I'm Not Down for the Count Yet

Again, side-lined by fibro. Lol.

It seems that by taking the Concerta daily, it loses it's effectiveness, as people with fibro tend to have a weird side-effect of acclimating to meds much much faster than normal people, which is why I tend to have to switch medications and up dosages so frequently.

So I only take the Concerta sparingly, and it REALLY gives me energy, though it kinda over-does it, so that while I get a lot done, if I am not doing anything, I have nervous energy that makes me restless and shaky. :-p Still, the Concerta is great for when I need to really do things, though I DO pay for it the next day. Heh. When you have a ton of energy, or just any energy, you get excited because you RARELY had any energy at all, and you tend to over-do it, so the fibro kicks in HARD the next day.

Like yesterday, Thanksgiving Day, I prepared the meal (well, reheated it, since we bought it all from a restaurant, lol), and did EVERYTHING, since my mother was in terrible terrible pain, and today, my body is not a happy puppy. But surprisingly, it seems that my shoulders are the only part of me that's aching. It's a pleasant surprise, as I thought I would be completely useless for today. Heh.

I have been having issues with my sleep lately, and that is quite frustrating. I thought I had FINALLY gotten on a good regime, but it seems that I've either become too used to the medication, or I'm just out of whack in some other way. I'm on a new antidepressant, Pristiq, but I don't feel it works as well as others I've been on.

And I don't know if I mentioned it, but it turns out I have a mild form of bipolar, NOT clinical depression like I thought I had, and it honestly makes more sense with the bipolar diagnosis when I look back on my life. And though I HAVE become more mentally and emotionally and psychologically stable this past year, something for which I am EXTREMELY grateful and am still shocked by (I basically had to do NOTHING to change my mindset or to have it seep into every single part of my thought process and life), my mood swings STILL need to be controlled by medication at this point in time. :-p

I'm trying to limit the amount of meds I'm on, since money is tight for everyone these days, and my insurance company is a piece of shit. Yeah, they can really help out sometimes, but when they keep upping the price of everything frequently, it becomes a hassle. :-p That's another reason I have taken to taking the Concerta less often. It saves us having to pay $35 monthly for it, and plus, like I said, taking it every day reduces it's effectiveness.

The Pristiq is also a problem, costing us $55 a month as there is no generic from it, and it doesn't really help me. But at the same time, seeing my psychiatrist isn't really too great either to get it changed, as they claim we owe them $40 (the price per visit, though I pay every time I go), and the visit itself would be ANOTHER $40 on top of that $40, and we just can't really afford it right now. :-p

Ah money. The root of evil. :-p

The headache meds seemed to have started to take effect since I last wrote, though I'm taking them twice a day as opposed to once a day, so 750 mg each time instead of just a one time 1000 mg. It took my body a while to adjust to the new med routine with that, but it seems to do okay with it now. I still get random headaches kinda frequently, but not full out migraines, thank god.

I've also been recently trying to lose a bit of weight, as I know that extra weight puts more pressure on the fibro, since it's having to accommodate to handle the extra luggage, which just makes it worse. :-p Plus, due to the fibro, I haven't been exercising as much, and due to not taking the Concerta daily, my appetite has gone back up to it's normal full force. I adore food, I can't help it. ;) I like eating, and I'm not ashamed of that fact.

But it HAS encouraged me to try to exercise more. Exercising tends to help my fibro a bit, though it doesn't feel like it at first and it takes me a LOT of motivation to actually get up and DO the exercising. My basic exercising is walking the dogs with my mother, and SHE is my motivation to get up and do it. Lol. She FORCES me, which is what I need, and she's practically the only one who can guilt me into doing anything even due to my fibro, because she's in a lot of pain from other medical issues, and if SHE can get out and do it, then I mostly certainly can. ;)

I'm also trying to eat healthier, which is just good all around for my body. I've just let taking care of myself go by the wayside since the fibro hit me, just not having the energy or the will to motivate myself into keeping up with my health or my hygiene, both of which I'm slowly working on fixing.

