I'm not 100% convinced yet that I actually do have Lyme's...I have multiple auto-immune issues that I've had for years before this all started and auto-immune problems are in our family; the doctor is admittedly not a Lyme's 'expert' although she is an alternative MD that is/has been treating other Lyme's patients; I went to her thinking I had a hormonal problem because I've been tested for pretty much everything else and she said 'this and this' are off (to her, but they were well within normal range according to my 'conventional' doctor's lab results), so I never really even told her my WHOLE story - and it IS confusing when you add in my past history, on-going issues prior to this mess and then these symptoms 'new' symptoms that came on out of nowhere (4 years ago now); and last but not least, my Elisa test results were negative one month after symptoms started, negative again about 1 1/2 years ago, and this summer my Western Blot and Elisa (Igenex) were also negative - Western blot band 41+++, band 31 and 34 Indeterminate, bands 45, 58, 66+, but she said this WAS positive. At first you are so happy to FINALLY have a diagnosis, but the more I read and think about it, the doubt really sets in - especially when it is all so costly at my own expense. None of it makes any more sense than the symptoms that came on out of nowhere...and I have been reading a LOT, so I 'get' everything that we are told, but in the back of my mind I just keep wondering if this has been something auto-immune all along and just hasn't fully surfaced. I know someone who has MS (and it really is MS, not Lyme's), who suddenly developed problems over 30 years ago. She went through tons of testing and was told they didn't know what caused it and not to worry about it. Well, over that 30 years her problems got steadily worse, but no sudden jumps and no doctor ever caught it or diagnosed her. Well, about 5 years ago, her problems being quite pronounced by this time, she was told she's had MS all along! She also has/had auto-immune issues in her family tree.
So to the title of my post...when my problems started completely out of the blue 4 years ago, I woke up one morning with a stiff elbow. It really was worse than stiff, but I thought it was a pinched nerve - it really was useless, couldn't extend it all the way without severe pain and no strength whatsoever. Continued to get worse, and after one month I decided to call my doctor's office because people were telling me it sounded like bursitis. Yep, that's what they said it sounded like. Well, the very next day, about mid-day my other elbow started to hurt, and within hours additionally both wrists, knees, ankles, fingers and toes started hurting too. It was VERY strange to say the least. I'd have severe pain in my knee and seconds to minutes to hours later, the extreme pain would be in a different joint. Sometimes the extreme pain would be in multiple joints at the same time, but some of the time it would be severe in one and to a lesser degree of pain in one or more other joints. It just moved around CONSTANTLY. Then, I got very dizzy. Within weeks to months other symptoms cames on out of the blue and never left! After going from doctor to doctor and only one of the Lupus tests being slightly positive, the doctor's would tell me that they don't know what I have, but it didn't fall under their area of expertise and the symptoms appeared to be "independent of each other." I started reading. A lot. All of these were symptoms of Lupus. All of these were symptoms of Lyme's. I have Lupus in my family history. I know that a huge proportion of people with Lyme's don't know they've had a tick bite and never had a rash - I fall into that group. I was, however, on vacation in an area of the midwest that is on the Lyme's map earlier that year. I also had very peculiar, unexplained symptoms about 15 years prior to this - that in hind sight TO ME, could be related. They lasted about 2 weeks and I went to the doctor at the tail end and was told they didn't know what it was. It went away and nothing even similar until all this started 4 years ago.
After all this came on 4 years ago, it was really bad the first year, then got much, much better. I went on with my life, except for some scares over following year where it would be severe again and then diminish after a few days. about 2 years ago it started up again and never went away since.
My main question here is about the migratory pain...was anyone else's pain pattern anything like mine? Initially, the pain was felt in the joints and then I realized it was somewhat in the soft tissues too. Now it's harder to distinguish where exactly the pain is coming from - bone/joint or soft tissue...it's more of a radiating ache kind of pain, rather than a sharp pain in a difinite spot.
Sorry this is so long, but that's my story and I'd really appreciate some input on the pain pattern.