Saturday, February 27, 2010

Medical Marijuana and Fibromyalgia

There is an article on CNN entitled Medical Marijuana May Help Fibromyalgia Pain that I thought I would share because of all the discussion we have had in the past few weeks about drugs and pain management… It appears to me that there are SO many of us that are truly suffering, and what medications we do have on the market to treat Fibromyalgia have inconsistent findings at best.

Lyrica, Cymbalta, Neurontin, Savella, Nortryptilene, Tramacet, Tramadol, Oxycontin, Vicodin…. these are all drugs that we are either familiar with because we have taken them, or we have researched in hopes that one of them might be the “Magic Pill” that might take our pain away…..  But ask anybody who had had experience with these drugs, and a percentage of them will tell you that they didn’t work for them…. or they worked but the side-effects were just too much to handle, and the risk wasn’t worth the reward…

In this day and age, when we can CURE diseases that were death sentences in years gone by – WHY is it that we all suffer more than we should have to, and it just doesn’t seem like we have many good options out there?

I have heard quite a bit in the last while in regards to marijuana being an effective pain management drug.  Either in pill form (such as Cesamet),  mouth spray form (Sativex), or in synthetic form (Nabilone) – there have been promising studies that cannabinoids might just be a pharmaceutical option for those who suffer from severe Fibromyalgia that doesn’t respond to other drugs on the market.

We have probably all heard of cancer patients using marijuana to improve appetite, control nausea from chemotherapy, and control pain – but there might just be some validity to using the drug to control other illnesses and diseases.

I don’t think I know enough to form an opinion as of yet, but I am researching it as much as I can.  One thing I know for sure is that I have had MANY medications given to me in the past 4 years, and I have suffered through a TONNE of side-effects, and for the most part these drugs didn’t work.  I never got to the point that I was properly ‘managing’ my pain on any of them… And I have had to suffer through Discontinuation Syndrome when weaning myself off a few of these, and the whole experience was quite frustrating AND disheartening.

I get quite frustrated at the choices I have had in medically treating my illnesses, or the lack thereof.  I am again in a position that the SIX medications I am on are not controlling my pain or other symptoms, and I am facing having to add yet another drug to my repertoire…. and it makes me angry at times…  We can land a human being on the MOON, We can create a computer that fits in the palm of your hand, We can invent a car that runs on garbage…. but we CAN’T learn how to control pain effectively….

Is Marijuana worth trying?

Will it give back a quality of life that so many people have lost?

Can you get over the stigma and association most people have with ‘dope’?

What do you guys think?

[Via http://gracefulagony.wordpress.com]

Tuesday, February 23, 2010

This article is making more waves in the Chronic Pain world?

On February 11th, I passed along an article that was published in The Huffington Post that I thought was really interesting.  It was in regards to a Doctor’s perspective of Chronic Pain after having an experience in his own life, and how it changed his thinking and the way he views chronic pain patients.

I didn’t realize when I posted this article that the response was going to be so big or so varied!!

The beauty of life, people, and the world-wide web, is that we all share different experiences, struggles, hopes, and thoughts that form who we are.  We are all different people sharing a commonality… PAIN… whether it be Chronic Physical Pain, or Emotional pain from having to watch a loved one suffer.  But that doesn’t mean we all have the same core beliefs, or share the same views.

This morning I say that the About.com Fibro & CFS site has also posted info about this particular article, and it is open for comments.  Again, from what I have read, we as Chronic Pain’ers are having varied opinions on this article.

Let me say this – I believe the word “Narcissist” in the article was used as a definition of ’sorts’ and not in the truest form of the word.  I don’t believe the Doctor who wrote this article was comparing any of us to someone who truly suffers from Narcissistic personality disorder, a very real mental disorder by true definition.  I believe the comparison was a general one, and in no way shape or form suggests that we as Chronic Pain Patients suffer from the same affliction.   It is MY own personal opinion that the only reason that the word Narcissist was used in this article was to draw a similarity to how difficult is can be at times to reach outside yourself when you suffer from pain 24/7.  I think if that word wasn’t included in the article, it would have been read differently… but again, that is only my opinion, and I respect that I may have a different view than each and every one of you.

