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!!

Mom in Pain
 

I am so sorry to hear of your treatment by the physicians and nursing staff. I think ignorance is probably key here. So, you must advocate for yourself in a big way. From the sounds of your posts....I'm sure you can.
I was diagnosed early on as well. My injury was in July 1989 and I was diagnosed in August 1989, but.... Also, my brother is an ER doc, who has worked at Lake Forest in Chicago where they treat a lot of athletes and he also diagnosed me. Still, I was subjected to treatments that did not benefit me through out the years, such as Upper Thorasic Radio Frequency Sympatectomy, surgery, 3 series of 10 blocks, PT and meds that did more harm than good. I must say through all this I had amazing doctors that really cared, but RSD is still somewhat of a mystery and in 1989, rarely mentioned. Research and keep an open mind. Think LEAST INVASIVE! Try and keep a positive attitude toward your final desired outcome as much as you possibly can. Also, when dispair sets in....let it out! Here is a good place or with someone you feel safe or a therapist. Again HBOT gets the thumbs up from me!
All the best, Diana

Funny.....you can tell already that I'm scrappy and take little crap from people (perhaps why I have few friends???). Yes, I am my own best advocate. I really do not trust docs in general.....have been fighting for years trying to get them to properly treat other health problems I've had (TMJ, back problems, etc...). So, I am used to chronic pain even before this happened (I've adjusted to it). At least this is something I can PROVE to them (I can't "fake" my leg turning bright red immediately or my foot swelling). That sounds horrible to say that I am relieved I had these things so early on where the diagnosis was unmistakable. I've had all these other vague ailments that I can't prove but have suffered from nonetheless. I actually feel blessed....so many other people, such as yourself, suffer for months or years before diagnosis. The TMJ and back problems are more subjective and less easily proven, though no less real.

I am naive enough to think that this block I'm having will "cure" me. I am convinced (denial) that I have a "mild" case of this that will resolve quickly. I really will just take this one day at a time and do the best I can with each new day (no, I'm not usually this optimistic.....I've been through too much bad stuff in my life for that!! I'm just too tired to think any other way right now!!).

How soon after your diagnosis did they try a block??? I do know that little was understood about the disease 20 years ago. I am so sorry for the road you've had to travel with this. Have you ever had a "remission" (I tell people, a misnomer of terms in the case of RSD)?? Fortunately for me, I enjoy reading medical stuff and understand most of it easily.

Yes, I agree....the less they poke on me the better. I will be very vigilant to see how this first block goes. If it doesn't help, I won't have more. I am hopeful only because I had the surgery on December 3, the symptoms started on the 6th, so I'm very early on in this to have the block (I've fought every step of the way to get in the appropriate doctors). I'm not encouraged because I've had steroid injections in my spine in the past that didn't help at all and actually made me worse. I quit after the first two. I know these blocks are different, though, so we shall see.

We researched the HBOT......can't afford it. Hubby out of work for a year.....we're financially screwed right now anyway even before this. See??? No false optimism here!!

Anyway, thanks for taking the time to write. It literally means the world to me to talk to actual people (albeit virtually) that are surviving this and understand what it feels like!! I hope to reach many other people through this forum and give them encouragement and support just as you have me!!

Mom in Pain
 

I had the blocks three weeks after my injury. They were 10 days of Stellate Ganglion Blocks, as my original injury site was my right arm. I had three series, so 30 total during a few months period. I did get temporary relief. I then had to have shoulder surgery and when I got out of surgery I awoke to the worst pain ever. The nurse had the tube closed in the morphine pump and I wasn't getting any pain med, so I sent to recovery for more blocks that my Doc had standing by for me anyways. After surgery, PT terrible...Then the spread of RSD, and a right frozen shoulder. Remission...After 40 HBOT dives I have been pain free for 8 months. If I am stressed or busy, or have an accident, I must do maintenance dives between the 40 series. So I guess you could call it remission????? I just never though of it that way. If I try to make a vacation out of this painfree time, it always bites me in the butt. I must pace myself, stay on an RSD diet, Juicing, supplements and meditation, are part of the disciplined life I must live to be able to stay active. Its great getting to know you. Hang in with us! All the best Di

Hi Mom in Pain,

It's me, Loretta, been thinking of you a lot since I saw your post last night and just responded briefly, it was so late.Your surgeon is a jerk. He knows you have RSD from surgery he preformed. My daughter is a court reporter. She has done depositions on patients that got RSD following surgery. The surgeon failed to inform the patient of the risk of RSD from the procedure. Omission of facts has the same results as Comission of a surgical error.

I'm sorry you can't get HBOT right now. I see my Dr. once a month and he is building two clinics right now and each of them will have hospital grad HBO chambers in them. They will be the only ones outside of hospitals in Arizona. He is a neurologist, psychiatrist, and pharmacologist. He also teaches on the west coast. From New York, medical history at Cornell. I've been seeing him for 4-5 years now and didn't know when I actually got RSD till I was seeing him. The chambers won't be installed for another month or so. I'm anxious to get started with this treatment. I called Diana A and talked to her and was very encouraged.

Does your attorney feel there is neglience by your surgeon? I did not sue my surgeon, I held him responsible in my opinion, but didn't know what was wrong with me. My mother did die from a Dr's neglience. We initiated a lawsuit after discovering he misdiagnosed her and she would die from colon cancer in a few months. We went outside our city to a much larger city with medical malpractice attorneys. They video taped her deposition before her death. At trial, it was shown and my dad won a very large settlement and 100% medical expenses. She was only 46. I had the privilege of caring for her. She went thru 3 operations, medical Drs. gave up, went to mexico, no help, Went to cancer hospital half way across the country, had 3rd surgery there. We did not have medical insurance. I'm not suggesting litigation, but for some they feel impelled or a need to recoup medical costs, loss of income etc. Many RSD patients never work again. I know I'm not able to work anymore. My daughter just moved back from Chicago and back to her firm she has worked for for 8 years. The Chicago firm is very large and prominent.

