Aspartame & Fibromyalgia

A couple of months ago I posted a review of a documentary about Aspartame, Sweet Misery: A Poisoned World, and all the possible issues it may cause.

Aspartame is one of the 7 foods to avoid for those of us with Fibromyalgia.  It's stated that this is because it stimulates a pain receptor in the brain, which would obviously increase pain. 

With all the proof that there is of how bad Aspartame is it's amazing that it's still allowed to be used, yet it seems like it's everyone.  Have you tried to avoid it?  It's insane.  If you want something remotely sweet and yet not extremely high in calories, it most likely has Aspartame in it.  We eat a lot of yogurt around our house and you can't find a "lite" yogurt that doesn't have Aspartame.  So, I've switched back to regular yogurt in an attempt to avoid the stuff.

On the upside, it does seem that more and more products are starting to move away from Aspartame or at least offer options, but you do have to read the labels carefully.  Some products combine multiple sweeteners and may advertised that they are sweetened with one of the newly popular sweeteners like Stevia or Splenda but they may also contain Aspartame.

I can't help but wonder if Fibromyalgia (and many other health issues) might be traced back to the "new" foods we eat.  In our society's constant effort to eat "light" on the go, are we just increasing our own pain and decreasing our lifespan and quality of life?

Related Articles:

• http://www.webmd.com/fibromyalgia/guide/fibromyalgia-the-diet-connection
• http://www.livestrong.com/article/82676-aspartame-fibromyalgia/
• http://chronicfatigue.about.com/b/2010/05/13/aspartame-fibromyalgiachronic-fatigue-syndrome.htm
• http://www.holisticmed.com/aspartame/recent.html
• http://blog.nutri-living.com/?p=375

Update on Eye Pain...

I've noticed that I haven't really noticed the eye pain in the last week or so and I couldn't help but wonder "is it connected to going off the Cymbalta".  So I googled Cymbalta and eye pain and sure enough eye pain is listed as a side effect of Cymbalta (one of those call your Dr immediately if you have type side effects), along with blurred vision and decreased vision.

I'm going to keep monitoring it for the next few weeks, perhaps the trip to the specialist I have scheduled at the end of December won't be needed.

I'm not sure how I missed this list of side effects in all my searching earlier, but it does make sense. The eye pain returned a few weeks after I got to the full dosage of Cymbalta and it seems like it's been decreasing since I cut the dosage down.  I still notice some pain but it's very slight in comparison to what it was.  It may be that it's not related at all and just coincidental... it may just be some unexplainable thing as is the case with so many Fibro symptoms.

50% off Skechers Shape-Ups

You may have read my review last spring regarding the Skechers Shape-ups, and if not you may have read others who have posted similar thoughts that the Shape-ups seem to help reduce leg and back pain for those of  us who deal with it as part of our Fibromyalgia.  If you've been considering getting a pair but were scared off at the $100+ price tag, this weekend might be the time to give it a second thought.  Through Nov. 28 they are available on 6pm.com for 50-70% off the normal retail price.  They even have the new cute Shape-up boots (which I'm considering getting a pair of).

If you are interested, you may want to take a look here.

Read my review here

Shop Skechers Shape-ups on 6pm.com

Ginger for Pain Relief?

A recent study has shown that ginger does in fact reduce muscle pain by about 25%.  I love ginger, love the smell and the taste.  I'm thinking ginger tea could be a great additive to my daily regimen.  They say that the benefits are much like that of an NSAID, which I can't take so this may be a great alternative.

Have you tried ginger supplements or just raw ginger as a treatment for your pain? Did you find it helped?



Related Articles:

• http://www.consumeraffairs.com/news04/2010/09/ginger_found_effective_for_muscle_pain_relief.html
• http://www.ayurvediccure.com/fibromyalgia.htm
• http://www.onlineathens.com/stories/052510/new_644007510.shtml

If I don't do it, no one else will

Many reports show that most of us with Fibromyalgia are "Type A"/ Control Freak / Perfectionist personalities.  Over and over at support group and online I hear "If I don't do it, no one else will" or "If I let someone else do it, I'll just have to re-do it anyway".  At some point you do have to learn to just let go.  Everything doesn't have to get done and it certainly doesn't have to get done your way.  There are many times I look around my house and feel like things would get done better if I just did them myself, or I see things that need to be done and I know I just can't do them right then.  Often, when it's something small, I will try to do it anyway just so I don't have to think about it again later.

