Oxalates Suck!

It seems like I'm going to have to give the low oxalate diet a try again. Or at least figure out another way to deal with oxalates. After some night time activities with the bf I went to the bathroom and OMG it burned like I haven't felt in a long time! Thank God for cold water. I could also tell things were swollen and my muscles seemed more tense and strained than they should have been. The low oxalate diet is just so boring! No chocolate, no coffee, no strawberries and tons of other fruits and veggies which are actually good for you. I'm going to have to research if you can substitute taking calcium citrate for doing a low oxalate diet, because the calcium citrate is supposed to help absorb or remove oxalates. I've never been very good with the whole diet thing if I don't have some strong underlying objection to the food (ie being a vegetarian). I really also have to work on my PT exercises because that will probably help with the fibromyalgia pain, which is also mostly in my hips, and maybe even my horrible balance and clumsiness. I have a tendency to walk into the corners of walls and furniture. I must look like a total spaz, although I prefer to think of myself as the quirky-clumsy-type girl from a romantic comedy. :-P I just always seem to remember at bad times, like right before I have to leave for work or after I've gotten into bed. Oh well if I want a normal sex life I guess that's what I have to do... Ugh I just want a normal vagina!

Too Good to be True

I tried the Flexeril the other day and it did work. Man did it ever work! It was almost like taking an Ambien, except it doesn't kick in as fast or make you loopy if you stay up after taking it. The only problem is it works too well. I slept like a rock last night and the night before, which was great, but I was exhausted when I woke up on Tuesday for work. Then today I work later in the day and therefore didn't have to get up early. I slept until 10 and that was only because my boyfriend turned on the TV, I probably easily could have slept later. I've been taking 10 mg, but I might try to split the pill and take just 5 mg, because 10 seems to just be too much! I'll try Thursday night when I don't have to get up for work early the next day. Hopefully that will help me sleep but not totally knock me out for so long. Well at least it does something, which is more than I can say for a lot of things we all may try. I mainly need help with sleep and fatigue. I do have pain but right now its more soreness and discomfort that I can deal with (knock on wood). The fatigue/fibro fog just shuts me down and if its bad enough I have to take a nap or I won't get anything done. It sucks at work since I can't take a nap then and I have to try to keep myself conscious with lots of coffee, which doesn't always work. Has anyone else tried anything that has helped with the fatigue? I'm doing the Flexeril and trying exercise a few days a week, which does help a bit, but sometimes it still breaks through.

WTF?

Ok, so I know I just posted, but I had to rant about something else. About 2 hours ago I took some generic Tylenol Arthritis hoping it would help my hip pain, which has been making me not want to move for half the day. Since then the pain has gotten worse despite the Tylenol and trying to keep my legs extended and not cramped up, which is what usually makes things worse. I'm also feeling slightly loopy/light headed. What?! I know that traditional pain relievers don't always work for fibro, but they usually do at least a little for me. Why would it get worse? Argh, I really hope the Flexeril works tonight.

No Lupus!

I went to the rheumatologist today and I don't have lupus! Yay! I don't know why my ANA came back positive the first time, but it was negative this time, so that's good. Bad news I still have fibromyalgia and I've been pretty uncomfortable today after traveling and not sleeping much this weekend. My hips are really sore from being squished while on the plane and prevented me from running today. My knees and ankles are sore too, but not as bad as my hips. I had my Flexeril prescription filled so I'm planning to try that tonight to hopefully alleviate some of the pain and help me sleep. I think I'm also going to have to start sleeping on my back to keep the pressure off of my knees and hips, which sucks because I really prefer sleeping on my side. I'm also going to try to stop crossing my legs so much when I sit for the same reason. In addition I'm going to try to start up the PT exercises I got when I was doing therapy for the VVS. I haven't done them in a while so those might help with my VVS pain and since a lot of them have to do with pelvic floor and hip muscles, maybe my fibromyalgia pain too.
Argh, I hate having such vague and poorly understood conditions. I have no idea why I have VVS or fibromyalgia and they just seemed to come out of nowhere. For a while I thought I might have fibromyalgia because I had so many of the symptoms, except for pain. Then at the start of the year the pain kicked in and hasn't stopped. Why would my body do this to itself? It just makes no sense (well I guess thats the same for all autoimmune diseases, why would your body turn on itself?) I feel like every treatment is an experiment. I just want something that works for the VVS since I've been dealing with it for so long and helping the fibro would be nice too. Hopefully the Flexeril will work at least a little. That would be nice.

