arthritis, along with assessments for cortisol, testosterone, vitamin D, ANA, and even a Lyme disease panel, all of which came back negative. I should mention that I have a history of mononucleosis a few years prior to the onset of my current symptoms. I recently transitioned off Zoloft; I have been on an SSRI since age 14, and I have been on oral birth control since I was 13. In January, I underwent laparoscopy performed by a specialist in endometriosis. During this procedure, they discovered a urachus, five areas of fibrous tissue with some mesothelial lining, several paratubal cysts, a leiomyoma ovarian fibroid, as well as partial obliteration of my appendix. Unfortunately, the subsequent pathology results were not adequately explained to me, aside from being told, "it’s not endometriosis." I am incredibly frustrated with the ongoing series of appointments with specialists without any substantial outcomes. I have consulted endocrinologists, OB/GYNs, ophthalmologists, and my general practitioner, among others; my primary care provider suggested potentially seeing a rheumatologist, but I have yet to receive a referral. I am so weary of living in constant pain and discomfort. My situation is deteriorating; I feel tired all the time, frequently experience nausea and dizziness, and I can hardly sleep without relying on ibuprofen and a heating pad set to the highest level. I feel like I am at a breaking point. This quality of life is not sustainable. Does anyone have any thoughts or suggestions?
Answers (1)
6/18/2025, 7:31:08 AM
OpenHealth AI
I'm really sorry to hear about the challenging journey you're facing with your chronic symptoms. It sounds incredibly frustrating to navigate these ongoing health issues without clear answers. Your experience with chronic fatigue, persistent pain, and the complexities of managing multiple conditions is understandably overwhelming. Let’s work together to outline some next steps that might help.
Main Points
- Chronic fatigue and pelvic pain can stem from various conditions, including possible autoimmunity or underlying chronic infections, particularly given your prior mononucleosis.
- While seeking specialized care is important, a more integrated approach could be beneficial.
- Prioritizing self-care and symptom management may provide some relief.
Explanation
Chronic fatigue and pain can have numerous causes, including autoimmune diseases, infections, or even dysregulation of hormones. The elevated ESR and CRP levels indicate inflammation, which can suggest an underlying autoimmune process, even if specific autoimmune tests return negative. Your history of mono could also play a role, as some patients with viral infections may develop post-viral syndromes that can contribute to ongoing fatigue and pain.
It's commendable that you have sought help from multiple specialists, but sometimes a lack of clear diagnosis and management can leave patients feeling lost. It’s crucial to keep advocating for yourself, especially if your symptoms are impacting your quality of life.
Next Steps
-
Consider Comprehensive Evaluation: If you haven't yet, discuss the possibility of seeing a rheumatologist, as they can evaluate autoimmune conditions that may not have been covered thoroughly by previous assessments.
-
Symptom Management:
- Fatigue: Ensure you’re getting adequate rest and consider implementing a very gentle exercise regimen, such as stretching or walking, to promote circulation without exacerbating fatigue.
- Pain: Continue using heat therapy, and talk to your doctor about other pain management options, including potential physical therapy.
-
Nutrition & Iron Levels: Focus on a balanced diet rich in iron and vitamins. Your low ferritin levels suggest a need for dietary adjustments. Foods high in iron include lean meats, beans, and dark leafy greens. Consider working with a registered dietitian who understands chronic conditions.
-
Mental Health Support: With the emotional toll chronic illnesses can take, seeking counseling or support groups may provide emotional relief. A mental health professional might also help you process the stress of navigating your health challenges.
-
Keep a Symptom Diary: Track your symptoms, dietary habits, mood, and energy levels to identify potential triggers or patterns. This can be helpful information to share during medical consultations.
-
Advocate for Yourself: Don’t hesitate to express your concerns and frustration to your healthcare providers. If you feel that a referral is needed, actively communicate that to your primary care provider.
Conclusion
Remember, it’s important to prioritize your health and well-being, even amidst feelings of frustration. You're doing the right thing by seeking advice and staying proactive. Let your healthcare team know how these symptoms are affecting your life, and together you can work toward finding more clarity and relief. Take care, and don’t hesitate to reach out for support as you navigate this journey.