I think the frustration of not being able to do all the things we want to do/ are used to doing is worse than any of the pains we feel.  It gets old fast.  But as Jimmy Buffet would say "Changes in Latitude, Changes in Attitude".  You've got to be able to change your perspective of how things "should" be done.  Delegate to others. Decide that things just aren't that big of a deal.  Realize that maybe your own sanity is more important than a few extra paper plates in a landfill.

Change in Meds

So after almost 3 weeks of the decreased dosage of Cymbalta, today I started Pristiq.  I've had a rough time of it the last couple of weeks.  The "swimmy headed" feeling that started a couple of months ago hasn't really gone away.  My Rheumy thinks it's related to the Cymbalta (we will see, and considering that I'm feeling it right now....).

Last week was really BAD!  I woke up either anxious or depressed almost every day.  By Wednesday I was calling my Rheumy to get him to switch me off the Cymbalta, as we'd discussed.  The only problem was he wasn't in the office on Wednesday (I forgot he's normally out on Wednesdays).  I left a message for him to call me back the next day.  On Thursday, I woke up really depressed and just didn't want to move.  Around noon I finally got out of bed only to get the charger for my phone as I realized it had died overnight.  Once I got a charge and saw that I hadn't missed any calls I tried calling my Rheumy again only to be told he was out of the office that day.  Not good.  With no other options I asked them to just have a nurse call me back.  Finally around 2:30 a nurse called only to tell me that she couldn't do anything. Yes, he'd left a note in my chart that if the Cymbalta wasn't working at 30 to switch me to Pristiq but evidently that wasn't good enough for her. I'd just have to wait and call him back on Monday.  I won't go into how pissed off she left me (she was rude and obnoxious).

Overall, I found that on the lower dose I pretty much had to wake up at least 2 hours before I wanted to get out of bed to take the Cymbalta, so that it would kick in by the time I got up, so that I could get out of bed at all.  Even then, I was still left with that swimmy headed feeling (if you've ever had an inner ear infection, that's pretty much what it feels like).  My anxiety was much higher and I've had a return of the nerve pain/ electricity thing in my arms.  Not good.

This morning I woke up at 5am freaked out after a weird dream and couldn't get back to sleep.  I was on edge when I went to bed last night and I'm still not feeling much better.  As the Pristiq is kicking in I'm feeling a bit weird.  I can't describe the feeling, but I do hope it wears off.  I hate all these meds, sometimes I wish I could just throw them all out and go without.  But, I know how bad it would be.  I miss being normal.

Handling the Holidays

The holidays are a stressful time for anyone but I think for those of us with Fibro or other chronic issues that leave us tired and stressed, the holidays just make matters worse.

In our case, the last few years we've pulled double duty on Thanksgiving day, driving an hour to have lunch with my hubby's family only to leave there and go home for a few minutes before heading in another direction to have dinner with my parents.  As usual, I forgot that anything would be different this year, why would it?  That is until my mom pointed out that I really couldn't and shouldn't try to go to both places.  That's all fine and dandy but I want to enjoy Thanksgiving with my parents.  Add to that that we will end up spending Christmas with his family and we decided it just made more sense to try to pick one this year and make it my family.

The truth is that spending the entire day with my family is less stressful than spending just a couple of hours with his family.  With my parents, it's just us and them, not a big gathering, where you are expected to carry on conversations with people you rarely ever see, meet new people, etc.  Hopefully this means our Thanksgiving (at least) will be less stressful and more enjoyable.

I think if no one else had pointed it out to me I would have tried to do both, again, and likely not been able to do either due to the anxiety and stress that would build up before Thursday even got here.  At the very least, I doubt we would have made it to my parents house after spending the afternoon with his family.

