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Uncertainty

Jul 15, 2008 - 2 comments
Tags:

low cholesterol

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low blood pressure

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polyarticular pain

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difficulty breathing

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blurred vision

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faint

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muscle pain

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fatigue

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Migratory pain

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no diagnosis

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Chronic Pain

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Hypermobility

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intermittent pain

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Chronic Fatigue

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sleep



I have become worried about both new and worsening symptoms.  I have had undiagnosed joint pain since I was 14 (I am currently 19), when I had to quit high-level competitive swimming because no "swimmer's shoulder" diagnoses held.  I lived through high school with some shoulder pain, but nothing huge as long as I never used my arm or exercised.  Obviously, no exercise for life is a bad plan!  It has been no fun to quit sports, not to mention the mental and emotional benefits of exercise.  Plus, though I have no weight problems now, it is relatively easy to maintain a healthy weight as a teenager and likely to become difficult if I continue to be unable to exercise without unendurable pain.  I have sought treatment, with my parents' loving help, but in hindsight, we have not been sufficiently aggressive in this.

However, one year ago, I could no longer deny that my joint pain had generalized.  I now have pain on a regular basis in both shoulders, elbows, knees, hips, ankles, feet, wrists, and hands.  This tends to worsen with bad weather and any activity, but at least as often, there is no apparent trigger.  As of the past two months, my limb muscles and bones are painful, too.  The bone pain seems migratory, i.e., an elbow will ache for a while, then move to the shoulder, then back to the elbow, then the hand and wrist, etc.  The muscle pain, in particular, feels like I am sore from a beating, but I am not even exercising (light walking to classes and work, and even that is painful) and I can think of no other cause for such distress.  All of this pain is intermittent, perhaps 60-75% of my days are a struggle, and not all of those impair my work in a serious way (desk job plus studying; even using a computer mouse has become a challenge, not to mention carrying books and trekking all over college campuses).  I do not have any joint stiffness or loss of range of motion.

At least as worrying are my other, more recent symptoms.  Often, now, I become incredibly fatigued.  Concentration, decision-making, and memory are very poor at these times, especially compared to my normal state of action.  I am not getting too little or too much sleep (7-9 hours/night, which has worked for me for some time).  My quality of sleep may be reduced, as I am in more pain and more widespread pain than ever before, plus I seem to be waking up, looking at the clock, and falling asleep again.  Breathing takes effort and feels shallow, and I easily lose my breath, though I have a history of robust breathing and great lung capacity.  My resting pulse drops to ~60 from 70-75.  I get slightly patchy vision and feel dizzy, even sitting down or lying on the floor.  The blurred vision is puzzling, as a recent trip to the eye doctor confirmed that I am no more nearsighted than I have been for some time.  Standing up often makes me temporarily black out, which has always been the case, but I think this is getting increasingly frequent.

I have always had slightly low blood pressure, perhaps 100 over 65 or thereabouts, and I have been prone to fainting for years, but I suspect the faintness is getting worse.  My total cholesterol used to be ~165, but around the time my joint pain generalized a year ago, it dropped to 141 in about two months and was no higher as of January (I stopped donating blood then, so I do not have more recent numbers).  If my cholesterol has continued to drop, I suppose it could get too low and start negatively impacting my health, though I have little idea as to what levels are considered problematic.

Perhaps it also matters that I have a large range of motion in most or all joints, even without stretching.  For instance, I can still fall into the splits, bend my fingers back parallel to my forearm, bend backwards into a ball, tilt my neck all the way to my shoulder, etc.  My first physical therapist called me hyperflexible.  However, according to my primary care physician, I do not show any other signs of collagen deformity, such as characteristic skin texture and elasticity.  I have not had any dislocations.

I had blood work and urinalysis last November, including checks for a number of possibly joint-related conditions, such as rheumatoid arthritis, Lyme disease, hypothyroidism, and others.  It came up 100% healthy, but I was not flaring up with pain at the time, so perhaps that means little anyway.  Shoulder X-rays have always looked totally healthy.  One of the most frustrating things about the chronic pain is that no treatment has ever helped at all.  I have repeatedly attempted using ice, heat packs, massage, ibuprofen, acetaminophen, naproxen sodium, glucosamine & chondroitin, cortisone injection, arthroscopic shoulder surgery, and a lot of physical therapy.  So, if I have pain and cannot think, sleep, or relax, I have always had to wait it out.  It baffles me, not to mention the orthopedists, but it frustrates me even more.  I feel like I am crippled as a teen, but the rest of my life is so happy and I have worked to make it so, but I do not know how to make this problem manageable.

