CRPS James,

I think I posted on the wrong post. I am so happy to hear about your
success with TDCS. My daughter will be trying the treatment in April.
Please keep us posted on your progress. Here's wishing you with continued
success.

Joydee:)

(sorry if this is a little long... I have never actually talked about it to someone...)

Hi, I am 19 and a Sophomore at CU Boulder. I was hit by a car my Junior year of high school. Even though there were a few pains, I didn't think much about it after I had gotten my stitches out and what not from other injuries. I continued to play football. Every game I was struck in the back and landed on my knee (same one the car hit) at least 2 times a game for about a month. Eventually, I was hit again, landed on it again, and was barely able to get to the side lines. my knee was so swollen the trainer had to cut my pants off. I was diagnosed about 2 weeks later... Sadly... I didn't understand how intense CRPS is... By my freshman year of college I was using a cane to get around due to muscular dystrophy. It was so hard to get around and do basic things, I was forced to go see a physical therapist by my friends. Soon enough we reversed the muscular dystrophy and I lost the cane... but the intensity of my nerves and the area effected has grown... It is so sensitive now I can feel an eye lash rub against the hairs on my knee... I really want the intensity to go down... Someone help?

Hello genni
 

I want to Welcome you to Neuro Talk. I am so sorry to hear what brought you here. There are lots of folks who have injuries, then get RSD or another painful condition. I have NP so I have an idea on what you go through. Sometimes your primary care physician, can call the specialist and get you in sooner. Don't be afraid to make your needs and worries known to your doctor. You are correct that treatment the sooner the better. I hope you get better, and that this condition settles down. I also feel for the loss of your dance. It hurts a person to give up something they are clearly love. Pointe dancing is an art form, and I am sorry that your foot hurt you. I also lost a career due to my cervial problems. You are young, and that can be to your benefit. I hope you get into seeing the very best specialist as soon as you can. You can also go to a pain management Physician to get care until your appointment. You have found a compassionate site genni, and you will also make a few new friends. I wish you all the best. ginnie

I'm so very sorry for what you are going through. Welcome to Neurotalk...I have found lots of great advice on here about different things to try and different treatment options. The people on here are very supportive and we all understand what it is like to live with this daily pain.

Can I make a suggestion? Maybe start a new thread about sensitivity and RSD...I know I don't check the introduction thread as much as I should and I think you will probably get more responses that way.

Personally...I have found that trying to desensitize the RSD areas (there are different therapy techniques to do this) is the best bet and also finding out what things can help relieve the pain itself. It took a long time for me to build up tolerance for normal clothing and stuff touching my skin but now I can wear them. It's not that they don't hurt...more that I have learned to cope with the pain and found little things that help with the pain itself. Heat helps my pain and I also have Lidoderm Pain patches that I sometimes will put on my RSD areas if they are particularly sensitive or I am going through a bad flare where I cannot bear the touch of anything. I have a TENS unit that also helps with the pain...especially in my ankle where I can surround the worst, most sensitive area with the electrodes instead of having to place them directly on the most sensitive area. Everyone with RSD/CRPS is different though so what helps one person might make another person worse. There's also a newer, relatively inexpensive treatment that many have found successful (I'll be starting it soon) called tDCS and some people have found significant pain relief from it. Definitely check out some of the threads on here about it.

Hope you find relief soon!

Hello Koongoo
 

Welcome to Neuro Talk. Your post can be as long as you need it to be. This is what the site is for. You are welcome here to go to all the forums that may help you. I am sorry you got hit by the car to start with. I understand abit about these kinds of conditions that develop with re-injury over time. You need to see a specialist. An Orthopedic, Neuro surgeon, in those diciplines. A pain specialist can help too, and you need a good one. Sometimes the current doctor you see can recommend you to one. If you don't know who to go to, ask for the referral and have your doctor call in for you. You can also post where you location is, and somebody on site, may be able to tell you of their doctor. I do tell others who I see in my state. A doctor who specializes in RSD is also the best source of information, and help, but can be hard to locate. A teaching hospital in your area can help find one. I am sorry that you are young and having to go through this. However your youth can also be a strong point in the healing department. I hope this condition can be reversed, or calmed so you have your life back to a more normal way. Don't give up. This site will be here for you with any of your questions. I found this site when I was in bad shape, and the help I received got me through the worst of it. take care, ginnie

Thank you very much for your response. I have been to 3 physiatrists, 2 sports medicine specialists and 3 different Physical Trainers. The only advice I was given is to get nerve blocks and to keep up the stretches so I don't lose the muscle in my leg again =/