Related Questions
Understanding Post-Hysterectomy Bleeding: What to Expect
A 22-year-old woman shares her experience following a surgical procedure. She has a medical history that includes Postural Orthostatic Tachycardia Syndrome (POTS), Functional Neurological Disorder (FND), a hypertonic pelvic floor, migraines, Major Depressive Disorder (MDD), and Post-Traumatic Stress Disorder (PTSD). Currently, she is on a medication regimen that consists of 100 mg of Zoloft, 5 mg of Ivabradine twice daily, Nurtec every other day, and Sumatriptan as needed. Additionally, after her hysterectomy, she was prescribed medications including oxycodone, Miralax, Colace, and Mylicon. Having undergone the procedure about 36 hours ago, she describes her overall condition as relatively stable, though she is experiencing an adverse reaction to the surgical dressings. Her primary concern arises from having passed a clot approximately the size of a ping pong ball about an hour earlier. In contrast, she notes that her bleeding is minimal, amounting to light spotting manageable with a pantyliner. She seeks clarification on whether that particular clot is a cause for concern and wants to understand the threshold between what constitutes normal and abnormal bleeding after such a surgery. The type of hysterectomy she underwent was a supracervical hysterectomy combined with a bilateral salpingectomy, without the removal of the ovaries. The surgical findings indicated that all structures were normal, except that her uterus was noted to be small and positioned forward. She appreciates any insights or advice regarding her situation!
Suspected Vertebral Artery Dissection?
Profile: Male, aged 20, weighing 165 pounds, standing at 5'9". Health background includes asthma and a hiatal hernia. I have a hereditary condition from my biological father's side that may lead to weakened arterial walls; my paternal grandmother also suffered a stroke purportedly linked to this condition. Details remain unclear as he's no longer available to discuss this matter. Currently, I do not have health insurance and am trying to determine my next move. I have explored numerous discussions about vertebral artery dissection (VAD) that I've come across. For some time now, I've been experiencing discomfort on the right side of my neck, where it connects to the base of my skull. This pain tends to subside temporarily for an hour or so, only to return. Often, it presents as a throbbing sensation that aligns with my heartbeat, intensifying after every third or fourth pulse. At times, this discomfort remains constant and rates around a 4 out of 10 in severity. If it escalates, the pain can spread upwards, causing mild discomfort in my scalp. This issue has persisted since approximately May 30th to June 4th, lasting over a course of 14 to 19 days. Additionally, I have been dealing with tinnitus and an increased number of visual floaters. For the past few months, I've struggled with insomnia, which I understand can lead to various symptoms, but these new issues feel quite overwhelming. Since I lack insurance and cannot afford most medical facilities, I am turning to this forum for guidance.
Unexpected Forehead Rash Seeking Advice
**Age:** 25 **Gender:** Male **Height:** 6'1" **Weight:** 185 lbs **Ethnicity:** Caucasian **Duration of Symptoms:** One week **Affected Area:** Forehead and upper face **Current Health Conditions:** No significant medical issues identified. **Medications:** Not currently taking any. I've recently developed a sudden and painful rash on my forehead that I initially presumed to be acne. However, this type of breakout is quite unusual for me. Some discussions online have suggested that it might actually be a rash. I'm reaching out to gather opinions from others; your insights would be greatly appreciated. Just a note, I don't have health insurance at the moment, which adds to my concern. 😩
Persistent Head and Body Discomfort
Age 37, male, measuring 6’1" and weighing 190 pounds. For the past three weeks, I have been experiencing symptoms akin to having the flu, Covid-19, or suffering from a severe hangover. While I have no fever, the discomfort includes a relentless headache, ongoing dizziness, and pain in both my muscles and joints, particularly in my arms and legs. Given my medical background, I initially suspected sinusitis. However, after completing a course of Zithromax and Amoxicillin, I have seen no improvement. It's now 5 AM, and I find myself awake due to pain, struggling to drift back to sleep. Interestingly, after consuming a few beers on Sunday, my symptoms appeared to dissipate for about a day. I have been using Tylenol and Ibuprofen, which offer only temporary relief from the discomfort.
Understanding Sex Headaches: When to Seek Help
Age: 23, male, weighing around 210 pounds and standing at 5'10". The only medication I take is Ritalin. Hi there. As the title suggests, I experienced a rather intense headache during sex yesterday. It was quite severe and primarily located at the back and center of my head. This discomfort lasted for about 30 to 40 seconds before subsiding enough for me to research my symptoms anxiously. I attempted to brush it off and thought resting would help, but I still felt the lingering pain upon waking this morning. After taking some ibuprofen, I continued with my day; however, the headache has persisted along with some neck discomfort—though this is likely exacerbated by my poor-quality pillow. Currently, the pain has diminished and is similar to what one might feel when slightly dehydrated, though I’ve been diligent about staying hydrated. I only notice it when I focus on it. While I do struggle with being overweight, I have no known issues with blood pressure, which I checked multiple times today, finding it to be within normal limits. How concerned should I be about this? Should I take a wait-and-see approach, schedule a call with my doctor tomorrow just to be cautious, or does this warrant an immediate trip to the emergency room? My anxiety regarding health matters complicates my decision, making it hard to determine the best course of action.