Driving and Disability

Meloukhia wrote Stuck, which is a post about hir experience with a panic attack whilst driving over a bridge, and the post alongside the comments got me thinking about driving in general.

I can’t drive. It never used to be a problem, but it’s rapidly becoming one.

My younger sister and brother both learned to drive as soon as they turned 17. I used to feel quite pathetic in comparison–I’ve had problems with anxiety and social phobia since I was a teenager, although it didn’t become truly bothersome until I turned eighteen. That was a particularly gruesome time, and given that I would have panic attacks at the thought of leaving the house, learning to drive was out of the question. I’ve thought about getting my provisional licence in the past, but only in a vague, wistful way–with no actual motivation to get up and do it.

Learning to drive is still out of the question. Although my anxiety problems aren’t as bad as they were (I’ve been working fairly consistently for the past few years, which is something I never thought I would be able to do), it’s still safe to say that I would not be ok with driving. Alongside my mental health issues (which I believe I would need to report to the DVLA, if I were still in the UK), I also have dizzy spells, muscle spasms and fatigue/pain issues that would make driving impractical.

It never used to be a problem. I’d find it inconvenient, sometimes, and a bit frustrating if I wanted to go somewhere on the spur of the moment, the way my brother and sister could. The way my friends did. But for the most part, I could get everywhere I needed to go by bus or train, and the journey would never take too long. I could console myself for any inconvenience with the smug thought that at least I wasn’t contributing to pollution or congestion.

Now things are a bit more complicated. I’m not well, for starters, and I’m in Australia. One thing Australia has that the UK doesn’t is space. Oodles of it. Brisbane sprawls; and my specialists are dotted all over the place.

A twenty minute appointment with my endocrinologist takes three hours out of my day. My former rheumatologist has offices on the

same street as the endo. I’d try and schedule appointments with them both on the same day, so I wouldn’t have to do too much running around. Three hours might not sound like much, but I have to take the train and then the bus to get there and back, so there’s a lot of walking and waiting involved. This wears me out fairly quickly. If I have an afternoon appointment, it’s going to be a lot more draining as I don’t cope well with the Queensland sun between 11am to about 3pm. It triggers dreadful headaches, dizziness and something that may or may not be rosacea.

The psychiatrist is only ten to fifteen minutes away by taxi, but the taxi journey is about $26-30 depending on the traffic, so it’s a twenty minute train journey, a five minute walk to the bus stop, then another twenty minute bus journey, then a ten minute walk to get there. (Up a ridiculous hill, no less. I think it’s a conspiracy–they put the mental hospital at the top of that hill to try and wear us crazies out before we get there.) I only get the taxi back, and cringe at the cost as I do so. I’m having massive doubts about doing CBT, even though I think it might do me good, because I’d need to get a taxi home twice a week and it’s just too expensive.

I haven’t started my hydrotherapy yet, because the service provider is located about an hour away. And you guessed it: I’ll have to take the train into the city so I can catch a damn bus, and go through the same rigmarole to get home. That’ll be around two hours of travel time in total, and about an hour for the hydrotherapy. Honestly, just thinking about it wears me out.

I haven’t been swimming since I made this post, because it takes about half an hour to forty-five minutes to get to the pool, and although I might be able to make it there without any problems, I’d probably need a taxi to get home and I cannot afford to keep doing that.

It would all be a lot easier if I could drive, but I can’t, and I think it would be a bad idea if I decided to learn. My partner has been thinking about lessons, but even then, how could we

afford a car? I’m only working part-time, and we have a mortgage to pay off. Also, she wouldn’t be able to drive me to appointments without taking time off work herself, and that’s not exactly ideal.

It’s getting to the point where I only go out to see a doctor, or go to work. I don’t go and see friends or participate in social activities because getting there takes time and energy that I

simply don’t have. It’s not just physically tiring, it’s mentally tiring as well–I find travelling and co-ordinating train and bus times incredibly stressful, especially if I’m on my own and going somewhere new. I’m the kind of person who gets to an airport fifteen hours before her morning flight is due to depart, just so she doesn’t run the risk of missing the plane.

I don’t know what the solution is, really. I don’t think I’m going to need to see my endocrinologist or rheumatologist quite so regularly in the future, but that doesn’t help me now, does it? I’ve never felt the lack of a car so keenly before, but right now, I really, really wish I could drive.

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

A Story of Fibromyalgia Pain "On Drugs"

All the Medicine we used, is it really good for you?

One day, several years ago when my wife was taking about 8 to 10 different drugs to control her symptoms. She took her normal doses and still was having problems going to sleep. I went to bed as normal while she was trying to deal with her daily problems of Fibromyalgia.

When you have a loved one with Fibromyalgia, your life also changes. So I routinely wake up every few hours and check on her. This one paticular night, I walked through the house turning off lights and the TV as usual. I turned off the outside front porch light to our 1st floor, in town apartment. Went through the living room and onto the kitchen and back to the bedroom.

