Medicine, Doctors, Drive Drive Drive

I have heard of shots in trigger points, but I didn't know it is a shot of novacaine. I also didn't realize that I can't see just one or two doctors. I have to drive all over the place for the various treatments. What happened to going to one place? Washington (state) is so far kind of hard to figure out. Without money, it's been impossible. Well, maybe just annoying, but not impossible. I ran out of gas on the way to one appointment, after another appointment with a different type of doctor I got a parking ticket, food is too expensive so I pack granola bars and almonds and hope I make it home without feeling dizzy.

Why is a shot of novacaine here and there (but not everywhere it hurts) "okay" but taking vicodin that will take care of all the aches and pains isn't okay? And why is taking medicine other than opiates fine? If I take Lyrica, tramadol (which I had to stop because of an interaction with zoloft), and cymbalta (awaiting approval), which have different effects and side effects and if I ever need to stop taking one of these, I will go through serious withdrawal symptoms, but to stop taking an opiate feels kind of icky for 4 days. Vicodin was so much nicer on my body than the stuff I have to take now. Vicodin has only one side effect I don't like which is sleepiness and that goes away after a while. It even helped my IBS. My colon rarely bothers me when I take vicodin regularly.

I still think there is something to adderall for fibromyalgia. I don't know if Concerta or Vyvanse do the same thing. With adderall I ate less sugary things and more healthy things (there is a theory that yeast within the body, fed by sugar, may cause some of the fibromyalgia symptoms), my brain functioned perfectly and I was able to keep myself in a calm state when others around me might not be so calm (staying calm is Really hard in part or whole because of the pain I have to function with), and finally I moved more. I had the energy to move about doing chores or taking a walk. I was building myself back up to something that can work within society. I felt almost normal and I was working off of the zoloft (which I need to deal with the stress I feel by not being able to function properly to be a part of society). I also felt less pain and ibuprofen actually worked! Ibuprofen has been useless before and after I took adderall.

I am doing better each week with Lyrica. I'm just scared that when/if I don't have insurance any more that I will have to stop taking it, hopefully I can step down and not do it abruptly which will send me right back down to laying in bed all day unable to function. I am also worried about finding work, getting insurance through a job and having to find all new doctors. Medical professional don't treat me very well. I am building repertoire with several doctors (nurse practitioners and anyone who treats me is henceforth going to be part of the term "doctor") who either begin learning about me as if this is the first time they have heard of FM and the symptoms I deal with on purpose (which doesn't feel good to be treated this way, but it also doesn't feel good to be treated as if I am the one who knows nothing and they know it all and my thoughts don't need to even be heard) so maybe it's the norm in this state to start out cold toward patients, but it's maddening and I don't want to go through it any more. If I can't work with good doctors then I want to keep working with the system I have in place now. I'm not sure it's working out well since I have to remember so much for each doctor I see (doctor still means medical personnel in general) as well as pharmacists, if I had one doctor then I would be comfortable with the route to and from their office, I would have fewer things around me to adjust to each time I drive there and back making details about the appointment(s) easier to remember, I would use less gas therefore stressing less about breaking down, I wouldn't use so many resources within my body to function and I would need to worry less about food because I wouldn't need as much. Instead, I have to go to a pain center, I might be done seeing the behavioral specialist who helps to navigate the system within the medical groups, I have a gynecologist (understandable), a therapist, a psychiatrist, and the primary care office. I have only been to each place once or twice except for the primary office so I have more meetings and adjustments to make but this is a lot of driving. Traffic here sUcks. It can take 2.5 hours to get home when the trip should take an hour or less.

I can't wait until I am all better and I am able to work again. Because the process has taken so long...I am back where I was physically in 2006, I worked hard to get past the weird hypoglycemic feelings and I continued exercising for a couple more years until the endometriosis took over. That set me back, but a few years later the adderall helped me get back to being me. I'm tired of this back and forth and the way I have been treated throughout. I would love to be treated as an equal. When I think of respect, I think of treating someone as if I am dealing with myself and I have learned to be very kind to me. I don't have to know what's going on and I don't have to have everything fixed and finished. I need help dealing with people that treat life as if there is something wrong and everything needs to be fixed. If I die tomorrow, why would I want my last day to be filled with stress?

So I have more appointments this month and some already set for next month therefore more medicine to come. Good thing I didn't expect to be fixed by the end of this year :~)

If something stresses you out, give it to the wind.

Washington Doctors

I didn't think I was leaving a state with terrible health care for one with just bad health care. At least my bad health care is covered. I get to drive all over the place for no good reason, but it's covered. Dental is not covered, however. Maybe WA will be the new Arkansas with all the rotted or otherwise missing teeth we will have.