I have been in contact with rheumatologists, but my first appointment is in October unless somebody cancels, and I wonder if there is anything I can do in the meantime.  I did recently start taking a once-a-day multivitamin with 100% RDA for many nutrients (I was careful to avoid one of those odd "overdose" supplements and I only buy supplements for which I have seen the contents as verified by an independent laboratory) plus ~1000 mg/day of omega-3 fatty acids (out of a total 3 g/day of fish oil supplement) as well as some vitamin D every other day, since I spend next to no time exposed to the sun.  I eat a fairly healthy diet, with lots of fruits, vegetables, some dairy, healthy fats, water, tea, whole grains, beans, and some meats.  Since my cholesterol is low and my weight is fine, I do not avoid real foods like eggs or butter, though I do make a point of refusing margarine and other overly processed foods.  This has changed a bit recently because I have strong sugar cravings when I am fatigued, so I do splurge on that a bit, plus some caffeine, that I used to do just fine without.  It feels like I cannot start a day of work without a Coke or a cafe mocha because I wake up exhausted.

Any advice or information sources would be most appreciated.  I hope the specificity my description is helpful to those who want to help and not so overly detailed as to be unnecessarily confusing.  Thank you so much for your concern!

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by sasha24, Apr 24, 2009
Hi - I know this is an old post, but I also have unexplained migratory joint pains (hard to tell exactly, but some of it seems to be muscle pain too).  It is mostly a deep aching pain.  Has been going on for over 3 years and came on suddenly.  No answers after many doctors and many tests (including 2 rheumatologists).  I have trouble with side effects of meds, so even though I've tried several pain medications, I usually have to give them up because I have enough trouble without adding more!  I wish you luck.

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by Amme42, Apr 25, 2009
sasha24, I am so sorry to hear that you are experiencing those pains.  It is so awful and I hope you find relief.  What you describe does sound a lot like me, even in the description of pain as not distinctly either muscle or joint pain.  Plus, the struggle of going from doctor to doctor without relief, not knowing what to do, is so indescribably frustrating!

After I posted this in July, I still felt terrible all summer and into the fall.  The rheumatologist said it might be fibromyalgia and prescribed, as a first measure, muscle relaxers that did not help me (and I had unusually bad side effects with one).  One possibility that was discussed was an atypical case of Celiac disease, the only treatment of which is a completely and totally gluten-free diet.  In order to feel like I was doing something, I went gluten-free after Thanksgiving with the help of my family.  I did not feel different at all at first, especially because my symptoms could come and go, but by January, most of my pain was gone.

Now I eat gluten-free and I am 95-100% free of symptoms except when I get accidentally "glutened," which gives me severe aches in my arms and/or legs and, sometimes, fatigue.  We are in the process of figuring out whether I have Celiac disease (it is very difficult to diagnose now that I am not eating gluten and I cannot go on a gluten 'trial;" that is like asking me to stab myself all over three times a day for a month).  I never thought I would be happy at the idea of having an incurable genetic disorder, but I am giddy about it!

In that light, I strongly encourage you to get blood tests run that could indicate gluten intolerance.  Get a whole panel of Celiac disease blood tests done before you attempt to try out any dietary changes.  I do not recall the names of all, but there are at least four, I think.  I remember that I thought my rheumatologist had run these tests, but that was not the case.  There is a good chance that you have never been tested for this because it is not part of standard testing related to joint pains, and understandably so.  Blood testing is not a perfect check, but it is in the 80-90%+ ranges both for sensitivity and specificity on most indicators, so it is still a really good check.  Do not reduce or eliminate gluten in your diet before you get tested because that makes the testing unreliable.  I suspect that the costs of getting one more blood panel are worth the possibility of conquering this.

I wish you luck as well!

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