Riding the Medical Mystery Tour is SO MUCH less fun without the Beatles.
This is her story:
Oh how I loathe going to the doctor’s office. Unless I’m loaded up with snot, like I am today. When I’m loaded up with snot, I can get something to help the snot go away. When I tell the doctor that all the snot in my head is drowning my brain, he knows what to do to help.
Any other time I go to the doctor? Well… That’s an entirely different story all together.
Over the last six or seven years, I’ve lived with non-stop pain in the lower right quadrant of my abdomen. I’ve been poked, prodded and made to drink some of the nastiest shit in creation. I’ve had multiple exploratory surgeries and damned near every narcotic known to man. I’ve received FOUR different diagnoses for that could contribute to my chronic pain (PCOS, Endometriosis, Diverticulosis and Interstitial Cystitis), but I’ve never been given any kind of permanent clue as to what can be done to stop the pain. I’ve been told that I can’t have such and such treatment for one diagnosis cuzz I’m being treated for another diagnosis. SO.MANY.YEARS. of never-ending bullshit have pretty much jaded me against much of the medical community.
Imagine my dismay to realize that it was going to start all over again.
I’ve been constantly dizzy since mid-January. Interestingly enough, it started about a week after I turned 30. I’ve had the continuous feeling that I’m on a boat and not in the “I’m on a boat mother fucker! ON A BOAT!” kind of way. (Which sucks cuzz I used to like being on boats, mother fucker. 
) Went to the doctor, who poked and prodded and couldn’t figure out a reason for the feeling, so he gave me some anti-dizzy shit and sent me on my way.
The day before Valentine’s Day, I decided to add passing out to the mix.
After many different tests, I’ve been diagnosed with Orthostatic Hypostension, which means that when I change positions (laying to sitting, sitting to standing), my blood pressure bottoms out and I wake up on the ground with no clue what happened. (Well, I don’t pass out every single time, but the potential is there.) As for the dizziness that never goes away? No clue.
I’ve had MRIs, CAT scans, heart tests… All to no avail. I get to trek on down to the University of Michigan at the end of October to see if maybe they can figure out what’s going on. So far, the only thing I’ve been able to find that fits all my symptoms has been MdDS, which apparently is very rare and can last anywhere from a few days to decades. Color me fucking excited. o_O (And just to clarify, I hadn’t been on any long trips in planes, cars or anything else, but I was INCREDIBLY stressed out due to finding out some things about my boyfriend/fiance that damned near destroyed me.)
Oh! But wait! It seems my body decided to throw another curve ball into the mix!
During all my testing to see why I’m always in pain, I was told that I’d never be able to have another child. My kidling is awesome, so while I hated hearing it, I figured that I’d at least been able to have one child, so I was lucky. Any time I was asked if I was gonna have another one, I’d always say I didn’t want anymore.
To me, it was easier to deal with the judgment of being one of those mothers than to have to deal with the looks of pity and the empty condolences from people who never had to deal with the reality of not being able to choose whether or not they could get pregnant. After six years of being told it would never happen and having all kinds of unprotected sexing with no babies, I had pretty much come to terms with it.
Except in June, I found out that I managed to get myself knocked up.
I had a miscarriage scare in my seventh week, but things seem to be moving along well now (17 weeks). The thing that sucks is that being pregnant seems to lower my blood pressure even more, which presents a challenge.
I no longer leave the house by myself. I haven’t been able to drive since February. I have to walk with a cane, so I don’t appear to be drunk from all the stumbling around I do when I walk. I have to rely on anyone who might be willing to help me get to my doctor’s appointments and hope against hope that the offer of help isn’t just an empty promise. I lost my job cuzz I can’t work without someone in the same building, just in case I happen to fall or pass out. I don’t see any of my friends for months at a time.
And though I’ll probably never say it out loud, I’m fucking depressed as hell over this entire fucking situation. (Except for the Squishy – that’s what I’m calling the baby – THAT has me over the moon.)
I feel as if I have no one I can talk to. Whenever I go to my friends or family, I can see them tune out. I’m sure they want to be there for me or whatever, but they aren’t dealing with this shit on a daily basis. They just don’t understand and I don’t expect them to.
So, I sit in my house day after day, wondering if I’m ever going to feel better. Wondering how the fuck I’m gonna manage to take care of a baby when I can hardly keep myself from walking into the wall. Wondering if I’m ever going to receive a diagnosis cuzz I really want to know what the fuck is going on.
I’m always wondering if there’s someone else out there who might be going through the same thing. Not necessarily the same symptoms, but just the whole not knowing thing. And then I wonder if I sound like a whiny bitch when I carry on about what I’m dealing with. I don’t address this on my blog, for the most part. While I have written about it a couple of times, I try not to focus on it cuzz I don’t want to appear as whiny or like I’m seeking sympathy or something. I hate to be pitied and I’m really trying to avoid seeing anyone feeling sorry for me, ya know?