It's a good start to getting on a healthy track to better manage my fibro without too much assistance from doctors. I do appreciate my doctors and seeing them does help me very much, but like I mentioned before, the money isn't exactly there for me to see them as often as I was before, and hopefully, my adopting a healthier lifestyle with help with some of my issues, so that when I DO get to see them, I don't need to worry as much about controlling some symptoms that I myself can fix, and we can focus on the BIG issues that DO need to be addressed. :)

Update

Sorry it's been a little while since my last post. Fibro, again. It's interesting to try to write a blog about fibro while suffering from it and being sidelined by it. :-p

To update, I'm on a variety of different meds now.

I'm not taking Lexapro anymore due to still having anxiety issues, so I'm now on Prozac which is supposed to aid in keeping anxiety in check. I'm on what used to be the highest dosage, 20 mg, but just recently, as I was told by another doctor of mine, the highest dosage has been upped to 40, and I see my psychiatrist (who prescribes the Prozac to me) and I may just talk to him about upping it.

I'm on Trazadone, which I don't know if I've mentioned before. It's an old antidepressant, but to get the full affect, you'd have to take such a large dose that you would be asleep 24/7, so it's now used as a sleep med. I'm on the highest dosage of that, I believe. I'm also on Sonata (20 mg, highest dosage), to help me fall asleep faster, while the Trazadone is supposed to help me sleep through the night. My psychiatrist had wanted me to stop taking the Trazadone because he felt the Sonata might be enough, but I completely forgot about that until last night, AFTER I had taken the Trazadone. So I'm going to start trying that tonight, even though I see him in a few days. I'll let him know then, and see if he wants to see me in like a week or two again to see how that's going or if I should get back on the Trazadone.

I'm on Keppra for my migraines, but it doesn't seem to help all that much. I mean, my headaches didn't seem as BAD as they usually were, so it seemed like the migraines are maybe dulled, but I'm still having headaches that are persistent and painful, and annoying, but not super bad like my migraines usually are. They still debilitate me and make me not want to do anything because I'm afraid to make them worse. :-p So I might be changing that med when I see my neurologist later this month.

I'm also on a med called Librax (generic Clidinium) for my IBS, which is an old old med, and I'm lucky to have doctors who KNOW a LOT about meds and can help me stay on the cheaper side with older meds that don't cost nearly as much as newer ones. It says to take 3 times daily, with each meal, but for me, taking it once a day, in the morning when I take all my other meds, really helps me.

Still on the Ritalin/Concerta. Also the CoQ10. Both are supposed to give me energy, and WERE when I was taking them later in the afternoon when I woke up so late, but I've been trying to get myself back on a "normal" sleep schedule, like going to bed around 9-10, at latest 11 or 12. But I wake up early, like 7-9 or so and can't get back to sleep, so try to "doze" for a few more hours, but never really sleep. So I'm still not getting much restful sleep, which sucks. But when I take them in the morning now, I don't feel any more energetic during the day, like I did at night. It's strange, and baffling.

Still on the Lamictal, now on 200 mg (not sure if that's the highest), and don't really feel moody, so I guess it's helping?

I've also been doing a lot of growing mentally and emotionally on my own, so it's hard to tell what's meds or just my own growth. :-p Sometimes I wonder if I really need all the meds I take because I'm improving my mental state. But that's something that I will have to talk to my doctors about.

I also take Vistaril, for anxiety, occasionally, when I used to take Xanax. But I didn't want to end up addicted to the Xanax, because I was having severe anxiety a LOT and was taking more Xanax than my doctor prescribed for me to take. So this new med is supposed to be less addictive but still helps. What's strange is that I've also been having issues that seems like vertigo, which I've been diagnosed with before, and my primary tried to prescribe Vistaril to help the fluid behind/in my ears drain out so my vertigo symptoms diminish, but I don't know what HIS instructions for taking it were. :-p

I also have Meclizine prescribed by my primary to treat the vertigo symptoms, and he also prescribed me a nausea med, because I've been dealing with that too, almost every day, but I don't know if taking it every day is okay.

