:)

I wanted to write a happier post than my last one, so I'm going to create a survey kind of thing. If you wouldn't mind filling it out, I'd appreciate your input! I'll post my own answers to the surgery in a reply.

I'm trying to get to know some members here and find new skills to help with my pain. Thanks!!

How old were you when your pain started?
What is your diagnosis?
What medications are you taking?
Do they help?
What non- medical coping skills work to bring your pain down?
What's your favorite season? Why?
Favorite color?
Favorite food?
Favorite website?
If you could travel anywhere in the world for free, where would you go?
And lastly, do you make wishes on 11:11?
P.s. In 3 minutes, 11-11-11 will be over.:(

How old were you when your pain started? 35
What is your diagnosis? My first diagnosis was a ruptured ovarian cyst that was making me septic. They did surgery then found out I had a skin disease called pyoderma gangrenosum. They did a bone marrow biopsy the day before I got sent home from the hospital that time and the doctor only told me that I was a okay - I did not have leukemia. I was diagnosed with Acute Myelogenous Leukemia a year later - actually 8 months later. I found out that I actually had Myelodysplastic Syndrome which is a precursor to turning into different types of leukemia and he never told me. I ended up having a bone marrow transplant after several round of chemo and currently the majority of my problems have been caused by the chemotherapy and the bone marrow transplant. I have Chronic Pain, Neuropathy, Depression, Anxiety, Chronic Kidney Disease Stage 3, the beginning stages of COPD, abnormal lung ct scans, 2 bulging disks, a herniated disk, and a lateral tear in my back in one of my disks. I also recently fell with my dog and tore my rotator cuff. Due to the pyoderma gangrenosum - I am not allowed to have any elective surgeries at all - only if my life is threatened by something are they allowed to cut me open because that disease can come back at anytime. I also have hernia in my left groin area that cannot be fixed because I am not allowed to have surgery.
What medications are you taking? That is a pretty huge list - oxycontin, oxycodone for B/T pain, cymbalta, wellbutrin, fludrocortisone, clonazepam, zofran, advair inhaler, albuteral inhaler, protonix, simvastatin, and imitrex. I am also taking some over the counter supplements, but until I see my kidney specialist on November 15th I am not allowed to take anything over the counter. But before that warning - I was taking Magnesium, Multivitamin, Calcium, Vitamin D and Fish Oil Capsules. I am also not allowed to take any over the counter pain meds (NSAIDs) until after I see the Nephrologist on November 15th because my pain doctor believes that my kidney disease has progressed.
Do they help? Yes, the meds to help - but truthfully, not enough.
What non- medical coping skills work to bring your pain down? I love my heating pad and I love taking nice long hot bubble baths. I also Cognitive Behavioral Therapy to deal with the pain at times when it gets out of control. Yes, this does help immensely. I also do crafts - my favorite is counted cross stitch - but I have to be able to sit for awhile and I also need to be able to concentrate and sometimes that is just not possible so I have not been doing much crafting lately.
What's your favorite season? I don't think I have a favorite season - maybe Spring?Why? Because of my complications from Chemo I cannot tolerate extreme hot or cold. I also do not sweat like a normal person - the chemo destroyed my sweat glands.
Favorite color? Purple and all shades of it.
Favorite food? Mac and Cheese
Favorite website? 123stitch - I like to do counted cross stitch on the days that I am able to concentrate - this does take my mind off of the pain.
If you could travel anywhere in the world for free, where would you go? That is a question that I don't know the answer to. Probably somewhere out of the USA and Canada. These are the only places that I have every been to. Maybe France??
And lastly, do you make wishes on 11:11? Nope - not a one!

Hope these answers help you out!
Trudy in Ohio

Hey witty

Pain started when I was 48

Dx fibro, Major Depressive Disorder, PTSD Sacroiliac joint dysfunction, herniated discs,
bursitis, arhtritis, PLMD and RLS, sleep apnea

Meds: welbutrin seroquel klonopin hbp meds, madnesium, potassium, muti vit, hydrocodone

Coping: deep breathing, jounaling, prayer, lots of hear and rest, hanging with my teenage daughter, a rousing game of scrabble-lol

favorite season-spring
favorite food-any crustacaen
favorite color sea green

Travel: thailand
website:Hw

That was fun
mggie

Hi Emerald, I hope that you do get some responses here that help you. I know that 'hang in there' sounds like something of a flip response - but I do know what all over body pain feels like and I mean it in the kindest way - things CAN improve so try your darnedest to keep fighting.

How old were you when your pain started? I was 14, but I didn't get a diagnosis until I was 20. Before then I was accused of being an hysterical teenager, a hypochondriac, was even offered a psychiatric referral by my surgeon.

What is your diagnosis? My long term diagnosis is full-body Complex Regional Pain Syndrome (aka Reflex Sympathetic Dystrophy), and it's become complicated by severe dystonia and contractures affecting both my lower legs and feet. I've got a whole host of secondary problems too - the way I walk when I don't use my wheelchair has created a massive bursa in my left foot that becomes inflamed quite often. My CRPS also triggered severe gastroparesis that is exacerbated by my use of opiates to help manage my pain and also causes orthostatic hypotension. As a result of both the CRPS and the GP, I've got osteoporosis. My OH causes me to faint, which with the osteoporosis means that I now have compression fractures in my spine at T4-T8 and T10-T12 and radiculopathy affecting my chest and legs. To top it off I've also got Carpal Tunnel Syndrome.

What medications are you taking? Oxycontin/Endone, Topamax, Mobic, Cipramil, Midodrine, Lorazepam, Ondansetron, Magnesium, Vitamin D, Intrathecal Pump (Baclofen/Bupivacaine)...also have a Spinal Cord Stimulator

Do they help? Yes, but not enough.

What non- medical coping skills work to bring your pain down? I have a variety of different methods - from my heating pad and Deep Heat gel (depending on whether I'm lying down or moving about), to Mindfulness meditation, to drawing and my Teddy Bear making, listening to music. I also have an iPad and play a lot of word games - especially Scrabble - anything to keep my mind working and away from the pain.

What's your favorite season? Spring Why? Even though the pressure changes are terrible for my pain, I love the raw wild beauty of a late Spring thunderstorm, and this time of year we get them rolling through several times a week.

Favorite color? Russet

If you could travel anywhere in the world for free, where would you go? Central and Northern Australia - I've been once, and it's one of the most magical places I've ever been. Would love to go back.