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Sarcoidosis

Chronic lymph pain

06/30/2008

Question:

I am a 42 year old white female, and have had chronic muscle tension, spasms and pain throughout my body for 25 years. It has slowly gotten worse, especially with stressful events, illness or injury (I don`t seem to ever fully recover). Over time I have developed significant leg edema, joint pain in all joints (especially hands, feet and hips), neurologic problems such as arms and feet falling asleep with standing, exercise, or holding something, vertigo, and sinusitis. It is very uncomfortable to sit, walk, stand, or exercise. I get very stiff when sitting for short periods of time, and it takes at least 30 minutes to get relatively full motion back. The only way I make it through the day is with prednisone and maximum doses of ibuprofen (which works much better than most heavy duty pain meds). Exercise does not help me feel better, either short term or long term. I overheat easily, and get out of breath taking a shower or tying my shoes.

I recently figured out that what is hurting is the lymph nodes and vessels from my head to my feet. They radiate pain or are tender to the touch, give bursts of pain with pressure, and are swollen and hard. The pressure causes ringing and pain in my ears, vision problems and headaches. I have been tested for rheumatoid factor three times and the results were negative. I have had an ANA titer come back positive twice. I understand sarcoidosis can cause problems with the lymph system (as well as others), but standard lung xrays come back clear. Are there other lymph conditions that can cause these symptoms, and last such a long period of time? Should I go to a hematologist or rheumatologist? Is there a subspecialty in which I should try to find a doctor? Thank you very much...

Answer:

It is difficult to determine the cause of your condition based on the information provided. Although sarcoidosis can present with chronic pain, there are a number of other conditions that should be considered. Based upon the fact that your symptoms have been present for many years and your ANA was positive, a rheumatologist would be a good place to start. Since your primary care doctor is most informed about your condition and the tests that have been performed, it is strongly recommended that you have the referral to a specialist arranged by your primary care doctor.

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Response by:

Elliott D Crouser, MD Elliott D Crouser, MD
Associate Professor of Pulmonary, Allergy, Critical Care & Sleep Medicine
College of Medicine
The Ohio State University