Hi,

I am reluctant to speak for someone but I seem to recall Lit Love getting benefit from SGB. I believe that she still gets them on occasion or has in the not too distant past. She is not a newbie at this so that could be encouraging. Perhaps she will see this and chime in.

Purple,

So sorry to read about your ROM issue, I understand, because just before I stopped walking, I had drop foot in my left foot and very little ROM in my right.

I did not read your thread until today, because I know nothing about blocks, but I can tell you getting into a pool and walking was the best way to augment PT. I was delighted that I could easily walk and march through the water. Yesterday, I visited a public pool a few towns over from me that has a parking lot close to the entrance, no STAIRS to climb and two friendly and helpful lifeguards. The water was not quite as warm as I would like it, but it was not heavily chlorinated. And the admission fee is $4 a session, or $50 for 3 months, so far my most affordable option.

I understand your reluctance to use a public pool, but you might find as I did that the lifeguards may be interested in helping you. The ones I saw yesterday offered to help me into the pool should I need it, I don't. They told me the times of lowest use, as well.

My town's public pool is expensive, has stairs and lousy parking, but I will try it out once, because of proximity and my parking placard. The local Y's are 45 a month, but they do offer more than the pool. I am going to investigate them as well, because I could use the treadmill. These are senior fees btw. It shocked me to find there are no options for the handicapped.

I try to drag myself around a store once a week, by supporting myself on the wagon. Yesterday when I did this, it was much easier, although my CRPS leg swelled up and turned purple.

Also I massaged my legs and feet constantly before I took LDN and I used an infared heat massager on them. I read somewhere that it helps to talk to your RSD limbs while you interact with them.

Thank you BioBased,
I got a good laugh out of that one!

I do know that many of the high schools around town offer the use of their pool for those that are a resident of the school district for a small fee. Maybe I could convince one of them to waive the residency restriction for someone in need. Otherwise, as I am writing this, I did look up one of the local YMCA websites. I did see that they have several shallow water exercise programs scheduled every day of the week, as well as adult open swim Mon. - Fri. at a time when most people would be at work/school. Hopefully there fees aren't too high. Otherwise I would have to look for other options. I haven't been able to work since my surgery in January, and my husbands business hasn't been doing very well lately so money is very tight. Small fees for the use of a pool I can afford as I know how beneficial it can be for strengthening of the limbs. I will make sure to call around over the next week to find a pool to use.

Today I am actually doing very well. The only place that is really bothering me is my ankle itself. A lot of electrical sensation and that feeling as if my ankle is being clamped in all directions, but that's good in my opinion. Going to try some simple exercises today and hope it doesn't cause any problems for me later

Purple,

I am glad I made you laugh! I thought talking to my RSD limb was hilarious too, but I figured it couldn't hurt me to do it. I told my leg to get better, I told it that it needed to be warmer and that it was still a part of my body, even if it felt like a dead mackerel.

I also found it helped me to warm my leg before I stretched anything and to warm the massage lotion before I used it.

I hope you find a pool. I was able to walk, hop and march in one today. It was awesome.

I wish We knew where the talking to the limb info came from! I have done something similar, usually when I start getting the stinging in my foot. When I was at my worst I had really started hating my foot and contemplating if I'd be better without it. So sad! Then one day it occurred to me that my foot could not get ANY better if I didn't love it. So I took ownership of it by talking to it very gently when it would flare, saying things like, "ssshhh, hush foot, it's okay, you're okay" like it was our dog during a thunderstorm. It made me feel better and more loving. I can understand that feeling you read about of being "disassociated from the limb".

Now that I've made improvement I find myself talking to my foot on occasion still, but more like an ornery young child "Foot! come on now, you're okay." Then I'll rub it and say something like "there, see? You're fine. Good foot. We can do this."

Sorry, I know, I know... we're off topic and it sounds so crazy but I really think this behavior has helped me stay more connected to myself. It IS funny.

I think it comes from the heart....do you think our bodies want to be hurt? They heal (as best as they can), when they break or cut....so what makes us think the foot or injured flare is something it wants to do?. Our bodies are reacting.... So being kind and saying it out loud may sound funny, but it is consoling.
Remember when little and a high fever any kind word gave us a comfortable feeling.
So to everyones monster....hush tonight.... Give us back for a few moments what used to be ours.

I completely understand where your coming from now. I do remember times when I would talk to all my affected parts, especially early when I first noticed it spreading to my hands, saying things like "Oh no you don't.", "Stay away from there." and so on. I now find my self mentally asking my foot to just give me a few moments to do something other than sit or lie around.

I also understand about warming lotion before applying it. Warmth is our friend. One thing that I can't seem to get my husband to understand. He is a very warm bodied person and has a difficult time tolerating anything much over about 75 deg. F. I am not looking forward to this winter as I know the house will be 65 at best with the windows open anytime it's over 50 outside, 40 by February. As I told him last night, I guess I will just have to find a way to stay under some blankets all winter.

I was able to do my at home PT today. First time I have been able to do that in a month. 10 reps each of - Bridging, (a trunk strengthening exercise), knee extensions with 3lbs, knee flexion with 3lbs, and rocking back and forth standing on both legs applying 55lbs of my weight on my bad leg, (that's all I could tolerate). Wow! It's amazing how weak my right leg has become. My leg is already tired and sore, not necessarily in a bad way, with only a mild flare in my ankle and my left wrist. I did have to take a hydrocodone afterword but it helped. Hopefully, I will be able to keep this up for a few days.