Where could she be?

Then I looked at our bed and she was not there and thinking about it, I could not remember seeing her through the house. So I went back to the living room and she was not on the couch. I checked all the rooms and she was nowhere to be found.

I started to get a little worried and thought where could she be. Then I remembered turning off the front porch light. So I went out front and sure enough there she was and she had fallen asleep on our porch swing.

Well this wouldn’t have been a problem, it was a nice night, but we lived in the middle of town and it was 2:00am in the morning. The local bars were shutting down. Well because of side effects of some of the medicine she gained alot of weight and one of her meds would really knock her out cold.

   I could not wake her up! Well some times I was able to get her up and other times I had to leave her where I found her. I was not going to leave her out there at that hour of the night. I could not wake her up and I could not pick her up. So I ended grabbing her by the wrist and dragged her into the house. Then I covered her up and left her lay on the floor right inside the door.

I have hurt my back in the past trying to move her. I love my wife dearly and we have been married for about 27 years now. Because of stories like these we asked ourselves if “There is a way” to solve some of these problems without drugs or part of them. So www.thereisaway.ws was born.

Please click on our site here at: www.thereisaway.ws/Fibromyalgia to see some alternatives we have found to make your life a little easier!

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

Fibromyalgia - Living Your Passion and Purpose Helps To Manage the Chronic Pain

When was the last time you did something you really enjoyed?  Life is too short to be consumed by stress and chronic pain.  The bigger question is “What is your passion and purpose in life?”  If you find yourself overwhelmed by chronic pain and stress, isolating yourself, staying in bed and withdrawing from participating in meaningful tasks, I invite you to take this challenge.  The challenge is to decide that you will take an active step each day to move beyond the pain, to live life more abundantly.  An active step can be a goal as simple as getting up out of bed and out of your room for one hour if you are someone who has not been doing this recently.  Often as an occupational therapist, I work with some of my patients to achieve a simple goal such as getting up out of bed and participating in a meaningful activity outside of their room 5 days a week initially for one hour at a time.  A higher level goal may be to participate in an exercise such as yoga or another low impact exercise 3 times a week for 30 minutes at a time.  As always seek the advice of your physician as needed.  However, be honest with yourself and avoid giving yourself excuses as to why you cannot do this, that or the other thing or anything for that matter to actively manage your stress and chronic pain. 

Another goal may to be to get some helpful and motivational books or CDs and commit to reading or listening to them for 15 minutes a day.  I have been so encouraged and challenged by some absolutely great speakers and authors over the last several years.  For me, it started when I attended a “Get Motivated” seminar.  From there I have been inspired by Jim Rohn in his book/CD series, The Art of Exceptional Living and transformed by Dr. Mike Murdock and his ministry the Wisdom Center.  Of course, none of this has made me perfect, much less totally pain free.  However, my life is much more rewarding and abundant.  My husband and I completed the 40 day journey with Rick Warren’s the The Purpose Driven Life at the end of 2009.  We highly recommend this resource.  It has helped to clarify our passion and purpose in life. 

What is your passion and purpose?  My passion is to help those who are hurting physically, emotionally and spiritually.  Among my dreams is the dream to do mission outreach work in the Philippines.  The Philippines is my husband’s country of origin.  Approximately three years ago, I set a goal in my journal that by the end of 2010 my husband and I would be able to go to the Philippines with our three sons.  Our desire is to show them their culture, to meet the children they sponsor from World Vision in the Philippines and to help in the mission field.  As I write this blog, on March 9, 2010 it seems like an impossible dream with my husband having been laid off for more than a year and credit card and business debt.  However, it is because of the clarification of my purpose and passion in life and faith in God that I will not let up.  In fact, it is in knowing my passion and purpose that motivates me to get up out of bed at 5:00 am some mornings, when I wake with a screaming headache and feeling like a “Mack Truck” hit me in my sleep, to take steps to actively manage my pain.  For me, I found it more helpful to get up out of bed, take some aspirin as needed, put on a cold gel pack and start moving.  Sometimes, I conscientiously make the effort to go workout. I go to the gym and do an elliptical machine for 40 minutes while I watch an inspirational program such as Enjoying  Everyday Life with Joyce Meyer or Wisdom Keys with Dr. Mike Murdock.  These can be very effective pain management strategies.  By far the majority of the time, the gentle aerobic exercise and inspirational programs have helped my mind and body to refocus. 

Clarity of my passion and purpose is what motivates me to go to work and keep my focus.  Research shows that it is difficult to stay focused on two things at the same time.  It is so true with pain management.  When a person is engaged in purposeful and meaningful tasks, the mind cannot stay fully focused on the pain.  When our focus is off the pain, our bodies are better able to relax and thereby assist with decreasing our pain level even more.