My fibro-fog has been SERIOUSLY bad. I'm having such cognitive issues that are frustrating and really getting to me. I can't focus, can't concentrate, can't follow even slightly complex conversations, and constantly have to ask people to repeat themselves not because I didn't hear them, but because I couldn't comprehend or process it the first time. I honest to God forget what I'm doing AS I'm doing it, and no matter how hard I try, I CAN'T remember why I was doing it. I forget what I'm saying as I'm saying it and have a hard time trying to pick up where I left off, and sometimes I can't even remember that either. I wander around aimlessly and can't remember what I'm thinking sometimes, losing my "train" so easily. I have to write myself notes only I forget about the notes completely. It's just mind-boggling. Not pun intended. Though that is pretty funny I thought of that particular phrase while writing about this particular topic. ;)

I might have to have brain scans and analysis JUST to make sure it IS fibro-fog, but even if it does end up being fibro fog, I'm kinda screwed, because I don't know if there is any way to treat this. I have been wanting to try to go back to school, starting out with online courses, and I'm not sure if I could handle it with this kind of cognitive issues.

I wish more research was being done into this particular "condition" but sometimes, it's even hard to find DOCTORS who actually BELIEVE that fibro EXISTS! Sigh. And trying to get on Disability or anything like that is almost impossible with fibro, because most "experts" the "court" will call on (since you will probably have to get to the court stage of disability filing) will deny that fibro exists or is "psychological" and "all made up" in our "heads". Because there is no "definitive" tests that PROVE fibro exists. It's pretty ridiculous.

But don't lose hope or give up. Don't EVER let fibro get the better of you. Fight it until your last breath. Because this condition is not worth letting your life be ruined. Yes, it will be hard. And yes, it will drag you down. But there are GOOD days and BAD days. And you just have to accept that and keep on keeping on.

Fibro-Fog Treatment?

Sorry it’s been so long since I’ve posted. As you could probably tell, it was due to my fibro having me feeling so low, go figure eh? Couldn’t post on my fibro blog because of my fibro. Heh.

As to my last post, I have yet to try the CoQ10 or Mila due to medicine changes for other problems and am trying to adjust to those before throwing something else in the mix.
In addition to the Lexapro I mentioned I was taking for my depression, I also took a blood pressure medication that could also be used as a migraine blocker called Verapamil, due to suffering from intense migraines from a young age.

I was still having mood issues, so my psychiatrist put me on a mood stabilizer called Lamictal, which I had to take time to adjust to, but which has done wonders to help me. But then, unfortunately, my Verapamil quit helping me after me taking it for over two years and it controlling me headaches completely that entire time, so I’ve been switching around on meds for headache blocking for the moment, and trying to find one that doesn’t cause adverse side effects that were like the conditions I had/have (such as depression and such), so I’ve had to put off adding even more stuff to the mix so that I’ll know if something actually helps me while I’m taking it.

But in an interesting development med-wise, I saw a segment on 60 Minutes about college kids who were taking Ritalin and Adderol, the ADD/ADHD meds, in order to help them focus for studying and taking tests and such, and it got me thinking that if normal people who don’t have those conditions are taking these meds and are able to function, could they help someone with fibro who suffers severely from fibro-fog?

Fibro-fog, which I don’t think I’ve mentioned before, is where you can’t focus or concentrate, either due to lack of energy or exhaustion, or some other unknown reason that’s because of fibro. It’s why a lot of people can’t handle school and work. We can’t remember things or forget what we’re doing while during it and can’t follow conversations or thoughts and are spacey and flighty and absent-minded, in ways we didn’t used to be.

And for someone like me, who used to do really well in high school, having this part of fibro has been especially hard for me, because I was so good in school. I feel like I’ve lost a part of my intelligence in not being able to have the deep conversations and intelligent conversations because I just can’t concentrate or even think long enough to have these kinds of convos.

So I decided to be my own science experiment, and try Ritalin to see if it would help me in dealing with fibro-fog. I’ve been on it about a week or so, and so far I’ve noticed that it gives me more energy and I tend to be restless and more talkative and wanting to be up and doing stuff, as opposed to just lying around all the time.

But as to concentration and focusing, it’s more difficult to determine if it’s helping because the Ritalin is also causing me some sleep issues because I’m taking it so late, since I don’t wake up until the afternoon due to needing more sleep than normal people because the fibro robs us of our ability to get restful sleep, no matter how much we sleep.