Regardless of the WORD in question, I think it is interesting that this Doctor got a albeit limited view on how pain can disrupt lives, thinking, socialization, and can control our every move.  Obviously NOBODY can really understand what we go through, but US… My experience with pain might be different from Dominiques, or Nancy’s view for example (Hi girls, love you! :) ), but we share commonalities, compassion, and the same hope… The hope to somehow find our way to wellness, even though our journey might be different.

This man’s journey as well is different from ours… He has suffered from a serious form of cancer, and obviously life-changing in its own right.  He admits to only imagining what it would be like to have unending pain, and he himself clung to the fact that his pain was short-term.  But he felt better for going through this experience, because it gave him a source of compassion that he may never have had for pain patients without going through HIS journey.

Again, this is only my opinion, and I completely respect if it is not your own.  I just wanted to share it, because this article has caused a lot of conversation, and I think it might have caused some misunderstanding.

I have a great deal of respect for everyone who struggles with pain everyday, no matter the cause, the intensity, and the way it impacts individual lives.

And I for one am honored to be a part of an accepting and loving community.

[Via http://gracefulagony.wordpress.com]

Saturday, February 20, 2010

The Wind Beneath My Wings

Yikes, I haven’t had a week like this in a long time, August to be exact.  I’ve felt like shit for eight days in a row, having bad headaches every day, four migraines, massive stomach problems daily, and severe chest pain off and on (don’t worry, it’s on the right side side, which is actually common for Fibromyalgia, as it is muscle pain) and I’m horrified to realize that my Fibromyalgia and all the lovely things that accompany it is back in my life with a vengeance.  I’m so frustrated, because I work hard to keep myself on an even keel as far as my activities go to keep my Fibromyalgia in balance.  And, I’ve been having a good couple of weeks in the life department, so I know it isn’t life stress.  I started working as a volunteer at two new places (I have a third volunteer job that I work at, too) and two weeks ago I was in training nearly every day.  I think it put me over the edge, trying to force all this new and quite hard information into my brain fast and dealing with so many new people.  I came home from this past Tuesday and had a severe migraine, and I’m convinced it was because I had to deal with another volunteer who was so opinionated and stupid she actually gave me the migraine.  I’m not going into details, but let me say she comes dressed in an expensive suit to a non-profit where the CEO was wearing jeans.  Then she doesn’t do any work, which is hilarious to me.  But that is the tip of the iceberg and I don’t want to go off and a rant. 

Having spent many days around stupid people in the past at my former job, I’ve learned that interacting with stupid people actually is a migraine trigger for me, as hilarious as that sounds.  I just can’t handle them physically, which is funny in a way.  You’d never know it in person, because I am a master of patience and remaining calm.  But once I get out that door, my head and body is about to explode, and it isn’t pretty.  I just hate it, I wish that so many things didn’t bother me.  I used to be a little bit easier going, tolerant, but Fibromyalgia makes me sensitive to everything, and not just actions.  Pitch of voice, fabric, sensations, oh, how the list goes on.  I can’t wear certain types of clothing, I don’t like to be touched in certain places (No, not naughty ones, get your mind out of the gutter, lol) and cold and heat both the hell out of me.  If my husband squeezes my shoulder I scream in pain, because it actually hurts that bad.  It is so weird, and I hate being this way.  All you can do is learn to recognize the triggers and try to avoid them if at all possible.

At the same time, my thyroid medication had to be adjusted, because I’m in a major hypothyroidism stage right now.  I thought I felt exhausted, but I just contributed it to stress and my insomnia which was bad last fall and January.  I have to take Synthroid for the rest of my life and after taking it for two months, I left my bed and never got back in it.  Amazing what hormones can do for a person.  My doctor didn’t want to put me on a higher dose, because she knows I haven’t been sleeping much, but she had to otherwise your heart gets affected.  I’m just glad because my stupid goiter and thyroid nodule didn’t get much bigger this year.  All I know is that I spent nearly two years trapped in my bed after work and on weekends before someone sent me to an Endocrinologist, and my life has changed for the better because of Synthroid.   