Thank you, I am in Birmingham Alabama. So, if anyone happens to know a specialist I could go see. If anything I might just go down to the UAB campus. There mainly are a medical school so someone there might know someone. I really have a hard time talking about my problems but it's just getting to the point where its more and more difficult to deal with since my recent break up and I am worried that the 2 jobs I will be starting next week will be effected by my pain =/ Thanks a lot for the advice and I don't think I can make a new thread =/

Re: medical school
 

Yes koomgo, do go to the medical school. I first went to one in Columbia Missouri medical center. I did indeed receive alot of help and was in a trial study. I sincerely hope you get better. This issue is not in your head, but councel, can be a good thing. I have a psycholigist friend that I have talk to for 25 years. He is retired, but has been there for me through all of my problems. A blessing in my life. I hope you reach for that help so you can enjoy your life alot more. ginnie

I have had rsd over a year, due to a cheerleading accident where I was dropped on my head from an extreme height. in this fall, I fell on my hand as well, causing a sprained thumb, that later was diagnosed as rsd, months and months later after being casted and splinted for months. Now, the rsd has spread to my elbow and I have little use of my hand. My pain is always high; about an 8 out of 10 when I first wake up, and from then on, the pain is just unbearable. I cannot concentrate, because of the pain, or sleep. And to make matters worst, my parents and family members do not understand anything close to what I am going through. They said that all I do is complain. So, here I am now, seeking out for help from those who do understand. My dad even told me that I am defeating myself, and that it was my own doing, that caused my rsd to spread?! He even said that all I do is have a pitty party. My mom doesn't say anything when I am crying in pain, and my sister called me fake?! I am new here, and quite young, as I am only 18.

Welcom Lema56!
 

I am glad either you found your way here courtesy of Jomar's help and guidance or her redirect of your introduction post to this Forum, because it is truly where your situation will find responses of hope, help, that good feeling of others who deal with your issues and have knowledge of RSD sufferer needs.

It is easy down on the thread line to start a new thread for your posts specific to your trauma, or to pick relevant threads and write posts to such threads and begin to find your own personal "comfort zone" here. This is a safe place. Many who personally feel your issues inhabit this place for sharing with youand you with them.

There is no judgment passed on those who post, for in the posting we all gain strength, healing, information, and support- the very things even those who surround us as family and friends cannot necessarily do if they begin to wonder why is Lema not doing better? What is wrong with Lema? RSD once diagnosed [DXed in short script here] is a matter the proper physician treating you will take seriously, very seriously. So read, learn, ask questions freely, and perhaps you will come to know things which should come to the attention of your family and doctor.

Blessings on you,
Mark56:grouphug:

New here not sure how to navigate yet
 

I have not gotten the hang of navigating the forum yet. I posted something but it ended up on a thread different than I selected. I am guessing that I should have still been using this thread since I am new.

Anyway, I am providing feedback that I hope helps someone else out.

I continue to make progress from the CRPS spread due to having a Spinal Cord Stimulator. I am now off all narcotics!!!! Withdrawal was a very rough road. For anyone considering this process please take it very seriously.

I was hospitalized, still had a rough time and they forbid me to use my tDCS device. (No problem, the nurse who confiscated it sent it home with a compliant relative who promptly sent it back with a friend who stood guard at the bathroom door for my treatment and arranged a schedule of friends and relatives to do the same for the duration of my stay)

What a difference it is being off of Fen patches and other mind-clouding drugs. I didn't know how my thinking had been so badly compromised.

Thanks to tDCS I am now setting my next goal on using a cane. I inherited my great grandfather's cane that he carved and it is now hanging by the door. I hope one day to walk out the door with it.

The other news is that someone I met at the doctor's office, who also has CRPS, has had the same reaction to the SCS that I had, is now using tDCS. Since I felt very bad about wholeheartedly recommending the SCS to him I initially thought I would be the last person on earth he would want to hear a suggestion from. While in the PT's office his wife was being treated in the next bed and saw my amazing progress and the rest is history. He was very slow to respond and in fact for the first two weeks had no response. He changed electrodes positions over the weekend and is now responding well to the treatment.

Now that I am through the whole med withdrawal thing I will keep posting my tDCS progress. I am currently treating three times a week, once a day for twenty minutes, next week I will be dropping one day and so on until I stop treating.

Does anyone know how long I should post in this area before trying another thread? Does anyone know why one post went to the wrong thread and why another vanished as I was typing it? (Maybe I was too slow typing using one hand-I now use voice recognition)

Thank from a newbe!