My question to you is what is your passion and purpose that helps you move beyond the chronic pain of fibromyalgia and/or other painful conditions?  If you do not know, then I invite you to take the active step to discover this.  If your budget is tight the libraries have great resources.  For pain and stress relieving products and articles on stress and chronic pain management please visit our website at http://LivingLifeUnlimitedLLC.com.  At LivingLifeUnlimitedLLC.com we donate 20% of our profits to World Vision to help those in need.  May God heal you and bless you richly in your journey with joy and hope.

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

Why My Yarn Looks Like My Yarn

Notice the ties.

You may have noticed that my yarn in my photos does not look as neat as others yarns available online.  There are several reasons for this.  The first is about me.  The rest is about the yarn.

First, I have fibromyalgia.  I have some days that I feel pretty good.  I have other days that are . . . well, not so good.  They undyed, commercially spun yarn I use comes in skeins , ready to dye.  It doesn’t come on cones and requiring me to wind it into skeins to be dyed.  I could purchase an electric skein winder to wind the yarn from cones.  This would save my a few cents per skein.  But the cost of the electric skein winder would add to the cost of the skeins.  So, in order to save me – and you – a little on the cost overall, and to save me potentially a lot of pain, I’m still purchasing the yarn in pre-wound skeins.  These skeins are tied with the same yarn as the skein in three places.  I usually add a nylon tie or two of my own to make it a little less likely to tangle.  My primary source is relatively close to home rather than across the country (less shipping, a little ‘greener’ and lot more economical).  This company also tries to use domestic fibers.  This is a big plus for me.  I’m picky about the softness/scratchiness of my fibers and will only offer yarns that pass my ‘next to the skin softness’ test.

Next, when my yarns go to your homes, you should receive yarns that are easy to wind into center-pull balls or yarn cakes. The less my yarns have been handled, the more likely you will receive skeins which do not tangle.  I could remove all the ties and manipulate the yarn so that it looks neat and pretty.  But I would rather handle it as little as possible between the time I hang it to dry till it arrives at your home.  I even try to twist the yarn into loose skeins rather than tight skeins so that your yarn will not be stretched or under any tension or stress while stored.  Sometimes I do twist them tighter than I really like, but it’s still not to the point that it will make your knitted or crocheted work twist or skew as you work.

If you have any concerns at all about your yarns tangling when winding into a center-pull ball, I will be happy to do that for you, free of charge.  Just let me know.

I hope you will enjoy working with  TLS Hand Dyed Yarns and Fibers as much as I do.  It is  joy for me to create the supplies you want.

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

1st half of mercury removal procedure - nitris oxide? YES PLEASE!!!

Hi All!

I’m still having a little difficulty chewing on the right side — something to be expected after someone diagnosed with fibromyalgia, chronic fatigue & TMJ had 5 mercury/amalgam fillings removed & replaced with composite!  I am pleased with De. Devening and his staff, despite the discomfort of the dental work. The procedure wasn’t as bad as one of my “normal FMS/TMJ flares” so I’m pretty impressed!  Dr. Devening gave me nitris oxide before putting a topical numbing on my gums, BEFORE injecting me with novacaine in 3 places.  He and his staff did their best to keep me as comfortable as possible, but with FMS/CFS/TMJ one is rarely comfortable to begin with — sooo.  Maybe by tomorrow or Friday my right jaw will be back to the way it was before the procedure.  I definitely like the look of the new fillings, well — the fact that you can’t see them I should say!

In 3 weeks I get to do this all over again on the left side of my mouth & it will be DONE!!! The dental work part that is — I’ll still be detoxing, but at least I won’t be absorbing any NEW mercury from my fillings at that point.  I will also receive my NTI-tss at that time — it’s a little spongy-type thingy that fits on your front teeth at night rather than wearing a night guard.  It takes all of the tension out of the muscles/tendons near the TMJ — I can’t wait to get it!  Dr. Devening’s office can tell you more about it, I couldn’t find a website on the brochure.  Dr. Devening’s number is (540) 463-2134.  His office is located at 112-A Houston St., Lexington VA  24450.  I’ve been wearing the old-timey hard acrylic “bite guard” for TMJ for over 20 years & was still waking up with my jaws hurting from clenching & grinding my teeth all night.  This will end that — YES!!!

I just cannot express in writing how excited I am to have found out about the mercury filling problem and the NTI-tss device.  Recovery is a step by step process & these 2 are huge!  To find out more about mercury poisoning you can go to www.amalgam.org/ or call DAMS at (651) 644-4572.  I believe they also have a listing of Dentists who perform the mercury/amalgam filling removal properly.  If you live within 2 hours of Lexington VA, I highly recommend Dr. Devening and his staff.

Here’s to restoring our health!