I guess I thought a good doctor handled health issues. Here in WA, doctors don't like treating anything other than common colds and maybe the flu, maybe some sprains but you won't get any pain medicine for the pain the sprain causes.

I don't know how to get out of this trap. Will someone please tell me about a doctor in WA that can handle the issues within fibromyalgia? I am so very frustrated with everything I have to go through. The office I have to go to doesn't treat pain -I had to be referred to the Pain Clinic, they don't treat psychiatric issues (I have a lot of anxiety because of what I have to put up with and all the people that don't think I am in or should be in the pain I deal with) -I had to be referred but the referral shouldn't have happened or something-I don't understand-but I have to see someone in the office who tells someone else about me and after a month or so I might get to see a psychiatrist for the medicine I should already have.

The pain clinic said they don't see people like me with fm and so much pain and lethargy. She also told me I need to exercise more. That is a good indication that she doesn't know the condition. If I could move I would. I am very active. I love getting exercise in any way I can make it happen. So I get to beat myself up for being in pain, for my muscles not working how I need them to work, and I get to wish none of it were here so I wouldn't have to drive to different offices so much instead of just seeing one doctor and one that gets it. To "get it" doesn't mean to understand my point of view, it can include that, but it means to be okay if you don't understand. To know the issue is there and it is real even though you haven't dealt with something like it is what it means to "get it."

I left the pain clinic and had to go back because the doctor/nurse practitioner doesn't give out the prescription. I thought it was in the paperwork she handed me. She never said to stop by the front desk. I got all the way home to the local pharmacy and had to drive all the way back to the office to get the script. Tramadol. The pharmacist said she doesn't know why the NP prescribed it because of another medication I am on. The side effect with the two can be irritability and flu-like symptoms. But that's what I need to fix, not add to. I'm irritable because of all the pain I go through which can be described as flu-like. She also said it can raise my temperature. Once again, something I need to not do. I'm already hot most of the time. I need to not heat up so I don't get migraines and so I don't retain water. (I learned this past week that my migraines might be caused by, or maybe aided by, water retention.....They go away when I stop retaining water.)

I'm not searching for narcotics and pain medicine. I'm searching for someone or a team of people that will work with me to run tests (I've brought it up but no one seems to want to double check that I do or don't have fibromyalgia). If I'm not supposed to be in the pain I am in, then why aren't we looking scientifically at my body? Why aren't we looking into how my nerves work? What about hormones and the levels at their highest and lowest? What about vitamins and everything else that should be working properly? Why don't we want to know what is going on inside me? 

I can't take it any more. I'm tired of being in pain, I'm tired of being passed off, I'm tired of going here and there to not receive help, I'm tired of not being heard and being lost in the crowd. I am unique. As a patient, I offer knowledge and collaboration that can be learned from and/or passed on. Someone please help me!

Fibromyalgia, What it Can Be Like

Here's something I'm struggling with: When people think I should do more to see them or, now that we aren't in the same state, I should do more to contact them. I try to reiterate what fibromyalgia is like and what I go through. I might not have the energy to lift my head, much less hold a conversation on the phone. I might be saving my energy to not trip over my cat and to make meals. I don't have energy to spend on driving to and fro and I don't have energy to hold a conversation. That's only one aspect of the condition. Mental fogginess means everything coming my way is too much for me to handle. I miss a lot of seemingly simple statements (verbal or visual statements). This is often taken as something else, confusion is often taken personally. Then there is the pain throughout all of the above. If it isn't pain then my muscles work like an odd mush of wanting to work but being too tired to.

This week was spent writhing in pain. I try to be normal and happy throughout the painful days, but notice that I am not married. My ex husband couldn't handle it. For some reason, happiness said I'm all better.

Why is it okay to stress me out with something that is thought to exude a welcoming want by saying I need to reach out more and do so in a guiltfull way? Do you guys really want to see me screaming and crying, though mostly sitting with a look of defeat on my face? It chases people away. It brings about a reality you don't expect. Then you need time, apparently a lot of time for some, to grasp what's going on with me, and for some reason some people completely forget that I have a disabling condition and they seem surprised it's all still happening. Now we're back full circle in this post.

