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 11-13-2013, 10:31 AM #11
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I am so sorry to hear that.I have had the back injections too..3 but told them no more.They kept saying it sometimes takes more.I told them 3 was enough.Why keep trying...This is a tough problem.I know one thing the cold weather is not helping.
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Old 11-13-2013, 10:46 AM #12
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Default hmmmm

Thought bier blocks were only done during medieval times.
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Old 11-13-2013, 10:47 AM #13
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Not in affected area Pediatric needles only

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
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Old 11-13-2013, 11:12 PM #14
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Definitely don't go through with it .. my daughter has CRPS in her foot/ankle/leg and had two injections like that (one from a podiatrist and one at a pain clinic)..they only made the pain unrelenting and worse. Can't help but wonder if she had not had any injections if the pain would have gone into remission and she would be okay now and back to being my happy and healty child!
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Old 11-14-2013, 01:05 PM #15
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Thanks for all the input. I've already called the hospital to tell them I'm not doing another bier block.

I'm still going tomorrow. When I went there to do the first two blocks, the nurse talked to me about "other options", and mainly mentioned a nerve block which would help my blood vessels open up. So I suppose she was reffering to the lumbar sympathetic blocks.

I've spend the last days reading up on CRPS. And I'm now reading as much as I can about nerve blocks. I'm gonna make sure I can see the doctor who's in charge of following me up, and talk to her about it!

I'm also considering changing hospitals. But there's only one hospital in Belgium which may be a better choice, and they also recommend contrast baths as part of the physical revalidation on their website.

The first treatment they recommend is what I'm having now too. Injections with miacalcic (calcitonin salmon) and physical therapy. If that doesn't work, their second means of treatment is an IV drip with bisphospanates...

From what I've read the best treatment I can get right now, and as soon as possible is the SLB's...

Last edited by stief303; 11-14-2013 at 01:21 PM.
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Old 11-14-2013, 01:11 PM #16
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Good for you!

I hope it goes well tomorrow and you get some answers, and a way forward that doesn't involve sticking things into your CRPS limb...

I'll be thinking of you, let us know how you get on.

Bram.
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CRPS started in left knee after op in Aug. 2011
Spread to entire left leg and foot, left arm, right foot.

Coeliac since 2007.
Patella femoral arthritis both knees.

Keep smiling!
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Old 11-14-2013, 05:26 PM #17
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Default blocks

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Originally Posted by ali12 View Post
When I was initially diagnosed with RSD, I had the same block as you. My PM doctor told me that it would end all of my pain. It sounded great and I was so excited to have it. I was only 12 at that time so was put under general anaesthetic. When the anaesthetic wore off I woke up and was unable to walk. All of my co-ordination had gone and when I tried walking my leg would kick out in front of me and i'd fall to the ground. I spent over a year in a wheelchair, relying totally on my parents. It took a lot of physio (PT) to get me to learn how to re-walk again.

A few years ago I also developed a ingrown toenail on my RSD limb. It was really infected so I had to have it removed. The needle again caused a bad reaction and I developed myoclonic spasms from it. From that point, all my doctors said that I should never have any operations on my RSD limbs, unless it was absolutely needed.

My advice would be NOT to go through with the block. Since the complications happened to me, I have spoke to so many doctors who have said nerve blocks in RSD limbs is an absolute 'NO NO' as it often causes more damage than enough... I only wish I knew that back then.

Have you looked into an epidural? If you don't have RSD in your back that may be something to look into. I had one a few years ago with Ketamine in it and it really decreased my pain. It didn't last long (only about 6 hours) but it was worth it and doctors often look into the surgical pain pumps for long term effects if it works.

Take care and I hope things work out for you.

Alison
I have had the epidural 3 times..lasted about 1 hour on the 3rd. one..but thank you..I am great for all thoughts..
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Old 11-14-2013, 05:40 PM #18
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Default infusions

I go to a doctor near where I live for pain management.He spoke about infusions and botoxe..I am not sure who does them.I live in Gloversville ny.But I have to say I wonder about my doctor.I feel he tries,but just not sure what else he can do for me.I have tried so many meds.They work for awhile then nothing.Also a lot of meds bother me. .he ask me how I have been..Good and bad ..Well then I feel like when I say not too good..WHY.Why..I feel like saying duh..its RSD..I feel like I do not dare to tell him bad at times.Like I do not want him to drill me.I am a hard worker.I live on a farm.We have crops to tend too.I work from home too.Plus I have my husband and dog to take care of.i am not one to just sit and cry..I keep pushing..But there are really times when I know I have to stop.slow down..Has anyone had good relief from infusions?????
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Old 01-23-2014, 07:33 AM #19
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With close to 3 decades now of ~25 blocks a year I can tell they do help with the pain. But they come with a cost of days recovery from the injection and of not feeling so well until the effects of the injected drug wears off.
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Old 01-25-2014, 10:41 PM #20
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Catra, wow! I did not know that blood draws could be an issue!
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