Related Post: Entertaining with Fibro

Cybalta Update.... or Downdate...

So I posted a couple of weeks ago about how my Rheumy and I had talked about the Cymbalta side effects and decided to lower my dosage of Cymbalta to see if that helped.  It hasn't.  I can't say for sure on the sweating, but it seems to have.  The flushing, I haven't noticed much lately, but the swimmy headed thing is definitely still there.  On top of the fact that those issues still remain, I'm now dealing with an increase in anxiety and depression.

I'm also realizing in the last week that Cymbalta was helping more of my Fibro symptoms than I really thought.  I've noticed a return in the last week of the "electricity" feeling in my arms and hands.  I thought that the Cymbalta hadn't really helped that since it didn't really go away till I got on the Neurontin.  However, now I'm thinking the Neurontin was just what kicked it over the top.

Wednesday morning I woke up almost in panic mode for no apparent reason.  Then yesterday (Thursday) I couldn't seem to get myself out of bed. I'd called the Rheumy's office on Wednesday but "Dr." Tim wasn't in, so I left a message.  When I hadn't gotten a call back by the time I dragged myself out of bed on Thursday I called again only to find out that he wasn't in again.  He normally isn't in on Wednesdays, but he is normally in on Thursdays.  One of the other nurses called me back and basically told me she couldn't do anything.  She read the notes he'd left in my chart about switching me to Prystique but said he needed to do it so he could monitor it, but he wouldn't be in till Monday.  This nurse has now been dubbed "Nurse Bitch" in my household.  Beyond that she felt the need to point out that he's not normally in on Wednesdays, "Um it's Thursday!"  She was completely unhelpful. 

So to explain the "Dr." Tim thing.  He's actually the RN (I think that's right, the nurses that can give meds) on staff at the Rheumatology office.  He handles all the Fibro patients and I actually only see my DR once a year (I think).  I've not actually met my current Dr yet since the Dr I originally saw there left the practice shortly after I started going there.  Tim is who I see on a monthly basis and who handles my care and, having met him, my hubby agrees that he knows more about Fibro than most Drs.  On the days he's not in the office he's teaching grad level nursing at the local university.  So, yes, I trust him more than any Dr I've ever had for anything.  He listens and when there's an issue I can talk to him about it and he tries to do something. When I bring up other potential issues he doesn't just throw them out and try to blame everything on Fibro (a big plus in my book).

The problem at this point is that I have to make it through the weekend and then hope that the new drug kicks in soon, once we get me switched.  Otherwise, this is going to be a very sucky holiday season.  I've debated just upping my Cymbalta back to the 60mg dose (since I still have plenty) and then letting him titrate me down again if he wants to switch me.  Since the swimmy headed feeling is still coming and going at about the same rate it had been, I don't know if due to the Cymbalta still being in my system at all, or if something else is causing it.

Have TMJ Disorder? Enter to win a TheraTherm heating pad from @TMJ Hope for their 30 Days of Hope giveaways for Jaw Joints – TMJ Awareness Month! Go here to enter: http://bit.ly/cJpOqp

TMJ Hope has been doing daily giveaways for TMJ Awareness month. I was just notifed that I won a Violight Mouthguard Sanitizer (which I will happily use once I start wearing a mouthguard again after the braces come off).  I'd love to win some of the Mintiva cream (and will be ordering some soon if I don't).  I got a sample a couple of weeks ago and it felt and smelled great.  That's what they are giving away today (other giveaways this week include a water pillow, Theracane & protein powder).    So go here to enter, if you are interested. 

Update with the Neurologist...

I went to see the neurologist on Wednesday.  I had a massive migraine when I got there, something that seems to be happening more and more lately.  I'd managed to work for about an hour on the computer that morning before it hit.  It happened again this morning after about 30 minutes on the computer.  Needless to say, I wasn't as focused as I'd like to have been when I saw the Dr.

