Unraveling the Mystery of Chronic Pain: Seeking Answers for Rare Conditions

Rare diseases with unknown origins?

Hello Dr.
Chen,
I have been suffering from pain for over ten years.
Thank you for taking the time to read my message.
Ten years ago, I experienced lower back pain and was diagnosed with mild bone spurs.
However, after starting physical therapy, my body began to exhibit various discomforts and symptoms.
For instance, after doing sit-ups to strengthen my abdominal muscles or continuing with rehabilitation exercises, my feet would become red and swollen, and then the swelling would subside only to recur a few months later.
Additionally, my limbs often feel cold, and I frequently experience muscle tightness and lack of elasticity.
Even basic stretching seems to make the tightness worse.
I wonder if muscle compression is causing poor blood circulation.
When pressure is applied to my upper body, it sometimes affects my vision, my ears, and I often feel pressure on my teeth, even suspecting that my dentures are being displaced.
Now, I experience gum swelling and pain every few months.
A few years ago, I consulted many doctors regarding diabetes, kidney issues, heart conditions, and peripheral vascular problems, but nothing significant was found.
The doctors mentioned that the mild bone spurs could not be the cause, and even my gastroesophageal reflux was mild, but the symptoms seem to be exaggerated.
Therefore, I have been relying on regular exercise and a balanced diet.
After several years, my condition has not improved.
I did find some relief from having a physical therapist perform full-body massages, but the cost is prohibitive for regular visits.

Currently, I have noticed that my body is extremely sensitive to "cold" and "dampness," which makes my muscles feel tight and uncomfortable.
My calves often itch, leading to skin breaks and dark spots from pigmentation.
When the weather turns cold and damp, my muscles feel particularly uncomfortable.
Sometimes my vision narrows or becomes blurry, my hearing is affected, and I experience gum swelling and pain.
Engaging in running or any strenuous activities also leads to discomfort.
I often feel disheartened by the lack of results despite my efforts.
I am unsure if there are any underlying diseases affecting my body or what tests I should undergo (full-body health checks have shown no major issues).
I would appreciate your guidance, Dr.
Chen.
Thank you.

Xiao Wu, 40~49 year old female. Ask Date: 2023/02/19

Dr. Chen Bozhang reply Family Medicine

Hello! If you are unsure about the cause of your discomfort, it is recommended to visit a family medicine clinic at a regional hospital or higher for evaluation.
Based on your condition and needs, further medical management can be arranged.
Thank you!

Reply Date: 2023/02/19

More Info

Chronic pain can be a complex and multifaceted issue, especially when it has persisted for over a decade, as you described. Your symptoms, including recurrent swelling in your feet, muscle tightness, and discomfort that seems to be exacerbated by physical activity or environmental changes, suggest that there may be underlying conditions that need to be explored further.

Firstly, your history of mild bone spurs (osteophytes) in your spine could be contributing to your symptoms, but as you mentioned, doctors have indicated that they are not significant enough to be the sole cause of your discomfort. It’s important to note that bone spurs can sometimes lead to nerve compression, which could explain some of the neurological symptoms you are experiencing, such as changes in vision, hearing, and dental discomfort. This could be due to referred pain from nerve irritation or compression in the cervical spine.

The swelling in your feet and the sensation of coldness in your extremities could indicate issues with circulation or possibly a condition like peripheral neuropathy. Peripheral neuropathy can result from various factors, including diabetes, vitamin deficiencies, or even autoimmune disorders. Given that you have undergone extensive testing for diabetes and other systemic conditions, it might be worthwhile to consider a referral to a neurologist who specializes in pain management and nerve disorders.

Your mention of muscle tightness and discomfort after exercise could also suggest a condition known as myofascial pain syndrome, where trigger points in the muscles cause pain and discomfort in seemingly unrelated areas. This could explain the tightness and the feeling of pressure in your upper body, as well as the dental discomfort. Physical therapy, particularly techniques that focus on myofascial release, could be beneficial, although you noted that regular sessions can be costly.

Additionally, the environmental factors you mentioned, such as sensitivity to cold and humidity, could be indicative of conditions like fibromyalgia or chronic fatigue syndrome, both of which can cause widespread pain and discomfort without clear physical findings. These conditions often require a multidisciplinary approach to management, including physical therapy, cognitive behavioral therapy, and sometimes medications to help manage pain and improve quality of life.

Given the complexity of your symptoms, I would recommend the following steps:
1. Neurological Evaluation: A thorough evaluation by a neurologist could help identify any nerve-related issues that may not have been previously considered. This may include nerve conduction studies or electromyography (EMG) to assess nerve function.

2. Rheumatological Assessment: Since you have experienced a variety of symptoms that may suggest an autoimmune process, consulting a rheumatologist could be beneficial. They can evaluate for conditions like rheumatoid arthritis, lupus, or other connective tissue disorders.

3. Physical Therapy: While cost can be a concern, exploring options for physical therapy that focuses on myofascial release or other specialized techniques may provide relief. Some clinics offer sliding scale fees or community programs that could make this more accessible.

4. Lifestyle Modifications: Continue to focus on regular exercise, but consider low-impact activities such as swimming or yoga, which can help improve flexibility and reduce muscle tension without exacerbating pain.

5. Pain Management: If your pain is significantly impacting your quality of life, discussing pain management options with your healthcare provider may be necessary. This could include medications, alternative therapies, or even acupuncture.

6. Mental Health Support: Chronic pain can lead to feelings of hopelessness and frustration. Seeking support from a mental health professional who understands chronic pain can be beneficial in coping with the emotional aspects of your condition.

In conclusion, while your symptoms are complex and multifactorial, a comprehensive approach involving specialists and a focus on both physical and mental health may provide you with the relief you seek. It’s important to advocate for yourself and seek out the appropriate specialists who can help unravel the mystery of your chronic pain.

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