Joint pain -- 25 years old and walk with a cane
I just joined when I read another member's problems that sounded exactly like problems I had a few years ago. Now I'm hoping that someone out there will recognize what I'm suffering from now, and can point me in the right direction.
First a little background info. I'm a 25 year old female, 5'2" 115lbs, married but no kids, living in Southern California. My family has a strong history of autoimmune diseases. 4 of my 5 siblings have at least one autoimmune diseases, and several members of my extended family have autoimmune diseases. I got my first autoimmune disease a month before my 12th birthday, alopecia areata. I've had several flares of that off and on since then, but the hair has always grown back eventually. The last alopecia flare that I was aware of was when I was 20, but I've been losing a lot of hair recently, so I'm just waiting to find the new spot now.
In September 2003 I was diagnosed with my second autoimmune disease, Hashimoto's Thyroiditis. I was hypothyroid, but with medication I've been able to get all my numbers fairly well controlled. I also have a heart murmur.
In January 2004, I caught a bad flu and ran a fever for about a week. That was when my current batch of problems started up. After that flu, I started having joint pain my knees and hips, and some numbness in my toes. Since 2003, I've developed a lot of pain in my back, and sometimes in my shoulder and elbow joints, but never in the small joints of my hands or feet. The knees and hips are still the major pain locations.
The joint pain comes in three varieties: the sort of joint pain you have when you're running a fever, and your joints ache; a sudden, sharp, stabbing pain that will come out of nowhere and then leave immediately, often happening while there's other joint pain going on; and a severe pain that I can only describe as the feeling immediately after you fall down on concrete, only without the adrenalin rush and lasting for hours and hours.
The pain is usually worse later in the day, though I'm often very stiff, usually without pain, in the morning. Sitting for too long (on a plane, for instance) is very painful, and makes it difficult to walk afterwards. Too much walking or exercise will make my joints hurt too. The only exercise I can manage is 20 minutes of swimming or very light pilates, or 20 minutes of walking if my joints aren't already in pain. There is extreme fatigue that goes along with the pain, and I often feel very cold (for instance, it's 76 degrees inside right now, my temperature is 98.5, but I'm wearing thermals, two pairs of socks, slippers, a sweatshirt, a hat, and I'm wrapped in a blanket).
As I'm coming to the end of my third year with this, I've found some patterns. My health is the best during the summer. Summer 2003 and 2004 I had almost no symptoms at all. Summer 2005 I had June and July without any symptoms. This summer there was a gradual lessening of my symptoms through June, July, and August. I only had to take pain medication once every two or three days, and the issues of feeling cold went away entirely from May until about two weeks ago.
Any sort of infection will set off a flare. If I run a fever, my symptoms will get a lot worse for at least 4 months straight. My doctors won't give me a flu shot, since they don't know what it will do to my immune system. This is my first autumn since this thing started that I have not caught a bad flu or cold, or run a fever over 100 degrees (99.8 or so is pretty common with me, though most of the time my temp is between 98.4 and 98.6), so it's interesting to see how things are going. Instead of a sharp jump in symptoms following a flu, I've instead had a gradual decline starting near the end of August. I'm back up to pain medication every single day, sometimes twice or three times a day. I was working full time through the end of September (I work from home for my father, so he is flexible with my hours), but over the past month I've been able to put in less and less time every day.
I am currently on prescription pain medication which I can take up to three times a day, and a prescription muscle relaxant that I take right before bed to help me sleep through the night without being in too much pain to sleep. I'm also on a prescription for my stomach, since the pain med makes me nauseous and I was losing weight on it. I'm on thyroid medication for the Hashimoto's, and birth control since my doctors have made it quite a point that I "should not attempt an unsupervised pregnancy", in their words.
Last May I also broke down and bought a cane. I usually only need it when I know I will be walking a lot, at airports (the sitting does quite a number on me), and sometimes in the evenings when the pain is really bad. Still, I'm 25 years old and I need a cane to walk. :(
I have gone through more doctors than I can count at the moment, but so far no diagnosis. The doctors have ruled out MS and Rheumatoid arthritis, and think Lupus is unlikely since I haven't had any skin issues. I have had MRIs of my brain, an x-ray of my spine, an EMG, EKG, and EEG, and more blood tests than I can name. With the exception of my thyroid antibodies, which are still off the chart, everything has come back normal -- including my white count at the same time that my thyroid antibodies were off the chart, which I thought was odd. If my thyroid antibodies are that high, shouldn't my white count be elevated too?
I have had trigger point injections, which hurt like ***l and didn't help at all, and 8 months later I still have a sunken and painful spot about the size of a quarter on my hip where one of the injections went. Pain meds thus far have been pretty good at keeping things under control (though not pain-free), and I had a week dose of steroids last February that helped lessen my symptoms for a few weeks. During the summer I swam every other day and that seemed to help. Now that it's too cold to swim, I try to do a ballet-type warm up and stretching at least every other day, but often I'm too tired or in too much pain to be able to do it. When I do manage to, I can usually go a few extra hours without pain meds the next day, but that's the only difference I've noticed.
I've gotten to a point where I can manage the symptoms, but what I want now is a diagnosis. I want to know what this thing is, so I can know what to expect in the future. I've had a few unscrupulous doctors try to pawn off bad diagnoses on me. The first was peripheral neuropathy, which I believed for a long time until a new doctor did the EMG and disproved that. The second was Fibromyalgia, which I don't fit the diagnostic criteria for. At this point, I'm only interested in a diagnosis that has test results to back it up and that matches my symptoms.
So, if anyone actually made it this far, what I'm looking for are suggestions of other diseases that I should look into. I have a fairly good set of doctors right now that are willing to test for anything that sounds like a match with my symptoms (the last one was Ankylosing Spondylitis, which the x-ray more or less ruled out), but they themselves are out of ideas on what to test for. So if any of this sounds familiar to anyone, please, please let me know. At this rate of decline I figure I am going to need a permanent handicap parking permit by the time I'm 30. I've also given up on the idea of having children.
Thanks in advance,
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