Headache and Achey Body/Skin Help!

* Note - please speak with your doctor before trying ANY new treatment - even as natural as essential oils as some of them may interact with medications or be too strong for your condition or skin and cause problems.  Also be sure to educate yourselves of the combinations and types that you may choose to purchase.

So I know I owe a little more of an explaination about the pain rehab clinic I am being evaluated for, but I figured I'd wait until I'm actually evaluated so I can tell what's really going on.  I just can't believe it's already coming up the end of the week.  I feel like I have so much prep to do as far as making sure I have a complete list of EVERYTHING that has to do with my problems.

And as I'm sure you can see - I did it - officially changed the name of the blog to Chronic Pain Won't Win...because now, it's just everywhere!

Anywho, I know you can tell from my last post I'm really trying to keep positive about everything.  So lately I've been trying to take some healing into my own hands and keep that positive energy flowing. I know that's part of my upcoming treatment as well. My physical therapist for my pfd gave me some stretches to try and said some gentle yoga could help.  My problem is (and it's partieally fear because of what I know) that with Fibro - you should get up and move to keep going so you don't get stiff.  But with CFIDS, if you do even an ounce too much on the wrong day, you could be in bed all day the next day.  I'm losing muscle tone yet I'm nervous of what to do.  In any case, if I get into this program hopefully I'll get a little more direction.

In any case, I'm sure those of you with any of these diseases can relate - but there are days when I wake up that I can't move, or the pain wakes me up and I almost yell in pain.  Then there's just days where my skin hurts so bad I can't even where clothes.  Then headaches that just won't go away....Those are the days I can't go in to work, because obviously if I can't wear a shirt I can't be in the office.  Luckily I can work from home, but I'm hoping my boss and others don't get too upset about me doing this.  I don't know.  Once I get things figured out with this program, I'll know more about what I can and can't do.

So, that day I spent with my mom we went to a nature/organic health type store.  I've been reading a lot about things you can do like biofeedback (mentally training yourself to do things like calm down, visualize, etc.), essential oils, yoga, etc.

So now to the title of the post.  I've really found some help this past week - it's been a rough one.  First and foremost - the headaches that are so pain ful - sometimes I will take excedrine for the pain - sometimes when its turning into a migraine I either use migraine medicine or pain meds.  But lately I've gotten lavender.  I massage it on my temples and right under my nose right when the headaches start and it starts to go away.  So if I can prevent it then I don't even need any medicine!

Also - my joints and muscles and skin have been painful - so I made my own massage oil.  I have made 2 different ones so far - and I'm not sure which is working better.  The recipe for the latest one I made is a quarter cup of Jojoba oil (as a carrier oil), 1 drop of rose, 6 drops of petigrain, 5 drops of sweet marjoram and 3 drops of frankincense.  There are so many different recipes to try though for so many different things!  I've been breaking out in painful acne on my face and shoulders lately - obviously it hurts so much worse than it used to and putting either lavender or eucalyptus on it has stopped the pain right away....the lavender has a tendency to dry so it gets rid of them quickly but I try not to use too much.

So, you may see me posting some recipes on here....since I'm sensitive to so many things, I'd love to try my hand at making my own lotion and mists and things like that too.  I know there is a spray you can spray your face with to give you a boost while driving or in the afternoon - which I usually need since I get so little sleep most of the time.  Anyway, that's my latest attempt to take my pain into my own hands and hopefully it will continue to help - or at least continue giving myself some positive thinking and a way to take my mind off of things.

I just found out today that my little brother (and my little, I mean 17 years old, 6'1", and 185 lbs (of muslce - he works in a gym) - BUT 8 years younger than me :) ) has Scheuermann’s disease.  Originally we just thought he pulled a muscle or pinched a nerve while lifting, but after several weeks of pain, with nothing making it better- even after PT - he finally got an MRI and initially they thought it was a bulging disc pushing on his spinal cord which was causing nerve pain - then they looked closer and saw it was more than just that and he has this disease.  I don't know much about it yet, except it doesn't sound good and eventually he will probably have to have surgery.  I'm going to do some research, but he gets his first Epidural on Monday so I'm hoping it takes him out of the pain.  I'd give anything for it to be me...he's about to be 18, graduate in a month and a half - have his senior prom and start college - I don't want him dealing with this or going through surgeries and problems like I had to in college.  He's really strong and a great kid (or guy - sorry can't help it) though so I think he'll be ok.  I really feel bad for my parents because I know this is soo hard on them.  They already had to worry about me and now him...so my goal is to be at my best around them...I can't lie because I'm an aweful liar - can see it on my face....but just be at my best.

Alrighty well I'll keep you posted on the program and hope you all have a wonderful and pain free (or a few notches less at least) day!

