Hi I'm down in Milton Keynes. Firstly you should not have any invasive procedure and that includes taking blood unless your situatuin is life threatening. even the slightest trauma can cause this to spread. My first was caused by the use of a sensitivity pin 4ins outside the RSD affexted area.
Should you absolutely have to have an operation then print out the following protocol and insist it is followed

Hospital ProtocolRSD/CRPS Patient: Handle With Care!
The Joint Commission on Accreditation of Healthcare Organizations has man-
dated 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.
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
PO Box 502
Milford, CT 06460
Toll-free: 877-662-7737
info@rsds.org
www.rsds.org




I've also just been sent this

Copywrited Material The anesthesia technique will vary with the surgery. These are general guidelines and the patients doctor should make their own decisions. Here are some guidelines: Avoid surgery unless you have to.
Pre – operative
1. Start gabapentin or Lyrica a 2 weeks before
2. Minocycline 1 day before and continue for 2 weeks after
3. Vitamin C 500 mg one daily. Start day befure surgery and continue for 45 days aftersurgery
Intra-operative
1. MUST use iv ketamine as part of anesthesia
2. Apply Synera patch or some numbing medicine patch over IV site before insertion of IV must be inserted with minimum trauma (first shot)
3. Epidural or spinal anesthesia, if lower body surgery
Post – operative
1. Continue low dose IV ketamine in the recovery room for a few hours – very important2. Continue, minocycline, gabapentin/Lyrica3. Continue epidural anesthesia for pain control, if inserted pre op, for at least 24 hours.
If I think of anything else, I will let you know.
Pradeep Chopra
copywrited materialDO NOT COPY WITHOUT GIVING RECOGNITION TO THE AUTHOR DR. PRADEEP CHOPRA

Dear Kevscar
Wow thankyou for sharing this v useful information.!
It makes me feel less scared if i do go ahead with the endoscopy as i now know there is a kind of safety net so to speak, if i do need surgury.
Very interesting that you say my gut feeling was right about having blood taken!
My GP has been pressing me for years to have blood taken.I now know i was right to resist!
How do i find a way of presenting your infomation to my GP in a way she will accept?
You know what the NHS is like it only recognises infomation they call cosha.
My GP is a v good listerner and people person,and was an anesatist before a GP so ive half a chance.
I think i will print off all the valuable infomation that all you good people gave me and give it to her!
My only fear is that she will say, im in a good place most of the time with low pain levels,unless i get a flareup,and that i dont need to take such precautions!
I can but try.
Again thankyou for sharing you hard won infomation with me.
Big gentle hug
X
Flora99