[Mark123]

Hello,
I am 3 mo into a RSD foot post leg break and surg. I am on 3600 Neurotin and 4-5 Tramadols a day. I am confident I will beat this. My pain is down to about a 3 to 8. it was a 7 to 10 4 weeks ago. I attribute much of my sucess to rest, elevating and massage. My doc mentioned desensitizing my foot. Does anybody have any news or info to help me ? What have you all done to desensitize your foot or hand? Any info will be greatly appriciated.
Thanks to all!!!
Mark

[reruho]

Mark,
I do like to welcome anyone to this club but I am glad you found us. Having others that you bounce questions off or to discuss treatment or even to vent to is very important. This is a very complex disease/syndrome that does not follow a timeline and can be cruel. The medical community is not always helpful and family members are baffled and confused why you are getting better. Family members can be judgmental about the medication we have to take to function.

Congrats on your success. Are you in PT yet? It is very important that you start using your limb to prevent muscle atrophy. PT make make your pain go up but it will come back down in time. If you don't use the foot because it hurts you risk that downward spiral to where you can't use the foot

It is great you get benefit from massage. My first and last massage completely undid a nerve block. My doctor told me not to have another massage. In fact, a doctor exam has sent me to the ER. I do not allow anyone to touch or manipulate my RSD limb unless medically necessary. I had a mammogram in March and just the tech position my arm was enough to put me in pain for the rest of the day. I wear a Medical Alert necklace with instruction of no IVs, BPs or needles in my left arm.

Now, your question about desensitizing your foot. The medical term to describe the sensitivity to touch, clothing or even breezes is allodynia. There are a couple of ways to start- therapist driven and patient driven desensitizing. My OT told me that the patient driven is superior and has the best results because you can stop immediately when you have reached the limit. With a therapist there is the time lag between you saying stop and them stopping. I used touch to desensitize my arm. I stroked my arm once or twice an hour throughout the day. I increased the pressure over time and worked up to the point where I could apply lotion and scratch my arm. The other method is to use different types of material to rub across your skin; starting with a very soft material then moving to rougher material as you are able to tolerate it.

I still have some problems with allodynia in my arm during periods when my arm hurts, like to today with this stormy weather we are having. It isn't a daily thing, mainly when the pain level is higher. I also have problems with anything restrictive on my wrist, so I stopped wearing a watch.

It is very good that you have a positive attitude, that will help you. Like you, I have been able to achieve good pain control and live a pretty normal life with my meds. I am considered a mild to moderate case.

What type of doctor is treating you? Orthopedic surgeon, neurologist, primary or pain management? I was transferred over to a PM clinic after my diagnosis at 10 weeks. Has your doctor discussed doing a lumbar block yet? They can be much more successful in the early days. I have RSD in my left arm so I get stellate ganglion blocks and I have had good success with them. I have several pain free days and the returning pain was at a lower level. Not everyone has good success, so be prepared that it might not help.

Another thing that is very helpful is Epsom salt soaks, especially when you have the freezing limb. The magnesium in the Epsom salts is a natural muscle relaxer. You need to be careful with Epsom salts if you are diabetic.

I recommend that you do some reading and educate yourself to protect yourself from the uneducated medical community and others. Even though this is a old disease/syndrome (documented during the Civil War), the medical community does not a very good knowledge base on this topic. Most of the medical community does not do well with most chronic pain, they are educated to treat acute illness and problems. Some good sites for information are RSD only sites, the other like Mayo and WebMD are ok but can give some bad info (like ice). The websites are RSDS.org, RSDHope.org, RSDFoundation and rsdrx.com.

I want to mention ice to you. Please avoid putting ice on any RSD area because it will make things worse. It has to do with vasoconstriction and the ice freezes the myeolin layer around the nerve, which causes an increase in pain when the myeolin defrosts. Dr. Hooshmand has any excellent discussion on his website (rsdrx.com).

One other thing that I want to mention is the affect this disorder has on your limbic system, which regulates things like memory and sleeping. Insomnia and her little brother, depression, will constantly be knocking at your door. Being aware that RSD can cause these problems can be very important to your sanity. RSD and chronic pain causes depression, depression does not cause RSD. But, there are doctors that will try to tell you this.