I am relieved to know other people speak to their the affected body parts too. At first I was so mean and angry with it. Often times just in my head, but I also remember screaming at it. I did some reading on deactivating the sympathetic nervous system by activating the para sympathetic nervous system. Many great suggestions: deep breathing, mindfullness, meditation, warm baths, etc Basically, anything relaxing. I figured being yelled at and hated does not deactivate, but escalate. I did start to speak kindly when the burning ot sharp pain increase. I also gently rub the area. I have started driving again and I often tell it to relax. My PT says that when driving our feet tend to stay on guard and that may be one reason why it's so difficult. I really do think changing the conversation we have with our bodies, whether out loud or in out heads, is important. It certainly won't cure CRPS, but I do think what we say to ourselves makes a huge difference. ~mac

Yes, I do still respond to blocks, but IMO they are more well suited to treating a specific area like one limbs or even one side of the face. When you have multiple areas, I'd say that boat has pretty much sailed. I'd have the same concerns with the spinal cord stimulator.

I reacted well to HBOT on spread to my leg months after being in a car accident. If you can afford it, I think it's a great option. If you can try outpatient Ketamine infusions, that is a much much better option than a SCS IMO, and again is more well suited when multiple areas are involved. I am pretty much pain free in warm ocean water, and love swimming. If I could run off to become a mermaids, you all would never here from me again. I think it's a good idea to load up on as many treatments, procedures, lifestyle choices that can help as possible. Try out the RSD diet--it's essentially a version of eating Paleolithic to reduce inflammation. If you get relief from massages, get one as often as possible. Try an infrared sauna--I noticed it helped with swelling. Try Tai Chi or low impact Yoga. Don't your doc introduce more than 1 new med a month. Learn deep breathing exercises and or meditation. If a new area of spread crops up treat it Aggressively! Lidocaine patches are great for this. Baths with Epsom salts or using Epsom salt cream will help reduce swelling. Increase vitamin C. If you respond to steroid packs, have one on hand for emergencies. (I just had a fall a few weeks ago and tweaked my lower back. I had a trigger point injection belatedly but it's helping. Ditto to the steroid pack. I was using Epsom salt lotion and Lidocaine patches, which often are enough, but not this time. I'll schedule a few massages in the coming weeks and might hit the sauna as well. Had I known to try all these my first year after developing the disorder, I'm confident I could have had a good shot at remission...)

I will say that you have to be careful not to be doing things that encourage spread--this is in general and not meant towards any poster. I still have issues with my elbow, shoulder, neck and back from bracing my "bad" hand/arm the first few years after developing CRPS. The meds I'm on mask some of the pain, but the underlying issues are still there.

Thank you everybody who has posted so far on this thread, and in advance for those who intend to post.

Lit Love, I was hoping you would chime in here. Since Littlepaw mentioned your positive response to blocks, I spent several hours yesterday trying to look through your posts and replies to others to find how they have helped you. With such an overwhelming number of posts I was unable to find anything other than your response to Ketamine and HBOT, neither of which have been brought up yet with any of my doctors. I'm glad that you have been successful at regaining your life back, for the most part. It's always nice to hear others success stories.

I have always been good at meditation. I have used this quite often to block out noise, pain, fear, nerves and many other negative issues many times throughout my life. I have never heard of the RSD diet other than the recommendations of Dr. Hooshmand talking about the 4 f's. When my dad was misdiagnosed with having MS years ago, I learned the importance of a healthy diet when you have a condition relating to the CNS. I continue to eat a fairly healthy diet, by no means Paleolithic, but being somebody who loves to cook, I have always done my best to use only fresh ingredients, fresh fruits, vegetables, herbs, and meats, (usually chicken breast, fish and pork on occasion). I tend to stay away from processed foods, but sometimes find them convenient when time is limited or I am not feeling well and rarely do I use dairy. My husband, who has been doing most of the cooking lately does the same. I have been drinking 1-2 glasses of fresh squeezed orange juice daily but I know I could use more vitamin c. I understand that it does wonders for us.

Since I am rambling and getting off topic, I will get back to the purpose of this thread...

I am glad that the blocks do help some people and as I have mentioned earlier on in this thread, I am starting to think that they may be worth a try. At least to attempt to recover my leg strength and get off of the crutches. I know that they wont do anything for the other areas that have been affected by this, only the original limb.

Let me ask this - What's the worst that could happen? Somebody please answer that. I really do have no idea and can't seem to find any answers to that. I have no known allergies, but I have been prone to having issues with bleeding following surgical procedures though. With the last two surgeries, one I nearly bled to death in the hospital when a couple of stitches let loose late at night leaving me very anemic even 2 months post surgery. The most recent I bled enough that they had to change the splint before releasing me. The surgeon put on a compression splint to stop the bleeding, which in my opinion is why I ended up on this forum. This is the reason why I would like to know the possible complications that result from having a LSB done. I seem to be a fairly unlucky person when it comes to any type of procedure being done. I would also like to hear the results of others who have had a block done to know if they work or not.