one month in...
 

Hello all!! I was diagnosed two weeks ago with CRPS by the surgeon who operated on my left ankle (after calling his office constantly the week before telling them how much pain I was in and having NO response. I WAS in excruciating pain then.....worse than labor.....like hot burning concrete pouring down my leg every time I stood up). I have had two different doctors since confirm the diagnosis, unfortunately.

I think I must have a relatively mild case so far.....my foot gets hot/cold, I have constant tingling, burning, electric shock type sensations in it, the incision is not healing well, I have terrible swelling and, of course, the foot/calf turns red (or blue) when I stand up. I am managing the pain primarily with Advil so far (at least for the past week.....determined to get off the pain pills).

I am married, have four children, and no friends where I currently live so am DESPERATE for someone to talk to about this. None of the doctors seem to know what they're doing and no one wants to mess with me. I am SUPPOSED to have my first sympathetic nerve block done if the Pain Specialist will call me back to schedule it.

Did anyone else out there have such mild symptoms as mine?? I am hoping it will go away without causing more damage. I have very little sensation about an inch around my incision on all sides and allodynia on the top of my foot. I am FORCING myself to sleep without a sock to desensitize the area. The discomfort is always with me, but I AM walking despite it, and grateful to be able to do so (usually without limping if I walk VERY slowly--my PT will be proud of me!!).

ANY feedback would be greatly appreciated. I feel so alone and am scared about all of the information out there on this. I am assuming I am a month into the disease at this point (tomorrow is the four week mark of my surgery.....my symptoms started three days later). Thanks to all who read this!!

:confused:

Hi MominPain....

Welcome to Neurotalk... I'm sorry to meet you this way.


Please look at your Private Messages... in the upper right hand corner...
Just click on Private Messages...

I have had RSD for nearly 5 years... started in my foot and is now full body.

Please feel free to ask anything that you need to ask here... you will find a WONDERFUL group of caring people here that will help you anyway we can.

I hope to see you around the boards.
:hug: gentle hugs,
Abbie

Hi Mom in pain RSD,

I'm so sorry you have RSD. The good news is you were diagnosed early. I wouldn't say your symptoms are mild. I've had RSD 12 years, now full body. Started the day after breast biopsy, swollen arm, shooting pains, frozen shoulder. Wasn't correctly diagnosed for 4 years. Had many other symptoms. It's important you get treatment as soon as possible. Did you read the message from the lady who went to florida for nerve block. She had nerve block before but done correctly. Just make sure you have an experienced Dr who has done many blocks. Ask questions. Is the Dr. an anethesiologist with RSD experience?

You really are in a good place to get full remission. I know you want to get off the opiods, who doesn't. It's my understanding it's best for you to go in for the block, relaxed
so the procedure doesn't stress your sypmathetic nervous system. I would ask the Dr. if he recommends an anti-anxiety med for the procedure. I take lorazepam 2 mg. and they help me more than vicodin. It calms my system down.

There are a lot of caring friends here. Please let us know how you are doing. Take care, Loretta Jewell

Hi Mom in Pain
 

Now is the time to act!
I have had RSD since 1989, full body, 20 years in July. The blocks gave me temporary relief. If I could suggest anything.......

I know this will be tough, but ask about Hyperbaric Oxygen Therapy now! Before too much time passes. I think you could have some amazing results with therapy at the onset. I wish everyone could get HBOT at the onset of injury like our athletes do.
Best wishes on a speedy recovery. Diana

Thank you for replying. I live pretty much in the middle of nowhere. I will have to check to see if there is a HBOT near me. Thanks for the advice. I keep pressing the docs to DO something quickly......no one seems to be in a rush to get me treated but ME. The holidays have complicated scheduling treatment. It is possible I have already had this since October (I fell down the stairs and sprained my ankle.....the swelling wouldn't go away but I wasn't having the burning PAIN and extensive swelling or color changes I'm having now since the surgery).

