[okiebutterfly]

I was diagnosed with RSD 3 months ago. On 7/23/07 I had a small accident of falling off the porch and ended up breaking my 3rd metatarcil in both of my feet. When I was in the emergency room they put the "black boot" on my left foot and left the right one with just an ace wrap. About 6 weeks after my fall, I went back to my small town dr and told him about the blood curling pain I was feeling in my left foot. He sent me to Tulsa Regional for a bone scan. It showed the breaks in my feet. But it really showed that my left foot hasnt healed at all and that I have RSD in it.
Well, I go back to my small town DR and he tells me that he doesnt know anything about RSD and went to his office to look it up. He came back to the room and prescribed me 300 mg Neurontin and a low dose pain reliever. He then tells me to come back 3 times a week for "E STEM" therapy.
I did the therapy 16 times (thats all my ins. would pay for) and it made my RSD worse. My entire left foot turns purple and I have 2 quarter sized black spots on my foot. My calf muscle is less than half the size it was. He said to keep the black boot on, use crutches, and keep my feet up all the time, oh, and take my meds.
I honestly dont know what to think anymore, I am supposed to see a pain specialist in Tulsa on the 13th and I dont want more pills to numb the pain, I want my foot and leg back! Is there a way to heal this? I am fighting depression. My husband and I rented a wheel chair for me so I could christmas shop and be able to attend my kids functions easier, and that was a HUGE blow to me. I went from being a non stop, always on the go soccer mom to sitting in a reclyner with my feet up 24/7. I hate this disease. I want a cure, but I need to find a doctor that knows about RSD and how to treat it, not just some back woods dr that has to get on the internet to figure me out.
Does ANYONE on here know of a specialist in Oklahoma or Kansas that can help?
Also, I do want to say that I have been trying to join support groups for RSD and havent been able to find one with "Active" members. I am soooo thankful that I found this board!
Thank you all for your time!

[Kristin]

I just want you to know I read your post and I can relate to most everything you are speaking of. I have an Appt. that i need to attend to but I will be back and write anything i know and maybe you can help me also. My post is I'm only 25 and nobody has responded and i didn't want your's to go un replied. As soon as I return I will sit down and help you the best i know how..which isn't much but I am someone who feels the pain and can relate totaly!! ~Kristin

[okiebutterfly]

Hi Kristin! Your gonna smile when I tell you my real name is Christy. And I am glad that someone responded to me.
I had a bad day yesterday with the RSD. Well, they aer all bad but yesterday I about lost it. My foot was sweating but my toes were cold, I could feel my heart beat in both legs and they felt like they were going to "Shatter" when I got up to use the bathroom. When my kids got home all I could do was nag at them. I told all of them that I was sorry, I just didnt feel good.
I didnt explain the med's my hick Dr. has me on very well. I take 300 mg Nurotin, 50 mg. Ultram, and I have a blood pressure patch on the top of my left foot. My Dr said that it should help with the blood flow. LOL My left foot looks good when it is up. Pink with a purple spot on top. But when my feet are down, my left foot turns totally dark purple and I have 2 coin sized black spots on the outer side of it. The dark black is creeping up my leg. And I am assuming that from wearing the black removable cast going on 5 months now, that is why my calf muscle is half the size of my other one. You can actually see my shin bone and the muscle dangles behind it.
I know that my primary care physician doesnt know diddley about RSD. He told me that the day I came back with my scan results. I need to find a specialist. I dont know where to look.
Please, write me back and let me know what your going through, and what dr's you have seen so I know what I should be doing!

Thanks again for writing!

Christy

[Kristin]

