Chronic Fatigue Syndrome Symptoms or Something Else?

I was hoping you could give me advice with regards to a series of symptoms that nobody has been able to explain, despite my seeing many doctors and having many tests.
It all started when I was 12 when I woke up randomly with back pain. I’m pretty active, so I wrote it off as overdoing it, and after a few weeks it eventually went away. A few months later, though, my back pain returned and it sort of felt as if my back had given out. There was pain shooting into my left leg and I felt like I was being stabbed in the back and had difficulty weight-bearing on my left leg. It eventually went away, only to return again a few weeks later. Over the next few years, my back gave out more frequently and the time between each episode decreased until currently it is pretty much constant and in both legs. I have severe back and leg pain, as well as numbness, burning, and weakness in my legs. About two years or so ago, I started noticing other symptoms which may or may not be related. The most bothersome ones are headaches that include a stiff neck and sensitivity to light and sound, dizziness and fainting (I’ve since tested positive for neurocardiogenic syncope), chest pain that is worse with breathing and comes with shortness of breath, substantial fatigue and exhaustion, muscle spasms and twitching especially in my legs, somewhat slurred speech and difficulty speaking (though it is pretty mild), clumsiness and lack of coordination which has led to many falls and broken glassware in the chem lab, general shakiness and weakness, difficulty controlling my bladder, joint pain (which is most severe in my back, but had also spread into my hips and knees), difficulty focusing my eyes, minor rashes that come and goes, and frequent sinus infections. I was hospitalized for a week in August following a spinal injection with a severe headache, chest pain, and persistent brachycardia. The only explanation I was given was it was a response to the steroids.
I’m currently 19 and a sophomore in college (English and premed–hoping for a career in orthopedics or neurosurgery). I’m still trying to keep up with my studies and stay as active,healthy, and normal as possible. At this point, I am very weak, have daily severe headaches, am dropping a lot of weight, am in a lot of pain, and am sleeping 12+ hours a day. I don’t think this could be stress related, as symptoms have continued to progress through winter break. I don’t feel I am depressed as I am excited about my studies and sports. Nor am I one accustomed to complaining about little things and I have always been very tough with a very high pain tolerance (I played an entire soccer season on a broken ankle), but this thing has got me licked. I’ve seen an internist, cardiologist, neurologist, orthopedic surgeon, rheumatologist and an endocrinologist. Except for the tilt table test for neurocardiogenic syncope, everything has come up negative , which includes brain, complete spine MRI, spinal bone scan, blood tests (ANA negative, slightly anemic sometimes, no Lyme, thyroid, or anything else they’ve spotted as being unusual). I am currently on Florinef, Norpace, Elavil, Neurontin, and Jolessa.
Everyone I’ve talked to has said there’s nothing wrong with me. They’re convinced they’ve ruled out everything, but with such general and broad symptoms, I can’t help but wonder if they’re missing something. I know you cannot diagnose without seeing me, but I’d appreciate any advice on what my next step should be. Should I continue to seek care from these doctors who believe my symptoms are inherently unexplainable or should I believe that there really is nothing wrong with me as they’ve said even though I still don’t feel well? I am wary of changing doctors too much because that reeks of Munchhausen, and I don’t want to give anyone an excuse not to take my symptoms seriously. What would you recommend that one does when he or she cannot find an explanation for their symptoms? I have trouble believing in idiopathic symptoms, especially in a once completely healthy, active teenager. Plus, I don’t think sleeping 12+ hours a day is going to cut it in med school and beyond.

Doctor Joshua’s Answer:

Your description of the back problems at age 12 bring to mind many possible causes, one of which is spondylolysis and spondylolisthesis, which are conditions that cause instability of the lumbar spine, and can affect children and teenagers who are very active in sports. This condition usually resolves spontaneously. However, there are various other possibilities ranging from infectious diseases and autoimmune diseases to spondyloarthropaties, and muscle related pain and nerve impingement. Of course it’s impossible to say afterwards what was causing the back pain originally, and over the Internet and without the benefit of a physical examination, it’s also difficult to comment on your other symptoms.

It looks like you’ve been thoroughly examined by specialists, and a wide range of tests and radiology have been done, so I won’t probably be able to add much here.

You describe a wide range of symptoms, and the question is, which ones are related and which ones are not. If one were to assume that many of your symptoms are related, some disease groups come to mind, and I’ll list some diseases that may produce similar symptoms. I am not an internist, so I’m not really qualified to assess this sort of a complex problem, but I’ll drop some names that you can discuss with your doctor, as to whether they have been ruled out.

-Chronic Fatigue Syndrome
-Systemic lupus erythematosus
-Sarcoidosis
-Spondyloarthropaties
-Psoriatic Arthritis
-Mixed connective tissue disease
-Polymyositis
-Vasculitis
-Depression, also atypical
-Psychogenic Rheumatism
-Multiple Sclerosis and other neurological disorders
-Endocrinologic diseases (hormonal)
-Neoplasms (tumors)
-Fibromyalgia

Also, has Lyme disease been definitively ruled out (antibodies, PCR etc)? Have you been tested for HLA-B27?

What treatments have been attempted? Since the cause has not been found, I’d expect that some empirical treatments might have been initiated. Sometimes, if there is cause to believe you might have been infected with Lyme in the past, treatment for Lyme disease may in some cases be initiated even if the test results are negative.

If an autoimmune disease is suspected, and the diagnosis remains uncertain, a trial with drugs for autoimmune diseases, such as salazopyrine (Sulphasalazine) may be initiated.

Another possible drug trial would be antidepressant, preferably one with an analgesic action, such as amitriptyline.

This is just a short list, but it demonstrates that your symptoms are nonspecific, and could be due to a variety of reasons. Also, many of your symptoms may be unrelated.

Of course, I have provided this answer given just the limited information I have about your illness, so you should definitely discuss anything I’ve mentioned with your own doctors, and follow your own doctor’s advice and not mine.

Based on the information I have, the specialists that might be best able to help you are: rheumatologist, neurologist, internist, and psychiatrist. It looks like you’ve seen all but a psychiatrist, so it might be a good idea to cover that base, too.

Good luck and keep us posted on the forum!