Hi James
 

Welcome to Neuro Talk. You are doing fine in posting. I got lost alot too, and sometimes I still do. Somebody will come along and transfer your post to the thread you want. You found th CRPS forum. You can also visit any thread you want and respond and talk anywhere.
I am glad that you got off your medication. That is reason to celebrate!:Trapeze 2: I too have been going down on medication, and I have stopped because I didn't want an increase in pain. I have cervical and ankle issues. I was not allowed the SCS.
There is also a search bar at the top of the page. You can type in what forum such as RSD and CRPS and that will take you to that forum.
I am just glad you found this site, you will find alot of information and comfort. up on the right side, where you sign in, it will have a little "remember me" box. If you check that box there will be more time to type out your post. There is a time limit I found out, when my posts dissapeared as your did. Just check the box and that should help
It is good to hear that the tDCS treatments are working for you. Again a warm welcome to Neruo Talk. ginnie:D

Your progress with tDCS is such a great thing to hear! I am very happy to hear that you and the person you recommended it to are both responding well to the treatment. It gives me hope that I may eventually not need to use my walker (or that I may at least not need to use it around the house). I think your goal of being able to use the cane is a very good one. I find I do much better with therapy and treatments when I set a goal for myself.

Sometimes when you are still new and don't have many posts there is a delay before your post will appear on the board...at least I think that's what I remember from back when I first joined. It goes away once you have a certain number of posts and then the posts appear immediately. Definitely try to post on the tDCS thread that was started by ballerina because, at least for me, that is where I go back to for reference. I will be starting treatments as soon as my lead wires arrive...there was a delay in getting them but it should be within the next few days. I would be interested to know what electrode placements seem to be working best for you and (if you know) what worked for the person you recommended tDCS to. I know it will be a little bit of trial and error but I am curious so that I have a plan of attack in mind as I go.

Again...I am very happy to hear that you are progressing well and that tDCS works for you. I think it's crazy that the hospital would try to prevent you from doing a treatment which works for you. But glad you found a way to make it work.

This tDCS is becoming very interesting. There seems to be a ground swell of positive results coming from this method. :)

Thanks for your warm welcome Ginnie. Glad you are reducing your meds . Thanks for your guidance. I checked the "remember me" box. If you have CRPS you are probably better off having been denied a SCS. (Short term gain but long term pain)

Hope each day brings improvement for you!

Dear Catra,

I am so glad I will have someone to compare notes with who is treating with tDCS and hoping to be walker free.

In terms of electrode placement everyone is different. If you don't yet have a solid knowledge basis I highly suggest doing some extensive research focusing on clinical trials of tDCS. I followed Ballerina's suggestions of reviewing journal articles dealing with my types of pain and pain location. If you do this kind of homework you are not just throwing darts at a board.

The man who I know who is also treating with tDCS tried my electrode placement and it was totally ineffective. He was quite discouraged and almost abandoned the treatment, causing me great anxiety since I had assertively recommended a spinal cord stimulator to him and his condition, although improved initially, became much worse.

The second electrode placement he tried worked well for him. That same placement does nothing for me.

Where did your CRPS begin? Has it spread? What are your sources for determining electrode placement?

My progress is very good. I believe the main thing that is holding me back from graduating to a cane is the ravages of muscle wasting. It sets in so quickly. The tDCS is reversing that. I know it is only a matter of time before I get that muscle tone back.

I hope you find relief with tDCS!

Dear Jim,

I was very fortunate to initially learn of tDCS from Neurotalk. Although I am somewhat gun shy when it comes to recommending treatments tDCS is virtually risk free and if you are a responder it is nothing short of miraculous.
Are you considering it?

CRPSjames, my wife has RSD, now for 10 years. She is extremely anti invasive treatment at all cost but is suffering now. She now hardly moves from the couch. I'm dropping hints to her about this treatment and want her to look at this method closely.

Jim,

I am very sorry that your wife is suffering so much. Could her reluctance to leave the couch be related to depression? I ask only because I too rarely left my recliner. Although in extreme pain I was leveled by severe depression.
I was overcome by hopelessness and anger relating to my failure to protect myself from the implantation of a Spinal Cord Stimulator that landed me in a wheelchair.

The tDCS not only reduced my pain but allowed me to deal with the depression. If your wife is a responder to tDCS, in addition to pain reduction she will likely see relief in symptoms of depression, if she suffers from it.

Camping out on the sofa can only make her CRPS worse. Since your have been dealing with this for years you probably already know this. I give my wife full credit for getting m out of the recliner because she refused to enable me. Although very supportive and loving she got tired of me being attached to the recliner and basically encouraged me to advocate for myself. (I believe her exact words were, "put on your big boy pants and deal with it.")