I am sorry that I kind of went beyond your question but it is important that you be aware this disorder has far reaching effects. Most doctors don't always share this information with patients.
Reta

[Mark123]

Hi Rita,
Wow..thanks for taking the time to express you experience with me. I am positive because I call myself a "trauma" RSD patient. Let me explain. 15 yrs ago I broke my arm badly and I had RSD take over from my break to my fingers. I had skin sloughing off my hand, abnormal hair grouth, the hot and cold and so on. By the time I had my external fixator removed (3 months post break and surg) my RSD had dissipated to a very tolerable level. A couple months later it was almost totally gone. today I have no sogns of it in my hand at all. I used Neurotin and some OT to get rid of it.
So this go around I am planning this to will pass. I have to say it is different that its a foot and getting from one room to another is impossible without crutches. Everytime I stand up the blood flush to my foot is very intense to say the least.
I was cleared 6 week post op to begin weight bearing and thats when everything went down hill fast. I believe if I only gave my foot another few weeks I may have been free form RSD at this point. Instead I pushed it too much and caused a horrible set back and cause the RSD which was a pain level of 3 to go to a 11 out of 10! For the past 4 week I have been working to get back to where I was.
I have had 3 Sym Blocks with no benifit. I see a great Ortho and a decent PMS. I just made another appointment with a very aggressive PMS in 4 weeks.
I was told to do hot and cold foot baths to desensitize the foot. I understand you mentioned the negitive impact of ice. I hope what I am doing is not irritating. I get to the point that I have my foot in an ice bath them a hot bath and back and forth. Each bath last about 10 seconds and I do this for about 5 to 8 mins. I am using different fabrics to rub my foot as well.
Whats your experience with tarmadol for the pain? I am sick of taking pills. There has not been a day in 3 months that I have not taken an opiate in one form or another.
The massages I get do not touch my foot at all. I need them for my tight back, shoulders and upper legs. Crutches and elevating keeps me in an akward position and the massage really help relax me.
I wil do the epsom salt to to relax my foot although I dont have a cold foot anymore.
My pain is 80 percent stinging, burning and shooting pain. The other is random shooting pain that just about drops me to the ground.
As of a few days ago I do do what I call a horizontal weight bearing exercise. I load a wall force while sitting in a chair. It is very helpful and keeps the blood flush issue to a minimum.
What else.....I do grab and massage my foot about once every 5 min throught the day. I always have my bear foot in my hand. I am slowly getting a sock on my foot little by little. I hope to have a sock completely on my foot in the next week. We will see.
I appriciate your discussion and would love to hear any thing you have to say be it person experience or medicaly proven.
Thanks again,
Mark

[reruho]

Mark,
I am very happy to hear that you were able to go into remission before. That is a very positive factor for you.

I would be very worried about the hot/cold baths. I have the feeling that it is making your foot pain worse. Dr. Hooshmand (rsdrx.com) has some excellent information. It is harder reading but it is the most comprehensive. I was using ice when I was still in the cast and swelling so badly. Of course, I did not know any better and it helped with the swelling. I am convinced my cast was put on too soon ( 4 days after the accident) and never fit properly. It was either loose or tight because of swelling.

The tramadol is ok. Normally, I do not use it daily but as a breakthrough med. The weather has been stormy with rain and thunder daily. The barometric pressure is fluctuating wildly and my pain is doing the same. I had had good pain control and have been able to manage with just celebrex. I was even able to stop the blood thinner, which took care of the freezing pain caused by the blood vessels spasming. I get a 2 week supply about 45 pills and it last about 2 months. I can take up to 6 a day, normally I take only 2.

I also have vicodin, it works well but I do not like the way it makes me feel. If I take a whole pill (7.5/750mg), I feel like I have a hangover. If I take it during the day, I take 1/2 a pill. If I take it at bedtime, I can take a whole pill.

I know people that do trigger point massage and it helps. I think the therapist did trigger pint massage to me from her comments about knots in my muscles. It felt great right after the massage but within 30 minutes I was hurting. Be very careful with the crutches because they can injury your arm because of the extended use.

The Epsom salts are not just for warming up a limb. Often I use them to help me relax on stressful days or on days when I hurt. I dip a towel in the water and lay it on my upper arm and keeping pouring water on my arm. I found some epsom salts with lavender, that is really relaxing. Since you're a guy, you might not want to try the lavender.

You might want to get some diabetic socks. They are soft and non-binding. I have seen them at Wal Mart. That might help.