Much Love & Many Blessings,

Karla Setchel

www.KarlaSetchel.com

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

Doctors Appointment 3/3/10

I went to the doctor yesterday to let him know that the Gabapentin didn’t work out for me. This was no surprise as I’m sensitive to most medications. I brought with me a typed (two page) list of what’s been going on because I knew I would forget something otherwise. He ordered a sleep study for me, to make sure something isn’t going on there. He also is going to order an MRI to rule out MS. He doesn’t think I have MS, but with the cognitive stuff going on with me, and my balance issues (or lack there of) he wants to check and rule out anything else. He suggested that I likely have chronic fatigue as well as fibromyalgia. This isn’t a big surprise for me as I have battled with fatigue since high school and from what I’ve been reading they often go together. This would explain my extreme fatigue.

For lack of better options I have decided to go vegan again as well as gluten free. I want to try it for a month and see if there is a difference in my energy level. It’s all I can think of doing.

My doctor was optimistic, saying this all wasn’t something FOREVER…because eventually the treatments for fibromyalgia will become more affordable and they will understand the disease better. He was interested to hear that my mom had been diagnosed with it as well. I now worry about Claire who now has a predisposition for it on both sides of the family (my husbands, and mine) But maybe if I do all I can…I can learn to manage it.  In the mean time my doctor suggested I file for disability. hmmm.

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

My day... Dr's appt and Disassociation...

Hi everyone!

Ahh…. I get to sit down, check my email, and catch up with my blogging!  There is something kind of refreshing about a Monday, I get back to my usual daily rituals, and even thought the weekend is over, it is nice to get back to routine!  I am SO funny that way!  Friday is my least favorite day of the week, and Monday is one of my most favorite… is that weird?!?  I also get excited because Monday is my honey’s Friday… He has Tuesday and Wednesday off!!

A big warm hug and my thanks to everyone that wished me well and sent their prayers this morning… I really appreciate it!  You would think that going to see the Doctor would be as comfortable as a second skin by now… but I dread it.  I don’t know if I am the only one….  don’t get me wrong, I really love my Doctor… She has been in my life for over 20 years, and I feel really comfortable with her, but I really don’t like going… believe it or not ME is not my favorite subject!  Ha! Ha!  I get really tired talking about ME all the time, or rather my health… there are so many things that make up ME besides my health… but lately, pain has pretty much left no time for anything else….. So here is how my appointment went.

I met with my pharmacist first, and he had a resident sit in who was shadowing him.  I told him how bad the last few weeks have been, how bad the nerve pain has been, and what meds I have been taking, and how they have been working…. you know, the usual.  I told him that I am having a hard time managing at ALL these days, and although I am not depressed, I am sure getting frustrated! (I answer questions before he asks them, because I know that my mental health comes up at EVERY appointment!  HA!).  We spoke for a little while about the particular meds, and how I feel there is nothing that is helping my nerve pain…. he let the resident ask a few questions (Gosh, she looked kinda lost… I felt badly for her, I am not a ‘normal’ patient, and it must be hard to walk in on a conversation FOUR years the making!)….  He asked me if I felt comfortable upping one of my meds for the nerve pain… and then my Physician came in the room.  the first thing she said was…

“Jolene, YOU look so beautiful today.  You are ALWAYS so put together, and I don’t know how you DO IT because I very much understand that you are in severe pain all the time..”

um… don’t know what to say to that really… so I stumbled over my tongue and said something like..

“Well, it doesn’t take much effort to do my make-up I guess, and it makes me feel better about myself..”

She explained that she wasn’t saying that in a negative way, and she knows that I am a strong woman, and she said she is proud of me…. but then she said this…

“Jolene I am worried about you… because you come in here appointment after appointment and you are always TOGETHER… you are put together on the outside, you always have a smile on your face, and you are ‘happy’ whenever we talk about ANYTHING, but I KNOW that it is not that way on the inside all the time…. You are dealing with severe and complicated pain not to mention everything that goes with that, and it is HARD for us at times because we can’t break through the exterior… I am worried that you disassociate from your pain at times….”

And then a started to cry…

I don’t know if I do -or-  don’t disassociate… I am confused by that kind of….

She explained that it was okay to let down my guard in her office, and in front of my pharmacist, and to cry on my honey’s shoulder when I needed to, and she is afraid that I don’t do enough of that… USING MY SAFETY NET WHEN I NEED TO FALL… and now I am not quite too sure WHAT to think.

Do I build up a wall or am I on guard at times?  absolutely, I am human, and don’t we ALL do that from time to time?

Do I disassociate from my pain?  I probably do to some extent at times… I think it is a coping mechanism, because if I didn’t I would go crazy!

But I think more so than anything, I stay “put together” on the outside because I am a Mom of a precious 8-year-old boy… and he needs a strong and stable parent… and that is WHO I am to him.  Sure, he knows all about my illnesses and he copes really well with it for the most part.  He can have a conversation about Myofacial Pain and trigger points with an adult!!  He knows if I am struggling, he can identify my really bad days, even if I try to hide them, BUT he is still a CHILD, and I want to protect my child for as long as I can.