Thanks for giving me a place to rant and rave. I don’t feel like I’m gonna told be told to suck it up or some such shit, though now that I’ve said that I am TOTALLY expecting to get some comments like that.
Is there anyone else who feels like they’re taking part in The Medical Mystery Tour?
Or am I really alone in this?
No, definitely not alone. Spent months last year trying to figure out what was wrong with my two boys (three weekends in one month at the emergency room with one kid’s mystery infection). Got them somewhat under control (medicated and monitored) only to realize my own long term health albatross was returning for another round. Finally got that surgery after numerous false starts.
While the pain is (mostly) gone, I’m still not entirely better. I’m completely non-functional if I sleep less than 8 hours a night, but I absolutely have to “catch up” on weekends to the tune of 12 hours. My record is the weekend I was awake only 6 hours between 7pm Friday and 6am Monday. I get migraines if I am not very careful to pace myself. I go to work, I play with the kids, and I sleep. My husband is a saint, and has taken over all my responsibilities. If this continues much longer, I may have to face the fact that this is not part of the original problem, and go back to the doctor.
I hear you about not wanting to talk about it, too. Hell, I’m tired of it; why would anyone else want to listen to me talk about it? So sometimes when the details do slip out, friends are pretty surprised, and don’t know what to say. I’m also awful about asking people for help, but we’ve had to do that more lately as we just can’t do everything.
Good luck, keep us posted.
Nope, not alone. Passed out the first time I was 15 years old. By the time I was 32 I had cat scans, MRI, and every imaginable test. Age 40 I ended up wired to computers for a week long test. Find out it was a weird combination. Number one piece sleep deprivation. I would lay in bed but not actually sleep. I averaged 3 hours of sleep each night. Sleep apnea- I would actually stop breathing when I did sleep. It has some genetic components since both my Dad and my daughter had some of the symptoms. Low blood pressure really sucks. I was also told it was all in my head. Great…If it is all in my head, why does my body hurt so much? I ended up in counseling and added PTSD. I also had cancer (surgery and nine year survivor), stomach problems and now a brain tumor. I came to the conclusion that my body hates me. I see a team of doctors. I am now over 50 and someone asked me when was the last time I felt good and rested. I never remember feeling that way. I am looking forward to hearing about squishy and your other little person. My kids were amazing and made a huge difference in my life.
Hoe.Lee.Shit. You’ve been through hell! I’m glad to hear that you’ve come through all that and I sincerely hope the tumor isn’t one that’s going to do a lot of damage. I can’t imagine having all of that happen. I often joke my body hates me and that I need a replacement, too. LOL Ya gotta laugh at it cuzz if you don’t, you’ll go out of your mind.
Actually PTSD is considered crazy but I am still laughing
It took a year of endless doctor visits, CT scans, MRIs, and debilitating dizziness and profound fatigue before my Lyme diagnosis. There are a lot of people who have symptoms similar to yours who have Lyme. And the really crappy thing is if you are really sick, your bloodwork is more likely to be negative. I just wanted to throw that out as a possibility.
Thanks for suggesting it, but I have been tested. That was actually something the first doctor I saw suggested. I guess he’d just had a patient he’d discovered had Lyme after years of trying to figure it out. The likelihood of it being Lyme wasn’t very high at the time the symptoms started, but I’m the last person to rule things out that seem unlikely, ya know? I’m glad to hear that you were finally able to figure out what was going on with you. It sucks that it took so damned long, though.
You’re not alone. I have a family member that deals with “medical mystery tour” issues. It’s no fun on her end OR on our end. It’s frustrating knowing something is wrong but nobody knows what
Oh no Hon, you are SO NOT ALONE!
Especially in the “feeling like you are whining because you just can’t explain how bad it is” part.
I’m turning 40 in a couple of weeks and have dealt with pain every day since I can remember. That’s every day, since I was a little kid. I learned very early that people get tired of hearing it. I guess I assumed that every single other person in the world also felt like their jaw-bone was made out of broken glass.
In the past couple of years I’ve finally found out what the hell it is. Who knew your jaw joint could be out of place for your whole fucking life?
Hubs asked me why I never told him it was so bad…
I did honey, I did.
But, if I had told him every time, every day, how bad, I didn’t want the love of my life to call me a whiner.
When your pain doesn’t have a physical manifestation that people can see, like House’s limp, they just don’t take you seriously.
Or that’s what I used to think.
Have a martini, on me!