I was just thinking that rubbing you foot on a soft rug on the floor might help with the desensitizing. I might be easier than the human pretzel trick of getting your foot up to where you can massage it.

Are you having any swelling or discoloration? My swelling happened when I was in the cast and immediately after coming out of it. I have never had a problem with discoloration.

Reta

[Mark123]

Hi,
This is very theraputic hearing and taling to you and haveing somebody to relate to. It is very hard for family and friends to understand unless they are motivated enough to get on line or sit and talk with me for hours on end.
That is a great idea for the socks. I wil look into it tomorrow. I can get a scope on my foot for about 1 hr in the am when I wake up right. It starts to burn too much after that. Although a weke ago I could not even put a sock on for 1 second. I have to think of progress in terms of weeks and months versus days. It is very slow. Today I have had a sock that I cut in half on all day. There is nothing covering my toes and ball of my foot. That is the most sensitive areas.
My sensititivity to cool breezes has become less as well but still present.
My foot gets that glossy, shinny look most of the day.
You may be correct about the hot and cold baths...who knows. It does make some science sence to me as thought it could be helpfull. I have my BS is Physiology so I understand the body fairly well.
One of the most irritating symptom occurs whenI am waking up form a nap or sleep. My sym system seems to be at base line when I am sleeping. As I am leaving that deep state of sleep it is as though my sym nervous system has a switch and it immediatly goes form a pain factor of 0-2 to 5-10 in seconds. Has that ever happened to you?
I have been an athlete for my entire life so the crutches are not a problem. Any time I go out (which is rare) I actually try to make my crutches into a piece of work out equipment.
I am tall and lean and this expericece had made me loose 15 lbs which is not good for me. I had no fat to loose to begin with.
I swam again today and it is a life saver!!!
Today I was contimplating what the effect would be if I just put an irritating sock on my foot and left it on no matter the horrible pain. Would my system stop sending or preciving the pain signals.... like an intensified hard reset??? Not that I could possible take it but it is very interesting how our systems are wired.

What was your injury?
Had you had RSD before?
Do you work?
Has it ever jumped to another limb?
Was there a point you had to pain med all day everyday?
Have you talked with any other foot RSD folks?

I want to hear form other foot RSD people so I get a sence how they get around and deal with the gravity issue which leads to a hossible blood flush..as I call it.

Thanks again for the talk and I look forward to hearing what you gat to say.
Mark

[Truth Seeker]

Hi Mark123

I have been dealing with RSD for well over fourteen years do to a foot fracture and what I consider to have been failed surgery as it relates to incision closure and other medical incompetence.
In regards to desensitizing your foot, this maybe possible in the early stages when RSD is still mild and should that be the case than I would recommend using a Roll-O-Flex which has rows of small spikes as well as longer nodules, if however the RSD has advanced as it relates to spreading than it is to late to desensitize your foot because now it will work opposite, your foot will begin to desensitize you and trust me, you do not want to go there.

I wish you all of the best.

Truth Seeker

[Mark123]

Hi,
Thanks, I wil look into that. Do you walk unaided? I cant even put a shoe on let alone think of walking?
Mark

[Truth Seeker]

Hello,

Yes, I do walk completely unaided had crutches only in the first few month but the crutches did not do me any favours because I already had to much loss of balance and it was bad enough trying to balance myself never mind the crutches.
I do however walk with a limp which gets worse when in pain, when I am tired or exhausted at work, but I am always consciously aware of how I used to walk and this reminder at times is helpful.
Shoes were and still are a problem, they have to be open toed and open heel, otherwise my foot feels as if in a vice grip the pressure becomes unbearable.
In the winter time people look at me as if I am a fool, but that is OK because I rather look like one than be one.

Truth Seeker

[Mark123]

So what meds have you taken over time? Did you or do you ever have a problem right when you wake up? When I wake up my foot feels as though my electrical wireing is yurned on and my foot just starts to scream. It usually clams down considerably 10 min after I wake and massage/ get my head around the pain.
Thanks,
Mark

[Truth Seeker]

Mark,

I 'refused' to take any medication consequently I went through everything as raw as it can get and let me say this, HELL is not fire but rather electrical burning.
Lets just say that things come in waves 24/7 as well as cycles, a cycle can be as short as two minutes.

Truth Seeker