AS Symptoms and Rehabilitation: A Student's Journey

Today I went to see the Rehabilitation Department?

Hello Doctor, I truly didn't expect to receive a reply today after sending my message last night.
I am the male patient with ankylosing spondylitis (AS).
Let me provide a more detailed account of my symptoms.
I am 174 cm tall and weigh 80 kg (originally 75 kg, but I haven't exercised since my injury and I had gained up to 90 kg, though I've recently lost weight back to 80 kg).
My body type is muscular.
I used to play basketball, but I haven't had any serious falls or injuries in recent years.

About six months ago, I started feeling discomfort in my left lower back after class.
When I got home, I could barely move; any movement would cause pain.
The next day, I visited an orthopedic doctor who prescribed muscle relaxants, and I felt better by August.
However, after a month, the discomfort returned, initially felt in the area where my buttocks meet my thighs, and then it gradually extended to my thighs and calves.
I went back to the doctor, who tested for HLA-B27 and found it to be positive.
I was then referred to the Rheumatology and Immunology Department at Taipei Veterans General Hospital, where I underwent a nuclear medicine scan.
The doctor prescribed sulfasalazine (an immunomodulator).
The results of the scan indicated that the left side was 0.13 higher than normal.
However, I did not exhibit many of the classic symptoms associated with AS; I did not feel particularly uncomfortable in the mornings.
Nevertheless, the doctor advised me to continue taking the medication.
I took it for three months, but my symptoms did not improve significantly.
I was also prescribed Celebrex (an anti-inflammatory), which I heard takes over three months to show effects (in September).
Later, I went to the neurosurgery department for a CT scan, where the doctor diagnosed me with a herniated disc at L5-S1.
I also have lumbar sacralization, and the sensations of soreness and pain have remained the same.
In October, I began traction therapy for rehabilitation, which was quite painful (especially when sitting down or standing up, I would feel numbness).
I could hardly walk normally in September.
Due to overusing my right leg, my left lower back became misaligned, but it improved a bit because the pain was truly intense at that time.
Sneezing would make me cry from the pain, and lying down would also cause intermittent pain.

I believe my recent improvement is due to initially not being aware of my posture because of the pain, but after starting rehabilitation and paying attention to my posture, as well as wearing a supportive back brace (which has significantly helped my walking), I feel somewhat better now.
The pain is not as severe, but I still feel discomfort in my left leg (both the thigh and calf) after sitting for a long time.

This is a summary of my medical history over the past six months.
I hope I haven't left out anything important, and I apologize for the complexity of my situation.
Recently, I've started experiencing soreness in my right shoulder, and two days ago, I began feeling pain in my right lower back (more pain than soreness), similar to the initial sensations I had on the left side six months ago.

What preventive measures or tests can I take? I am about to take university entrance exams and have already fallen behind this semester.
I hope I don't have to deal with the same issues on the other side.
Today, I visited the rehabilitation department again, and they prescribed muscle relaxants.
The rehabilitation doctor suggested I might need to get tested again, but it may not be feasible, and advised me to return to the Rheumatology and Immunology Department to check if it’s not an AS-related issue.
What should I do? The symptoms of AS are not obvious, but the rehabilitation department suggests it might be AS.
I am currently not taking any medication (sulfasalazine or pain relievers).
I am unsure of what to do as a high school senior.
Thank you for your help, Doctor.

jackson, 10~19 year old female. Ask Date: 2004/03/01

Dr. Guan Zaoxiang reply Rehabilitation

Based on your detailed description, I believe your pain is primarily due to a herniated intervertebral disc (HIVD) causing nerve root compression at L5-S1, which typically results in pain radiating from the buttocks, down the back of the thigh, to the back of the calf, and even to the sole of the foot.
Additionally, the effects of ankylosing spondylitis (AS) cannot be completely ruled out.
However, since you have consulted multiple specialists, the diagnosis should be accurate.

From your description, it seems you began rehabilitation around September to October, and now, in early March, you have only completed over 20 sessions, indicating that you have averaged less than six sessions per month over the past four months.
I believe the suboptimal treatment outcomes may stem from this limited engagement.
Generally, for low back issues, it is best to perform stretching exercises daily; for mild cases, it is recommended to do them at least three times a week to see significant improvement.

For HIVD, the best treatment advice is to avoid movements that increase pressure on the lumbar spine, engage in stretching exercises, and strengthen the abdominal and back muscles.
Medication and wearing a brace are secondary options (typically, rehabilitation specialists do not recommend braces for mild HIVD cases, as they can lead to dependency and neglect of posture, resulting in decreased muscle strength).

I suggest you remain patient and continue your stretching for another month to observe any changes in your symptoms.
If you notice improvement, there is no need for concern; just continue until you feel better.
However, if there is no progress or if your condition worsens, your physician may consider arranging further examinations (though it seems you have already undergone most tests).

