Dead Ends

My pain has been especially horrible since Sunday. It was so bad this morning that I took Meloxicam and now my mouth is going to hurt for the next few days or weeks. Ugh. It didn't even help. At least I don't think it did. I was in horrible pain the entire day.

My new diet is helping some things. My skin hasn't been as itchy, and I think my acne is clearing up. Under my nails has been smelling weird lately, and I clean them a lot. I think it's the diet. I feel a little better foodwise. I found some things I can eat and I don't crave meat as much as I used to. 

The neurologist office rescheduled my EMG for 3 weeks from now. And this is after I was already waiting about a month or more for it. I was going to go tomorrow and then schedule another test. Also, he was supposed to explain results from other tests to me tomorrow. :: shakes head ::

My allergist originally told me he'll refer me to a nutritionsit and a gastroenterologist, but then changed his mind and said that only my primary doctor is allowed to give referrals, when every single doctor I've been to has given me a referral- and he even said he would. 

I also have this new pain. I'm not sure how to describe what kind of pain it is. But I had it in my chest for a long time. It started on the right side, and I always thought it might be my heart, but then it started on the left side and got stronger there. So I thought it might be my lungs or something. Now the pain starting in my upper/middle back about a few weeks ago, exactly opposite the pain in my chest. :: sigh ::

My wrists are getting worse. Much worse. I can barely turn doorknobs. I keep thinking doors are locked when they aren't. I can barely turn the knobs on the sink. My rheumotologist said it's carpel tunnel syndrome or fibromyalgia, but my neurologist said that it's definitely not CTS. I don't know anymore...

Every single doctor is attributing my symptoms to something else. I'm sick of it already. Ok, they all agree that I have fibromyalgia. But it doesn't stop at that. I'm sure I have something else too. Will I have to wait another 10 years to find out what that is, too? Will it be too late by then?

Allergies

So, I went back to the allergist yesterday and guess what? Even more problems! Surprise, surprise! As of right now, this is my full allergy list: Beef, lamb, pork, soy, halibut,  tuna, pistachios,goat milk, pineapple, histamine from fish, histamine in general. The histamine in general one poses the biggest problem. Actually, being allergic to meet and soy doesn't help either. 

The histamine allergy is one huge piece of this puzzle. Certain foods hurt me really badly- including tomatoes, eggs, cheese, acidic food, most dairy, cinnamon, chocolate, eggplant, beer and more. I was trying to figure it out for a while, and I now know that those foods are high in histamine, along with some other ones. Basically I have to go vegan, but with no soy. Oh wait, it's even worse than that. I can't eat some fruits and vegatables.

I can't have eggplant, pumpkin, sauerkraut, spinach, tomatoes, apricot, berries, dry fruits, peach, papaya, nectarine and I'm probably missing something. 

So far, this is my list of foods that I can actually eat: Whole wheat stuff, rice cake, peanut butter, honey, brown rice, oatmeal, some vegetables, some fruits. I'm not sure about beans yet. We'll see. Hopefully the list grows and/or I figure out cool new recipes. It can't be that hard, right? Right? Anybody? ... 

:: sigh :: 

I just want to figure out what else is wrong. I know that fibromyalgia and allergies are a big part of it but I'm sure there's something else. I just can't figure out what it is yet. I have an appointment with my neurologist in a week and a half. He's the only one of my doctors I currently trust. Somehow they're all awesome the first visit or two and then they turn on you. Weird. We'll see if it happens with him as well. I hope not. 

Drug Woes

So, I had a horrible reaction to the Nasonex. Upon looking at the side effects, sure enough, I saw that it matched my reaction- throat irritation and runny nose being an example. He also said that allergic reactions to Nasonex were not possible since it's just chemicals. What? One- yes it is; two- the pamphlet which came with this spray said that if you're allergic to the ingredients, tell your doctor. 

Meloxicam gave me canker sores. The doctor said it was a coincidence and those weren't the side effects for that drug. I looked it up. Canker sores were included in them. He told me to try again. I did try again. I got canker sores. Now I've been getting them a lot more often even after stopping to take it. I noticed that after stopping Meloxicam, my pain got worse when I wasn't taking it. And it remained that way. 