When my health, marriage, and subsequently my life all came crumbling down around me, I won’t lie, I was a mess!  I was stuck in bed for months on end, I was in an emotional wreckage…. It was truly the hardest time in my life outside of losing my brother… and I was a mess… There wasn’t much I felt like I could do as a parent.  I was either in too much pain to be present, or too devastated emotionally to connect the way I wanted to….

My son was still very much taken care of…. he still had his “mommy” and we adapted… he spent a lot of time hanging in bed with me coloring, or cuddling, or watching movies… BUT I KNEW it was not the way I wanted to parent… It wasn’t the MOM I wanted to be… and it broke my heart….every day it broke my heart, and it made me question my existance to the point where I wondered if my son would be better off without me.   I hit the bottom of the barrel, and didn’t like what I saw there…As soon as I hit the bottom, I have made EVERY choice, and done EVERYTHING in my life for the stability and security of my child….I have made the hardest of decisions, and risked life and limb to put my child first.

Maybe I have tried to overcompensate for my illness, or a failed marriage, or even day-to-day things that I physically cannot do… but I don’t overcompensate with toys, or money… I overcompensate with ME… I try to give him the very best me I can possibly give him, every moment of every day….

So I stay ‘put together’ on the outside… because that is what he reacts to…  But my Doctor is afraid that I have made into such a habit, that I am not falling when I need to.. I am not embracing the other side of this,  the vulnerable and ‘human’ side, and she feels like I HAVE to do that in order to control my pain better..

Does that make sense?

I know there is a lot of this journey with chronic pain that I protect others from – be it my Dad, my Mom, my Honey, or my friends… and especially my son, because, well… quite frankly… it SUCKS!!  And I have learned to adapt to the sucky part of all of this for the most part… I just don’t want to have the people in my life who love me impacted the way I have been.  I am scared of hurting others the way I have been hurt… I am scared of losing those I love around me… MY pain is not a variable for ME… but it COULD be viewed that way by someone else… and it has been in the past.

I have been truly heart-broken by life… I have been devastated…. but I have found a way through all of that, and learned how to pick myself up and move forward… because what other option is there?  Maybe some of that has made me keep a ’shell’ around me…

I don’t know… but I DO know that I wouldn’t still be bothered by my Doctor’s comment 8 hours after she made it IF there wasn’t a hair of truth in what she said….

Can anyone relate?

Maybe I have to be more ‘real’ about what I go through with the people I love as well as with my doctors… but the thought of that scares me…..

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

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]

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]

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]

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]

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]

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]

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]

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]

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]

A Call to Action for Fibromyalgia

A notice from the American Chronic Pain Association which might be of interest to folks (or folks who know folks) with fibromyalgia

The FibroCollaborative Roadmap for Change:

A Call to Action for Fibromyalgia

WEBCAST

February 5, 2010

12:30 pm – 1:45 pm CST

Please join the American Chronic Pain Association in listening in to an important Webcast about how we can work together to help improve the lives of people affected by fibromyalgia.

The Webcast will unveil a new Call to Action for Fibromyalgia, a comprehensive roadmap designed to prioritize and address the unmet needs of fibromyalgia in the United States.

The Call to Action is a product of the FibroCollaborative Advocacy Working Group, a Pfizer initiative in collaboration with 16 medical/professional and advocacy organizations. The Group’s focus is to improve the health and well-being of people with fibromyalgia, one of the most common chronic, widespread pain conditions in the U.S.

The Webcast will also feature new topline results from a national landmark survey on primary care physicians’ attitudes and perceptions about fibro and how it may be impacting diagnosis and care.

Join us at http://fibrocollaborative.stream57.com/february5 on February 5 for the live Webcast, which is streaming from the American Academy of Pain Medicine Annual Meeting.

For more information, visit the ACPA website.

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

Writing under the Influence

I have recently been diagnosed with fibromyalgia and chronic fatigue syndrome and what followed my diagnosis was a lot of trial and error with various medications. I have been on medications that have caused me to swell, gaining twenty pounds in a little over a month; medications that made me feel suicidal and hopeless; medications that gave me severe migraines; and medications that simply did not work. Once I realized that my deep, suicidal depression was being caused by the medications I was taking, I stopped taking them all swearing never to take medication again. What followed? The most horrific pain and fatigue I have experienced in my life. It felt similar to the aftereffects of a car accident where every part of your body hurts combined with what I can only describe as a cellular-level fatigue. My brain would tell my body to move, but my body could not oblige. It was as if my body was weighed down with lead and despite its desperate desire to move, it could not. Within two days I was sitting in my doctor’s office broken.