Regarding the pain on your right side, some patients with intervertebral disc issues experience similar symptoms, so there is likely no need to suspect additional problems.
Additionally, you should adjust your sitting and sleeping positions to ensure proper posture and support for your lower back (you can find resources online for guidance).

As for your AS, I feel it is unlikely that it has no impact on you, but based on your description, it seems to be either in an inactive or mildly active phase.
Whether to take medications like sulfasalazine or celecoxib is subjective and should be determined in consultation with your rheumatologist.
I recommend visiting www.ascare.org.tw for more information before discussing it with your doctor.
Ultimately, treatment should be guided by your symptoms; if your spinal mobility is good and you experience no morning pain or stiffness, medication may not be necessary.
However, if you can tolerate low-dose medication to prevent joint inflammation (as symptoms only arise after inflammation reaches a certain level), it is advisable to consider that option.
In summary, I believe your challenges lie in treatment, prognosis, and your understanding of your condition.
Given the extensive evaluations you have undergone, the diagnosis should be accurate.
In terms of treatment for HIVD, rehabilitation requires your valuable time, and I encourage you to invest that time for your health, as rehabilitation has no side effects.
For AS, both exercise and medication are crucial; you should carefully consider whether to continue or reduce medication, but I hope your decision is not solely based on a reluctance to take medication.
You should thoroughly understand AS and discuss it with your rheumatologist before making a decision, as you wouldn’t want to leave your health in someone else's hands.
Our role as physicians is to provide important reference information for your decision-making.

Wishing you a speedy recovery,
Dr.
Tsao Hsiang

Reply Date: 2004/03/01

More Info

It sounds like you are going through a very challenging time with your health, particularly with the symptoms associated with Ankylosing Spondylitis (AS) and the complications you've experienced. First and foremost, it's important to acknowledge the physical and emotional toll that chronic pain and health issues can have on a person, especially as a student preparing for university.
Ankylosing Spondylitis is a type of inflammatory arthritis that primarily affects the spine and can lead to severe, chronic pain and discomfort. The symptoms you describe, such as pain in the lower back and legs, as well as the discomfort when sitting or standing for long periods, are common in individuals with AS. The fact that you have tested positive for the HLA-B27 antigen is also significant, as this genetic marker is often associated with AS, although not everyone who has it will develop the condition.

Your journey over the past six months has been quite complex, involving multiple medical consultations and treatments. It’s encouraging to hear that you have noticed some improvement after starting physical rehabilitation and being mindful of your posture. These steps are crucial in managing AS, as maintaining good posture and engaging in regular physical activity can help alleviate some of the symptoms.
However, it’s concerning that you are experiencing new symptoms, such as pain in your right shoulder and lower back. This could indicate that your condition is evolving, or it might be related to compensatory movements due to the pain on your left side. It’s essential to communicate these new symptoms to your healthcare provider, as they may require further investigation to rule out other potential issues, such as a herniated disc or other musculoskeletal problems.

In terms of managing your condition, here are some steps you can consider:
1. Regular Follow-ups: Keep regular appointments with your rheumatologist and physical therapist. They can monitor your symptoms and adjust your treatment plan as necessary.

2. Medication Management: If you are not currently taking any medications, discuss with your doctor the possibility of resuming anti-inflammatory medications or other treatments that may help manage your symptoms. Medications like NSAIDs (e.g., Celebrex) can be effective in reducing inflammation and pain.

3. Physical Therapy: Continue with your physical therapy sessions. A physical therapist can provide you with specific exercises tailored to your condition, which can help improve your flexibility and strength, and reduce pain.

4. Exercise: Engage in low-impact exercises such as swimming, walking, or cycling. These activities can help maintain mobility without putting too much strain on your joints.

5. Posture Awareness: As you mentioned, being mindful of your posture is crucial. Consider ergonomic adjustments in your study environment to support your back and neck.

6. Pain Management Techniques: Explore additional pain management techniques such as heat therapy, cold packs, or even mindfulness and relaxation techniques to help cope with pain.

7. Seek Support: Don’t hesitate to reach out to support groups or counseling services. Chronic pain can lead to feelings of isolation or depression, and talking to others who understand your experience can be beneficial.

8. Education: Educate yourself about AS and its management. Understanding your condition can empower you to make informed decisions about your health.

9. Lifestyle Modifications: Focus on a balanced diet and adequate hydration, as these can also play a role in managing inflammation.

10. Consider a Second Opinion: If you feel uncertain about your current treatment plan or diagnosis, seeking a second opinion from another rheumatologist may provide additional insights.

As you prepare for university, it’s essential to prioritize your health and well-being. Balancing your studies with managing a chronic condition can be challenging, but with the right support and treatment plan, it is possible to lead a fulfilling life. Remember, you are not alone in this journey, and there are resources available to help you navigate your health challenges.

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