Sort of a side note, I learned last week that the clinic I picked as my managed care plan doesn't treat pain. Then what's the point? So I left still in pain and I will have to be in pain for a couple more weeks. The lyrica stopped taking the pain away and now it just makes me sleepy. And today I have a migraine and nothing to take for it. I doubled up on the caffeine, but it's still there. Now I'm wiggling inside with energy but it hurts to move my head. It also hurts to keep my head still. (This post was written a few days ago and I was in too much pain to edit for publishing...I can't write this well when I am in pain.)

I "get" that it's hard to grasp. If you don't know it then you don't know what to expect, you don't know what will occur and if you don't live it daily you will forget what takes place. How, then, do I cope with people trying to guilt me into feeling bad for not contacting them and how do I cope with people that think I'm fine and, finally, how do I cope with people that think I'm not doing enough? I do everything I can to feel good and if I can't feel good then I have to practice understanding that I won't feel good despite my best attempts and I have to be okay with not feeling well in whatever way the day has in store for me. This is a lot of work. Imagine doing all of this in one day or in 10 minutes. Think about muscles not working, you want to reach your arm out for a glass of water, but your arm doesn't move. You realize your arm feels too heavy to lift. Now you have to focus all of your attention on gaining energy to move your arm to get the glass of water, but wait, you need energy to not spill it as you bring it to you (this is one reason I drink from water bottles), then you need energy to swallow the liquid and you need energy to not dribble down your chin. So you're trying not to choke while you're trying to keep the beverage from leaving your mouth the wrong way, after all, you want to take a drink, not to spit water. Now you need those arm, forearm and hand muscles all to work to get the glass back to its resting place. Then imagine you have a pain in your back while you're trying to do this seemingly simple task of taking a drink of water. There is a muscle spasming and it hurts so your reflex is to say ouch and kind of arch back and maybe bring an elbow back all in an effort to shorten the muscle so it will stop with the spasm. But the spasm doesn't stop and neither does the pain. Now you have a glass of water in your had, you don't know where the energy came from to hold it up and only water is spilled on you as you wrench back while trying to remember to breathe through the pain instead of hold the breath. That's just one explanation of what I go through among maybe hundreds or maybe thousands, I just don't know...I don't want to count it all. 


When my skin feels a sensation, it doesn't stop. It lasts from minutes to hours. I also noticed and relearned last week when I had acupuncture that my body repeats painful sensations and it adds the sensation to other areas that did not receive the stimulus. When we left the clinic, I could feel the needle going into my skin all over my body when there were less than 10 needles placed in me and I know where they were placed. The brain isn't supposed to remember pain so why does this happen? Why did I feel like I was being stuck with acupuncture needles in my shoulders (among all the other areas)?

To sum it all up, People need to learn how to not own someone else's issues. We cannot protect ourselves from challenges and we can't protect situations from being bad -"bad" is different for each person because the idea, the picture in our head, is not going to be the same as anyone else's, think of the brain like the snowflake...no two are alike. Instead of wanting things to happen as you picture them, sit back and watch things as they come, breathe and don't focus too much on your own actions, reactions and interactions. Instead, focus on other people and how they dance with you in the situation. Teach yourself how to look at situations as if they are interesting instead of thinking about how they are some how in your way. If someone is interacting with you then you must be doing something right.

Pain, Narcotics and Judgment

I don't know if I am supposed to feel this much pain shooting to various points from my hips to my head while I am taking lyrica. It is just over a week since I started taking it so I guess the jury is out on that one.

I don't have any proper pain medicine for this kind of attack. I have taken caffeine and lots of ibuprofen, 6 and 7 otc pills at a time twice this morning. I also have a migraine. I noticed a few months ago that my migraines diminish or disappear when I take mucinex as if there is fluid that needs to be drained. It really doesn't matter that the migraine is lessened because there is pain shooting through and around my head and my right eye (the side the migraine was on). I have pain shooting all over my shoulders, my back, my sides, my hips, my forehead...I've been writhing and crying wishing there isn't such the stigma on narcotics. "We don't want anyone to get addicted...," they say. Fuck you. I hurt and I can't function. Thanks, whoever started that judgment call and pushed it through to the media. Those of us that need to not be in pain are now not addicted to something that we can't be addicted to anyway because pain is sobering. Narcotics only help to aid in lessening the pain, I should probably speak for myself here -now the pain is shooting through to my fingers-, if someone is in severe pain, they still feel some pain after taking a pain medication. I can say that if I take a higher dose of a narcotic or to even double it, I am pain free, but I don't like the side effects so I don't take high doses. I specifically asked my last doctor to lower the dose after a surgery because I didn't want that amount any more. I wasn't in the kind of pain that the highest dose required. He was still frustrated with how much pain I was and am in and I think he was frustrated with the situation which was that the system was impossible for me to navigate and although I was trying to work my way through it, it wasn't fast enough for him and he dropped me from the practice. Still, purely situational, I think he was frustrated that he couldn't fix me. I'm sick of this world I live in that is full of people that need to fix something. It's usually about other people. Stop trying to fix things. Let other people be. They usually come around to wanting to know what you want and they may want to work with you, but if you don't listen to their needs, they can't be helped by you.