All week long I’ve tried everything to make myself feel better.  I called in sick to a volunteer job to give myself more time to relax.  I gave myself a break from blogging.  I watched a ton of movies and read only two books this week to give my eyes a break.  I even drank cherry coke daily (even though I had to give up pop in 2008, I still cheat when my head hurts, because it does make it feel better) and yesterday afternoon I enhaled three Crispy Cream donuts in one sitting and made me husband give me a bite of his, too.  Nothing really worked except the coke and donuts, but I don’t want to start gaining weight again.  I can’t eat like that all the time nor I don’t plan to.  But I’m not willing to go on a daily medication for my Fibromyalgia, either.  I’ve tried most of them, and only Lyrica worked, but it made me go blind.  I was actually driving both times my sight went black and I was as terrified as when I was caught driving in a sand storm in Vegas on the strip back in 1996.  No thank you.  I have a bottle of Neurontin (prescribed for both my Fibromyalgia and my Neuropathy pain) and I’ve never tried it, because I’m afraid to take another daily pill for the rest of my life.  I worry about side effects, although my friend told me it can give you orgasms, which sounds rather nice, but what if you are at work or with your in-laws?  OMG!  I have been mainly controlling my pain through my mind, telling myself to ignore it, and it works most of the time.  I wonder, does anyone else out there do that?  Have you been able to cope on a long term basis?  I get emails from a lot of people who ask me how I handle my pain and dizziness (I have Dysautonomia, too, both OH and POTS) without taking too many drugs.  All I tell them is that I’m on Synthroid and Vyvanse for my ADHD and Fibro Fog.  The Vyvanse is also a mild blood pressure raiser, and between taking it and drinking tons of water and eating salt I barely feel dizzy anymore, unless I walk uphill or up and down stairs.  It has been working since last May, but all of a sudden I’ve been hit by a tidal wave.  I can hadle the pain, but it is the stomach and headaches that are hard to deal with.  My goodness, I walk around with Degenerative Joint Disease and have seven disks in my spine that are herniated, bulged, and torn without much complaint.  And since I was on two medical leaves then lost my job last September, I know that I’m not up to my usually stress levels, meaning things are going to get worse the more I volunteer.  I just want to go back to semi-normal (Well, normally, but I realize this is impossible, so I’m settling.) and I hope it is possible?  Anyone have any tips?  I’m not into buying supplements or drinking certain juices, as the expert I saw in Fibromyalgia says they don’t work.  With him being the expert, I certainly believe him. 

I took this picture at a zoo in Ohio, of all places.  I’ve seen a real eagle before in flight, at the Grand Tetons, but never close enough to get a good shot like this one.  It took me forever to get this picture this way, I had fence marks that had to be replaced, as the poor bird was on display and had a tight fence surrounding him.  This eagle may look majestic, but I doubt he is truly happy, being trapped in a cage and having people points cameras and squeak oohs and ahs around him all day.  I’d say that this eagle suffers from an invisible disease, just like I do.  He looks normal, but he’s a wild animal who can’t fly, just like me.  I wonder if his wings are clipped so that he can’t escape, or even permanently damaged?  As much as I enjoy visiting zoos to see wildlife I normally wouldn’t run into unless I was out west, I find that most animals are just laying around their cages and dens when I visit them.  They look miserable, probably because they are miserable.  Can you imagine what it is like being trapped in your bed or house all the time?  All they want to do is explore and be free, just like I want to.  I look at this picture of this magnificent wild animal and it actually makes me sad, because I see something in his eyes that I see in mine when I’m at home and sick.  He’s screaming for me to get him out of there, and of course I can’t.  But I can relate and be sympathic to his situation, and I guess I’m hoping those of you who don’t understand invisible diseases will, too, and maybe stop thinking I’m just whining.  I’m not writing this post for you, I’m writing it for me and for the other people, like me, who suffer from invisible diseases, so we know that we aren’t alone. 

[Via http://thegirlfromtheghetto.wordpress.com]

Thursday, February 18, 2010

Sensitive? Or just pissed off?

So this article about chronic pain and situational narcissism has been making the rounds on both WordPress & LJ.

I’ll be honest: I don’t agree with the article, because don’t think the author has personal experience with chronic pain and is not therefore aware of the way it can flunctuate. I also dislike the casual bandying about of the term narcissist. Which is not unreasonable, given that there’s actually such a thing as Narcissistic Personality Disorder. Those of us with mental health issues can be a little bit sensitive about labels.

Anyway, I didn’t think the article was very good, and said so over here. Some others agreed with me. None of us particularly heated–I know I said I found it infuriating, but that lasted for about five minutes. There were no epic flamewars. No tempers were lost. No names were called.