I did ask him about the Pineal cyst and he said it's rather small (only 8mm) and he doesn't believe it has anything to do with my symptoms.  If I'm doing my math right (and please someone correct me if I'm not) 8mm = .8cm and the research I had done (just went back and read wikipedia) says that cysts over .5cm are considered large and could be symptomatic.  I asked him about the fact that it hadn't shown up in my previous two MRIs and he said it was small enough that it could have gotten skipped over in the cuts (because MRIs are done in sections of the brain).  I'm somewhat willing to accept this theory since I know the sections were different on this scan because of the braces.  However, (again questioning my math) 8mm is like 1/4 of an inch, still not exactly small (in my book) and it seems to me that would be more space than they would want to skip in a brain scan.

A lot of what I've read on the Pineal cysts seem to have few Neurologists knowing much at all about them and most dismissing them.  Then, quite often, situations where the person found someone who was willing to dig deeper and eventually remove the cyst only to have their symptoms go away post-removal.  I have an appointment to see a Neuro-opthamologist at Vanderbilt hospital late next month, so I'll wait and see what he says.  I'm just not sure I can take much more of this getting worse.  Especially, if the headaches continue to get worse.

I do wonder if some of this (the most recent headaches at least) is related to decreasing my Cymbalta.  I'm still getting some of the "off" feeling I was getting before it decreased.  It feels a lot like an inner ear infection.  I get a bit of vertigo and nausea when riding in a car or moving around very fast.  That's the best way I can describe it.  It's not as bad now as it was early last week (before the Cymbalta dose was reduced) so I do think it's related.  I'm going to give it another week and see if gets any better before I call my Rheumy back for a med change.  As far as the other symptoms related to the Cymbalta, I hadn't noticed the insane sweating so much (until today) and I've only had one flushing spell (although those have really decreased since the first week I had them, even before the med change).  Sometimes I just want to say "take me off all of it", but then I remember what that felt like....

Anger Increases Pain (No! Really?)

It always amazes me that they do studies to prove what (to me) seems obvious.  Anger and stress increase pain, that just makes sense to me.  Let's see.  You are angry, you are stressed you are going to hold your muscles tight, grit your teeth, etc.  Tightening your muscles is going to put your body in an uncomfortable position and that is going to increase pain.  That just makes sense.

So now that we have the obvious out of the way, what do we do about it?

I can tell you what I do to try to decrease my stress level....

1. Regular exercise.  When I'm not getting my daily walk, I feel my stress level increase and my temper gets shorter.

2. Breathe.  When I feel myself getting stressed I try to take some time to breathe deep.  Focusing on that breath (think yoga, and if you aren't familiar pick up a basic yoga dvd), takes my focus off whatever is stressing me.

3. Lay down.  It's really hard to stay angry when you are laying down.  Sure you may be anxious, angry and stressed when you first lay down but give it a try. Open your palms, lay flat on your back for 10 minutes and see if you after 10 minutes you aren't feeling better.

4. Acupuncture.  Seriously.  I had no idea if there was an acupuncture point for anxiety but one day when I was having a really high anxiety day I asked (really I was only half serious since I didn't think there was one) and sure enough my chiropractor said there was.  Turns out it's at the top of your head.  After about 5 minutes with the needle in the top of my head I couldn't even remember what I was anxious about.  Now he includes this needle with my regular treatment and I can tell the difference.

5. Walk Away.  So many of the fights we get into with those we love are just because both of us are tired and irritable, not because the thing we are fighting over matters.  Sometimes the best thing to do is to just walk away. Ask yourself, what's more important, being right or being happy?  When you think about this study and about how much more damage being angry or upset could be doing to you, you are even more likely to choose being happy.

The fact that anger/ stress/ depression increase pain is a bit of a catch-22 or circular logic.  Those things increase pain, but the fact that we are in pain and can't do what we want to be doing makes us angry/ stressed and depressed.  I think this is why medicines like Cymbalta work so well for Fibromyalgia even when anxiety or depression don't seem to be an issue.  While stress and depression may not be an issue initially taking these types of meds may actually head off the likelihood of those issues developing as the pain worsens, thus keeping the pain from increasing.

What do you do to decrease your anger or stress ?