I haven't been "Diagnoised" from a neuroligist yet but my foot Dr. said that i had CRPS/RSD. I see my neuroligist sometime in the next two weeks and also physical therapy around the same time. I and my Dr. believe that my RSD/CRPS developed from having my Morton's Neuroma removed on Oct 10 of this year. My first post-op he said how great my foot looked, I'm clinicaly where I should be. My husband family and I thought my foot shouldbn't be so swollen and color change shouldn't be so drastic in a matter of hours. I brought this to his att. at the next appt. I noticed he really looked it over good and said still we are where we should be. By the time I seen him for the last appt. scheduled he asked why i wasn't in a shoe, or something other than the surgical boot. I my husband and myself both stated that my foot won't FIT in anything other than this "pretty blue" surgical boot. he then lifted the chair up and made the statment, "Wow you still have brusing on the bottom of your foot (even though my surgical area in on the top of the foot), you have pain on top and the bottom of the foot. I don't have a medical explanation. " well he spent me immedietly for a x-ray negative, MRI negative so my last appt. That's where I start on my story that i have on my post here. I have listened to him and have done a ton of research as he requested that I do. I was lucky enough to have a post on this same website for my morton's neuroma and thought that they have to have something here for RSD/CRPS and of course they did. Okay now with what I know and what my syptoms are. If I forget to tell you in the end thanks for communicating with me; it's not much help when nobody replys to your post!!
My symptoms are as follows:
*I have a tingle all in my foot. Mostly the top. The tingle is like a thousand small pin head needles stabbing me over and over again, and depending on if the foot is swollen then the tingle is more severe.
*From the top of my toes to the top of where the foot meets the calf I'm so puffed up I look like my foot can belong in a parade.
*The bottom of my foot from my toes to the middle of foot is really puffed up. This in which is caused from my Morton's neuroma surgery. (Worse of both worlds). So I can't step down because the pain from the bottom of my foot and top is so painful i can't touch that either.
*My foot changes colors as if I'm a camillion. This is my foot works. if I'm on it for more than 1 hour (Which is puching it for me) that is 1 hour standing not walking...I can't even walk for 5minutes. My foot swells and turns purple, then when I go and sit prop it up it turns to a light bluish/purple color still swelled. If I shower...which by this I mean not by myself because i can't stand alone unless I have a walker or my husband. So IF I shower and my foot is in the water the tingle as i described in #1 is like yso bad you might as well cut my foot off. after standing in the shower for not even two minutes woth the water on a baby temp (because effects too) my foot immedietly turns purple and swells the goot foot blimp. The tingle is so bad I cry through most of my shower, I can't wash my foot because the pain is so intense, i can't enjoy long hot showers like I use too, i can't even shwoer alone and get the enjoyment from it like i have post-RSD/CRPS. My husband has to stand in the shower to help hold me up because I loose balance so easily...and it is progressing with my medication they have me on for this messed up sickeness! After MAYBE three minutes of being in the shower I have to stand half in and half out so my foot is outside the water. We (well my husband) had to rearrange the shower head just so I could do this. He has to to take the time to help me shower, this however if you can imagine has almost runined our "personal" time together. Romance is not like gone. I have gained weight being on this medication after two months of working out non-stop eating correctly and working with a trainer I went from a size 12 to a 7. I then had surgery now this i'm almost back up to my 12 again. I have worked so hard to be that 7 that i cry every time I think about it or look at myself in a mirror.
*I take 300mg Neurontin twice a day, 0.025mg Xanax twice a day (to keep me from "crashing" and being so moody, and depressed) I also take 500mg Vicoden whenever needed for my pain. Which lately has been increasing so I think I'm taking it about three times a day I would say.
*Since I mentioned I'm not able to wear a shoe you are probably thinking well with getting cold how do i manage. Here it goes. I live in Michigan where already it's way cold. I use to love the cold. My entire family, and friends snowmobile all winter long. This year I can't. I'm not sure if ou can picture the surgical boot but let me expalin just in case. It is a flat white "heavy" bottom with a tongue that comes in from the side and you pull it over as far as you can and velcro it to your pain tollerance. So my toes are exposed, and the top of my foot not to mention the snow when you walk gets underneath my foot. I wear thick heavy wool socks and do the best I can. my other foot I have to wear something low so i can walk without limping and making it more apt for me to loose my balance and fall.
*I take my sock off and on throughout the entire day, because it gets hot then cold within minutes. To me it feels hot but when I touch it it's not, and when it feels cold I touch it and it's not. All of this is what i feel on the inside. And that is why most people with this go so long without it being detected because most Dr's think it's in their head. And honestly at first I thought so too when my husband felt my foot when i said it was either hot or cold and he said it's not hunnny!!! But yes it really is!
*I am not sure whether I would say I'm RSD/CRPS cold or hot; because like I said I have both.
*It hasn't yet that I can see traveled up my leg or travled any where else. I am really not looking forward to that if it happeneds.
*Sleeping now is not really that bad, but I can't have anything like the blanket, sheets, touch my foot. it sends some kind of weird (can't find the exact words) feeling and makes me cringe and it's just weird. I had to go out and buy these socks that are so supersoft it doesn't send that weird friction feeling tihng going on and hurt!! If you are interested I found them at the GAP and i have looked everywhere for something, it's the only place I found them.
I will send this part befor I loose it and then i will finish..

