Hello Folks,

I started to have foot pain in April 2011, 6 doctors later, I recieved the diagnosis of CRPS In past couple of months, I have had 5 sympathetic nerve injections, gone to physical therapy 2per week, done the hot and cold water thing. Also, take Lyrica and use a compound that is make by the pharmacy, it is topical. I have gotten some relief, but my foot is still on fire all the time,
especially in afternoon and evening. I have become quite impatient and wish amputation worked. I have bought shoes that are too big, so they don't irritate my foot, but my foot still hurts.
MD is suggesting Bier block, anyone had any experience with that? Not ready for the stimulator yet. Anyone think a tens machine helps? Seems like I am going to suffer for the rest of my life. Worried it I injure any place in my body the CRPS will show up there.
Any ideas?
Thanks for reading my story.

I want to welcome you to Neuro talk. You have found a place that you will feel comfortable with. Good people and some good advice is around. Please visit the CRPS forum. There are others on this site that have this condition. I am sure you will get a response as to what can help your disorder. In my case with another condition, the 10's unit did really good for me. I no longer use mine, and if you would care to try it, I would give it to you. Ask your doctor if he thinks this is a good way to treat your pain. I had to move on to surgery for my issues, that is why I no longer use my 10's.. I just wanted to say hello, and let you know there will be others to help you with your questions. ginnie

Lucky, I suffer from Peripheral Neuropathy (PN), as well as spine problems. The burning in my feet and ankles, at times, feels like hot coal on them. I find, while in the house, can only wear slip on sandals with no socks. When going out, I wear a shoe, without any back (slip on). I have been using Buster Brown 100% cotton socks. Anything with spandex or stretch material just adds to the pain The less, I put on my feet/ankles, the less the pain. Also, more frequently than I like, have to sit with my feet proped on pillows for a while. Usually the burning will subside. The more, the standing, the quicker the pain returns. I also take narcotics for pain. ( Spine/fusion and legs/feet.)

Try the best you can to alievate the pain in your feet. Hope some of what works for me (shoes/socks) will be of help to you. Maybe, just maybe, you can prevent this from worsening.
Ger

Welcome. I am very sorry to hear what you are going through right now. I have CRPS that started in my left ankle and a year and a half after the initial injury spread to my upper body (arms, hands, back, neck, stomach, chest, etc). Managing the pain can be quite a task and I hope that you are seeing a good doctor with some experience with CRPS.

As far as medications, when I first got the CRPS diagnosis, I was told that often it is about finding the right combinations of medications to help with the pain. I was put on Lyrica, Tramadol (for pain), Meloxicam (anti-inflammatory), and Doxepin (antidepressant to help me sleep). I was also given Lidoderm Patches which didn't help a LOT...but sometimes just that little bit makes the difference between being able to function and not. For almost a year, this combination worked well to keep my pain at a manageable level so that I could still function. I'm not saying this particular combo will work for you...just wanted to give an example of the sort of combination of meds.

I have a portable TENS unit that I can wear while I am walking (clips to my belt and I run the wires under my clothes). This has been the single best thing for me in terms of helping with the pain. It helps keep the pain at a level where I can function well enough to do physical therapy. Physical therapy is such a big part of recovery from CRPS...so you need to do what you can to manage the pain well enough that you can do it. PT is a slow process...don't expect miracles in a few weeks...but it can be key for getting your life back.

Also, as far at physical therapy goes, keep in mind that you need to do this EVERY DAY. Even if you only go to physical therapy 2 days a week, you should make sure that they are giving you exercises that you can do on your own. You should also have a progression of exercises so that if you have a particularly bad day with pain, you can revert to the easier exercises...but you still need to do them every day. CRPS is a use it or lose it sort of condition.

There are also lots of little things that I do to help with the pain on a daily basis in addition to medications and the TENS unit. Heat helps to ease my pain, so I have a variety of heating pads that I can wear, even when I am walking. These include the kind you microwave and the disposable kind you can buy at the pharmacy. The microwave ones are heavy...so if I am having a really bad flare those don't always work...where as the disposable ones are light weight but obviously they cost money to keep refilling my stash. A space heater is also good when I will be in one place for a while because I can get the benefit of the heat without anything actually having to touch me.

Hot baths with epsom salts are good too...this is usually how I try to start my day. Showers are too painful because of the way the water hits my skin...but a warm bath is always good. After my bath, I use an ultrasound heat therapy machine on my ankle for 5-10 minutes. The therapy itself doesn't seem at the time like it is helping...but I find that since I have started this I am able to go longer before the pain reaches those levels of 8-10 where I can't really function anymore. They used an ultrasound machine at physical therapy BEFORE I did an PT and then did the TENS at the end...this is what gave me the idea of getting my own machine.

There are only a couple of shoes that I can wear...after two years with CRPS I finally gave away all my other ones. Trying to find ones that don't aggravate the CRPS is difficult and frustrating...but what else can we do really? Socks hurt but I wear them all the time more as a protection for cold air and breezes (which hurts far worse than the constant pain from a sock). I have over time been able to find things that give me warmth without weight because the warmth helps but the weight hurts. I've tried many things over the years, and so far my favorite stuff is Columbia omni heat that reflects your own body heat back at you. I have their baselayer pants and top...this is huge when I need to leave the house when it is cold outside or if I am going somewhere that the AC is cranked up.

I also have to wear gloves and a scarf whenever I am going to be exposed to cold air of any kind. This includes if I am going to have to get things out of the freezer or fridge.

Also...check out Hooshmand's 4 F's diet. This is something I have been on for a few months now and it seems to be helping. Not sure if it's just because that's how far I am getting with my therapy/treatment or if it is because of the diet...but I definitely feel better and eating healthier can't really hurt.