In fact, I’d forgotten all about the article until I found some comments on wordpress describing us as being FREAKED and SENSITIVE. Our legitimate, politely voiced concerns have been dismissed and the people who expressed them have been called a bit too ’sensitive’.

THAT is offensive.

Seriously–you don’t need to agree with what I’m saying, but at least grant me the basic courtesy of listening to what I’m saying instead of writing me off as ’sensitive’.

And for the record, we’re not trying to take away your right to free speech when we tell you that what you’re saying is offensive. Nobody’s taking your right to express your feelings away. The fact that you instantly bring up freedom of speech is a sign that clearly, you just don’t get it.

[Via http://jeneli.wordpress.com]

Tuesday, February 16, 2010

There is hope for Chronic Fatigue!!!

Dr. Davis here again from Vista.  Chronic Fatigue is a debilitating condition that can take years away from people…here is one such story….

“I have had Chronic Fatigue Syndrome for the past 12 years and if I had a busy day it would take me up to two days to recover!  I have also had serious chronic muscle pain, leg pain, headaches, sleep problems an inability to take walks for exercise. 

 The first thing that changed was my energy level…since the first treatment, I began to notice that I only needed to lay down mid-day for a short time to recover…rather than the 2 days that I used to need just to get through the day.  I also noticed my headaches disappeared immediately.  My muscle pain has definitely improved and I use much less prescription pain killers.  My body feels “smooth” or at peace all over after an adjustment…wonderful!

 I would encourage anyone to come see Dr. Davis.  Especially anyone like me that has had long standing chronic health issues, don’t believe your body will stay the same and/or continue to deteriorate…there is great hope!!!  The most enjoyable part of Breath of Life is the true, genuine and tender concern for the patients which you experience the moment you first step into the office and it never quits.  Dr. Davis is a true Godsend and I am privileged to have him for my Doctor.” 

Mary M.      San Diego CA

[Via http://nuccadoctordavis.wordpress.com]

Sunday, February 14, 2010

one of those days

Hello all this morning started off good I even had got some cleaning done. When Joe got off work we tried to go shopping. We started out at K-mart and didn’t find anything, from there went to wal-mart it was to packed to even try to shop. Why is it everyone waits till the day before Valentines day to go shopping? Then I took him and all three kids out to eat. They decided they wanted kfc. Ewe not one I would have chose but I go along with it and didn’t complain. (Giving self a pat on the back) Joe then decides to go to capitol, which is a music store. We walked in I lasted a whole 5 minutes in there and had to go to the van why he looked for his cds he wanted. They were burning incents in there and the smell gave me a instant headache and made me sick. What a lovely affect and this is the only music store in town. I hate the fibromyalgia symptoms and the way it affects me sometimes. Now the headache has moved to my jaw which makes for a lovely night. Hope everyone is having a good day.

[Via http://jensdailylife.wordpress.com]

Saturday, February 13, 2010

Contribution of Alcohol in Depression

Many studies and researches have already proved that intake of alcohol contributes to the encouragement of depression. There are general herd ways alcohol contributes to depression. Here is an explaining on convinced factors that helps alcohol in contributing to depression.

A neurotransmitter test is the best way to identify and correct neurotransmitter imbalances before they become authoritarian enough to cause symptoms such as Depression, Fibromyalgia.

Increased risk in support of depression and suicide is much publicized but probably bloody.

For several patients it is mildly annoying, in support of others it can be very distressing, withdrawal and depression and suicidal ideation.

There are a number of reported suicides and suicide attempts in people taking isotretinoin; however, the connection between isotretinoin and suicide or depression is not known.

Removing buffalo hide layers to halt wrinkles or alternating depressions is an high-spirited way to regain smoother, more youthful looking buffalo skin.

Further Readings

Depression, Elaine Fantle Shimberg, 1996

Children of the Great Depression, Russell Freedman, 2005

How to Heal Depression, Harold H. Bloomfield, Peter McWilliams, 1996

If your adolescent has depression or bipolar disorder, Dwight L. Evans, Linda Wasmer Andrews, 2005

Depression, Steven Richards, Michael G. Perri, 2002

Depression, Edzard Ernst, 1998

Recommended Links

Depression

Living with chronic depression

Indianapolis Weight Dr

Counseling and Psychological Services

Depression

Atypical Depression

Contribution of Alcohol in Depression is filed under Depression.