I didn't want this blog to become this personal, but it feels important to do so. To talk about what I am going through can help someone else. I feel a disservice is being done by putting such a judgment on medicine. Why is one medicinal class terrible and all others aren't? Medicine isn't good for the body noted by the side effects they all have so why is it okay to use this one but stay away from that one even though that one helps in ways doctors may not understand for hundreds of years.

And why is it that we can look back and see what we should have seen and we can't seem to see what we need to see now? I think if we listen to more people and include everyone's opinions without downgrading some that might be outrageous to something that we shouldn't include then we can have actual conversations about the topic and we can learn how to deal with getting upset in those conversations rather than to run from them.

I feel like I should turn my webcam on to record what I'm going through today to show my doctors what I deal with, but I fear they will still think I'm faking it. A good explanation that someone just now said to me as I answered the door, "You look winded...," she also asked if I'm going to be okay and then she asked if I was sure I was going to be okay. I said I've been dealing with this for 14 years (though I meant I've been dealing with it since I was 14, that's what the brain does when the body is in pain, it gets confused). I look winded. The pain makes me very tired so any movement has me looking like I am mad, tired, or in pain. There may be other assumptions from anyone looking at me, but those three are good enough explanations. I am very shaky so I look like I will stumble and fall. Because I don't let myself fall, do doctors and outsiders alike think I'm fine? Because my muscles will work just enough then I'm fine and I need to move on?

What Really makes me angry (what really grinds my gears) is when I show happiness, I am then lumped into the category of being perfectly fine and I need to stop faking it. I'm a happy person. I actively try to be happy. Why get aggravated with me and then take it out on me if I want to be happy in spite of all the pain I deal with? (my brain now wants to see all these words backword, I even typed a few words as if I am dyslexic). Because they don't know how to handle the looks on my face and they don't know what's coming next, while if they paid attention but left it to empathy, they would know what's coming next doesn't matter...just breathe and wait through it. I understand that it can feel like a roller coaster of emotions so I try to stay empathetic to not get upset when anyone else is upset with me, but if I am in enough pain or if I am tired enough, I can't handle the reactions of others.

I hope that, one day soon, Americans will learn how to broaden their knowledge of other cultures and of conditions debilitating and not. With this knowledge, they can have more compassion for other people's emotions either perceived or true and they might be able to interact with strangers in kinder ways. Right now those strangers are in their way. Also, with this knowledge, they might see that it's okay if they don't measure up to the standards they placed on themselves. One day, Americans will learn how to help others. Until then, I have to deal with this pain and stay secluded in this house unless I want to writhe, yell and cry in public. I did my best to not show the pain so other people wouldn't be afraid of me. I made good friends, too. But now I can't leave the house, I can't walk or drive, because it takes too much energy and without pain medicine I don't have that energy.

Lyrica

I've only been on lyrica for a couple days, but I have the weirdest thing. I can feel the pains that come, pains that I have dealt with since grade school, they fizzle out. They come, I think about wincing and they fizzle out. I've never felt pain go away. I would ask if this is what it is like to feel normal, but I don't think people without fibromyalgia deal with odd pains minute to minute anyway. Some of them are sharp and quick, some are sharp and long lasting, some are dull and weird but they still take my attention away from what I need it on, those dull ones can be quick or long lasting. If these pains happen often throughout a day then I have sore muscles for several days to come. My whole body feels bruised. It's all so very tiring. But for a couple days now, the pains have been stopped. It's exciting to know what it feels like to have pain go away.

I just hope the doctor can get the insurance company to cover it. We paid for a 15 day supply so I'm not sure what the point is in taking it if I have to stop taking it, but I at least appreciate the lessened painful sensations.

Joke of the Week

Friend: You should look for fibromyalgia support groups

Me: I have...I can't find any close by

Friend: (thinking I need support for the condition...but really I support everyone I know because I'm used to it and they aren't) There's got to be something...I started laughing at this point

Me: It's fibromyalgia! We wouldn't be able to guarantee set meeting times much less that we would definitely have a leader for the group and the members probably wouldn't be able to make it...we'll do it by video chat!

I'm not working on starting a support group...it was just a funny idea