Stress is a Pain in My Hip

This week has been super stressful despite not having to work that much. It's all been personal stress, the most fun kind. First I'm trying to plan a long distance bridal shower which is really hard to do! Trying to get my scattered friends together in one place at a specific time has been difficult, but it is finally all set. But its a different day then I thought it would be when I booked my flight so I had to deal with trying to change the flight, but its ridiculously expensive, like twice the original ticket so I've checked out other earlier flights and I'm going to show up super early for one that looks fairly empty and try to get on. Wish me luck! 

I wish that was the worst of my problems, but my boyfriend, "Michael". I'm leaving for school soon and we'll have to do long-distance to stay together. We've both done it before and its not fun. So we've been talking a lot about what to do and its mostly been upsetting. I'm also thinking about where its all going due to the bridal shower and since he can't give me a straight answer its making me obsess over it, as I tend to do.

So what does this have to do with my fibro and vulvodynia? Well stress just makes the pain worse! Mainly the fibro right now, which is making my hips and knees ache. I'm also having more trouble than usual trying to sleep, which gives me more stress, which gives me more pain! Its a crazy vicious cycle. I have another rheumatologist appointment next week where I'll find out if I also have lupus or not (hopefully not) and maybe get some more ideas on what to do. I thought summer was supposed to be a relaxing time!

Running from Fibromyalgia

Just before I was officially diagnosed with fibromyalgia I decided to take up running. Despite it not necessarily being suggested as the ideal exercise for fibromyalgia, I've kept with it for about a month now. Three weeks longer than I've ever stuck with running in the past. Well at this point its more of walking/jogging, but you get the point. I've never been what you would call "coordinated" or "athletic". Most of the time I'm lucky if I can walk straight and not run into a wall. Lets just say I'd be bad at that sobriety test when I am sober.
As a kid gym was my least favorite class, especially when it was time for the President's Challenge (do they even do that anymore?). Remember it? You had to do a bunch of sit-ups, try to do pull-ups, see how far you could reach past your toes, and...run a mile. I could never do it, I'd have to walk a good portion of it. It was so embarrassing, especially when all the other girls in my class were stick thin soccer players (I was of course chubby too). Because of that I've always tried to get myself into running despite hating it. Finally I decided I'd need a reason to run, so I signed up for a 5k in July. I'm slowly getting better at it and I hope I'll be ready when the time comes for the race! Its going to be a bit harder for me since I'm one of those weird people who hates running outside and loves the treadmill(tv total, control of your speed, and being able to just stop whenever you want, who wouldn't love it?), so I have to get myself outside more to train.
So far it hasn't been too bad on the fibro. Some days I do notice more joint pain, especially in my hips and knees, but it has definitely given me more energy overall. We'll see if it helps in the long run, but I've actually been enjoying it, which is something I never thought I'd say. Has anyone else tried exercise to control their fibromyalgia? How has it worked for you?