So I’ve been staying up later, unable to sleep, regardless of taking my sleep medications (another med I’m on because of the sleep issues caused by fibro), or just because I’m wired and not quite yet “ready” to go to sleep and feel I keep wanting to do more and more and keep pushing my bed-time back later and later. I’m hoping to start getting up earlier and taking it then and hopefully being able to go back to getting to bed earlier. Hopefully, once I start getting enough sleep, I’ll see some effect on the concentration and focus issues.

I do also try to exercise more to get the energy I have out in order to try to be able to sleep as well.

I still have pain, but it seems it’s taken a back-seat when I’m thinking more about being tired yet still having energy, though when I do feel such exhaustion, it tends to exacerbate the pain or just make it tougher for me to deal with because I just don’t have as much of the ability to deal with it mentally or physically. It’s a weird combination of restless energy and exhaustion.

But I’ll hopefully be more diligent now about keeping up with this and letting everyone know how my journey with Ritalin goes.

Supplements

I saw my rheumatologist the other day, and he is a big supporter of getting off prescription meds and trying to control fibro with health supplements. The two he has recommended to me so far have been CoQ10 and Mila.

I have tried the Coq10 for about a month, but it was expensive, like $15 a bottle, which lasted you about a month. And this new supplement that he just recommended to me, he warned me before hand that is quite expensive and has to be ordered offline, through him.

It costs $55 for a 16 oz bottle of this stuff. It is supposed to be able to help with a lot of different things, health wise, and provides a lot of important things needed by the body, like Omega-3 fatty acids and antioxidants and fiber, as well as calcium, iron, potassium, magnesium, protein, selenium, and phosphorus. It’s a seed and he recommended taking half a spoonful a day. It can be mixed with food and even cooked with, but that still seems like an extreme price to pay for this, especially when my prescription drugs actually seem to help and cost me anywhere from $7-35 (the highest being my anti-depressant).

Though I have given the Coq10 a try before, I am thinking I might try it again, for more than just one month, and try it for a few months at least to really give it a chance.

The Mila I’m still undecided about, and will have to talk to my mom about it and see what she thinks and if it’s worth it. I will keep you guys updated on the progress of both these things though.

Treatments

Today I thought I’d talk about some of the treatments I’ve tried. I’ve only been seeing a competent rheumatologist, who is usually the best sort of doctor to go to for fibro, for about a year now, so I certainly haven’t tried much, even though I’ve been diagnosed for 2 years now.

I have tried all the prescription drugs on the market currently for fibro: Lyrica, Savella, and Cymbalta. Lyrica and Savella are specifically for fibro, though in Europe Savella is used as an anti-depressant, it just hasn’t passed the FDA regulations here in America to be used to treat depression. Cymbalta on the other hand IS an anti-depressant that has been said to treat aches and pains so has been recommended as a treatment for fibro.

I suffer from clinical depression, which is pretty severe for me, as well as IBS and migraines, so I’ve been on a LOT of medication for someone so young, so I’ll probably mention some of those meds as well, since fibro usually doesn’t come alone and usually DOES include a lot of other medical issues to occur as well.

First off, Lyrica and Savella did absolutely nothing for me, and are quite expensive as well, even on insurance, as they aren’t listed as anti-depressants or such, which you usually get a break from. I personally have never met or talked to anyone that those two drugs have worked for in managing their fibro.

Cymbalta was the first anti-depressant I ever took, and I was prescribed it before I was even diagnosed with fibro. It worked wonders on my depression, but didn’t really do anything for the pain or fatigue, at least not that I noticed.

But there is a side-effect of fibro that not many people realize or know about, and it’s that fibro sufferers tend to acclimate to medication very fast, meaning that we constantly need to go up on doses to have them work or switch to other meds quite often. Don’t be alarmed if this seems to happen to you. You’re not alone.

That’s what happened to me with Cymbalta, and while on Cymbalta, I couldn’t take Savella at the same time because they are in the same class of medication, so I had to switch my anti-depressant to Lexapro, which I am still currently on. I was maxed out on the highest dose of Cymbalta, and it seemed to not be as effective as it used to be.

Because I’ve only seen my rheumatologist for about a year, and taking each medication and I had to give it a few months to see if it worked, these are the only treatments I’ve really tried so far, though they are not the last, that’s for sure.

Some doctors recommend exercise for treating fibro, but when you feel like crap all the time, you definitely don’t want to exercise, especially because it’s very easy to push yourself too far without meaning to and then you end up paying for it later in increased pain and fatigue.