I have a bad history with medications. Most often they have an opposite reaction. For example, sleeping pills give me an enormous amount of energy. Prescribing medication for me can be a daunting task. My doctor was willing to take on the challenge. This time she prescribed Strattera, an ADHD medication. Though I was diagnosed with ADHD ten years ago, I had not taken medication for it since finding out I was pregnant in 2004. I really enjoyed the chaos of my ADHD mind and had a difficult time with all the focus the medication gave me. It had significantly hindered my ability to multi-task so I did not return to it after giving birth. I had not taken Strattera before, though, and, after a day of deliberation, I decided to take it. Miraculously my bone-deep pain was nearly gone thirty minutes later. The only problem was that it wore off after about eight hours. So my doctor prescribed Neurontin for the evening. It was intended to help me sleep, but it, too, gives me a boost of energy. I am still having great difficulty sleeping, but at least I am pain free most of the night. I still wake up with the cellular-level fatigue accompanied by pain and burning in my legs, but now I know I have something available that brings relief.

What does all this have to do with writing? Well, my writing has suffered since I started taking Strattera and Neurontin. Though there were many times that the pain was too severe for me to focus on writing, there were also many times that writing helped me to escape the pain. In those times, I could visually walk through the scenes I was writing about and feel the experience fully. This amazing ability has been shut down. My writing has become more analytical rather than lyrical. It is more straightforward rather than uniquely expressive. It has become more tell than show. I find myself quite often staring at the blank page creatively mindless. I can no longer conjure the images that allowed me the full sensory experience of what I was writing. Instead, I am seeing the blank page and ONLY the blank page. So, the dilemma before me now is: Do I write under the influence of pain or under the influence of medication?

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

Gluten and Inflammation - A matrix energetics / integrative manual therapy approach

When looking at the best ways to help someone with signs and symptoms related to gluten sensitivity, we have many tools to use.  First we like to get a 100% gluten free eating plan started.  The research over the past 10 years shows that if someone with an auto-immune condition, joint or bone pains, fibromyalgia and other conditions goes gluten-free, many times most if not all of their symptoms improve and can even clear completely.

One reason we think this happens is purely physiological.  The immune system cranks up and starts attacking the person when gluten is being eaten.  By taking gluten completely out of the diet, the immune system calms down and rests and the body can heal.

But another reason we like to use gluten free programs is that because so many people have benefited from a gluten free diet, because so many researchers have found it helpful and because so many practitioners have had similar results taking their clients off gluten, there is an enormous morphic field concerning gluten sensitivity.  What I mean by that is that there is information in the field so that people who “tap into” this gluten-free program benefit from the energetic field of all the people who have been part of gluten sensitivity research, treatments and eating programs.  This may be new information to you.  If it is you can read more about morphic fields at http://www.sheldrake.org/homepage.html. This is a powerful way to benefit from a gluten free eating plan.

Using Integrative Manual Therapy, the work of Sharon Giammatteo, PT, PhD, we are able to use structural and physiological manual therapy methods to help fix up the cecum (large intestine) and the other areas affected by gluten.  Also through using supplements, most notably zinc, chlorophyl and manganese B 12, along with high quality fish oils, both the structure and the function of the GI tract can regain health.

This Integrative Manual Therapy (IMT) approach used to take many hours to fix up a colon ( GI tract)  and was mostly useful if a client agreed to a 100% gluten free program.  Now we use Matrix Energetics, a transformational way to access the healing potential of the zero-point field. By using Matrix Energetics, we can tap into whatever is useful to help someone heal or transform.  We can use IMT, Matrix, supplements, and other healing modalities all under the umbrella of Matrix Energetics.  Matrix Energetics basically super-charges any other modality we choose to use to help someone.

Here is just one success story from one of our clients.  We saw this client for only 6 treatments over the course of a few months.

“I sat through most of my acting class yesterday with very little back

discomfort (3 hour class)  A miracle!   My left shoulder is moving

easier with less discomfort……….a miracle!  I’m not taking any

herbs or supplements for anxiety or depression because I don’t need

them……..first time in many many years…..a miracle!  I’ve cleaned

out an entire drawer of many bottles of supplements that I don’t feel I

need anymore and made room for a gizmo that makes noodles out of

zucchini………yea!

I’m not afraid of the future.”

W.H. 2009

For information on the physics behind matrix energetics you can check out these interviews and lectures at http://www.theburnhamreview.com/Scalar_Wave_Physics.php

For more information on gluten sensitivity you can check out http://missionhillspt.com/gluten_sensitivity

For more information on Integrative Manual therapy please check out centerIMT.com

For more information on Morphic Fields you can check out http://www.sheldrake.org/homepage.html

For a newsletter on gluten sensitivity you can check out www.missionhillspt.com/newsletters

for more information on gluten sensitivity there is a great summary article by Dr. Mark Hyman at http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

Ralph Havens, PT, OCS, IMTC

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

My Fibromyalgia Hasn't Gone Away

Just because I haven’t written about my fibromyalgia in a while, that doesn’t mean it has gone away or been cured.  It’s been with me for the past 44 years and I suspect it will be until the day I move on to the next part of life (which had damned well be fibromyalgia free!!).  There has been no cure.  There are some treatments that help, chief among them learning to listen to your own body’s signals.  But no cure.