She was absolutely right, although I did not appreciate it at the time. I did lots of research, discovered tDCS and I am now so far removed from where I was just two months ago.

Although I certainly don't know your wife's circumstances, I do know the incapacitating effects of depression with CRPS.

I will pray that your wife and you will find relief!

Hi everyone
 

Hi, I've posted a few times on here for various help, but I've never introduced myself or my story, so here goes...

My name is Mandy, I'm 48 & live in Devon, UK. I was in a violent & abusive marriage & got quiet a few injuries over the years, my wrist was hyper-extended both forwards & backwards & my jaw was fractured, these 2 injuries were done in Oct 96. He was in the army & his friends got fed up so 'sorted it out their way', while he was confined to the camp med centre they helped me move to the other end of the country (a couple of years later he went to prison for manslaughter, at least I left with only a disabiliy). The pain continued & over a couple of months increased. I had a really useless doctor to start with, he just kept giving me co-codamol for the pain, which wasn't helping. I changed doctors & got referred to a hospital for tests etc, (saw about 8 different 'experts' with no help). In 98 I saw my 1st pain specialist & was diagnosed with RSD. He did all the usual blocks even traumatic physio, but because it'd been left so long he couldn't do much. By this time my hand had clawed badly & pretty much set. They put me on morphine for the pain, but the prescription got made up wrong, the dose I was supposed to have in the full day was given as each dose, so I ended up with a morphine overdose. I never went back to them again & now have problems any drugs which are morphine based.

I got referred to a different hospital & pain clinic. He put me on gabapentin & oral Ketamine. It took a while to get the doses right but in the end I was on 400mg of gabapentin, 4 times a day & 5mils of ketamine, 5 times a day. I could just about tolerate the side effects from these levels. No physiotherapist would treat me cos I had so much pain still & my hand was so badly clawed. My daughter & I eventually got the hand to sit normal'ish by ourselves, I had to wear alot of braces & straps to do it & I must admit I went to hell & back with the pain. There my treatment stayed till I moved Nov 2010.

The new pain clinic I was at to start with was awful, my daughter & I knew more about RSD than he did, he acted like a drug dealer & made me both uncomfortable in his company & an addict, rather than someone who is ill & in need of his help. I had to come down off my ketamine with just my daughters help. I was having 5 doses a day of 5ml at a time. I had about 300ml left to do the come down in. It was not easy, my pain increased, I had no end of flare ups & my RSD started to spread. I'm with a different pain clinic now in Exeter, it's an a long way to travel to see them, but at least their good. I'm now on pregabalin 150mg twice daily & have lidocaine patches. I see a physio once a month & the consultant every 3 months. This may not sound good treatment to some, but here in the UK it is, it's a lot more than I had before as I only saw a consultant once every 6 months.

I now have RSD in my left hand/arm & in my left foot/knee & it's still spreading, I expect it'll get into the jaw & ribs, as that's the side that was broken & gives me pain from time to time still. I'm still in pain all the time but after the come down off ketamine I really don't want too many drugs, what I'm on just about takes the edge off it. I've started getting leg ulcers on top of everything else, which now need treatment too. I don't think I'd get through the day if it wasn't for the help & support of my daughter. If anyone has every deserved being called an angel, she does. The care she gives me daily is a very precious gift. She's just got engaged recently to a lovely lad who she's been dating for 4 years, he's a personal trainer & works with people who have cancer, MS or other bad medical conditions. He's been helping me, giving me exercises to do & I already think of him as my son, rather than son in law to be. I'm so happy for them both to have each other.

That's my story, pretty much the same as everyone's, full of pain, tears & changing doctors. I chose cinders999 because 999 is our emergency number in the UK, & cinders because one day I hope someone will find a cure for RSD & then 'I will go to the ball' or rather join the real world again! Sorry if I rattled on too much, but thanks for listening, I really needed it today, the pain is so bad I've typed most of this through tears.:Thanx:

Hi Mandy
 

I am glad you posted to us. that is what this site is for. I am sorry for your suffering. I felt your tears. It sounds like you have been through alot not just with the abuse, but with the RSD in your body. Do you have some measure of control in the pain? You mentioned some of the doctors you have seen, don't know alot about RSD. In this country also, many patients know more about it than their doctors do. I hope you get the help you need.