[Kristin]

That about sums up my syptoms I think. Oh I though of a few other things.
*We rented a wheelchair so I can shop and grocery shop, or just browse and get out of the house.
*I have been really clumpsy, dizzy and lightheaded since the increase in my medication (neurontin). I have also noticed a huge short term memory thing going on. I am not steady on my feet at all. Sometimes i worry myself being at home what could happen. My husband has also seen a great change in my status. Are you having any of those side effects?? I also get really droggy and by like 9pm I can't even keep my eyes open if you paid me too. I have caught myself doing some really out of character things for me. And I can go from happy to sad in minutes.
My family thinks my Dr. did something wrong during surgery and I should look into malpractice but they don't understand. I have told them time and time again that it's not his fault. He didn't do anything to cause this it's just something that happened kind of like a freak chance. He didn't neglect from doing something or take any short cuts. i would recommend him to anyone, and I would go back and see him and if surgery was needed again I would feel comfotable allowing him to cut on me again. It's like my husband and i are fighting this battle together and understand each other and him then yo uhave are family "planting" this nonsense stuff. My family is from the south and are not up on medication and dr's and stuff. My mother doesn't even understand wh yhe increased with my medication..see where I'm coming from?? Are you dealing with anything like this with family or do you think this yourself??? Also I hate to have C/O to my husband because I know he is so tired iof hearing it but I really think he needs to know, but yet i don't think he even get's it much. So thanks for letting me get this out. I have tried to print things off and explain but he looks like he is listening to me but I really think it's jsut going right over his head...UNLESS I say something over and over to get him to understand it then he can actually talk about it because he get's it.

What is that "E-stem" therapy you were talking about?? And do you know what kind of test the neurologist will do on me?? My dr mentioned they will be using pin like needeles???? Can you explain the kind of boot you were?? What are your black dots from?? That sounds weird to me.
This is so hard to go through. i myself worked more than full time and I was a full time student, I was always on the go. Can you drive? I haven't been relaesed and honestly with this medication who could??? i have found only a few websites that give only a few good positive stories and one is called RSDhope.com, the other one is RSDS.org and that has some great info in it. All of those sites have lots of other links you can go too.
Hope I have helped you understand where I'm coming from and I hope I didn't scare you but I think swicthing stories is good. if there is anything else I can do to help you please let me know. And i'm sorry that i'm in Michigan and i cannot help you find or recommend a Dr. for you that is not in the 'backwoods'. take care and until I talk with you again. Take it easy, don't rush anything and most important always make sure that you are comfortable otherwise you will be miserable.
~Kristin~

[ttuck]

Hello folks:

I am just getting used to this diagnosis, realization overcame my stubborness. I am pretty much useless as far as an ability to give MD recommendations as I am from Canada.

However, I will empathize with the reactions of loved ones, as I am losing my relationship because of a lack of understanding and patience on my fiancee's end. She don't get it and probably never will.

Injections of high frequency radio waves at the site have shown a success rate of 80% at relieving pain and improving circulation. It is essentially the use of hollowed needles injected into the joint, a thin wire is passed through the needle until it makes contact with the afflicted nerve endings. Then a generator is used to pass radio wave impulses through the wire, this kind of "short-circuits" the nerve endings cutting off pain stimuli.
Also, you may want to consider acupuncture treatments as it does provide pain relief, as well as, providing circulation improvement. The use of electrical stimulation (TENS & Interferrential) is really good and small portable units are available for at home use.

These forums are great for feedback and the big thing is to to hang in there and know you're not alone.
God Bless

[Kristin]

I'm sorry that she doesn't understand it, I wish that there was more out their for our spouses. Hope you are doing well and please keep me post on how you come along!! ~Kristin

[ttuck]

Thanks very much for your kind words....

I think a lot of the trouble our spouses have in grasping the effects of RSD stem from the (parden this) "neuro-techno-speak" that doctors use to describe it. Everything is "neuro" related with this condition and because they haven't fully begun to understand its many conditions, doctors like to use "medibabble" to describe RSD. It doesn't serve to help us in giving a good explanation to our loved ones.

In relation to the dark patches described, it sounds to me like its circulation based. After my latest bone scan, the technologist and I sat there looking at the images. I didn't realize the affect RSD has on circulation until I witnessed the trouble we had getting an image of the lower regions of my left leg. this is due to decreased circulation. The radio isotope used had not passed into the area and extended the time frame of the test by 8hrs.