So why haven’t I been complaining as much?  One reason is that a medication my doctor finally got me to try has actually had a positive impact on me.  The reason I resisted is that it’s an antidepressant and I wasn’t depressed.  But since I know fibromyalgia is related to brain chemistry and hormones, I agreed to try Cymbalta.  Well, wasn’t I surprised.  It helped immediately for both pain and fatigue.  Even fibro fog hasn’t been as much of a problem.  It was evidence for me that my assumptions about fibromyalgia are on target.  Bear in mind that this medication has helped me. I cannot say it will help you.  I cannot say, if it does help you, that it will help as much or in the same way.  But it has helped me and it has reinforced my beliefs about the source of fibromyalgia pain.

I have still had fibro flares.  One particularly nasty one found my right shoulder and upper back locked up tight in a painful spasm for 5-6 days – I forget exactly how long because the medications for pain made me a bit foggy.  I still got things done, but not much.  Then, as the right side began to relax, the left side flared up in the same place.  I figured one of two things had happened.  Either the left side was feeling “left out” (pardon the pun) and wanted some attention, or I had overcompensated by using the left more than usual and it was clearly not happy about being overworked.

My current regimen is:

• (Most important & most difficult) Keep stress as low as possible
• Cymbalta
• Ibuprofen & Flexeril for flare-ups
• Thermacare heat wraps when I feel a flare-up in the making – sometimes will cut it off
• Being aware of posture & body mechanics
• Exercise – just walking on my treadmill for cardio
• Meditation & conscious deep relaxation
• Keeping my mind busy on things that interest me & I care about – it’s hard to think about pain when your mind is engaged in something you enjoy.

Keeping fibromyalgia at bay is a never-ending battle.  But it is a battle worth fighting!

So if you have fibromyalgia, I hope this post has given you some ideas or some hope.  It can’t be cured right now.  But you can live a happy, productive life in spite of it.  I should know, after 44 years!

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

What Your Doctor Doesn't Know About Fibromyalgia

I was still suffering and without hope when I decided to write this book, the day I brought home some dog-eared, yellow-highlighted books from the house of a deceased woman I had never met. I had stopped at an estate sale only to find that the woman who had lived there was a 56-year-old woman with fibromyalgia. The neighbors who were there weren’t sure how she died; perhaps an overdose, they suggested. Maybe a heart attack. I bought most of her books even though I already owned many of them. I wanted to feel close to her. I could sense her desperation as I turned the pages, as she highlighted various remedies, every one a highly popularized course of action for reversing the disease. I decided then that I wanted to tell the truth about the hopelessness that FMS patients feel when their doctor’s explanations and lectures fail and about what happens when you have tried every therapy in print and still can’t control the pain. I was angry that conventional doctors had not diagnosed me correctly and ignored some of the early signs of FMS. When I complained of insomnia, wakefulness in the middle of the night, headaches, daytime sleepiness, aches, and pains, I think my doctors attributed it to the fact that I was female, menopausal, thin, and working at a high stress job. I was given antidepressants and Valium. I spent years paying for the advice of doctors who knew less than I did about FMS. Even after I was diagnosed with FMS, I spent hundreds of dollars looking for answers in many books that generally prescribed light exercise and a healthy diet. Finally I found the people who could help me – doctors who had done their homework, acupuncturists you could trust physicians who understood chronic pain and treated patients like human beings. An enlightened pain doctor once told me that she was confident that doctors would soon find a way to treat FMS, if they could only keep the patients alive long enough. At the time, I didn’t know she would be one doctor who was right. Too many patients have been sent to their deaths by an absolute inability to endure more pain, aided by well-meaning, but ill-informed, doctors who failed to help them by dismissing their symptoms, withholding pain medication, and failing to do a complete search for underlying causes. FMS isn’t listed on a death certificate as a cause of death, but it can be deadly. FMS patients die from drug overdoses, lethal combinations of drugs, heart attacks and strokes caused by unendurable pain, withdrawal from drugs, and other causes linked to FMS. Sure, it would be easier for me to write that we are all going to recover completely immediately. Too many times, the helpful books I read (and there are some that were not) didn’t seem to address the panic, helplessness, despair, and severity of pain I was feeling. “If we can just keep our patients alive long enough to find a treatment,” my pain doctor said once, sighing as she handed me a prescription for Percocet. This is the story of staying alive.