Everyone has different things that they like and it is just important for you to find what works for you. Learn what triggers the pain and then try to avoid those things as much as possible. If they are things you can't avoid, then try to find ways to offset those bad things (like a heating pad when you need to go out in the cold). Sometimes, you have to choose the lesser of two evils. I've found that it's less about finding that one thing that makes the pain go away...and more about finding all those little things that you can do to make the pain more bearable. All those little things can add up to a better quality of life. But it is a LOT of work to juggle all those things...but you gotta do what you gotta do.

There are a lot of people on here who have been SO helpful. I've gotten so many useful tips and great advice for how to live with this monster. And of course it is always good to have people who can offer support when you need to vent or are frustrated.

Good luck...I really hope that you find some relief soon.

Hi Ginnie,

Thank you for giving me such a comprensive response. I hope mine does not spread, I am not sure if I have any control over that. I am switching PTs, seems like they all say they know how to work with CPRS, but they do not! Weird the exercises have increased my flexibility, but not reduced the pain. Mayb that is an unrealistic expectation. My doctor is now recommending Bier injections, they use a turnaqu?et on my leg and it stops the blood from flowing to the foot. Then they fill the foot with lidocaine for 20-45 minutes, depending on how much one can tolerate the turniquate pain. Any experience
with this treatment?

Your kindness is so valuable for me. Thank you. Lucky853

I have not tried that therapy. I will bring it up to my doctor on the 17th. I really hate this pain in the ankle and foot, it is driving me nuts. I walk around and ouch all day long. I am sorry all of us have to go through this. I am taking the same meds. that I did for my spinal fusion, and nothing really extra for the RSD. Tried Neruontin, and could not stand it. I got so depressed, that it was leading me down a dark dark road I didn't want to go down. So I quit that. I wonder what the doc is going to say. Let me know how you are doing lucky, and all of you who suffer with this RSD. All I had was ankle trouble, removal of cysts, and then this happened. I don't understand this RSD, and why it happens. ginnie

Hi Lucky, Sure want to keep calling you that....

Think about a 48 oz bottle. If ya tie it up in the middle and put 57 oz.s in it what will it do?
Think it might hurt that bottle? Even make it explode? The South Carolina group introduced me to Beir Blocks, The doctor they all went to was wonderful and some folks had some releif. Good group if you want to explore.
However, having a foot issue myself I could not tolerate this and did it only because the law said I had to. It was not a good thing in my opinion. It only made things worse and put me out of commision for weeks afterwards.
My foot just hurts looking at it, I stopped doing anything of this nature.

If it were my call--I would ask your doctor the sucess rate of this treatment before you do anything. 10 %--50%--And how many times has he done this proceedure? You are aloud to ask questions. And you are aloud to say NO.

It is your body and you have rights. Keep notes for yourself. Daily of this is different, this is weird, this pill did this, simple things and reveiw them.
Make lists for your doctor when you go to see him and take your journal. It may help him see something he didn;t think of. You have to stay in control. Go in there with some backup so you are not jumping all over the place when you only get 10 minutes to talk.
And you may be surprised how differently the doctors treat you as a person when they see that you are on top of things. Some are just money makers, so do your homework.

Have you researched this Beir proceedure online? You have to do the homework and do not let any one talk you into anything.

A knowledgeable doc will tell you these facts. A caring doc will help you with the right decision for you. RSD is a money maker so beware.
I would not rush into to this...find some facts first and think about the Bottle.
Allot of treatment desicions are based on common sence.
You don't have to be a rocket scienentist to see that a 48 oz. container does not hold 57oz. especially tied in the middle.
Dahhh..It may do more harm than good.

Have they done nerve conduction tests to determine anything in that area?
That is when they stick needles in your affected area and hit it with electric shocks....to determine which nerves are affected. This is inhumain in my opinion. Had ONE, flew off the table with clinched fists and walked out. No one should have to have that done to an RSD body part. Matter of fact no one should have to endure such torchure this day and age.

As for your pain, be good to yourself. Lay down if you need to, scream if you have to, and cry when it is just too much to bear. You are human and your tearducts were designed to help cleanse your head and your heart. Laughter is the most healing tool for me. I Have a picture of laughter endorphines being produced by the brain when laughing. They look like pretty fireworks just dancing and gleaming all around. Use what ya have to try and make it thru the day. Hope to hear back and hope this has helped you know that you are in control. You have to do the homework however.
And ask for God's guideance and wisdom.

God bless you and keep you strong.
Peace & LUV, Andrea
RSD from Mars with Luv. Lending Unity for Victory.



Thank you for giving me such a comprensive response. I hope mine does not spread, I am not sure if I have any control over that. I am switching PTs, seems like they all say they know how to work with CPRS, but they do not! Weird the exercises have increased my flexibility, but not reduced the pain. Mayb that is an unrealistic expectation. My doctor is now recommending Bier injections, they use a turnaqu?et on my leg and it stops the blood from flowing to the foot. Then they fill the foot with lidocaine for 20-45 minutes, depending on how much one can tolerate the turniquate pain. Any experience
with this treatment?

Your kindness is so valuable for me. Thank you. Lucky853[/QUOTE]

I know this is an old post but I am new and I couldn't find how to private message even using the FAQ's. My daughter has RSD in her right foot and catra I was wondering what were the shoes you were speaking of that you found you could wear? Thank you so much in advance. We went out and bought her some omni heat baselines and that has already been a great help. I wish they made socks as well

dear fellow sufferer,

The tip about the all cotton socks makes a lot of good sense to me. TX
fromLUCKY*%#

Dear Ginnie,
Thank you for your warm welcoming thoughts. I appreciate it.
Lucky853