It is also nice to hear about your family. Your daughter and son-in-law sound like good souls, who are there for you. My son is a occupational PT, and has that caring attitude toward me. I feel blessed to have his as you do your family.
I will keep you in my prayers. I don't have RSD. But I do have pain issues, and go to a pain specialist who for the most part is very good to me.
You are welcome anytime to vent, and talk to us. I stayed with NT because of the supprt I received from all the good people here. I continue to come back as often as I can to give support to others that need it. I wish there were a cure for RSD and that people didn't have to suffer with it. Take care, ginnie

Thanks Ginnie, I could do with some extra prayers at the moment. I have very little control over the pain today, neither the breathing exercises nor the tai chi seem to be helping much at the moment. I think it's just one of those days we all get, where nothing helps. I can guarantee banging your head on the wall doesn't help (I tried it earlier :( ) That old wives tail about 'stubbing your toe to get rid of a headache' just isn't true! :hug:

prayers and angels
 

I am praying for you right this minute. Never think you are alone. I wish there was a way to reach you and let you know I care. I do have angels that help me keep in line in my own life, I will send one around to see you and visit awhile. I wish there was a way to take away your pain. If you can, go to Virtual Choir. It is on Google. It consists of 2,000 voices around the world who come together in song. For a minute, it will fill you with awe. Just maybe for those minutes while you watch, your pain will deminish. ginnie

New here trying to get the hang of things
 

My name is Beverly and I feel and broke my right ankle in 3 places 4 years ago. Almost immediately after I had surgery I knew something was wrong. My foot stayed swelled, purple, cold and hurt all the time. I couldn't stand the pain for it to lay on the bed or for the covers to touch it. The Doctor that did the surgery told me that since I didn't have insurance that he couldn't refer me for therapy. So I didn't have any and 4 years later I still have not had therapy. I was sent to different doctors each saying that is was RSD. I finally was sent to an Neurologist, who was the greatest doctor I have ever met. He looked at my foot and said yes it was RSD. He put me on all kinds of different meds and even tried the nerve blocks. ALL failed, he put me on Morphine and it took the edge off the pain, the RSD had already taken over my entire body. I also found out the the muscle in my stomach has split from the bottom of my rib cage to the top of my pelvic area, and when I go to lay down my stomach sticks out through the split. I was told nothing could be done. So he finally wanted me to try the nerostimulator. I tried the trial one in January of this year (2012) and it helped a lot with the pain. The end of February I to the Spine Center and had the surgery to have the permanent one put in. I am now having cramps and muscle cramps everywhere in my body. I have headaches, my neck hurts and I feel sick to my stomach all the time. It's hard for me to eat anything (not that I couldn't stand to loose some weight). My husband has went with me to the doctors and he has heard what they all have said, but he said it is hard to believe that the RSD can take over my entire body. I have had a doctor from the spine center say that it doesn't take over your entire body. I don't know what to do, all I know is that I KNOW my own body and how it feels. I am still taking morphine 60 mg 3X day, neurontin 800 mg 4X day Xanax 1 mg 4X day and clonidine 15 mg 3X day. Along with all the rest of my regular meds that I have to take. I have tried to walk and all I do is fall down my legs are like noodles, and if I turn down the stimulator then the pain comes right back. I use the stimulator 24 hrs a day. The spine center said that out of all there patients I am the only one that uses the stimulator 24 hrs a day. Everyone else uses it about 50 to 60 % of the time. I can only sit up for about 4 hrs then I have to lay down. I only get about 4 hrs of sleep and I scream out in my sleep if I move at night, I am tired, and cry all the time. I have had several broken bones before and I just don't understand how this time was so different and I ended up with RSD. That's in a short version my story.

Oh Beverly...I am SO sorry to hear what you are going through. Sounds like it has been just an awful time for you these past few years and (as is often the case) I am appalled by the lack of care you received early on that might have prevented most of this especially since the doctors diagnosed you and knew what they were dealing with. How awful. Many people with RSD have been made worse by the spinal chord stimulators and I don't think I would ever risk that...but then on the other hand I do know what it is like for the pain to be so awful and to be so desperate for relief that you will believe just about anything the doctors say without doing your own research on it to find out if it's really the best option for you.

One of the members on here, CRPSjames, was made worse by the SCS and he has found amazing relief from tDCS treatment. The equipment only costs about $300 and you can do the treatments at home. I just started this a month ago and I too have seen some improvement already, as have others. There is a thread on here about it and I highly recommend reading through it. It's many many pages long but I know when I read it, it filled me with great hope that here was something that was not invasive, has little to no side effects, can be done at home so no travel to and from doctor's offices, and it is incredibly affordable and people who found no success with anything else are seeing great results. This may be a good option for you after everything you have been through.

Take care. This is an excellent forum to ask questions, seek out advice, or even just to vent when you need to. We all understand what you are going through as we live with this monster on a daily basis to one degree or another. I am so very sorry for all that you have had to suffer through.