Related Articles:
http://www.eurekalert.org/pub_releases/2010-09/w-aac092310.php
http://www.webmd.com/fibromyalgia/news/20100924/anger-increases-pain-in-women 
http://www.medpagetoday.com/Rheumatology/Fibromyalgia/22431
http://www.arthritistoday.org/news/fibromyalgia-pain-anger-sadness086.php

TMJ Awareness Month

Have TMJ Disorder? Enter to win a TheraTherm heating pad from @TMJ Hope for their 30 Days of Hope giveaways for Jaw Joints – TMJ Awareness Month! Go here to enter: http://bit.ly/asnGvP

TMJ Hope has been doing daily giveaways for TMJ Awareness month. They've had some really great items from Mintiva pain relief cream, to blenders and heating pads.  I got a free sample of the Mintiva last week and I've used it twice now and like it.  It smells great and it really does seem to help undo some of the tightness I feel in my jaw muscles as well as what I get up in the base of my neck.  So go here to enter, if you are interested.  Today's giveaway is a moist heating pad.

Survey Shows Chronic Pain Sufferers Don't Like to Discuss Their Pain

Go Figure. 

Chronic Pain Sufferers Reluctant to Discuss Pain with Healthcare Providers

I think many of us can understand why.  It seems like we start off willing to explain our pain (or to at least try to) but it's difficult when doctors ask you to rate it and describe it and this and that. How do you describe your pain? Too often we use the wrong words and our definitions don't match the health care providers definitions for the terms we use.  It took me months to discover (on my own, by accident) that what I called a spasm wasn't what is medically called a spasm, but rather a twitch. How was I to know?  Figuring that out went a long way to getting that part of my pain treated.

Then there's the rating scale.  When you live with pain for so long you learn how to turn it off, well not turn it off but ignore it.  You tune it out to a large extent (at least I do). So when the Dr asks me to rate it I may only give it a 5/10, which to them isn't that bad.  But, that same level of pain a year ago may have been a 12/10.  I think the ability to ignore the pain to some degree is all that keeps some of us sane.

We have other reasons to not talk to our health care providers (or others) about our pain.  We get tired of doing so.  We get tired of hearing the same things coming out of our mouth.  We get tired of feeling like we are doing nothing but complaining.  We get tired of thinking that others think we are just whiners or hypochondriacs.  Of all my doctors (and there are many) I am only straight-up about my pains and problems with one and that is my rheumatologist.  But, even then, I wonder about telling him things and about how he may just blame everything on the Fibro.  So far he's been really good about that.  I do have other drs tho that I just don't talk to about my pain or problems because I feel like they will dismiss it and not take me seriously.  I hesitate to go to the dr when things don't seem "right" because I feel like it will just be blown off.  "She was just here 2 weeks ago with some other issue, she can't be sick again!"  Especially, when it seems like tests always come back negative. So it becomes easy to just blow things off as "just the Fibro".

We do have to talk about it though, especically with our health care providers.  And, if we don't feel like we can talk to certain providers then it may be time to find new ones that we feel we can trust to not judge us.  Sometimes, though, it is just us and we have to get over it and not assume that they are judging us.  If the dr is willing to look into the problems and not just ignore them then trust them and be open and honest. If they don't know all of the symptoms then how can they possibly know what to look for?  I often think I'd love to find a Dr House, but even he knows "everyone lies" and realizes that he can't get all the symptoms from the patient theirself.  He has to dig.  We should make it easier on our doctors and provide them with as much info as we can.  That means doing research and providing them with every bit of info (about our symptoms, pains, etc) that we can.  Even if we don't think it's a big deal, they need to know.  How else can they give us a real and accurate diagnosis.

Cymbalta Side Effects (or update on Sweating & Flushing & more)

I saw my Rheumatologist today for the first time since some of my latest "symptoms" have developed.  I told him about the excessive sweating and the recent facial flushing.  He said that both of those are very common side effects of Cymbalta.  I also told him about the recent drowsiness and light-headed feeling I've been dealing with the last few weeks.  I initially thought this might have been related to my forgetting to take my Cymbalta but it's continued even after it should have resolved if that was the cause.  It's not consistent or I'd think it was an inner ear issue.  In telling him about this issue today he said that also may be related to the Cymbalta.