Now I got prescribed two more meds. I'm sure you can see why I'm reluctantant to take them. So far, anything that doctor said didn't make sense. He also said that all my symptoms are either from fibrmyalgia and the rest are from anxiety. I told him a lot of them were probably from allergies and he rolled his eyes.

Today I told him my list of allergies. He asked me how I knew I was allergic and I told him about the skin prick test. He scoffed at it. 
Um, ok?

I have to take Tramadol for a week, and then start Lyrica. 

I read that it is not advisable to take Tramadol if you have an addictive personality or if you were ever suicidal. The doctor never mentioned that. 

Also, these medications aren't safe if you plan on getting pregnant soon. I'm getting married in 2 months and plan on getting pregnant around that time. Another reason taking these meds is not a good idea. 

This doctor doesn't believe in allergies, apparently. I wonder if he believes in pregnancy. 

Allergic to Doctors

I saw an allergist today. He said we made a lot of progress for the first visit. He also told me many things that shocked me and seemed very helpful. 

My doctor told me that I don't need to see an allergist and that it won't help. He didn't want to get me a referral because he said it'd be a waste of time and that maybe later on I can try an allergist but for right now it's not a good idea.  I got my neurologist to give me a referral. 

These doctors are supposed to be good. Why do I have better advice than they do? 

Either way, apparently I'm allergic to beef, tuna, pineapple, pistachoios and soy. It's ironic because beef is my favorite food. It's also ironic because beef is the one of the only foods which does not make me sick. If I don't eat meat for more than 2 days I get very weak and sick. So it's very odd that I'm allergic to it. 

He also said that my nose is very stuffed up and in horrible condition. I mentioned my nose problems to my doctor who said that it wasn't a big deal. 

The allergist also said I have stomach problems and prescribed something for it. My doctor said that the stomach problems are part of fibromyalgia and that there's nothing I can do about them for now. 

I'm going in next week again for more tests. I have to get the food allergy tests and then the air thingy allergy test. I knew I was allergic to a lot of things, but BEEF? I wonder what other fun things they discover I'm allergic to. 

I need to be out of the country before September 13th. I was supposed to leave in July. We'll see how this plays out. 

Another Dead End

I went back to my rheumotologist today. I was telling her that my symptoms are getting worse. She responded that my pain is psychological, that it's all in my head and that there is no such thing as it getting worse. Then I asked her why she's prescribing Tramadol and Lyrica if the pain is psychological as opposed to neurological. She then stated that she never said that and went on to explain to me how it was neurological. :: rolls eyes :: You don't need to explain it to me, lady; I just *told* you that it's neurological. Why would I say that if I need it explained to me? 

She also said that my pain threshold is lower than anyone else's in the world. Uhm... ok? She did request my MRI results and they came back normal. That was nice of her. 

I don't think she's gonna be much help at this point. She told me to go to physical therapy and occupational therapy last time. This time when I told her it's getting worse, she denied it, then when she acknowledged it, she said nothing can be done except for meds. When I mentioned physical therapy, she said that's not a good idea or a good solution. Then why'd you refer me to physical therapy, lady? Something is wrong here.

She's also the second doctor who went crazy when I asked about the meds. Certain doctors get very defensive if you even hint at anything negative or concerns about the medication. Weirdos... 

It seems like I reached another dead end here. She doesn't want to give me advice, she contradicts herself and she wants to push the medicine now without discussing anything else. I do know that a lot of them get paid more if they give out meds, but come on... 

MRI Experience

First off, the people in this office were actually nice, caring and understanding for a change! 

The woman made me really paranoid when she asked if I have any metal on or in me. I triple checked but I still had that feeling that I forgot something. (I didn't) 

Oddly enough, claustrophobia is not one of my problems so that part wasn't too bad. The noises didn't bother me that much except when they became synchronized. I started getting delusional and thinking the machine is communicating with itself using Morse code. Weird. I'm very sensitive to motion, even on the bus, so I did feel the machine shaking. At some point it was shaking so much that I thought it was going to break. 