Hello Beverly
 

Welcome to Neuro Talk. I am sorry that you suffer with this RSD. I don't have the same condition, but I do understand what the illness is, and have empathy for what you endure. There are alot of folks on NT, who will be here for you. More research needs to be done, thats for sure. I don't even think the doctors really know what exactly triggers it. It seems it begins with some kind of trauma to the body. I hope alot of people respond to you. The SCS has helped many to cope. I wish there were answers to this Beverly, that it would just clear up and go away. I am glad you found some doctors willing to help you with it. I will be thinking of you, and keeping you in my prayers. ginnie

Thank you so very much for the information.
 

I will look into the information that you gave me. But, since I am in a lawsuit, I have to do what the doctors tell me to do. You see I fell in a hospital, there was something on the floor that made me slip and fall. So nobody wanted to do anything because of it. My lawyer is the one that sent me to the doctors that I am going to now. Right now most of the time I just stay in the bed, the headaches have gotten so bad I can't stand any light at all. I will try and visit the website as much as I can. Again thank you for the information.

Thank You
 

Thank you Ginnie I can use all the prayers that I can get and I appreciate them all. Prayer has been the only thing that has kept me going. Right now I just stay in the bed, I can't handle the light because of the headaches that I have now.:( I will try and check the website often. Again Thank you. :)

Taking Deer with a Motorcycle...out of season.
 

I have finally arrived at a crossroad...the end of denial about my CRS. I was 'fortunate' enough to get the rare opportunity to legally take a Deer out of season, on a Motorcycle. Messed-up details aside; developed CRS in right leg/ankle below knee. Has been making my life miserable and devoid of fun. Chronically broken toes, extensive numbness, swelling, etc...continued loss of functionality.

Three Nerve-Docs told me that it will eventually take me off my feet without extensive treatment ("yeah...right"...so I thought). Was eventually electrified, irradiated, scanned by cats, poked with needles, prodded, massaged and podiatrically molested in every form. Perhaps like others of us, I grew weary of such further indignities, figured I could "take it", and separated myself from treatment (other than meds).

It has finally came to a point where I have to question my long-term future, to swallow my pride and accept what has happened. And I am horrified at the thought it may be too late and eventually require amputation. Although at this point I am willing to accept it at as well.

Has anyone else ever 'mis-underestimated' CRS?

To the point of self-denial and acceptance of un-needed suffering?

I think that many many people underestimate CRPS/RSD and what it can do to us in our lives. It really is absolutely horrific the pain we go through and I think that if you don't HAVE it you really can't truly understand the depths of that pain. Don't get me wrong...there are other absolutely awful things out there and I can sympathize with those people who have them...but just like I think they cannot really understand what it is like to live with RSD I think that I cannot fully appreciate what it is like for them.

At any rate...I have decided to not do anymore invasive treatments. I experienced spread after a lumbar sympathetic block and now instead of just having the pain in my left ankle I have it in my whole upper body. Then...all the meds the docs had me on caused me to get seratonin syndrome...which was just awful to have on top of the RSD pain I have. So...after bouncing around from one doc to the next I finally said enough was enough. I ended up with a wonderful primary care physician who is very compassionate and who is willing to work with me based on what I want...not what will make the doctors the most money.

So I stopped all meds and started physical therapy (at home because I couldn't even drive myself anywhere in the car at that point). It took many months but I ended up with a wonderful physical therapist and eventually I went from being in a wheelchair not able to walk or stand to now being able to walk/be on my feet for hours and hours at a time (not to mention being able to drive and do all sorts of other stuff onmy own too). I got a TENS unit and an ultrasound machine to help me with the pain and I take hot baths with epsom salts too (these are really wonderful for the pain). The only meds I currently use are lidoderm patches and clonidine patches.

Just this past month I have started treatments with tDCS and I am seeing even MORE improvement in the pain and function with this (for which I am very thankful because although I got the function back with the physical therapy the pain levels were still very very high). I highly recommend reading the thread on here about it because it is not invasive and you can do the treatments yourself in the privacy of your own home for very very little cost (about $300 for all the equipment).

Anyway...I am very sorry to hear what you are going through. CRPS is such an awful thing to deal with and everyone is different (responds to different treatments and such). It's hard sometimes to make decisions about our treatment and it is very easy to get discouraged. Basically...the only reason I think I made it so far prior to tDCS is just because I was THAT stubborn (at least that's what my boyfriend says). I really think that physical therapy is the best thing. But you need to find all those little things that help you so that you can DO the therapy (whether that's meds or other things).