The surgery was SUPPOSED to remove what he thought was a ganglion cyst on my ankle. No MRI was done to confirm.....he just cut into me. NOW I'm having all these symptoms. I think he knows he screwed up. I would like to get the nurse in a headlock for ignoring me when I called the office every day the week following my surgery. I kept TELLING her something was very wrong and how much excruciating pain I was in. They refused to even see me. I have a general mistrust of doctors anyway and this is not getting me off to a good start. He wasn't even kind to me when he diagnosed me when I went in to get my stitches out. He just dropped the bomb (I had never heard of it before, so I had no idea how bad this was until later when I did the research) and hauled butt out of the room.

Again.....thanks for the advice. My husband will check into whether there is a HBOT within driving distance of me.....perhaps in Chicago??? I pray that someone finds a cure for this disease quickly for ALL our sake.

First I would like to say welcome due to this unnecessary pain. I have had rsd or crps for almost 8 years now and had no diagnosis of it until 3 years after I got it. I know the feeling when it feels as if your doc has given up on you. It seems I have a lot in common with you in other ways. My pain started in my dominant(left) hand and has gone into my shoulder neck area of the left side. I am having the same symptoms in my right hand and am having a lot of pain in my knees, calves, and feet and it seems as if my pain doc has given up on me. I am fighting with work comp as we speak because it was a work related injury. My attorney even said it sounds like my pain doc is just tired of me and just wants to give up on me. I asked my attorney what does that do to the patient? He says I know. I said no you don't know. The pain is getting worse and my pain doc won't do anything for me and I can't get him to refer me to a neurologist with it being work related. I can't do it on my own because I have no health insurance and can't get any due to my rsd. The pain doc is my authorized doc so he has to be the one to take care of me and make my referrals. So I guess I can say I am screwed. I am scared to death of what might happen if they don't do something to help me soon. I am so afraid of being in a wheel chair at age 35. I am like you I don't have any friends around my area so I am a loner. My family has given up on my so I feel like I have nothing. Life just isn't fair. Some how some way we all pull through our trial and trebulations but we wonder how. You sound like you are a very strong person and I know you can make it through this. WE all stick together on this website so you have nothing to worry about. You can talk about anything or ask any questions and we will all do the best we can to help you and others. Good luck and you are in my prayers.

Sincerely,
Tracy(screwballpookie)

Hyperbarics in Chicago
 

Hi Mom in Pain,

There is in fact a wonderful hyperbarics clinic in the Chicago area. Midwest Hyperbarics Institute is located in Bolingbrook, IL, about 20 miles from the city. I, like Diana, would very much encourage you to investigate this option as hyperbarics helped my daughter immensely. Just curious where you live? We live in southern Illinois near St. Louis.

Jeanne

I have good news!!! My first block is scheduled for THIS Friday!!! A new year.....hopefully better luck!!! Actually, I just endure the pain (barely at night) and have been taking Advil instead of pain pills. It has been recommended to me by my PT that I take the Vicodin in the evening when my symptoms are at their worst, however. I hate taking them.....they actually make me not sleep well......but I suppose having the sensation of ants biting my foot or glass being rubbed in it isn't helping the sleep condition either!! I only have the color changes when I stand up, for some reason. That is also when I feel like my foot is going to blow up from the pressure. Otherwise, I just have the odd, prickly, electric sensations and muscle twitches and extreme allodynia. That is why I kept hoping it wasn't RSD. Denial or what???

Since they told me I couldn't take Advil the day before the injection, I will have no choice but to take Vicodin tomorrow anyway. I already take Klonopin in the evenings to help me relax and fall asleep, so hopefully that will help for the procedure. They said they will knock me out as much as I need. I've passed out lying down on my stomach for epidural injections in my spine for back problems in the past, so they will HAVE to put me pretty far under if they want me conscious at all.

The problem is (among other things) that my hubby has been unemployed looking for senior executive work for a year now. I am a homemaker. We have no money to travel for me to see the appropriate docs. Someone else on this forum has seen the same pain doc I am seeing and said he was good (although the blocks did not help her). I have no choice but to seek treatment where I live. It is a haul to either Indy or Chicago and I don't do well in the car. I will do it for an HBOT treatment, though.