[Via http://concinna.wordpress.com]

Thursday, February 11, 2010

Support groups (online)

So I take part in a few different online support groups… my primary ones being weareendo.org and wearelupus.org … I’m working on becoming more active on them again, I had been, but between being busy with the kids during the summer and the miscarriages and how my mental stuff was post miscarriages I closed in on myself. So I’m taking part more again. I also have an email group I’m in (a yahoo group, I get it delivered to me) and know of some forums. My friend Jen is currently

[Via http://autoimmunelife.wordpress.com]

Thursday, February 4, 2010

The Vicious Cycle

I have become stuck in a vicious cycle.  Stress is not only mental, it is also physical.  What your mind goes through it seems it puts your body through.  I have still not figured out how to get off this roller coaster.  But, still lies the question, when is it coincidence and when is it stress induced?

For as long as I can remember I have had headaches, stomach aches and a host of other physical pains.  Which of them are caused by mental anguish and if it’s caused by mental anguish, how do I get rid of the pains and how do I prevent them.  This seems to be a question neither I nor any one can seem to answer easily.

First I’ll talk about headaches.  I have several different ones.  I have migraines of which stress can trigger or they can have other triggers.  Some of my migraines seem to have the features of clusters but those I am not 100% sure yet.  Then I have basic tension headaches.  After that I have an usual headache that is considered a “switching headache”.  These are tougher.  The switching headache is harder to control and can make either of the above headaches even worse.  And guess what, when I’m in pain, yep you guessed it, I switch more!  Genius right?  Here’s the other fun part about headaches, doctors can’t see it.  I tell them the pain I am having, they diagnose and treat based on that.  So I always question and I also always feel like I should be able to eliminate these if I can just get my mentality under control.

Now I’ll move on to my stomach aches.  As a child I threw up almost every morning.  I had severe motion sickness as well as constant stomach pain.  About 10 years ago, I was diagnosed with GERD and put on medication daily.  This has seemed to help quite a bit.  However, every now and then, such as this week I have intense pain.  Strangely I had just been to the doctor on Monday for a sinus infection!  So again two days later I trod back off to the doctors office.  This time she has suggested something new.  She has not seen me have this type of “attack” before, but I have had them.  Often they happen when I forget my medication or when I tried to go off of it for pregnancy which I was never successful as a couple days without medication and I’m in for it.  Well, I have been on my medication and I am having yet another attack and this time it was slightly different in I have pain in my right side.  She says take this and call me in the morning if you still have pain.  Ugh!  I’ve never had this pain go away quickly so I already fear I’ll be calling.  I’ll be undergoing gallbladder studies if it doesn’t go away or if I have another attack.  It would be interesting to see a physical pain on a test.  That is quite unusual for me.

As far as a host of other pains, I have been diagnosed with endometriosis and fibromyalgia.  The endometriosis was the first physical pain I have ever seen on a test!  Well, besides like strep throat.  But as far as chronic pains, it was the first.  It had to be diagnosed as a laproscopy and I have pictures- pictures that proved I DID have pain!  A couple years later the pain returned and the doctor believed that since I’d had a pregnancy/birth that it should be “healed” but she finally did another and found it again.  Well, it’s back yet again.  I am trying a medical study to see if a drug can help the endometriosis, if not I’ll be headed for a hysterectomy to hopefully rid my body of this foreign material.  The fibromyalgia is different, it is yet another pain that I have that depends on my telling the doctor my symptoms.  I always feel crazy with this.  I’d rather have a test to show me the pain- I want to SEE my pain, not just feel it.  Maybe one day they will understand it better.

So back to the vicious cycle.  I have been stressed and now I keep having physical pains.  I have had migraines and now am having stomach pain.  I feel like it’s my fault that I’m stressed and if I could just not be stressed then I wouldn’t be in pain.  And what happens when I’m in pain, yes I dissociate.  I find myself fading in and out.  It’s how I deal with pain.  So get the cycle yet?  I’m stressed so mentally I am not doing well.  Then the physical symptoms kick in to knock me down more.  To deal with the physical pain I dissociate and my mental abilities take yet another dive.  Which yes, causes more physical symptoms which causes more mental problems which causes more physical…you get the picture.

Time will tell if my physical pain can be alleviated, I hope that it can.  But the question still remains, how to better my mental health so that my physical health is not continuously compromised.

[Via http://undercoverdid.wordpress.com]