Day 1...and ME/CFS and FMS Awareness Day!!

Well - today was very interesting.  The staff at the location I am attending are all very friendly and enable you to be optimistic (as you can see from my reply to the comment yesterday, there are many of these programs so send me an email and I can either let you know of the few in my area or look to see if there are any near you - the biggest thing to look for is a physiatrist in your area which I go into a little more below).

In any case, it was my introduction day and needless to say I got lost and was about 10 minutes late...ooops!  They start sharply at 8 am with relaxation, but I had to go through the orientation anyways so I didn't get to take part in that yet. During this time, the PTA explained the goals of the program, the philosophy of treating chronic pain as opposed to isolated and specific pain and discussed the pain cycle, gave me background information on all the staff and available staff, and laid out the groundwork for the customized comprehensive treatment.

I started with the basics - and will continue with this for the rest of this week, then we'll move on to targeted problems.  So today, after orientation and paperwork, I was given a big book of stretches which is what I spent most of the day doing.  They are with you the entire time, so they are able to show you alternate ways to do the stretches if it hurts certain muscles, how to actually do it if you are performing the stretch incorrectly (as i was a few times), how to relax, breathe, even get up and down correctly (who even knew there was a specific way to do that?!).  The entire goal is to identify your pain level when you walk in - and make sure at no time you exceed that pain level...it would be great to go down, but never above when you walked through the door.  Of course that evening or next day I may be worse (as I'm feeling now), but I haven't done these activities in so long it's to be expected. 

Next we went into a room where everyone lays down with heat and/or ice and has a 15 minute breathing quiet period.  We do this twice a day - before lunch and before we leave - it's really awesome.  After lunch it was back to stretching until Biofeedback time!

This time I was able to really get a good view of how my breathing and every move I make is affecting my muscles and tension.  I got it down a lot lower than the evaluation so I was happy!  Then back to more stretching and aside from a few breaks and that last quiet breathing time, that was it. 

Although I'm sore now, it felt really empowering to have some sense of control over my relaxation and feel myself feel a little better (not from my meds, but from me - even if it was a short period of time!).  Now tomorrow I meet with the actual Doctor (a Physiatrist) who manages the program so we'll see how that goes.  Here's an important Doctor for those of you looking for a similar program - a Phsyiatrist works on pain as a whole and often works with a variety of doctors, pt's etc...so even if there isn't a program like this in your area - if you can locate a good physiatrist, they will likely be able to construct something similar for you!

Ok anywho - they also do the whole team evaluations on Thursday - although since I'll have only been there a day, mine will be short - but usually during this time they evaluate your progress with the whole staff team in the room (from the PT's to the psychologist to the nurse and doctors, etc.).  How awesome is that to get comprehensive feedback??!  I'm excited to really have this done next week! 

So I'll keep you posted on how the big doctor visit goes tomorrow and hopefully next week we'll start getting into some specifics!  I'm happy to provide more detail to anyone who would like to email me!

Finally - today is the 18th Annual International Awareness day for ME/CFS and FMS!  Remember your Blue ribbon for ME/CFS and your purple ribbon for FMS!  IF you can, try to take part in any activities that may surround today, including a few petitions out there for each disease that have really great causes.  Also, reach out to your ME/CFS and FMS friends today...a little love goes a long way and let them know you're thinking about them - I am sure thinking of all of you and hoping and praying that you find moments, no matter how big or small, during your days where you have relief and are able to smile, giggle, laugh, and see past the pain to enjoy the wonderful things that make us want to fight these diseases - because there are so many reasons.  Bless you all!

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!