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

Fibromyalgia Is A Central Nervous System Disorder

If you have fibromyalgia, or know someone who does, please contact our office for a complimentary phone consultation, or to schedule an appointment* with Dr. Shook (828) 324-0800.  We can also be reached by email at drshook@alliancechiropracticcenter.com.

*We currently have a waiting list of one week for new patients. After Dr. Shook’s presentation we anticipate a three to four week waiting list for new patient appointments.

Dr. Shook will be presenting “Breakthrough Treatments for Fibromyalgia” on Monday, January 18th, from 12:00PM to 2:00PM, at the Health First Center in Valley Hills Mall. The presentation will be covering Dr. Shook’s unique treatment of fibromyalgia. It is FREE to attend, but you must register in advance because space is limited. *The presentation is filled to capacity for Monday the 18th and there is a waiting list* Due to demand, Dr. Shook will be presenting again on Monday, February 22nd. Space is limited, call Health First in the mall at the number below to reserve your seat. (828) 485-2300

[Via http://drbradshook.com]

Neuragen Experiment: Day 5 observations

Reviewed my pain diary and notes from yesterday and can conclude that at least, anecdotally, (is that the right word?) Neuragen appears to have some affect on the level of pain, especially breakthrough pain. The caveat is, though, that the ointment needs to be applied BEFORE an increase in the base pain level is experienced. The applications should be no more than 6 hours apart; sooner depending on the kind/level of activity, and “feelings” in the cheek area. Implications for the dental pain are less obvious; but given that, the relationship of teeth pain to face pain is unclear, this aspect of the experiment will take more time and analysis.

An interesting “side effect” of the experiment is increased awareness of the spasming (not in my Spell Check) on the right side of the neck (the non-Neuragen side) and tightness/pain issues with the back of the neck and upper spine. Since, as the old commercial goes “a little daub will do ya,” I may try the ointment on these other areas. Issues with the back of the neck and upper spine relate to osteoporosis, arthritis and activities/positions; the spasms are more “fuzzy” in terms of cause, although I know certain neck/head positions and activities seem to trigger more neck spasms that in turn can trigger pain, tightness, and migraines. As I have intermittent dental pain on the right side as well, there is a chance that these spasms are somehow connected.

Over the last couple of days, I must confess, I had a crisis of self-confidence. Part of my “carry-around” luggage has always been wanting to “fit in,” be part of a larger community, to have my opinions and feelings be noticed, acknowledged and deemed important by that community. The older I get, the more I have stuffed into my carry-around luggage, so the harder it can be to unpack. I started blogging for a variety of reasons, but deep down, the lonely little kid who wanted to fit in thought that the virtual world could provide what the real world hadn’t: a sense of belonging, of mattering, of being on the inside looking out. For that kid, having met some incredible people didn’t fill the void; when the adult me regained some measure of control (no, I don’t have multiple personalities), there was more appreciation of what I have, not what I want or wish for. I’m not always sure if it’s the lonely kid or the shaky adult who excitedly checks to see if a comment to a forum has been acknowledged by other members, who feels the familiar disappointment when my contribution seems to kill an active discussion thread, or is slighted by an unreturned email. So, I apologize if I slighted anyone by bemoaning the lack of response to my postings. This blog, even if no one read it, is a step away from the inner child. I even included a front view of me “down on Main Street” with a toy-like digital camera bought to take “remembry, not quality, pictures. Perhaps I’ll post a photo-essay. And, I wonder what tomorrow will bring.

“new” fibromyalgia links, one about fibromylagia and exercise, the other a personal discussion by hibernationnow.

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

Gluten Sensitivity - Dr. Mark Hyman - From The Huffington Post

http://www.huffingtonpost.com/dr-mark-hyman/gluten-what-you-dont-know_b_379089.html

This is a very well documented and referenced article by Dr. Mark Hyman on gluten sensitivity and how it can masquerade as a number of ailments and diseases; over 55 diseases recognized by the American Medical Association as having links to gluten sensitivity.  If you or anyone you know has any of these conditions please pass it along to them;  You could save their life.  Gluten sensitivity has been linked to a 30+% increase in death in the medical literature.

Here’s a partial list of conditions caused by gluten sensitivity:

osteoporosis, irritable bowel disease, inflammatory bowel disease, anemia, cancer, fatigue, canker sores, (v) and rheumatoid arthritis, lupus, multiple sclerosis, and almost all other autoimmune diseases. Gluten is also linked to many psychiatric (vi) and neurological diseases, including anxiety, depression, (vii) schizophrenia, (viii) dementia, (ix)migraines, epilepsy, and neuropathy (nerve damage). (x) It has also been linked to autism.(ix)

For more information please email me and I can send you more research and sources.

my best

Ralph Havens PT, OCS, IMTC, CMe

orthopedic clinical specialist

certified Integrative Manual Therapist

certified Matrix Energetics Practitioner

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