For a while I was getting paranoid that I had metal in me somewhere, through surgery when  I was little or something, and no one told me about it. I was getting so anxious that my chest, wrist and knees were going crazy and shooting up in intense pain. For the rest of today, it hurt my chest badly when I tried opening any doors or exerting myself in any way. 

I didn't like keeping my eyes closed. I like to have my eyes open so I can see if anything was about to happen. I was lying there with my eyes closed, having delusional and paranoid thoughts running through my mind the entire time. 

He also tried speaking to me through a mic. He said three or four different things. I didn't hear any of them, and I starting panicking anew each time he would speak. He sounded eerily muffled and far away. I still have no idea what he said. Oh well. 

The last few minutes weren't so bad. I was getting used to the movement and noises of the machine. Actually, towards the end, it had a calming effect. I liked it. I was able to relax, which is very rare for me. The now familiar noises and movements of the MRI machine became comforting. I actually miss it now. A lot. I wish I can crawl into one and fall asleep in there. It would probably help me sleep. 

There were a lot more thoughts running through my mind at the time, but I forgot most of them.

They gave me a little plastic box thing to keep my partial denture in. I usually use a plastic cup covered with a paper towel to store my "retainer", as I like to call it, in. 

If nothing else, at least I got a free denture holder. 

Crutches

I was getting something from my room and all of a sudden I couldn't walk anymore. I had to stay still until someone got me my crutches, which I'm happy I ended up keeping.

I hope I just pulled a muscle in my right upper thigh and that it's not something worse.

My wrists got worse too, and that's after I thought they were getting better already.

Also, I've been feeling nauseated and dizzy a lot lately too. And I've been getting headaches a lot more often.

My doctors are insisting that every single thing wrong with me is from fibro. I don't know. I just hope it's not  something worse. I'm getting an MRI tomorrow...

Neurology

It just occurred to me that I forgot to post about my neurologist visit. 

He basically said what all the other doctors have been saying, that I'm very messed up- physically and mentally. I didn't need any doctors to tell me that. He also said he'll look into sensory therapy for me and possibly a mental health therapist when I get back. Get back from where? Well, I still haven't spoken about that but I'll get to it on a different post.

He also told me that he commends me for getting out of bed every morning and doing my thing, getting stuff done, socializing, etc... I wasn't sure how to take that. On the one hand, I felt complimented; on the other hand, I didn't really think it was a choice until now. You mean I actually have the option of staying in bed all day, emotional and physical pain free?! No way!! *Ears perk up & eyes light up* I wanna stay in bed all day and do nothing!! 

I had another appointment with them to conduct a balance test, which seemed more like an eye movement test. I'll get the results when I go back for the EMG in about a month. 

I interrupt this post to bring you-- 14 envelopes from my insurance company! Yes, FOURTEEN! 14 letters, all stating approval of certain physical therapy procedures- most of which were not followed. Yes, the same PT place which told me they can do nothing more for me and it wasn't helping. Who not only did wrong techniques, but also applied for approval for completely other ones. WHAT?! Now I know where else I'm going next week.

:: sigh ::

Actually, now I'm not in the mood to finish this post. Maybe next time...

House Pain

I woke up feeling like death about an hour and a half ago. That's about 4 hours earlier than the earliest I usually wake up.

I woke up sweating. That's the first thing I noticed. Then came the pain and weakness. My feet, my back, my wrists, upper arms, shoulders, shins, ankles, heels, stomach... And my eyes were itching and burning. Then I noticed I was unusually hungry.

This is what I get for cleaning the house. One simple task that anyone else would only be in minor pain from extremely heavy cleaning.

I'm feeling a tiny bit better now after lying on the couch for a while. I'm waiting until I feel better enough to actually get up.  =/

Another Day, Another Doctor

Apparently every single one of my symptoms is from fibromyalgia. Everything. It causes everything. How is that even possible? I guess I'll post all my symptoms eventually. There are many. He did tell me something scary. He said that right now I can control it by exercising and taking meds, but when I get older it will be a curse. Scary stuff! In that case, I should take the meds when I'm older instead of taking them now and becoming immune to them...

