OpenHealth Q&A

Persistent Muscle Pain for Months – Seeking Insights

Greetings, I find myself in a challenging situation and need to share my experiences. After consulting numerous healthcare professionals, I've yet to uncover the cause of my ongoing anguish. I'm enduring significant pain and am eager for any guidance or explanations that could shed light on my condition. I am a 27-year-old female, standing at 5 feet 6 inches and weighing around 220 pounds. I vape every day and consume alcohol about once a month, while I do not use marijuana. For the past seven months, I have been grappling with debilitating pain throughout my body. Official Diagnoses: Polycystic Ovary Syndrome (PCOS), Hypermobility, Pilonidal disease (experienced three flare-ups this year). For the last seven months, it feels as though my body is waging war against itself. My ordeal began with intense pain in my left foot and calf—a sharp nerve sensation that prompted a visit to a podiatrist. Despite being diagnosed with peroneal tendonitis, imaging tests such as MRIs and X-rays did not confirm this diagnosis, leaving me puzzled. The pain was so acute that I developed a noticeable limp. I underwent physical therapy from August to November, but unfortunately, I saw no improvement. Doctors avoided steroid injections due to a potential risk of tendon rupture. I explored various footwear options, including Hokas and Brooks, which alleviated the discomfort somewhat, though it remains significant. At this juncture, I would rate the pain in my foot at a 4-5 out of 10, and I have recently started shockwave therapy. In August, I began to experience severe pain in the thoracic area of my back. I initiated physical therapy for this issue in October, yet the agony continues. Any twisting motion or walking beyond 2,000–3,000 steps provokes a flare-up, while staying under 2,000 steps keeps the pain around 6 out of 10. On November 17th, I received six cortisone injections in my back, which brought the pain down from 7 to 5.5 on average. Mornings are particularly difficult; movement helps to reduce the discomfort but physical therapy appears to neither improve nor worsen the situation. An MRI has been conducted, and I will review the results next week, but I expect them to be normal. Recently, over the past two weeks, I have been experiencing excruciating pain in my shoulder and neck region, particularly the trapezius muscle. The pain is sharp, making it nearly impossible for me to utilize my left arm for daily tasks; I even struggled to brush my hair this morning and experienced multiple disruptions to my sleep due to discomfort. Current Pain Levels: - Foot: 5/10 - Back: 6/10 - Shoulder/Neck: 8/10 Additional important observations: Upon taking ibuprofen, I notice significant relief; my foot pain diminishes to 1/10, back pain reduces to 3/10, and shoulder pain falls to 5/10. I am contemplating the possibility of Mast Cell Activation Syndrome (MCAS) because I have noticed that my skin turns red and becomes inflamed upon contact, plus I have dealt with chronic hives for my entire life. I tested positive for HLA-B27, yet X-rays do not indicate the presence of Ankylosing Spondylitis. I have been diagnosed with hypermobility but did not fulfill the criteria for Hypermobile Ehlers-Danlos syndrome. Tests for lupus returned negative results, and ANA tests were also negative. My CRP is at 19, ESR at 22, while all other levels (WBC, RBC, liver function, etc.) remain within normal ranges. What could possibly be happening? My foot experiences a temporary reprieve one day, only for my back to flare up, and then as my back starts to improve, my neck begins to ache. I have drastically limited my walking to 2,000–3,000 steps daily, as I have found this volume is manageable. I’m investing in optimal sleep positions and trying various pillows (including lumbar and leg supports), but none seem to provide relief. Typically, physical therapy works for me, as I have a history of muscle strains. I apologize for the length of this message, but any assistance or insights would mean a great deal to me.

Answers (1)

12/17/2025, 7:40:55 PM

OpenHealth AI

I'm truly sorry to hear about the significant discomfort you're experiencing. Your situation sounds challenging with multiple areas of pain impacting your daily life. Understanding the complexity of your symptoms is the first step towards relief. Let's break this down and consider some insights and steps you can take.

Main Points:

1. Current Pain and Symptoms: You are experiencing persistent pain in multiple areas (foot, back, shoulder/neck) which worsens with activity.
2. Existing Diagnoses and Tests: You have several diagnoses, including PCOS, hypermobility, and recurrent pilonidal disease, along with negative tests for autoimmune diseases.
3. Potential Causes: Given the symptoms and your medical history, conditions such as MCAS should indeed be considered as they may contribute to your chronic pain and other systemic symptoms.

Explanation:

Your symptoms could arise from a combination of factors, including:

• Hypermobility: This can lead to joint and muscle pain, as well as increased susceptibility to strains and injuries. It may also contribute to chronic pain syndromes.
• Mast Cell Activation Syndrome (MCAS): If you have reactive symptoms like redness or hives, this condition could potentially explain systemic pain and reactions to various stimuli.
• Nerve Irritation or Referred Pain: Your varying pain levels in different areas might indicate issues with nerve function or muscle regulation, particularly if the pain changes location often.

Despite negative tests for certain conditions, the ongoing presence of pain suggests that there may still be underlying issues not fully understood yet.

Next Steps:

1. Symptom Diary: Keep a detailed diary of your pain levels throughout the day and any triggers you notice (specific activities, dietary choices, weather changes). This could help identify patterns impacting your pain.

2. Pain Management Techniques:

   • Continue using ibuprofen for pain relief as it's effective for you. However, make sure to stick to recommended dosages and monitor for any side effects.
   • Apply heat or cold therapy to affected areas. Heat can soothe stiff or tense muscles; cold can alleviate inflammation.

3. Physical Therapy Adjustments: If physical therapy isn’t providing relief, don't hesitate to communicate this with your therapist. They may need to adjust your treatment plan, focusing on strength training, stretching, or specific techniques targeting hypermobility.

4. Explore MCAS Likelihood: Discuss with your doctor the possibility of MCAS in more depth. If you suspect it, consider asking for tests that evaluate mast cell activity or other related markers.

5. Evaluate Lifestyle Factors: Reducing vaping and alcohol consumption can improve overall health and possibly augment pain management. Additionally, ensure you're engaging in gentle, low-impact exercises that do not exacerbate your symptoms.

6. Sleep Hygiene: Keep prioritizing good sleep posture. If pillows haven’t helped, consider consulting with a specialist about orthotics or adaptive devices that may help in our quest for pain alleviation.

7. Potential Specialist Consultation: A referral to a rheumatologist or pain specialist might provide additional insights, particularly for chronic pain syndromes or the broader implications of your symptoms.

Conclusion:

Your journey may feel overwhelming, but taking systematic steps can lead to improvements. A focus on managing your immediate pain through medication, therapy modifications, and lifestyle adjustments will be crucial. Continue to advocate for yourself in healthcare discussions, aiming for a tailored plan that addresses the multifaceted nature of your symptoms. Please continue to reach out for support as you navigate this, and keep me updated on your progress or any further questions you may have!