anyone out there with auto-immune/chronic pain issues before dx?

Hi everyone. I would just like to say that I was diagnosed with lyme disease two and a half years ago. I found the lump in my breast almost two years to the day later. I had been on heavy antibiotics for two years (including intravenous). I told my LLMD about the lumps in my breast two years ago and he always said their just cysts you need to take more iodine, so I did. it wasn't until the new lump and my moms breast cancer returning that I insisted my doc send me for an ultrasound.

i've had an interesting  day.. i go to the ent every month to get cultured, cause i've had too many bacterial infections.. had a picc line for almost 6 mos. last time... so, i went to dermo last wk, after mohs surgery. told them i thought it was turning... oh, no, its fine...

    dr. today says not only IS it infected, its' gone systemic. cultured me, nose, ears, throat, and leg... he'll send it out, and get at least one anti b that'll kill it. thats' why i go to him. he's the only one who listens!!! THEN, he tells me there's a test, that should've been done asap; when i went to the hypothyroid specialist.. to show if its' the auto immune disease attacking my thyroid.. if it is, it changes the entire tx!!!!  now, i paid 3.. yes 3 drs. to do a consult for me.. noone did a stupid blood test!!!(nor did they send records to him, after he recommended THEM!!!!\  i'm just so torked over the whoe thing... nothing to be done though. if isaid something to them, they do the CYOA thing... so, will just go ahead, and see what we find...

    I HATE it, as soon as you say "auto immune " their etes glaze over, and they don't hear another word.. and WE all pay for their stupidity...

   i just have to be big time grateful i have this dr. in my life!!(and all of you) to listen to my irate rantings!!!

   hope you're all feeling better, and esp hoping PT helps, Kate.....3jays

3jays- I'm sorry for all the crap you have to put up with.  You're right- most of their eyes do glaze over when they hear "auto-immune".  You might as well say mental illness.  Ticks me off that there are more doctors who don't take this seriously than those that do.  Sometimes it feels like the only way to get proper care in this country is to go out and get your own medical degree and then treat yourself.  Might be cheaper anyway!  Hope they get everything straightened out for you and get some answers SOON on how best to treat.  (((hugs)))

Sherrie- Glad you joined us.  I think it is a lot easier to talk about the BC.  People at least understand that.  So many of our auto-immune issues are "invisible" so I think people don't really get how much of our lives are affected by it.  But we understand exactly what you went through if it helps.  Glad things are back to normal for you (as much as possible anyway)!

Kate; im hoping this new blood test will help us figure out whats' going on.. thank goodness this dr. realizes, although i feel cancer "trumps" any of the other; the other affects everything else, including staying ned...

 i've had 3 drs/ now, even the specialsits tell me the hypo is a direct result of chemo.. but, who knows... chicken or the egg? all i know is i'd like to wring the chicken s  neck, so it'd stop laying damned egss!!!hahahah

    Barbe; im praying for you sweetie. when life kicks us in the head, esp relationally; we need to take a time out.. im doing that now... uunfortunately, this week its taken form iin brownies, from Boston Market hahaha

 I can't afford to gain, i sprouted 20 lbs with hyoo in less than a month, and i wasn't svelte, by any stretch of the imagination, before!!!!

        im an emotional eater; have known that for years, and the state of my emotions right now, is p-- poor.. so, another thing i gotta try and control a bit; or i'll be tipping the scales at 200 lbs!............3jays

barbe- The surgery in Florida was going to be a 3 stage process.  Surgery #1 (which I had) he was going to swap the implants for smaller ones and then do fat grafting over the top.  Surgery #2 he was going to take the implants out all together and do another round of fat grafting and surgery #3 more fat grafting.  Since my DH's DX, though, I was going to stop at surgery #1 but then started having issues again.  I don't want to go back to PS in Florida, though, because of a LOT of different reasons so that's why I was consulting with new PS's in CA.    Even if I stop now, though, the fat grafting made a huge difference in my results so I'm happy about that.

3jays- I find if I don't stay active I'm an emotional eater, too.  I find when I watch t.v. or movies I can zone out on the pain I'm feeling.  But t.v. and snacking seem to go hand in hand so am trying to cut back on the time in front of the "boob tube".  lol! 

barbe- No, my payment only covered the first surgery and I wouldn't go back to that office for any more.  It's way too hard to get to Miami and, frankly, his office isn't worth it.  His office and billing staff is completely incompetent and even though he is great at what he does he also made some mistakes.  The whole thing was so much more stressful than it needed to be.  

Pain syndromes concern me as well. About 10 years ago, I broke my wrist in 4 places and was dx with RSD as a result of pins put through my wrist. For the first several years I had to be careful as anything would cause extreme burning, and my hand turning cold and purple. My hand is better but if I overdue it the right hand will start to burn, become feverish, and start to turn red. I've learn to deal with it so it's not much of a problem

But with my upcoming mx and reconstruction surgery, where I will be given implants, I am very concerned about pain in the chest area. The pain specialist said I have a very sensitive nervous system making me vulnerable to chronic pain problems. So...today, I saw a different plastic surgeon who injects his patients with botox in the pec muscles. I spoke with one woman, a patient of Dr. Gabrel, who said after the first week tylenol was enough. She was driving and doing everything she usually does the second week after surgery. This is why I'm choosing him...hoping that I won't have that much pain. I wanted to do the fat grafting but no one does whole breast fat grafting from this area. If the TE's or implants don't work, or causes pain problems, I'll remove them and I guess find someone who can do fat grafting.

My prevous pain docs said avoid surgery at all cost. Can't avoid it when you have cancer.

I have had body aches during and after my treatments but now that the treatments are over, I find that I have more pain in my body.  I mentioned it to my doctor who told me to take some over the counter joint pain reliever.  The pain isn't only in my joints and the pain reliever did not help.  It is hard to sleep sometimes because it hurts so bad.  I even asked my regular family dr about it and he said to take the tylenol 3 that I still had left from surgery.  It does not help much either.  I went to the health food store and the woman working in there told me that some patients get fybro after treatment but that doctors won't tell you that. 

this should get interesting once things get under way.  have had Arthritis since I was 22/23.  have Fibromyalgia, Hypothyroid, Rosacea.  have had Lyme Disease and Babesiosis (one of the possible co-infections).

Kate, when I looked it up in Wikipedia, it is used as a narcotic and alchol dependancy!!!

hi glas.. kate, thanks for the linkys..

  My ms pain spec has been looking nto it for me. i take a narcotic everyday, but can't tolerate it well, like most... we've been seeing if my ins would allow it "off label" for my ms.......3jays

Sounds GREAT.  Interesting that Fibro is considered in the Autoimmune group when it's so controversial.

barbe- I think you're right about the MS/FM.  I remember one time I printed out the symptoms for both and then highlighted the ones I had.  It was amazing the overlap.  I wonder how many FM patients, if they had brain MRI's, would have plaques show up like I have?  (Yet, have never been dx with MS.  The closest I came was a nuerologist who thought maybe I had MS at one time but was now in remission.)  

Doesn't auto-immune just basically mean it's a disease where the body turns on itself and can affect multiple areas of the body?