My dentist gave me my tooth today, too.

I did some light house shopping and cleaned a little more. I didn't feel as much pain today as usual. Normally,  I would think of it as a good sign that I'm getting well, but now I know better. Fibro is not curable. Sometimes the pain lessens, but it's always there. And it's not going anywhere. And sometimes it's so bad that you can't move.

Either way, I think today should have been more productive. And tomorrow I'm off to the neurologist!

Laundry Day

Laundry day. What fun. There is no better way to destroy your feet, knees, wrists, back and shoulders all at the same time. It's even better than cleaning the house! Between doing laundry, folding it and putting it away- my body hates me; but I did it! I got home ok, but my left wrist gave out for a little while but it's working again. I put the laundry away with the wrist brace on, so it took a while. But at least I was able to today. I haven't been able to do laundry in over a month! 


I spent the entire day cleaning again. I think I made a little more progress but not as much as I wanted to. I'm going to the doctor tomorrow to tell him that I'm getting worse. And they say fibro isn't progressive... yea, ok. I'm also getting my tooth tomorrow from my dentist. I think it's been long enough walking around missing my front tooth. What do you think? 


Then on Thursday is the infamous neurologist appointment. *Gulp* 

One Room, Five To Go!

This post somehow got deleted. That's what I get for trying to post from my phone. I'm not really in the mood to reiterate. Maybe at a later date; either that or I'll just remove this post.

Bye Bye Tooth!

Well, I'm missing a tooth again. But no worries, I'm getting a new one on Wednesday. 

I have mixed feelings about my dental visit. Previously, I had been told that I need to get my fake tooth pulled out and that it would hurt a lot. Apparently, he just needed to cut the tooth out and it didn't hurt so much. Coming from me, that's pretty good.

The actual removing of the tooth only hurt sometimes at certain parts. Other things did hurt, however. And I had an incident- but that's normal for my dentist visits. 

Me: Light groan of pain. 

Dentist: I think you have to learn the difference between pain and my finger touching your mouth.

Me: But it hurts. 

Dentist: I don't believe you.

Me: That's because you can't feel it!

Dentist, while pressing on my upper gums: (Sarcastically) Ok, does this hurt?

Me: YES!

Dentist: ....

And that's when he got more "understanding" towards me and pressed lighter and stopped harshly moving my lips around. And later on, he even kept asking me if this or that hurts and was more gentle. Why do I need proof? Ugh. If I say it hurts, it hurts. And he's otherwise been a very amazing dentist. 

I have no idea why people don't believe how sensitive I am, but it's getting really annoying. Should I carry around a sign? A freakin' doctor's note? They believe me only after they hurt me. One dentist wouldn't believe that novocaine doesn't numb me.  Not only does it not work, the shot itself feels like my body is turning inside out and burning. It's the craziest feeling in the world. But they only believe me after they give me the shot 2 or 3 times and then "You were right" or "Ok, now you're just imagining the pain". 

THESE ARE SUPPOSED TO BE PROFESSIONAL DOCTORS! COME ON, GET YOUR ACT TOGETHER! =/ 

It can't be me, can it? I'm sure other people experience this too. I'm sure it's not *this* abnormal. It can't be... 

Neverending Appointments

Add sensory and perception issues to the list. I'm not sure how I didn't notice this before, but I'm starting to think that I was so emotionally damaged up until recently that I didn't notice most of the pain and oddness going on in my body. Now that I am a tiny bit less stressed, there is room for other things aside from horrible emotional pain and emptiness, which brings me to think- Damn, how much emotional pain did I experience for me not to notice some of these things?!
In other news, last week I had a dermatologist appointment. The dermatologist told me nothing is wrong with my skin and practically flew out of the room. I was too spacey/foggy to do something about it that day -- I'll get back to the spaciness/fogginess I often experience at a later time. I went back the other day and demanded another appointment. After much fighting, I got to see a different doctor free of charge. Add eczema to the list. Joy. At least that explains all the dryness and itching.

