My girlfriend has been having mild to medium joint pain and some stiffness throughout the night, and occasionally all day, for more than 10 years. This doesn't occur every night, however - only about 40-50% of the time, and we can't seem to find any pattern or evident cause in the way she eats or sleeps. The pain is most severe in the hands/wrists/fingers usually, but also encompasses the elbows, knees, ankles, back, and head...as in, headaches (I suppose the back and head could be caused by something else?). Once or twice per year, she has very acute and extreme onsets of the pain, such as the one last week, which are very debilitating and last 1-3 days. Most of the time, acetaminophen drugs like Tylenol and NSAIDs like Ibuprofin help to a small degree, but during the more painful times, they don't make any difference. As far as I know, the acute onsets have always accompanied some other sickness/infection like the flu or a cold, but most sicknesses/infections do not trigger an onset, and the ones that do aren't particularly bad or anything. In years past, her previous doctor hadn't really diagnosed anything, acted more like it was in her head or something (not sure, wasn't there). Took her to a different doctor last week and he thought it was rheumatoid arthritis, a logical guess, but wanted some blood tests done to test for various kinds of arthritis. Well, the tests came back negative yesterday. Haven't heard anything further from the doc yet.
I'd like to get anyone's opinion on this who's willing to share it, or any other ideas even for what might cause this. The following two chronic symptoms may be completely unrelated to the joint pain, but it's probably a good idea to include them anyway since she's had them about as long, and if anyone has any opinions/suggestions on them, I certainly welcome those as well, since these conditions are chronic also...
She also has experienced nausea (and occasionally actual vomiting) about 10% of the nights for roughly the same length of time as the joint pain. Often, the onset of this is relatively severe and lasts for a few hours, but it's almost always at night or late evening. The most evident cause of this was her mother feeding her family some beef that infected them with campylobacter. They were eating the stuff for the better part of a year from what I understand, and my girlfriend was infected for three years. Since that time, her system has been either intolerant of or allergic to beef (not sure which). Needless to say, she avoids eating it. During that time, her mom also gave her a lot of NSAIDs to help with the pain, but that caused internal bleeding and just made things worse. Yeah, completely ridiculous situation, but that's beside the point for now...I would suppose that this all could have caused her digestive tract to act weird all the time, but I know she avoids beef, so I'm not sure on that. I had thought about an ulcer, but she doesn't experience stomach pain so much as flat out nausea and the urge to vomit. Any other thoughts? Could this be related to the joint pain?
The other chronic symptom is nightmares, night terrors, and panic attacks. I've watched her as she's fallen asleep many times, and I find that she goes directly into REM sleep - dreaming, which I read isn't supposed to happen for about 90 minutes. She often wakes up from nightmares shortly after falling asleep, so I can confirm that this does happen. The frequency of the nightmares (and presumably the instant dreaming) varies over time. Some months she'll have very few, other months she may have them like 75% of the time. The actual night terrors that cause her to get up and move or anything occur only once or twice per year. Panic attacks occur once every 2 months approximately and are fairly typical as far as panic attacks goes (from what I read online). If they occur late at night, she asks me or anyone else she's with to keep her awake until they're over as they will cause night terrors if she falls asleep directly after. Not sure how this would be related other than possibly untreated Lyme disease (she did get bitten by a tick 10 years ago), but I welcome any theories!
Thank you everyone who takes time to offer any advice or thoughts!!!
Misty, thanks for the reply...the doc ruled out fibromyalgia almost immediately since the pain was localized in the joints rather than any of the muscles/tendons. We went into the doc again today to hear a more detailed report on her blood tests and he said there's no sign of inflammation or any sort of rheumatic problem. He now thinks it's just plain arthritis and told her to take chondroitin/glucosamine/MSM tablets for awhile along with a multivitamin. From what I can find, chondroitin and glucosamine mostly only help to prevent joint damage, not so much with the pain. The MSM apparently has fairly inconclusive tests and hasn't been tested beyond about 12 months. Any thoughts on that?
I'm sure there are many things wrong, unfortunately...but I'm running out of guesses. I had thought about Lyme disease, but the doctor didn't want to have her tested. I'd also read about something called parvovirus B19, which sounds like it may also be the culprit. Still welcoming all comments, suggestions, etc. Thanks!
I'd suggest she see a different rheumatologist. Preferably one associated with a teaching hospital or involved in clinical research.
Blood tests cannot rule out rheumatoid arthritis. Nor can xrays, although typical rheumatoid erosions seen on xray can confirm diagnosis. (these are seldom seen in early RA)
Lyme disease is a very real possibility, I can't believe that doctor couldn't be bothered to test her for it. Grrr The Parvo virus aka "Fifth Disease", besides being a serious pain all by itself, is also well known as a trigger for autoimmune diseases like RA.
Have you read about Reactive Arthritis? That's inflammatory arthritis caused by infection.
