DiMarie,

First off I beg of you to forgive me. For not responding sooner. I lost my sister several years ago, she was in her 30's and was hit by a drunk driver while walking.

I am 48 years old now but we were 10 months apart. We were like 2 peas in a pod. We were very, very close. When I saw De's photo's my sister looked soo much like your lovely De, it put me in shock.

When my sister went to a better place it was like my heart had been ripped out totally from under me. I want you to know only God gave me the strength to even brush my teeth, even though I was mad at him.

I care very deeply about you. I totally undestand infact I miss her very much still today. Even though we don't know each other real well, their is a bond with this medical hell, if not alot more. Be very good to you right now. Love, Roz

Hi Jo,

What would any of us so do with out you? You are a pillar of strenght for us all. I am so thankfull for you. You are such a blessing. I hope your life will be filled with so much abundance. Thanks so much for everything. Hugs, Roz

Roz, I had a full EKG done on my heart due to dizziness and some other symptoms, pre-op. All were clear, and what's funny is that post surgery I have hardly any headaches or dizziness anymore. (I still have horrific pain though.)

Here is my last list of symptoms:

TOP 5 SYMPTOMS – New Symptoms In Bold Italics

A. Pain – Burning Pain all over body that moves around from upper body, arms, forearms, back of legs, back, belly, a burning pain that cannot be controlled by medications that I now believe is / was RSD. Fluctuates and is not “orthopedic” like TOS pain – high nerve pain. Seems to come 6 to 12 hours after ANY movement, and stays for 4 days approximate at worst, but is ALWAYS present to some degree. Medication does not really control this pain, but only helps me to a small degree.

1. Constant pain in R forearm, hand, shoulder, side of neck and shoulder blade. Constant pain in entire upper body and lower left foot / ankle, bed-ridden 85% of awake hours. Pain includes orthopedic type pain, feeling of bruising, and “nerve” or burning pain which can move all over the body at times.
HAND SIZE WENT FROM 8 TO 8 1/2 TO SIZE 11 IN RING SIZE.

2. Feeling of swelling in R arm, especially hand. Feeling of swelling in both hands, forearms, neck, cheeks, ears and ear areas, back of head, shoulders (all of this bilat, less when in bed propped with multiple pillows and more when any physical movement.

3. Tired. Extreme fatigue daily, requiring daily multiple naps, interspersed with nights of inability to sleep due to 8-10 pain, sleep is usually only several hours at most due to pain.

4. Inability to use R hand / arm normally. Right hand trembles, loss of use almost completely after initial exertion. Left hand has some use, but with extended exertion also loss of use.

5. Head aches, especially related to the neck muscles and behind the right eye. Headaches are still daily, disabling, and include several migraines per month, and include pain to the jaw, (bilat), behind the eyes, up the side of the face, and ears.

CURRENT SYMPTOMS – New are italics only


RIGHT
TINNITUS – bilateral now, and includes painful buzzing, and need for complete quiet, includes pain from loud voices, music, television
R NECK PAIN – CEMENT MUSCLES
SWALLOWING DIFFICULTY – repeated choking from ANY steak or types of meat, now avoid any “chewing” type food, and do not chew gum as this causes headaches. Eat soft foods to avoid choking. Fiance has done “Heimlich” maneuver several times to push out stuck pieces of meat or food, and I repeated choke on “spittle.”
BEHIND RT EYE PAIN
RIGHT HAND – LOSS OF USE, PAIN, SWELLING, COLOR CHANGES -
FOREARM – (SAME)
ELBOW SPOT – Elbow “hot spots” are now bilateral and I can make them “happen” by brushing my own hair. Due to immediate pain, and later swelling and more pain, I cannot brush out my hair, however, if I do brush out my hair, I can usually cause very, very “hot spots” to occur at the location of the forearm / elbow on bilateral areas.
Zapping and electric stabs at bilat elbows, mostly at LEFT elbow.
SHOULDER BLADE – DEEP PAIN – This painful area makes “marble” sized knots and is now bilateral, not just right-sided. I good masseuse can slowly and carefully smooth these out to provide some relief. However, a bad masseuse who goes too fast and hard can cause worse pain.
SHOULDER AND TOP OF SHOULDER – DEEP PAIN – Pain is much more severe now, and is completely bilateral now, and the area is rock solid.
OCCASIONAL ARMPIT – This area is OFTEN very sore, lumpy, cysts and painful. Concerned about lymph problems.
CHEST BELOW COLLARBONE – MUCH more painful to touch than before.
RIGHT FOOT NUMB / PINS&NEEDLES – after a day of extreme pain and having to dress for doctor’s appt., right foot went numb during shower and never came back to normal. Right foot is still “numb” but is not without pain – the pain is “pins & needles” and is a painful and uncomfortable sensation causing pain to wear any closed shoe. Also, foot went from 81/2 to size 10.

LEFT
SYMPTOMS BEGAN 3/03 WITH NEW P/T – ABOVE RIGHT FOOT DESCRIPTION. LEFT FOOT IS PAINFUL, PINS & NEEDLES.
LOW LEG SHOOTING / ZAPPING
Zapping and shooting electric stabs at elbows
LEFT SHOULDER STABBING / RIPPING TYPE PAIN / CAN’T LIFT ARM AT SIDES – Lifting pain has resolved but I restrict ANY lifting with left arm now to 1lb
PAIN TO LEFT ARM WITH DRIVING – I have stopped driving due to pain to left arm, loss of ability to move neck properly to see, dizziness of head and eyes, inability to properly drive
HAND – UNABLE TO LOOSEN “GRIP” – This is now a bilateral problem, grip remains after it should loosen
HAND – SWELLING – See above, hand size is from 8 for finger size to 11

BILAT
HEADACHES – CONSTANT
THROBBING TYPE
MIGRAINE TYPE
CEMENT MUSCLES
PAIN BEHIND RIGHT EYE
PAIN AT TOP MOLARS ON RIGHT
ORGASM “AX LIKE” HEADACHES
SWOLLEN BRAIN / NECK HEADACHES (THE WORST)
ELECTRIC SHOCKS THROUGH ARMS UPON CERTAIN MOVEMENTS





New Symptoms to Discuss: (This was last March 06.)

B. Dizziness several times a day, including eyes rolling in head, fluctuating heart beat, hearing disturbed, feeling of losing touch with reality and fainting – even if lying in bed at time. This is scaring me.

Hi Tam,
You have described so many of the TOS/RSD SX we have and get. I love the way you described cement muscles. My hope is that they do not turn into full on concrete.

Vicc from the RSD web site has brought up some very good points about are microcirculation being involved. Big Hugs, Roz