 I got kicked out of PT today. Apparently they're too incompetent to know what they're doing. They never listened to anything I said, walked away while I was doing the exercises, did the wrong exercises with me, told me they tried stuff with me when they didn't, and a lot more. I was going to tell them to switch the exercises and other stuff today but they actually told me there's nothing else they can do for me at this point instead. Ha! What great timing. I'll try a new place next week. Good riddance!

I have a dentist appointment tomorrow. My insurance company rejected the request for a a crown/bridge, but approved the request for "false upper teeth". To make a long story short, I fell off my scooter when I was 12. I fell face first, but nothing else got hurt aside from the left side of my face, my two front teeth and the left tooth next to my front tooth. I also still have a baby tooth. I might need oral surgery.

 I woke up in the middle of general anesthesia once. That was scary. Imagine screaming but no one can hear you because you're paralyzed and it's all in your mind. I also got kicked out of 3 dentist's offices for being too sensitive.

We'll see if this one will be a repeat. Wish me luck!

Forgotten Pain Freak

I experience pain. I didn't realize how much until recently, or maybe I forgot. I tend to avoid things. For example, I stutter. It's usually not a problem because I replace words I stutter on with synonyms or close-enough words; it gets complicated with proper nouns, which is when I notice the stutter, other times I forget I even have one. I guess I learned to do the same with this. Anything that hurt me, I avoided; whether it was sitting a certain way, walking a certain way, moving in a certain way, putting pressure on certain body parts, etc. I feel the pain when I absolutely have to move in certain ways. But lately it's been hurting more. Not as much as during the various doctor visits, though.

Fortunately, or unfortunately, I haven't had people telling me how to position my body or positioning my body for me. I noticed the pain a lot at my first competent doctor visit about a month ago, then noticed it even more by the rheumotologist, then by physical therapy and the x-rays.

Every single one of those doctors have asked me why I didn't notice the pain until now. Well, I did notice. In the beginning I assumed it was normal, so I just dealt it and avoided certain positions. And when I realized it wasn't normal, all the doctors said nothing was wrong.

Why did I think it was normal?

Well, a few reasons. I had no friends in real life, so I had no one to compare pain to. I never saw my online friends moving, so I didn't know that not everyone is always in pain.

Another reason is that I was very naive once upon a time ago. I assumed that everyone was in pain because people would always want the comfortable chair, run to get a seat on the bus, rushed to get inside the elevator, etc.. Instead of thinking "Wow, these people are lazy and spoiled", I just assumed their feet hurt so they didn't to sit down, their back hurt so they needed a comfortable chair and they rushed to get inside the elevator first because they couldn't take the stairs and standing around for too long hurt them as well.

While that might have been true for some people, that could not have possibly applied to almost everyone I've ever seen before.

The only thing that kept me going was my assumption that my experiences and pain were normal. And now even the doctors are acting like I'm some freak.

As I mentioned before, is it really so hard to believe that nothing got done about this before, or that when I finally did notice, no one believed me? I always knew something was wrong, something was different. I always felt like a freak. People treated me like one. I remember writing in a journal when I was 12, at a horror movie convention, that this is the only place  feel normal and safe; everywhere else I feel like I don't fit in or that I'm some circus freak. People always treated me like that. But now the doctors too?

Stop Judging

I know I'm young, you don't have to remind me. Ignorance from a common layman is to be expected, but from professionals? There is not one medical place I've been that hasn't asked me what happened to me and then sat there in disbelief when I told them that I hadn't been in some crazy accident. Then there is usually a follow up statement having to do with me needing to relax and that this amount of stress/anxiety is not normal for someone my age. They then proceed to ask me (again) what happened, but instead of asking about a physical accident, they inquire about a specific psychological event. They  can't seem to understand that it was prolonged and that I hadn't been in any accidents.