Take care and good luck. I hope you are able to find some relief soon.

tyvm for all the encouragement that i am not alone in this and i may get better

Hi

I'm 16 and have been recently diagnosed with CRPS in my whole body. It took me 5 years to be diagnosed. In that time the pain has just got worse and the problem has spread. I have really tried to explain the problem to both friends and family and no-one understands. I was just wondering whether other people found that both the doctors thought that you were lying or that your family and friends just didn't "get it".

Thanks

Apple16

Very sorry that you are going through this Apple...and at such a young age. I have had my fair share of doctors and people at work (and a lawyer) who treat me like I am exaggerating or lying about how much pain I am in. Bottom line...those are not good doctors in my opinion and you just have to keep looking until you find the right one (which I hope you have now that you have a diagnosis). And the other people...well...they just don't matter to me is what it has come down to.

I've been pretty lucky that my family and friends have never made me feel the way those others have and they have been 100% supportive throughout. BUT...I would say that despite how compassionate and supportive they are...they really don't "get" how bad the pain is and exactly what I stuggle with each and every day. How hard it is to make myself get up in the morning and to do the things that I need to do...to keep fighting. But I don't think it's their fault because I don't know that anyone who hasn't been through this and HAS RSD can REALLY fully understand what it is like (and I wouldn't wish it on my worst enemy let alone family and friends). Since family and friends are supportive, what I try to do in frustrating situations where I feel they are just not "getting" it, is educate them. They are always willing to listen and to try to understand. Not only is it good to help them understand but I personally find it sort of therapudic too.

Now that you have the diagnosis are they working on an aggressive treatment plan? Do you have any questions? This is a really wonderful site and I am glad that you found us because I know how helpful everyone has been on here for me. Take care...I hope they are able to do something for you.

Hello apple
 

I am so sorry that a young person like yourself has been striken with CRPS. Those around you need to be educated more about the condition. You certainly need some support. I want to welcome you here to Neuro Talk. You will find out information and a whole lot of compassion. Sometimes when a person is in severe pain, even family does not understand. You find out real quick who your friends really are. This site is here for you, and we will not abandon you. Do you have a specialist for your CRPS?. Do you have enough medications to help out? Depression can be an issue when pain is involved, so maybe your doctor should address that as well. There is help for this condition, and hope for it. You have to get the right kind of doctor in your corner to help you more. Keep posting your questions, and let us know how you are doing. I do care about you, and will keep you in my thoughts and prayers. since you are underage, you parents should be a big part of helping you toward a better solution to your pain. I am glad you found this site. I was in pretty bad shape when I found NT. I came here in a state of panick, crying, and definately not in control. I stayed, as my medical conditions stayed! I run back here as often as I can for the support I need. You will make some friends here too. Please feel free to post any comments or questions you have. Again welcome to NT, feel at home here. ginnie:hug:

My crps story
 

Hey everyone, I was diagnosed with crps about 3 months ago. I dislocated my knee playing baseball tore my mpfl and chipped part of my thigh bone and after 2 surgries I was left with constant pain in my right leg. Next week I'm getting the nerves "shutoff" in my knee I believe this is called cryoblation. Hopefully this helps, as of right now my whole life is upside down, my favorite thing to do is play sports, baseball inperticular and I can't even swing a bat. To make matters worse I am a construction worker and I am unable to work. Currently I'm on lyrica 100mg 4x a day it really helped in the beginning with getting me back walking. Was wondering if anyone is in a situation like me, this is by far the worst thing that's ever happened to me.

Thanks or reading looking forward to hearing from you guys!

Welcome to NT. Sorry to hear what you are going through. I've never heard of cryoablation for CRPS and I'll be very honest and say I don't know much about it. But with "cryo" being part of the word I assume that means that there is ice involved in this treatment in some way? I would just caution you that with CRPS/RSD the rule of thumb is NO ICE because this can cause spread. Many doctors are not very knowledgeable about CRPS so I hope that you have one who IS knowledgeable and who specializes in treating the condition. I know that when you are new to the condition it can be very hard to determine if you doctor knows what he is talking about because you don't have the experience with it yourself and you have not had a chance to talk to people who are going through the same things. But if a doctor tells you it can be "cured", that it cannot spread, that you should treat with ice, that you should immobilize the limb, or that it can only every be in an arm or a leg...those are typically red flags (all of these of course apply AFTER the Dx or suspicion of CRPS and not before).

I'm glad that the Lyrica helps...in the beginning it was (for me) one of the very few meds that made a noticeable difference in the pain and kept me walking (for a time). Are you doing any sort of physical therapy? Physical therapy is usually very key to the treatment of CRPS (though you do need to have your pain controlled enough so that you can DO the physical therapy).

