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!

When it rains, it pours.....and I think I'm drowning.

So, it looks like the name of my blog will soon be changed to just Chronic Pain...maybe  "Guess the disease or condition???".  So many of us go through this when trying to be diagnosed with whatever it is we have...which may be more than one thing.  Currently, I've felt like I've been getting worse and worse and every time there's a glimpse of feeling better - something else happens.  I've been really sick since January...first was a cold, that turned into a sinus infection so went on Augmentin which doesn't like my bladder but I stuck through it.  Things got a little better but stayed exhausted and sinuses hurt and the headaches were bad.  Then my WBC's were through the roof and I had every indiciation of a uti - probably kidney infection - went on Levaquin...didn't get better.  Then had TONS to do at work and just wore myself down...so I knew when the last proposal was in I needed to go back to the doctor...extremem flank pain, my urethra HATED me...pelvic pain, blood in the urine, fevers the works!  So she said the WBC's were extremely high - put me on Macrobid & tramadol and told me to call back for the culture.  When I called back they said mixed flora - so not really a high indicator of infection but I was in so much pain it was work to get out of bed and EVERYTHING hurt sooo bad...especially that darn right kidney!

When I was at my urologist I broke down - which I don't usually do - but the pain and exhaustion was consuming me...even with the pain meds I was on.  This is when she called the director of the pain clinic and he recommended Tramadol and a visit to see him soon.  So I finally gave in and scheduled a pain management appointment.  My PCP is against them as she gives me everything I could need...but they don't prescribe medicine, just recommend it and do trigger point therapy etc.  Since I have so many problems with Ulcers, my Liver, nausea and  IC, etc.  it's going to take someone who knows what they're talking about and since he's the Director and has been on TV a lot (not that that means anything) I'm feeling good about it....and then he'll just recommend things to my PCP so her and I can manage it.  I'm in soooo much pain but I'm very scared about becoming tolerant at my age (26) too soon.  I was born tolerant and never responded to things like Tylenol 3 or 1 regular Vicodin.  I just need something to have down the road...and don't want it to be too devastating when i get off meds when/if *fingers crossed* I get pregnant.  Anywho, my urologists exact words to the pain specialist was "she's a really good girl and i've been seeing her a while and well, she's just spiraling down hill really fast and I hate to see her like this...this is bigger than IC - it's everywhere".  Greeeattt.

Anyway, the tramadol was awesome for the all over pain.  But not for my really bad pelvic and lower back pain.  So anyway,  my "sinus infection" got way worse and i was living with migraines everyday....excruciating body pain...insomnia...and crazy fatigue.  It's affecting life, my job, my ability to work on my house, my family, my boyfriend, my sanity - everything!  So anyways went back and was treated again for a sinus infection with Augmentin and once I didn't get better I went back...my nasal cavities were swollen and bloody and the headaches excrutiating.  She gave me a Kenalog shot on the spot and is 90% sure I have fibromyalgia as every trigger point sent me threw the roof.  So, she set up a series of every virus and autoimmune disease and lyme, etc. she could think of.  Meanwhile, I threw my hip out, my great aunt passed away - and I decided to be a genious and get a shiatsu massage chair.  IT felt soooo good but the next day (around 4 am) I woke up at 4 am and was in sooo much pain.  I swore if I looked in the mirror my entire back would be bruised.  Only part of it was but it was so bad I had to take my shirts off and couldn't even have my hair touch my back.  so it was working from home half naked all day and I could finally wear clothes 2 days later.  I couldn't get the blood work right away because of the steroid shot, but I got it last Thursday so I had to wait out the weekend.  Needless to say I had a 6 hour panic attack Sunday night.  Not horrendous but felt like I was crawling out of my skin, chest was tight, uncomfortable and couldn't calm down.  After about 3-4 hours I realized what was going on and took some valium and melatonin to sleep (I have been sleeping only 2-4 hours a night for almost 3 weeks now until i started the melatonin).  Still on and off, but anyways.

So it was really strange....my doctor's nurse called and said the only thing that showed up in my blood work was chronic fatigue.  But there isn't a test for chronic fatigue and I tried to ask her a bunch of questions but she didn't want to talk about it until I meet with the doc. to explain it next Tuesday grrrrrrrr.  So my guess is I do have Fibromyalgia and potentially Chronic Fatigue Syndrome...but at least I have answers.  I'm slightly discouraged as I've tried Gabapentin and Lyrica and both didn't work.  She started me on Celexa so I'm hoping it works a little....the amitryptiline made me feel like I was drunk until 1 pm!!!  In the meantime I haven't been using the Clobesatol ointment on my vulva so that spiked up again grrr...but my friend Alex has been very helpful at keeping me sane.  I can't wait til I figure out what this is so I can make a case study on her site (listed on the right - Vulvar Vestibulitis Relief).

So, anyway - I picked up all my radiology work to take to the pain specialist friday and found out i have "multiple stones" in my left kidney - here I thought I passed the only one i had!!!!! So they're deep in there but makes me nervous that there's more. 

I guess the moral is it just feels like one thing after another and I'm sooooo exhausted all the time...then I get really hot and feel like I'm going to pass out even when I do the smallest things!!!  I'm glad I'll have a "diagnosis" and can work on what to do from there...but I'm not looking forward to this pain...it's a scary thing, but it could always be worse.  I'm blessed to still have what I have and the support that I do - I feel soooo deeply for those who are going through this without support...I can't imagine - bless you.

Well i'll keep you posted as to how it goes..... and wish you all a pain free and peacefull night of sleep tonight :)