Aside from the aches and pains of the condition, I suffer alot from muscle spasms. My GP has prescribed Quinine at bedtime for this when needed. Strange how the older drugs seem to give the better relief when the newer drugs produce all the side effects. I didn't react well to the anti-depressents they use to treat RSD, so I'm toughing it out using mostly stimulation and drug free methods for as long as I can. Sanity-wise this is a challenge so I'm not a poster child for this method.

The one thing I am very appreciative of learning of, is the effects on mood and and behavior. It explains alot about my lack of patience lately. My friends called me "the hollow reed" because of my calm demeaner, that seems to have faded and that really depressed me. I can deal better with it now because of the experiences you have shared. Thank you.

I wish all the best in this holiday season, God Bless and take care

[okiebutterfly]

Hello again! Our internet went down for about 3 weeks because of the ice storms here in Oklahoma. I was wanting to post again and couldnt. The E Stem therapy that I went through is like a tens unit... I think I misspelled that one. lol... It shocked my feet and my legs. The weird thing is that the nurse would set it on high on my left broken RSD foot and I wouldnt feel a thing. But after the treatments, the color spread in my foot and my legs felt like they were going to shatter....
Since my last post I have had a lower lumbar block. It didnt work... I see one of my new Dr's about it on Friday. I dont know what we are going to do now... He increased my Nurontin to 400 mg three times a day. And I know exactly what you mean about the short term memory loss, clumsyness, and the changes in mood... I feel like Jeckyl and Hyde most days... The depression is something I battle all day, everyday. My old life was very fullfilling... And now... I get out of the house to go to the doctors.. Thats it... I have lost friendships... But my best friend has stuck by my side and refuses to give up on me or let me give up... I am truly, blessed to have her in my life....
I am now unable to have anything on my feet at night... I know what you mean about the sensation in your feet... I cant describe it... I just cant tollerate anything on my feet at night and sometimes during the day...
As for standing and walking... I can stand in one place for less than five minutes before my left foot turns a blackish purple and throbs... As for walking... I can do it with my black boot on. But for less than 10 minutes. The same thing happens to my foot... Having my foot down in sitting position is the same... My only comfort is to have my feet up with a wedge in the reclyner.. I hate that....
The black boot is a removable cast. At least that is what my Dr calls it.. I have pics of me in it on my Myspace page. Its horrible... Its big, heavy and has metal bars on the sides of it.. It hurts to walk in it with the other foot bare... It makes my hips hurt cause it leaves me lop sided..
And when I shower, I use a shower chair to assist me. The water hurts my foot when it hits it so I have to be careful. And there is no way I can stand in the shower because of the swelling and pain. Plus I run the risk of falling in the shower since I tend to stand on my right leg like a flamingo.. lol
My husband has been great through all of this, so have my kids and parents. My little sister and brothers on the other hand, have no idea what I am going through. I try to explain it to them and they just dont seem to get it. My little sister is very angry with me right now cause I cant make the 3 hour drive to come see her like I used to.. She doesnt understand that the trip takes alot out of me, and it is asking alot to expect me to sit with my foot down that long.. The pain is not worth the drive.. I know it sounds bad, but I dont want to have to take more pain meds just to have a visit.
Hummm what else can I talk about? I think I mentioned everything I wanted to bring up...
Overall, I guess what really gets me is how much RSD has changed my life.. I have always believed that everything happends for a reason. And that we are here to learn lessons.. This disease is definately teaching me things about myself and what I am able to endure. I have good days and bad days. But they are all filled with pain. And no one knows what I am going through. There is no way they can know. But I am thankful that I found this board.. Its nice to know that I am no longer alone...

Hugs,
Christy

[ttuck]

Hello Christy:

Its surprising how much support you can gain sometimes from banging on a keyboard. If you read your own responses after someone has answered your first posts, you notice a lift in the spirit of your text.
Support comes in all forms.

My condition has worsened to the point of constant muscle spasms and shakiness after about 2hrs of activity. I don't stop and it throws off the perception of others, my stubborness I guess.

As far as my personal life...I'm moving out in 3wks on her insistance, she's tired of the comments made by her family and friends. Gee, its angering her that I'm being put down. Refer to the "don't stop" comment, and you will understand her perception.

I was once very nervous and deeply saddened by the prospect of losing this part of my life. Now, I have been able to start making plans for this change, and although still depressed over it, am now anticipating the fresh start I will be experiencing. "A door closes, another opens".

I hope the New Year brings you much joy and happiness, Take Care and God Bless