We talked about it and decided to try lowering my dosage of Cymbalta down to 30mg.  The theory is that this may still be enough to control the anxiety without the side effects.  If it's not, we'd have to titrate down to this amount anyway before switching me to a new med, so either way this is the direction we'd need to go.  We'll try this for a few weeks and see if it makes a difference.  If not, then he's going to probably put me on Pristique.

I also mentioned to him about the Pineal Cyst and he agreed that it most likely could be the cause of the eye pain and visual issues I've been having.  He seemed to have a decent grasp on it and also explained that it is easily operable (without being invasive) if it needs to be removed. This made me feel a lot better.

More on the Pineal Cyst

Still waiting for my appointment with the neurologist next week, but I can't sit and wait idly by for him to tell me what is going on, so I'm continuing to research.

http://www.livestrong.com/article/176085-pineal-cysts-symptoms-in-the-brain/
http://www.brighthub.com/science/medical/articles/34198.aspx
http://ehealthforum.com/health/pineal-cyst-t138291.html

From: http://www.wisegeek.com/what-is-a-pineal-cyst.htm

There are difficulties with moving the eyes to look upward, and irregular, jerky eye movements can occur.

The last couple of weeks I've had something new going on: excessive drowsiness.  This article was the first reference I've seen to that in relation to the pineal cyst.  Maybe it's not related. My first thought was that it was because of messing up and forgetting my Cymbalta a couple of times.  But, then it happened again yesterday after I'd been back on my regular dosage for several days.

I went ahead and decided to be pro-active and call my ophthalmologist as well. She's been seeing/treating me for the eye pain and visual disturbance.  I talked to her today to see if she thought this could be related.  She hasn't seen the MRI images yet or the report so she couldn't really say.  The upside is that this triggered me to call my neuro's office back and make sure they did get a copy of the MRI to the ophthalmologist to make sure everyone is on the same page.

I'll continue to research it until my appointment next week in hopes of being as prepared as possible with all the right questions.  I'd like to get to the bottom of this.

*Update* I saw my Rheumatologist today and told him about this finding. He agreed, right away, that this may be the cause of the pain I'm having in my eye and the visual disturbances (as well as may cause many other issues)

Review: The Empowered Patient (CNN Special)

This is a CNN special on the medical mishaps and misdiagnosis that occur when people are not involved enough in their own medical care.

The special details the stories of several people who could have avoided medical mishaps had they been more involved in their own medical treatment.  The keys are trusting your doctor, being willing and feeling that you can ask questions about your treatment and diagnosis and being willing to walk away and get a second opinion.  If you don't trust your doctor and don't feel you can tell them you want a second opinion then you should get a different doctor.

Choosing the Right Hospital: Do your research to find the best hospital to meet your needs.  This is a great bit of advice, but too often when you need a hospital you are in the midst of an emergency and can't do that research before you go.

Ask for Tests:  If you feel that more tests need to be done, demand them.  Trust your gut if you know something is wrong.

1 in 10 diagnosis are wrong!  Ask your Dr what else it could be.

Do Your Own Research: Don't wait for your Dr to tell you your options, research them yourself.

Evidently, Elizabeth Cohen (the host of the special) has also written a book about the topic of being an empowered patient, after dealing with a situation where her own mother allowed the doctor to determine her treatment without question, leading to a problem becoming much bigger because it was not diagnosed.


CNN: Empowered Patient homepage

This special makes me feel a lot better about my own situation as I've been pushing and pushing.  While my tests keep coming back with nothing (to some degree), my most recent MRI has shown something.  The doctors say it's "nothing to be worried about" but the more research I do the more convinced I am that what they've found could be responsible for a lot of my issues.  Only time (and more opinions) will show.  At this point I'm just waiting to get back in to see the dr again.

I'm looking for a copy of the book now, as I think it may be a good informative book.  I'll let you know after I read it.

Another Review on e-patient.com