I have pain in my jaw, too, and it locks on one side. Hooray for TMJ! 😛
I’ve stopped complaining about everything going on cuzz I’m tired of talking about it without having anything new to say. Like, I don’t tell anyone how dizzy I am or how much I hurt anymore cuzz I have no actual explanation. And, like I said up there, I can actually see them tune out. The other night, Greg (fiance/boyfriend/baby daddy) was on the phone with his mom and she asked how I was doing. He told her I was perfectly fine, that I hadn’t mentioned being dizzy or hurting in a long time. When I told him I wasn’t fine, that I was still having all those same problems, he just stared at me, like he was wondering if I was full of shit cuzz I hadn’t said anything. How do you just tell someone day after day that you feel like boiled shit? LOL
And dude, I am SO taking you up on that martini when I pop out Squishy. 😀
Definitely not alone. I’ve been in pain since I was 13. My hands, my ankles, my hips. I’ve had tours of doctors, needles, scans, medicines, everything except surgery (and only because I refused to be cut open so the doctor could “have a look around”). At 14 I was told that it was lyme, lupus, rheumatoid arthritis, cancer of any type, rheumatic fever, or anything that anyone could dream up as a diagnosis. I stopped asking for help. I stopped trying to find a cause and started treating my pain on my own however I saw fit. At 24 I started the Medical Mystery Tour again. The same cast of characters was ruled out… and, again, surgery to “check things out” was proposed. I declined. A year later, after a year of my husband insisting I see his rheumatologist – the one who diagnosed and treated him when no one else would – I gave in. Now we’re doing all the tests again. But he believes me. He’s the first one who believes me. He says psoriatic arthritis. We’ll see if that’s true. But he wants to make the hurting stop.
I will send positive thoughts your way. I pray your hurt goes away.
I think that has to be one of the most frustrating things about all this, other than not knowing what the hell is going on. I feel like NO ONE believes me. Well, I take that back, I’m pretty sure Greg (fiance/boyfriend/baby daddy) does, but he sees me stumbling around all the time and he’s usually here when my pain is so intense I have trouble even getting to the bathroom. Everyone else, though? Not so much. Especially doctors. I’m SO hoping that the doctors at the University of Michigan will believe me.
I hope your new doctor can figure out what’s going on and can actually help you. And thanks for your thoughts. I really appreciate it
It’s so hard when no one believes you. I know how that feels. I hope you get the treatment you deserve at UoM. If not, demand, and I mean DEMAND, getting seen at NIH. They’ll take you seriousl
Same pain as you – started in my 20′s with the wrist. Now I’m 50 and it’s every joint. Was told the same as you – every diagnosis they could think of plus a few. But I agree with your husband – psoriatic arthritis – that’s what mine turned out to be. the pain can be devastating. Hang in there.
I am not in this boat, but my habitual search for “Down syndrome” brought me here so I read.
I believe you.
ope, not alone. My sister had, well, the exact same symptoms during her college years. I think it may have extended beyond that some, but she stopped telling family about it because they’d freak out. That Hypotension bullshit was one of her various diagnoses. I also recall something to the effect of Neurocardiogenic Synchopy and P.O.T.S. Whatever that stood for. They never did figure it out, despite various hospital stays in the old-folks wings of various hospitals, but it eventually faded away on its own, thankfully. I hope yours has the same resolution, and soon, though a real diagnosis would be nice as well.
I have my own cadre of mystery conditions. Gastrointestinal problems diagnosed as Irritable Bowel Syndrome, but that really just means it’s not anything else they thought it might be. They ruled out the 2 likeliest conditions (Crohn’s or Celiac Sprue), so, voila, IBS! Treatment is not at all satisfactory. I spend about 4 hours on the toilet on an average day. Intestinal spasming also doesn’t feel very good. I’ve also had chronic joint pain in nearly every joint for the last 2 or 3 years. The latest story is that it’s probably one of 2 conditions, despite all of my tests coming back negative. :/
I know you’ve probably had a billion armchair doctors do this before, so feel free to throw the figurative rotten fruit at me, but have you ever been on gentamicin? It’s an antibiotic, and one of its nastiest and less-well known side effects is that it seriously fucks up the vestibular function in your inner ear. That might explain your dizziness.
Regardless, I don’t think you’re whining, or that it’s all in your mind.
Joint problems and gastrointestinal issues? Has Ulcerative Colitis been ruled out?
Lower right quadrant pain? Check. No appendix or gallbladder because they finally removed them to make me shut up? Check.
Taking hydrocodone everyday while on this wonderful tour? Check.
*sigh* Thankfully I don’t have the dizziness on top of the pain but I do have the pain. Check in with my GI doc next week and most likely on the the kidney/bladder guy after that as I know my pain is not GI related.
Hope you find a diagnosis soon!