May the Best of Your Todays Be the Worst of Your Tomorrows....

So, I have to admit - when I finally wrote the post about my diagnosis - I didn't think it would turn out like this.  I thought I'd get overwhelmed...I thought I'd be down...but I'm in a good mood, so I'm glad I'm writing it now.

Ok so to start - I must say...I love me some Jay-Z...well I love every type of music ever created...just depends on my mood. Music is so awesome - can lift your mood, calm you down, make you have fun - and change your thinking.  Except, sorry, I don't really care for the screamo stuff my brother listens to because honestly it freaks me out (no offense to those who like it!!).  Sooo anyway, the whole point of that is I was up at 4 am again this morning (this whole not being able to sleep thing is really annoying) and saw the video for Jay-Z's Young Forever - and he starts with the quote that's the title of this post.  How awesome is that quote?  For the best things that happen today be the worst tomorrow...how wonderful :)

So I also must admit...today I felt a little better than I have been.  I know what I have for sure now (which I'll talk about in a bit) but even though it's kinda scary...I know...and I can't control what happens to me all the time...but I still control me and what I do about it and how I feel about it.  I just spent the day with my mom - and it's the best day I've had in a really long time.  We have always been the best of friends but we really connected about a lot of the things I've kept inside so she wouldn't worry and realized that she's gone through some of these things too.  Basically, we've known for a while that she has Interstitial Cystitis, but where my symptoms are mostly extreme pain...hers are more frequency.  I also believe she has mild fibromyalgia and since she has Bells Palsy, she already has a history of neuralgia.  We went to the most beautiful little Health and Nature store and I got a few essential oils and fun little natural things.  Then we made a few little massage oils and bath drops with some champagne and my dad grilled for dinner and it was the first time my mom, dad, brother and I (just the 4 of us) had a whole dinner together in forever.  It was so great.

Today gave me hope that I'll have more great days...and my attitude and the people I love have a lot to do with it.  So the last post stated my so/so appointment with the pain doctor.  After which I finally got the results to my tests and had some procedures run, symptoms recorded, physical tests and was officially diagnosed with Fibromyalgia and Chronic Fatigue and Immune Dysfunction Syndrome (CFIDS) - not going to go into all of the symptoms and problems it creates/has created in this post, but eventually.  So, anyway, its a double edge sword - finally getting a diagnosis.  I went through this before with each of my surgeries and especially the IC (which I knew had no "cure" as these don't either)...so it wasn't quite as shocking...especially since I had a suspicion already.  I really didn't think about it for a while and just focused on other things.  My doctor is really hopeful about this outpatient rehab program that the pain doctor recommended me for and my first visit is in a few weeks and will last at least 6 hours the first day.  It's a little bit of everything and gives me hope that I can at least try something.  I told my Pelvic Floor Therapist at my last appointment for a while this past week and she agreed that it sounded great.

In any case, there's up and down days...days with tremendous stiffness and weakness, days where my skin can't even be touched by my hair let alone wear clothing, days where my joints hurt, days when I can't get out of bed and even the thought of going to pee makes me tired, and days where - although it hurts- I can still have a great day...and those are the days that are filled with love...of friends, family, my boyfriend - those are the good days.  So I may not be happy every day....but I'm happy today.  And like my mom said to me today...this has happend to me for a reason.  A) I can handle it...I'm strong; and B) because it was meant to happen to me...there's always a reason and whatever that is...I will find out :)  I won't let this consume me...even if I'm in pain for the rest of my life (although, knock on wood I do hope that's not the case :) )
...it could ALWAYS be worse...and I can still have happy, wonderful days like today...and I will live for those - and know I'm really lucky.

"I'm sorry...there's nothing I can do for you..."

So how many times have we heard doctor's say this?  Or the variations like, "well you're already on XYZ medications", "Oh, I see you've already tried the things i could do for you", or my personal favorite "Well you've tried everything already - there's really nothing left".  So I don't know why I was so shocked and broke down when the title of this post came out of my Pain Specialists mouth on my first appointment today.  I started crying - and felt soo embarassed!!! I know I shouldn't be but it's so hard to hear those things...no matter how often you've heard it before.  You get your hopes up that this time it will be different and there will be something that can work.  I really respect him as he said he doesn't want to put me through a bunch of things that will just frustrate me and not work because my pain is so diffuse - I even thanked him as there are way too many doctors who just poke and prod you to try anything and he didn't give me false hope - well he didn't give me any - but that's besides the point.  He said he'd always be available on an as needed basis or for med suggestions, but as a pain specialist...there's nothing he can do.

So it's back to square one.  Aside from the fact he agrees he feels I have fibro and offered a comprehensive Rehab program...I just try to move on with life.  Day by day....one step at a time....holding on to whatever I can to keep my life and keep my happy :)