I do consider myself VERY lucky to have been diagnosed so early on. That is ONE good thing this surgeon did......he coldly diagnosed me a few weeks after the symptoms started. I immediately got myself in to two other docs who confirmed the diagnosis.....I have pictures of my foot and leg turning bright red and swollen at various stages and have made a 3 ring binder notebook with articles, guidelines, contact info, PT info, calendar, etc...that I take with me to all my appointments.

I actually educated my physical therapist today on NEVER using ice or contrast baths with people with RSD. I'm taking my treatment into my own hands, making sure no one screws me up more than they already have. Since it is rare, I feel it is my responsibility to spread the accurate word about it for EVERYONE'S sake. I was nice about it and I think she actually appreciated the info.

I thank each of you who has responded to me. I spend so much time in the bed now and am so lonely and bored and scared. No one really knows what to say to someone who has a chronic pain condition. I am already at a disadvantage given that I am dealing with this AND unemployment and impending bankruptcy. I was LONG ago abandoned by most "friends" anyway. I am grateful for this site to connect with other people and offer/receive support!!!

I hope for a better, pain-free year to come for us all!!!

You are such a sweetheart!! I am so sorry for your ordeal. As if you don't have enough to deal with regarding the pain, to not have your own DOCTOR support you is a tragedy. I'm sorry you feel your family has given up on you. I doubt it is YOU they have given up on (though you may perceive it as that and FEEL that way). It could be that they simply feel helpless, which is a bad feeling in itself. We all tend to gravitate towards pleasure and away from pain (avoiding what hurts us). Any one of us would understandably choose pleasure instead of this pain we endure. Our loved ones simply HAVE that choice, unlike us.

I am fortunate in many ways to have such a supportive husband.....but am alone and isolated from everyone else. My children don't understand what I have and they just think it's going to take longer for me to heal from the surgery than expected. I try to put on a brave face as much as possible.

I would ABSOLUTELY try to get a new pain doc if you can. There is power in numbers.....get someone to go with you to your next appointment and point blank tell your doc (with your "witness" present) to refer you to another doctor that will appropriately care for your needs. If he truly wants to get rid of you, he should be happy to oblige. Get your lawyer to write a letter to him or something. I have issues with docs in general and I choose to be VERY assertive when dealing with them. No one else is going to care about me more than ME!! I actually got one to write a letter of apology to me once!!

It always surprises me when someone tells me I am strong. I've been told that before, and I don't see myself in that light at all. I suppose we all just do what we have to do to survive. I am certainly no stranger to adversity (my life story could be a tragic bestseller!!) and I just plug on....mostly for my kids. I think that ANYONE that has this disease is very strong to survive it. We may FEEL fragile physically, but our SPIRIT is strong.

We all have a purpose in the puzzle of RSD. Our bodies could hold the clues to a cure, or experiences could inform someone else along the way, our story could encourage someone to donate to the RSD foundation......who knows what kind of impact we could each have if we look for those little opportunities that life brings us??? I honestly believe that a cure or a reliable treatment WILL BE AVAILABLE to us in our lifetime.

I hope that none of you take offense to me joining this site yesterday, just having been diagnosed a month ago, trying to sound like a "perfect pollyanna" or something. I have NOT suffered the years from this that many of you have.....I am so deeply sorry for each one of you.......and while I pray for a quick recovery or remission for myself from this (and for ALL of us), I will forever do whatever I possibly can to help further awareness about this disease. If I DO have a remission, let them run tests on me to figure out why (and hopefully help many of you in the process!!). If I must endure this for years, I hope to be an encouragement or a support to someone else in pain.

Please take care and write me ANY time!!! I will NEVER give up on you and am always willing to listen to how you feel!!

I live in Indiana.....an hour or so from Indy to our south and two hours to Chicago to our northwest. We are close to the Illinois border.

I will indeed took up the HBOTS and see when I can get in. I am curious as to how this first injection is going to go on Friday.

This sounds horrible but I am so ready for the holidays to end so we can all move along with our treatment!! Thanksgiving, Christmas, and New Years have pushed my treatment back and gotten in the way every step (gosh, that really does sound horrible for me to say!!). Not to mention.....my husband can't get a job when everyone hiring is gone on vacation!!

Happy New Year to all!! We are alive!!! Where there is life, there is hope!!