How old is she? If she's younger than 25, it could be adult onset Still's Disease.
Last edited by AuntieLeela; 01-14-2009 at 04:04 PM.
Reason: Edit to Add Question
Thanks Leela. One question to you if you know the answer - since her blood tests showed there was no noticeable inflammation, could it still be something inflammatory causing this (like still's)?
Thanks for pointing that out about the blood tests not always catching the rheumatoid factor, that's not something I'd considered at all. Yes we've considered reactive arthritis as a possibility as well since a lot of the time the pain is worse when she's sick, but I hadn't thought of Still's disease (she is 17). I've found a lot of stuff on Lyme disease and fifth disease and their symptoms, but do you know if any symptoms other than joint pain are extremely common in any of these that may help narrow it down?
I can't believe this doctor though...I totally agree with grrr, but her insurance requires her to get a reference through a local doctor (which we only have 3 of) to get cover her for anythone from out of town, or something like that. I'm pushing my hardest to get her to a specialist, though...
Yes, you can have a normal SED rate (inflammation rate) and a negative rheumatoid factor and have Still's. In fact most Still's patients test negative for RF and on ANA tests (Lupus blood tests) it can be negative even in someone with severe RA - like me - I have severe juvenile chronic polyarthritis (like RA but starts in infancy) and I've never tested positive for RF. And your RF can change, from negative to positive and back again. Same with the SED rate (also called ESR), you can have a high SED without disease and a low SED with active noticeable inflammation.
Unfortunately most blood tests for arthritis are unspecific and vague.
Because Still's is episodic it is even harder to detect with blood tests. High fevers and a salmon colored rash that come and go are typical of Still's but symptoms vary. Sore throat, swollen lymph glands, pleursy, enlargement of the liver and spleen are some complications. Ferritin (iron) levels often jump during episodes of Still's, knowledgeable doctors test for this, it's considered almost diagnostic for Still's. Some doctors consider Still's to be the the adult version of what I have, juvenile chronic polyarthritis.
I'm no doctor but I'd bet that your girlfriend's condition is a result of the long term food (beef) poisoning she experienced. After having reactive arthritis for the last year as a result of a urinary tract infection, and doing a lot of reading on the subject, I learned that arthritis in general, and inflammatory conditions are often the result of the immune system going out of wack from a trigger infection (like food poisoning) and attacking your body at the joints, ligaments and even organs and other tissues. I also can attest to the frustration of not having conclusive blood work come back...mine were all normal, yet I suffered tremendous pain for many months. In addition to working with a doctor, keep on searching on-line for answers because not all doctor's are as up on the latest research as they should be. As a matter when I asked my first doctor if my arthritic pain could be the result of the urinary infection I had (as I read on-line about reactive arthritis) he said absolutely not, they were unrelated...well he was completely wrong and thank God I was diagnosed by another, better doctor. Has your girlfriend seen a sleep specialist? She should, so they can confirm what the cause is, and who knows, maybe it will turn out to be related to the joint pain (inflammatory response or something) and could help determine a diagnosis for her entire condition.
Last edited by adamchitown; 01-21-2009 at 09:15 AM.
Adam, thanks for posting that, I'd heard a couple things to that nature, but wasn't sure how accurate they were - it'll help convince her to get to a few specialists with me. Did anything ever get taken care of with the arthritis (or whatever it was) that you were experiencing? If so, what kind of treatment did you use, if I may ask?
I have reactive arthritis (ReA), which thank God is a temporary condition that is comes from a specific urinary or lower GI infection and lasts about 1 year. It has a quick onset and is debilitating for many. I was fortunate that I was still able to work at my office job but was in horrible pain 24-7. There were no comfortable positions to stand, lye or even lye in bed in and it was very painful. Fortunately, ReA only lasts up to a year or so and then goes completely away for 90% of people...it's a very strange disease, that I had no idea even existed until I had it. The symptoms and treatment are very similar to ankylosing spondylitis (the permanent version of ReA) which include antibiotics at first, then anti-inflammatory drugs, pain killers and in some cases immunosuppressant/DMARDS which greatly restrict the immune system from working so it can't attack the joints, ligaments and tissues effected by arthritis. From the research I've read they're not really sure why the immune system attacks the body but it can be because those parts of the body have cells with similar markers as invading germs or that the germs (whatever they're called) are actually still hiding deep in the tissue where the immune system cells can't get to...causing the immune system cells to keep eating away at the body trying to get to the germ cells deep in the tissue. One other idea I had regarding your girlfriend's condition is possibly psoriasis which commonly attacks the legs (severe stiffness and pain) and can require regular injections of immunosuppresants to keep under control...and yes it is the same psoriasis that effects the skin, but most people don't realize it is an arthritic condition that also effects the legs. Check out the Arthritis Foundation website and look under the diseases area which lists most (but not all) arthritic conditions, symptoms and treatment.