I have had two remissions. My RSD started the day following a breast biopsy, actually two benign tumors, one deep in breast and one in arm pit. My arm swelled tremendously. My Dr. had gone on vacation the day following the procedure , so I saw his partner and he withdrew a lot of fluid. Same thing happened a couple more times. Started have shooting pains thru my back, then my left shoulder froze up. My Dr. returned from vacation and said, well looks like you have frozen shoulder, you'll need a couple physical treatments, referred me to rehab. specialist. Sent to physical therapists. After 50 treatments, they wanted me to see orthopedic surgeon and he wanted to operate. I had been receiving massage therapy just prior to p.t. on my dime. I said no to surgery and would keep with p.t. the rehab Dr. said it was the worst case she had seen. So had another 50 treatments and massage therapy. I was in remission (Didn't know I had RSD) Now I'm really glad I didn't have surgery. After several months, maybe a year or more my right shoulder started freezing up. We had moved in the meantime and before we moved the p.t.'s told me my good shoulder might freeze up. That didn't make sense to me. No one had mentioned RSD. Anyway, I found a pt. in new state and had a few treatments and went into remission again. Maybe another year or more I was water skiing and felt my left hand pull nerves and pain and immediate swelling. Dr. diagnosed Rheumatoid Arthritis, but didn't show up RA in the blood work. My hand froze up solid, all fingers straight and wouldn't bend. Flew back to original state to sports injury group of orthopedic surgeons. I had been to the knee Doc once before. Saw the hand Doc this time, and he said RSD within a minute of looking at me. Had hand tests at hospital to confirm. He started me on pt next day and order a tens unit. Came back to Arizona and found a neurologist confirmed RSD and saw hand ortho. and he supervised p.t. Didn't get full use of fingers back, but was desensitized and could use fingers again, they bend like a claw. But I'm grateful I can type, cut my own food again, and use hand partially. About a year later it spread to other hand, then feet and legs. back neck, saw a new neurologist and said he was full body or generalized. I found my present Dr. because I really need help emotionally, mentally dealing with loss of my previous life, and he managed my pain. I had spasms, electric jolts, jerks, dailey and nightly until this Dr. got me on proper meds. No more spasms. jolts, etc.

I'm sorry, I can't type any longer. Take care. Loretta Jewell

Hello and Welcome to Neurotalk! I am so very sorry to hear that you have RSD and hope and pray that you find something that will help you and ease your symptoms real soon!:hug:

I have RSD in my left leg and right arm, I developed it in March 2007 when I was 12 years old after falling down some steps and spraining my left ankle. It took me nearly 5 months to get an accurate diagnosis and I was later put on some medications that unfortunately caused my RSD to spread!

The good thing for you is that you were diagnosed really quickly. Treating RSD quickly is SO important whilst dealing with RSD and my Pain Management Doctor told me that the best chance of reaching remission is if your RSD is caught within the first 3 months as that is when the pain is "Sympathetically Maintained". After 3 months, the RSD goes to being "Independantely Maintained" which means that treating it is harder.

You are doing the right thing by touching your leg. I know it is really painful and you probably don't want to do it but that is one of the most important things you can do!! For the first few months, I didn't touch my foot at all because it hurt too much and I couldn't tolerate the pain and the allodynia spread quite a lot!! It took me about 6 months to try and learn to touch my leg and even then I didn't want to do it but I now realise that I NEED to do it in order to try and get me better.

If you have any questions, please don't hesitate to ask me - I am more than happy to help you if I can and I know how hard and lonely it can get at times dealing with this awful disease.

I really hope you find something that helps relieve your symptoms soon and I am keeping you in my thoughts.

Love, Alison.

Alison,
Thank you so much for responding to me! Yes, I FORCE myself to NOT wear a sock at night so that my foot rubs against the sheets (and the apparently not very soft coverlet, I now realize). I toss and turn in the evenings anyway so it gets plenty of desensitization. I have also worked alone to force myself to walk, walk without limping (slowly) and go up and down the stairs "normally". It is painful every step I take, but I am determined to deal with this NOW in the hopes that it will not spread and cause more problems LATER.

My first injection is tomorrow. I AM very fortunate to be diagnosed so quickly and decisively by three different docs in the first two weeks after symptoms started. I hope for the best with this injection tomorrow, but am prepared to take it all one day at a time thereafter. Of course I hope for "remission" (we need a more accurate term for that in the case of RSD), but am simply grateful that I can WALK at this point. So many other people on this forum have suffered far more and far longer than I have. I've already told my hubby that if something ever happened to me, I would want my body donated to science to hopefully help unravel the mystery that is RSD and to help other people from suffering in the future.

You and I had the exact same accident that sparked all of this. I, too, fell down the stairs and sprained my left ankle (the end of October '08). It didn't heal properly, I was diagnosed with a ganglion cyst on that ankle (which it ended up being a fascial tear of the muscle instead), and operated on December 3, '08. My symptoms began 3 days after my surgery.

You are a very sweet, wise young lady. I commend your diligence to keep in touch with this forum as well as your insight and motivation that you offer to others here. You are truly a blessing!! Best wishes to you for continued improvement!!