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Mysterious tender pain in random locations
I've been experiencing tender pains in random locations near joints and muscles throughout my body for roughly two or three years now. These pains can generally be in a lot of places but the most common areas I get them are in a hip joint on the side of my butt that I can touch and it will hurt. If I stand on one leg awkwardly it will hurt. Also get them in my feet. Almost anyway on the foot, balls of my foot, heal just below the skin, arch of my foot, top of my foot. Another common area is at the very top base of my quadricep. So when I lift my knee it will hurt and be very difficult. This past weekend I got one on the top of my hand. Kinda felt like my point finger tendon that pulls my finger open was a little swollen and hurt to the touch and operate my finger. These are not excruciating, just very annoying. I will limp a little if one is on top of my quad, or my hip, or my foot. Rarely ill get one in my knee an my knee will visually be swollen and very painful to the touch and to walk on. I'll usually have only one at a time although occasionally two. They will come on slow over the course of a day in which time I'll usually just take some motrin which helps alot. Then this will only last about 2-3 days This indicates to me that it is a type of inflammation. If I don't take any motrin It will last roughly 4-5 days and will be significantly more painful. I've tried to pin point it by doing various things to my diet, excercise, but the only correlation that seems to have any effect on it is drinking beer and this will tend to cause an event 1-2 days after consuming beer. Wine does not do this. But I will get it even when I'm not drinking at all. Ive seen my doctor about it and they've given me blood tests and all seems normal except for one thing. The lymes test tests your blood for 5 indicators. You test positive for all 5 and you have lymes. I tested positive for only one indicator. So he says you probably have a very very very mild case of lymes or it was a false postive. So he put me on antibiotics. Didn't do a thing of course. I still get the pains. Any insight on this would be very helpful because I'm helpless.
I'm with mojo: a doc who does not understand Lyme disease or believe that it is a serious ailment often falls back on the vague term 'fibromyalgia', which is a made-up word meaning literally 'pain in fibers.'
That's like seeing a doc when you have a headache, and after the doc examines you and listens to your symptoms, s/he says, "My diagnosis is that you have a headache." Full stop.
What's important is what is *causing* the headache, not simply saying 'yes, you have a headache,' and doing nothing else.
Therefore a doc's use of the vague term 'fibromyalgia' is imo a sign that the doc does not understand Lyme at all, and I personally would go elsewhere for medical care.
That's like seeing a doc when you have a headache, and after the doc examines you and listens to your symptoms, s/he says, "My diagnosis is that you have a headache." Full stop.
What's important is what is *causing* the headache, not simply saying 'yes, you have a headache,' and doing nothing else.
Therefore a doc's use of the vague term 'fibromyalgia' is imo a sign that the doc does not understand Lyme at all, and I personally would go elsewhere for medical care.
Fibromyalgia is Lyme. That was one of my many misdiagnosis and many people I know too.
Welcome to MedHelp Lyme -- and good for you for plowing ahead to figure out what's going on. There is a serious split in the medical community about Lyme -- where it's found geographically, what symptoms it displays, how to test and diagnosis it, and (of course) how to treat it.
Lyme is a relatively new disease, and the docs who first identified it not so long ago gave their best effort at describing the symptoms of Lyme and how to cure it, but those were initial efforts that the current generation of MDs have clung to as the last word on the topic. Other MDs now hold to these early (and still persisting) descriptions of Lyme and how to diagnose and treat it. In a nutshell, this outdated view holds that Lyme is rare, hard to get, and easy to cure. Actually, it's no longer rare, it's easy to get because the tiny Lyme ticks are everywhere, and a couple weeks of the commonly prescribed doxycycline is often not enough for several reasons (including the fact that Lyme often comes with companion infections that don't respond to doxycycline, and doxy doesn't have the ability to pierce the slimy protective shields [biofilms] that Lyme bacteria make to hide in).
Unfortunately, nobody told the Lyme bacteria that it is their job to *stay* rare and to be hard to transmit and easy to cure, and Lyme has continued to spread widely.
In addition, the old-style tests (which your doc likely used) are not very accurate at all. These old tests look for your immune system's reaction to the presence of Lyme bacteria in your blood, but Lyme has the ability to *suppress* your immune system -- so the tests can say you are negative for Lyme, but you can indeed have a nasty case of it.