But for the past few days, I’ve been doing a little bit of exercise, alternating between days of doing aerobic/low body exercises and doing upper body exercises, though I walk my dogs for 10-20 minutes every day. And I’ve noticed that my pain isn’t nearly as bad at it was before. I did really hurt myself the first day I did it and pushed myself too hard and was really hurting the next day, but I found that exercising a bit that day helped to ease the pain and stretch the muscles and ease the tension.

Though I suspected I was in a fibro-flare before hurting myself like that, which is when your pain and fatigue get worse than normal for a period of time that you have no idea how long it’ll last, and I could have just come out of it and that’s why the exercise isn’t hurting me as much because I’m taking it easy. I just have to keep it up to see if it really is helping me or is just a fluke of time concerning my flare-up.

Another treatment option my rheumatologist is changing my diet, getting rid of all things white, like white bread and white sugar and white rice and white pastas. He wanted me to use stevia instead of sugar and to avoid processed foods. Except with both my mother and I are in so much pain and so tired that we can’t be bothered to try fixing dinner, so we eat out a LOT. When you feel like you’ve been run over by a truck or beat up severely, you just don’t have the energy to cook. And eating out is definitely processed and definitely use white foods, and I need caffeine in order to even stay awake for the entire day, so I’m reluctant to try the dietary changes quite yet, though I wouldn’t mind doing so eventually.

I will definitely update this as more treatment options are presented to me and I will definitely let you know how I fare with each one and whether they provide any relief. But just remember, just because something didn’t work for ME does NOT mean it might not work for YOU, so be sure to give any and all forms of treatment that don’t seem too crack-pot a chance.

The Basics of Fibro

Fibromyalgia is a chronic pain and fatigue condition that makes your hurt and feel tired 24/7, 365. It usually affects women more than men, and usually middle aged women more than those of younger age. The pain and fatigue vary from day to day in intensity and the pain also differentiates between different fibro suffers in where it occurs, how bad it is, etc. as well as the fatigue sometimes being less than the pain in some people, which the fatigue is sometimes worse. There is no cure for fibromyalgia, and no proven treatment for it either. Treatment varies from person to person, and what works for one may not work for all.

The best way to describe my fibro is like I have the flu all the time. I ache and have sharp, shooting, throbbing pains randomly throughout my body, though generally my arms and legs and shoulders ache more than any other part of my body.

Fibro also comes with a mixed bag of other illnesses, including depression, digestive issues, headaches, anxiety, and others. There is a common myth that depression causes fibro, but in my personal opinion and experience, even when your depression lets up and you have a good day, you STILL have pain and fatigue, so while being in pain and tired all the time may make you depressed, being depressed does NOT cause fibro to occur, though it can make the pain worse because you feel down.

Fibro is diagnosed by having pain 11 of 18 tender points that doctors will press on that are located all over the body, and having had wide-spread pain for at least 3 months. There are no blood tests or other types of test to diagnose fibro, so it’s mostly relying on the tender points and the discretion of the doctor to be diagnosed.

Sleep disorders and trouble falling asleep, staying asleep, or just sleep problems in general accompany fibromyalgia. You never feel well-rested, no matter how much you sleep, and that’s the fatigue and exhaustion part of the condition.

Stress and emotional and physical distress may trigger the condition, but there is no known cause for why some people develop it and some don’t and there is no known prevention for it either.

So those are just some basics and I’ll be discussing treatment options that I myself have tried or am trying at the time, and other research done on it and it’s affect and treatments and so on.

Intro

Hello and welcome. This blog was inspired by one of my friends who gave me the idea to chronicle my journey through fibromyalgia and what it means for me and how I'm trying to deal with life at such a young age handling a chronic, uncurable pain condition that leaves me debilitated and disabled. :-p

My name is Mandy and I am 22 years old. I was diagnosed with fibro in 2008, and over the last few years have been trying to treat it and cope with it. My mom also suffers from it and was diagnosed the same year I was, around the same time.

I'll talk about fibro issues and may even have a guest blogger or two. Here's my journey and I hope it helps those who are newly diagnosed and those who are currently suffering or those who know someone who is suffering.