How it all started

I suppose I should tell you guys my back story regarding VVS. It's probably going to be a bit long so bear with me. If you don't know what vulvar vestibulitis (or vestibulodynia) is, its a subset of vulvodynia (vaginal pain) that generally occurs upon contact with the opening of the vagina (the vestibule). That means I luckily only have pain when something touches that area (as opposed to women who have pain all the time, I can't imagine...). Unfortunately the purpose of having a vagina often revolves around it being touched or shall we say stimulated. ::Sigh::
I was diagnosed 4 years ago, but I'm 99.9% sure that I've always had it looking back on things. Long before being diagnosed I'd notice that sitting in ways that compressed my lady bits were fairly uncomfortable, my period was quite irritating to that area (not cramps, but burning pain in the vestibule), and tampons weren't much fun either. I asked a gynecologist about it once, but she just recommended using organic or unscented pads or tampons. Not much help.
Later when that area started to get, um, more attention we'll say, it was still uncomfortable, but I thought maybe I just need to get used to the "attention" because fooling around is supposed to feel good right? Why wouldn't it...eventually? When I actually started having sex I was on an antidepressant that pretty much killed all of my sexual sensations. After going off of them I noticed sex didn't feel good the way I had heard it was supposed to, in fact it down right hurt! Clearly something was wrong and so I embarked on the journey I'm sure most of you have had of trying to figure out what the hell was wrong with me.
I started at my college's health center where I was first diagnosed with a yeast infection and bacterial vaginosis. Sounded simple enough, take some pills, use some cream and it will all be taken care of, right? Wrong! My health center wasn't exactly equipped to figure this kind of thing out so when I got home for the summer I went to a local gynecologist who through the super scientific test of poking me with a Q-tip in various areas downtown and asking if it hurt diagnosed me with vulvodynia.
Wait? Vulvo-whatia? My vagina's depressed? I might have to keep a vagina diary? That's right I had a condition I had first heard about on "Sex and the City". Who gets a condition they heard about on a TV show!? Well at least I had an answer and Charlotte only talked about it for, what, five minutes (mildest case ever!) so I should be fine. Wrong again. Since then I've tried, lidocane gel, lidocane and neurontin cream, testosterone cream, 2 types of estrogen cream, neurontin, cymbalta, elavil, desipramine, physical therapy, going off birth control pills, and probably other things I'm forgetting with only mild success. I've been to about 5 doctors and I'm not sure what to try next.
Right now I'm using Estrace and I'm supposed to be taking baking soda baths every night, and doing a low oxalate diet. I'm sure I'll complain about the diet later, needless to say its not very fun to stick to (no coffee or chocolate? how do you live?). I recently had a very good nurse practitioner who actually had VVS too, but just before my second appointment she abruptly quit gynecology and moved to end of life care or something. My treatments are basically on hold now until I move for grad school. I may try neurontin again as it did seem to work ok, but I'm still looking for other options.
Right now, I basically can't have sex because it hurts too much, which sucks as an early 20-something in a relationship (as it would for anyone). I'm hoping something will eventually work to at least control this condition, hopefully not surgery, but who knows. I'm always happy to take advice from others who have had some success. So that's my VVS story in a nutshell, what are your stories?

To Sleep Perchance to Dream

When you have fibromyalgia, getting a good night's sleep is really freaking hard! Apparently it screws with your sleep cycles and you don't get enough deep sleep that makes you feel rested. This has been happening to me for at least the past 2 years since I almost never wake up feeling rested and usually have to drag myself out of bed. It also means that I often can't fall asleep at night even though I'm exhausted while I could pass out cold at almost any time during the day. Makes no sense, huh? I've tried natural and OTC sleep remedies, but those don't work that well for me, still taking a while to kick in, giving me restless leg (just want you need when you're trying to sleep!), and leaving me tired in the morning. Ambien worked pretty well, but I don't want to get in a habit of having to take something so strong to sleep.

As the rheumatologist I recently went to said "When you don't sleep well you get fibromyalgia, so you need to find a way to get better sleep." Really? I didn't realize that, especially since one of the reasons I was going to the doctor was because I wasn't sleeping well and am tired all the time! I know there are a lot of good doctors out there, but some of them just seem like they're not trying...

At least I don't have to get up early for anything tomorrow. Hopefully I'll get some much needed rest tonight. What has anyone else done to combat insomnia and fatigue? 

In the beginning

I've been suffering from vulvodynia (more specifically vulvar vestibulitis) officially for four years now, although I expect I have always had it and just didn't know. I've also got depression, anxiety, and most recently diagnosed fibromyalgia! Yay! Now that I have diagnoses for most of my medical problems it would be nice to find a solution to them. Right now the depression and anxiety are thankfully under control with medication, but the fibro and VV are not. That means I'm tried pretty much all the time, my joints randomly hurt some days but not others, and my lady parts have pretty much always hurt on contact. This blog is going to chronicle my struggles with trying to treat all of these things and figure out my life in general (I'm going back to school this fall). I'm just tired of keeping all of these things in and only talking about them to doctors, my mom, and the bf, who unfortunately can't really relate. Hopefully I'll be able to connect with other women out there with similar problems and we can help each other get through it (man why is being a woman so difficult?). I'll post more on my background later but if you want to talk/whine/bitch/compare notes on these conditions you can e-mail me at bustedbajingo@gmail.com (extra props if you know where the name comes from). 

BB