Other, more up-to-date docs may use the old tests (more data is always good), but they ALSO use newer tests which don't rely on your immune system reaction. These newer tests look in your blood for *genetic material* of the Lyme bacteria. So while the older tests can show positive results, they are not particularly reliable, so I would find an MD who uses the newer tests. Note: your current doc, even if s/he agrees to order these newer tests, probably would not understand the results, because the old-fashioned docs firmly believe in the older tests and don't take the new ones seriously.
There is a voluntary organization for docs who really DO understand Lyme and how to properly diagnose and treat it. It's called the International Lyme and Associated Diseases Society (ILADS for short), and they have a site where you can also get the names of ILADS-member docs near you through this address -- tell them generally where you are and how far you can travel, such as, "Need LLMD within 50 miles of Rochester NY":
contact [at] ILADS [dot] org
I know all this sounds really strange, and I wouldn't have believed it myself if I hadn't lived through it.
ILADS does not, to my knowledge, have an admissions test for docs to become members, because any MD can join. And Lyme is still a developing area of medicine, so there are bound to be some sliiiightly odd MDs who are ILADS members. If the first one you see doesn't seem a good fit for you, then get another name and try again. Lyme takes at least several months to treat, not a few weeks, so you'll be seeing your doc for a while -- and the ticks that carry Lyme often carry other infections that need separate diagnosis and meds. What a hassle, but getting well again is DEFINITELY worth it.
You might also post a new message on this site titled something like 'Need LLMD near [Rochester] NY' or whatever area you are in or can reasonably get to for follow up appointments (which are about once a month after your diagnosis is made).
Best wishes, and let us know how we can help and also how you do, okay? It's a hassle, but it beats having Lyme.
Lyme is a relatively new disease, and the docs who first identified it not so long ago gave their best effort at describing the symptoms of Lyme and how to cure it, but those were initial efforts that the current generation of MDs have clung to as the last word on the topic. Other MDs now hold to these early (and still persisting) descriptions of Lyme and how to diagnose and treat it. In a nutshell, this outdated view holds that Lyme is rare, hard to get, and easy to cure. Actually, it's no longer rare, it's easy to get because the tiny Lyme ticks are everywhere, and a couple weeks of the commonly prescribed doxycycline is often not enough for several reasons (including the fact that Lyme often comes with companion infections that don't respond to doxycycline, and doxy doesn't have the ability to pierce the slimy protective shields [biofilms] that Lyme bacteria make to hide in).
Unfortunately, nobody told the Lyme bacteria that it is their job to *stay* rare and to be hard to transmit and easy to cure, and Lyme has continued to spread widely.
In addition, the old-style tests (which your doc likely used) are not very accurate at all. These old tests look for your immune system's reaction to the presence of Lyme bacteria in your blood, but Lyme has the ability to *suppress* your immune system -- so the tests can say you are negative for Lyme, but you can indeed have a nasty case of it.
Other, more up-to-date docs may use the old tests (more data is always good), but they ALSO use newer tests which don't rely on your immune system reaction. These newer tests look in your blood for *genetic material* of the Lyme bacteria. So while the older tests can show positive results, they are not particularly reliable, so I would find an MD who uses the newer tests. Note: your current doc, even if s/he agrees to order these newer tests, probably would not understand the results, because the old-fashioned docs firmly believe in the older tests and don't take the new ones seriously.
There is a voluntary organization for docs who really DO understand Lyme and how to properly diagnose and treat it. It's called the International Lyme and Associated Diseases Society (ILADS for short), and they have a site where you can also get the names of ILADS-member docs near you through this address -- tell them generally where you are and how far you can travel, such as, "Need LLMD within 50 miles of Rochester NY":
contact [at] ILADS [dot] org
I know all this sounds really strange, and I wouldn't have believed it myself if I hadn't lived through it.
ILADS does not, to my knowledge, have an admissions test for docs to become members, because any MD can join. And Lyme is still a developing area of medicine, so there are bound to be some sliiiightly odd MDs who are ILADS members. If the first one you see doesn't seem a good fit for you, then get another name and try again. Lyme takes at least several months to treat, not a few weeks, so you'll be seeing your doc for a while -- and the ticks that carry Lyme often carry other infections that need separate diagnosis and meds. What a hassle, but getting well again is DEFINITELY worth it.
You might also post a new message on this site titled something like 'Need LLMD near [Rochester] NY' or whatever area you are in or can reasonably get to for follow up appointments (which are about once a month after your diagnosis is made).
Best wishes, and let us know how we can help and also how you do, okay? It's a hassle, but it beats having Lyme.
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