Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 07-27-2013, 12:21 AM #1
cartee4613 cartee4613 is offline
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cartee4613 cartee4613 is offline
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Join Date: Jul 2013
Location: Northern California
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Default RSD/CRPS and Spreading

So I have had RSD in my right leg since I was 13 and have noticed symptoms in my left leg off and on through out the years. Now there is no missing them. I am having burning, shooting, stabbing, color change, hair and nail growth changes-the whole 9 yards.

I was wondering how long it took for other people to go from occasional symptoms to full blown constant RSD? I haven't injured my leg but I am sure it is getting over used because my right legs RSD is flaring up and I am unable to use it because it dislocates every time it spasms (up to 15 times a day) so I am going to be undergoing surgery on my right leg.
I was also wondering if there were any ideas on how I can temporarily hold off spreading? I am unsure if the upcoming surgery will worsen both legs or just the one being cut. I'm scared and any advice would help. Thank you.
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Old 07-27-2013, 12:43 AM #2
Kevscar
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Kevscar
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under an hour. Specialist touched arm with a sensitvity pin 4insoutside affected area. Spread from below wrist upto elbow.
The worst thing about this is nothing is constaant, nothings the same for everybody.
Unless your condition is life threatening I would try to avoid surgery.
If it is print this out and insist it is followed

Reflex Sympathetic Dystrophy(RSD) also known as
Complex Regional Pain Syndrome (CRPS) is a chronic
condition characterized by severe burning pain, pathological
changes in bone and skin, excessive sweating,
tissue swelling and extreme sensitivity to touch. People
afflicted with RSD/CRPS are extraordinarily sensitive to
certain stimuli, such as touch, movement, and injections.
Patient Tips
1. Bring a written copy of your medication regime. It
is important to verify whether your medication regime
can be taken care of solely through use of the hospital's
pharmacy. Some medications may not be part of the
hospital's formulary.
2. Avoid having ice applied to the RSD-affected limb
3. Instruct all hospital staff to always ask before touching
you!
4. Request that the surgery protocols be adjusted so
that the pre-op shave be done after anesthesia
(catheter is in place for epidural or whatever). It feels
like a lawnmower has been run over your legs when
they shave without anesthesia.
Patient Room
1. Whenever possible patient should be in a quiet part
of the hospital
2. In a semi-private room, patient should be in the second
bed to avoid inadvertent bumping
3. A Zone-Air bed should be used (adjust mattress pressure
to patient preference)
4. Heat and air conditioning should be well regulated
5. Standing orders should be issued for patients to have
warm blankets
6. Foot Cradle to hold bed linens off body area (will
diminish tactile stimuli)
7. Frequent linen changes may be necessary due to
hyperhidrosis (increased sweating).
8. Allow family members to bring in clean sheet and pillowcases
for patient. Hospital sheets are not soft and
can irritate the skin.
9. Place a sign above bed designating affected limb
Procedures
1. Perform a phlebotomy on unaffected limb only
2. Use Pediatric needles (any trauma can cause the
spread of RSD to a new site)
3. Warm Alcohol or Betadine wipes with warm running
water on outside of package before opening package
(these wipes can be very cold to the patient)
4. If PICA site is available, see if blood can be obtained
from PIC instead of using vena puncture technique.
Blood Pressure and Pulse Rate
1. Use cuff on unaffected limb only
2. Use thigh cuff if both upper extremities are affected
Transport
1. Ask what kind of help the patient needs when transferring
to a stretcher or wheelchair (simply touching
arms or legs may cause hyperalgesia)
2. Use extreme care over bumps, such as elevator doorways
Feeding
1. Be careful not to touch patient extremities with bedside
table
Patient Identification
1. Place red bracelet on unaffected limb
2. Place red dot sticker on patient chart
The Joint Commission on Accreditation
of Healthcare Organizations has mandated
the healthcare institutions that
they accredit to assess and treat your
pain. Pain is now to be assessed as the
fifth vital sign. Patients have the right
to demand pain control and to be pain
free.
Hospital Protocol
RSD/CRPS Patient:
Handle With Care!
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org
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"Thanks for this!" says:
AZ-Di (07-27-2013), dd in pain (07-31-2013)
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