dont know where to start!HELP

[lovedogs331]

I don't even know where to start when it comes to what hurts, and what doesn't feel good. I'll just start from the beginning.  When I was younger, like in elementary school, I would always hurt in random spots, and end up going to the clinic.  I would have my temp taken, and no fever.  Nothing was visibly wrong with me--even though I thought I had a broken knee or shoulder.  I was just be sent on back to my class.  That lasted until mid-way through my 8th grade year.  Then I had to have surgery on my right shoulder, because it would dislocate when I would raise my hand in the class room.  I would easily "take it out of socket" to show friends and family.  It was always very sore, but so easy to dislocate. I had the "magic wand" treatment, where they shrink my ligaments in the joint to help hold it together, through a very small hole in a couple spots. My shoulder has not begun to feel better, but it didn't dislocate for many years after the surgery. In year 2000, I had my knee "fixed" the same way. And the next year, my other knee.  Same problems over and over.  I also had some sharp pains in my tummy, but had ultrasounds done, and nothing shows up.  When I turned 21, things really started to go down hill fast!  I was sore all the time, couldn't sleep well, and had a new boyfriend. I decided that I needed to have some blood work done, and try to get to the bottom of these joint pains and tenderness ALL OVER!  I went to see a Rheumitologist, and he said I have fibromyalgia. He did tests for Lupus and MS, which both came back negative. So he put me on Cymbalta to stabilize my depression (which has been a problem for my entire life), and put me on Lyrica. The Lyrica seemed to help, but I gained a bunch of weight, and I had a lot of swelling in my hands and feet.  I was recently taken off Lyrica to see what else is out there. Since I've been off (since Thanksgiving 09), I have gone down hill again.  I have become so sore to the touch--almost like I am completely bruised from head to toe.
  
     Let me back track a couple years ago when I dislocated my other shoulder when I fell, and of course,it  had to have it "fixed" as well. To make things worse, I was starting to get new symptoms in my ladyparts.  My boyfriend and I were not longer able to have sex, due to the pain.  I wasn't "tight", but I felt as though I was being ripped apart.  My obgyn at the time said I had some kind of muscle problem, and gave me dilators to use every night to "train" the vagina to not do that. This did not work, in fact, it made it worse I think!  But I continued to do what she told me to do. And one day, she disappeared. Moved out of state. THANKS lady! Anyways, in the mean time, I had been having a lot of pain in my hips.  I would lift my leg to put jeans on, and my hip would snap and crack, causing a lot of pain.  So much pain in fact, I couldn't bare weight on *** what so ever. Was on crutches for 7 months before anyone could figure it out.   Going from doctor to doctor, I finally found someone in Indianapolis that was a specialist in hips.  Had an MRI done, and the doctor saw that my labrum was torn.  He diagnosed me with Acetabular Dysplacia.  In order to fix my right hip, it was going to have to be operated on. This surgery was much different than my other four.  This time the doctors had to tag team up and have one fix the tear, and the other, shave my bone down so it would catch on itself anymore.  I know have a lovely battle wound.  FINALLY, a year after my right hip surgery,  it is doing fabulous! It's actually the only thing in my body that seems to function half way decent.  I will eventually have to have my left hip fixed, but I'm trying to wait as long as possible to do that--as I'm sure you understand. Durning the past 6 months or so, I found an obgyn that was willing to really dive deep into my vaginal issues.  Here is some of what she has done--in her words.