Leave me alone. Yes, I was under intense pressure, stress and anxiety from about age 4 until about 22, by which point I started getting a little better. Yes, I'm under a little bit of stress now. Deal with it. These are supposed to be medical/pain specialists. Was their degree totally useless? Did they not learn in school or through experience that, yes, it is possible for someone who is 24 to be under a tremendous amount of accumulated stress. I can understand if they said it was rare, but I can't understand when their jaws drop to the floor and their eyes roll out of their sockets. It's not *that* much of a big deal.

But then again, I never thought it was a big deal at all. So what do I know?

I do know that it is unusual when all these medical experts are in shock. Some of them have been doing this for over 20 years. It can't be *that* rare. Or can it?

Well, I guess it's unanimous. My doctor, phyiscial therapists, rheumotologist, x-ray people, they're all saying that I seem very nervous/anxious and that's probably where the fibromyalgia is from. Well, all unanimous, except for the internet which states that fibromyalgia is not psychosomatic. Which is the lesser of two evils? The Doctors or The Interwebs? hhmm....

One Long Intro

It all started on June 28th, 2012. Or maybe it was in 2008, when I first realized something was wrong. Perhaps it started in 1996, the earliest I can remember experiencing this. It could have even started as early as April 3rd, 1988. 

Who knows?


Who cares? That's not even the point. The point is that this is absolutely horrible timing. Oh, I'm not complaining. While I am happy that they finally figured out some of what is wrong with me, they could have done it a little sooner; or at a more convenient time. It's not like I didn't have enough to deal with before this whole thing started.


You're probably wondering why it took so long(or not, but I'll tell you anyway). For some reason, which I won't get into now, I thought this was all normal- but then it hit me, I realized it wasn't, and I started my long journey of disappointments.


I never did specify what I'm referring to. Well, fellow Bloggers and/or blog readers, I guess what I'm referring to is none other than pain; which brings us to the blog title, but I'll get back to that. What type of pain am I referring to? Well, all types really. You name it. We've got dull pain, sharp pain, weakness, soreness; we've got shoulder pain, knee pain, back pain and more; we've got a whole collection galore.


With that being said, I would like to invite you on my journey of aches, pains, planes, adventures and self discovery. The journey starts now; or at least the documented version if it does.


I will start at the beginning, er... middle. One fateful day in June, the 28th to be exact, I had a doctor's appointment that will change my life forever. Ok, ok. I'll stop being so dramatic. But anyway, it probably did. And so did everything else. I knew something was wrong with me- aside from mentally. Until that day, all I heard from doctors were robotic responses such as: "You're too young, just exercise more", "Well, your blood test came up negative for everything we checked for", "You're probably just stressed out or depressed. There is nothing physically wrong", among other ridiculous nonsense.


Apparently I do have something. It's not life threatening, but it's still a pain. Pun intended. And the timing is horrible. Basically, I have fibromyalgia, carpel tunnel syndrome in both wrists, scoliosis, some sort of knee problem, heavy duty anxiety- which I knew about already- and they're not done testing me for stuff yet. I needed 6 x-rays, was prescribed a compound cream, put on two medications (meloxicam and lyrica), and am now going to physical therapy 3 times a week, starting today.


I didn't start the lyrica yet. I was told it would make me really sick and it might mess with neurological stuff. I'd rather make my neurologist appointment first. So far I got referred to a rheumotologist, a neurologist, a physical therapy place, a dermatologist, and this is just for now. When this is done, I might have to go see a nutritionist and an allergist.


Physical therapy sucks. It hurts. And I don't like it.


Insurance pays for one procedure a day, along with a whole bunch of other inconvenient policies. So my next few days look like this: Painful physical therapy in the morning, X-ray after that, work after that, get home at 10:00pm, clean up a little, maybe eat some food, surf the web,and then pass out. I don't have much time for anything else.


I just finished summer classes, and I'm waiting to see if I passed my last final.  If I did, I have a Bachelor's Degree. I thought when school was over I'd have more time. Boy, was I wrong.


So, what is this "bad timing" I keep speaking of? I'm engaged; I have a wedding to plan. And on top of that, I was supposed to move to London on August 22nd, which doesn't seem quite possible now. More on that later.