"She first presented to me approximately 6 months ago with complaints of dyspareunia which had been refractive to prior treatment with Clodetasol application and topical Lidocaine. She was given a diagnosis of vestibulitis and managed in this fashion.  When she presented to me, however, I did note a vulvar lesion at the posterior aspect of her introitus associated with excoriations and erythema.  A biopsy was performed at this time which did show a yeast infection.  This was treated with Diflucan as well as topical Monistat at that time.  She then returned to me approximately one month later with worsening pain during intercourse.  she said that the external lesion seemed to have resolved but now there was a sharp pain within her vaginal vault.  On a speculum exam, there was a lesion that was identified and was strongly suspicious at the time for HSV-2.  A bacterial and HSV culture was obtained as well as a blood culture for HSV-2.  I empirically started her on Valtrex and followed up on the results of those cultures.  To my surprise, all of the cultures including the HSV-2 had returned negative.  In follow up of this prior ulcer, another speculum exam was done, and the lesion on the left side wall had regressed, but it now appeared that there was agglutination and loss of architecture of her labia minora in relation to her labia majora.  Additionally, it now appeared that the patient had an acute demarcation of erythema involving just outside of her introitus and around circumferentially her vulva.  The progression of these findings happened over the course of only approximately three months.  At this time, I began suspecting that this was Lichen sclerosis or some other auto-immune disorder. A biopsy was performed again, and the patient was started on Clobetasol cream.  The biopsy returned showing chronic, active vaginitis with acanthosis.  There was no evidence evidence of dysplasia or malignancy.  PAS and algae stain for fungus was also negative.  The patient followed up with me, and despite second trial of Clobetasol, she felt that her symptoms were getting worse.  At this time, I consulted with both my colleagues, and the only thing that had no been tried was perhaps a trial of Bactrim for a possible underlying MRSA infection that had not previously been identified.  It was decided to start her on a course of Bactrim and followup with me in two weeks. Meanwhile, she had been on a course of Diflucan based on her very first biospy showing yeast.  Additionally, I started her on a Tricyclic anti-depressant of Nortiptyline as this sometimes has been show to help chronic dyspareunia.  The patient again returned to me with complains of no resolution of her symtoms despite Bactrim, Nortiptyline,TCA, and of course Diflucan.   As a last effort, I did have her try applying topical Moistate to one side of her labia and cleaning with a Betadine swab daily on the other side.  The patient also was not responding to steroids either.  I did note that the patient does have some spasming of her pelvic floor muscles which is consistent with vestibulitis; however, I do not think this can explain her skin findings."
    
So now I'm left with nothing, once again.  She was a terrific doctor, and tried as much as she could. In many different random spots I have little spasms through out the day and night.  It jumps from shoulders, to thighs, to ankles and arms. A couple other random things; horribly sore neck that sometimes causes sharp pain down the back of my left arm-for hours.  I have to pick and choose what I want to hurt, when.  I do one thing, and it hurts another.  I baby one joint, and it hurts another.  I wake up in the morning with a lock jaw, and it's always sore.  I try to swim in a heated pool to get my work out.   I'm in the process of getting a dictation from my other doctors, but really wanted to get some info out on the med web, that could possibly give suggestions or just thoughts of any of this craziness! Thanks for taking the time to read this.

[lovedogs331]

Thank you all so much for the responses!! I have an apt with my RA next week, and hopefully he can figure more things out for me!! I am starting to be taken off my Nortript. bc i'm boarder line allergic to it.  I have had a fever for two days now....ughh...

THANKS AGAIN!!! hope all of you have a great weekend, and fabulous Valentines Day!!

[dustybrown]

I think Trudie is right. You should have your Rheumatologist reevaluate you again and then continue to do so every year or so.

Also, since you responded so well to the Lyrica, but you had trouble with the weight gain, you should see if your doctor would consider trying a different anti-seizure medication. Lyrica is an anti-seizure med. I had the same trouble with it as you, but I did get immense relief from the pain. I take Topamax currently which is also an anti-seizure med, but I have heard Keppra works very good for Fibro pain and has no weight gain issues. Neurontin I have tried and it has less of the weight gain side effect, but does cause weight gain for some people- I actually switched from Lyrica to Neurontin and lost weight right away.

Anyhow, I would definitely be seen by a Rheumatologist again and be treated for the Fibromyalgia at least for now and be monitored just in case what you have does develop into something autoimmune. A Rheumatologist will be well equipped to handle the situation should that happen. Good luck to you.
-Dusty

[TrudieC]

I think you need more rheumatologic testing.  Things like Lupus can take a long time to show up in your bloodwork and lupus can cause sores in your genitals and cause you to have a higher risk of yeast infections.