Take care and keep us posted. This is an excellent forum to ask questions, to get support, or even just to vent when you need to. I don't know what I would have done without it these past couple years.

Hi Unlucky,

Catra is correct. This type of surgery has an extremely high rate of spread of CRPS. At the very least put this surgery on hold until you a) get a second opinion from a CRPS expert (steer clear of orthos and neurosurgeons) and b) do you OWN extensive research. By research I don't mean getting peoples opinions on blogs but by reviewing scientific evidence. This surgery will likely make you more "unlucky".

When it comes to CRPS the most important thing is to get smart real fast by learning how to be your own best advocate which will protect you from procedures that have a high risk for making you worse.

You may start this process by searching Pub Med. (Published Medical Research)

Remember, asking a doctor how many CRPS patients he or she has treated will likely give you no useful information, particularly if they butter their bread with revenue producing procedures and surgeries that benefit their bank accounts more than their patients.

My personal opinion about CRPS is that acquiring CRPS is indeed unlucky but surviving and recovering from it has nothing to do with luck and everything to do wi becoming a well educated and well researched advocate. Part of this process is learning when it is time to dump a doctor. These are all skills that are unpleasant but absolutely necessary to manage this disease.

Hope better days are ahead for you.

Hi Apple,

I am so sorry to learn you have CRPS and have gone through so much
suffering before it was confirmed you had CRPS. My daugher while much
older than you also has CRPS resulting from surgery and despite the fact
the doc who did the surgery beleiving it was CRPS and sending her to a pain
doctor it was close to a year or over before other doctors confirmed and
she lost valuable time.

Sad to say this happens all to often. Things are improving, for example I
noted recently in our state nurses going through training and even those
trained are being required to add so many hours of instruction since nurses
are sometimes more exposed than doctors to help spot the problem of CRPS.

It is so important for support from family and friends. It is true family and
friends cannot really know how it feels, the challenges from day to day since
they do not feel the pain. I have tried to educate myself and continue to
do so daily since there is so much to learn and sometimes I get so frustrated and even angry at others who are part of my daughters circle,
because they have not taken the time to learn and to understand and without doing so people make judgements of those who suffer from
CRPS,

Please understand however there are those who do care, you have come
to a wonderful site with people who do care. Don't give up, you are on
a journey through pain but you are not alone.

:hug:Joydee

Thanks very much for your advice, I am doing physical therapy though I am limited to what I can do. The procedure involves a needle that gets really cold when they put it on the nerve. My doctor has explained that this is not permanent and may only last a few months. I have talked to another patient who gets this done and said it helped, after oing research I found a study where it helped 6 out of 10 patients but it is a rare procedure for a leg, I honestly just want to get back to work, and if some of my Pain went away maybe I'd be able to do more at physical therapy and gt strong enough to work.i guess all I can do is hope it will work.

Added them together
 

I do apologies I should have stated all this first before I posted the other post.
I'm Phil I'm 40 something ( see its not just women who are shy about there age) I've suffered with back and neck troubles for over 20 years and I've just been diagnosed with CRPS .
I used to love hill walking with my Huskies but I cant do that any more but they still get there fun pulling me on my Mums old Mobility scooter.
I've just swapped my car for an automatic which means I can drive again when the drugs let me .
I'm Married (sorry ladies ) have a 21 year old daughter who's still a student.
and Last year was the worst of my life. I was ill in march 2011 which turned out to be CRPS ? My Auntie Died of Cancer and My Mum who I cared for died on the 13/12 of skin cancer ,so Xmas was crap and My old dog had to be put down on 13/01/2012 and now the CRPS has spread through out my body.
hey ho everything comes to he that waits or so they say.
There's a lot more I could say but I'm sure you all have your own problems so I wont bother . Thanks for letting me rant.

I have suffered with sever back trauma for over 20 years . I had constant pain which now and then say 3 times a year would go berserk for no reason other than twisting and force me to use crutches and leave me in agony for weeks or months. In March 2011 I had an ingrowing toe nail on my right foot which went septic and after being given 6 lots of Antibiotics (one of which I was allergic to and made me seriously Ill ) I had a reaction and both feet Ballooned to the point where I could not ware shoes or socks . After 12 months of Blood Tests and X Rays and the Like . I finally got to see the right Doc ???? Who Diagnosed me with CRPS . He Informed me I had not got Osteoarthritis in my spine hips etc as I had been diagnosed with 20 + years ago but CRPS . My doc put me on Lyrica and it does help take the edge off I'm on 300g a day . Lately the past 3 weeks or so I have had pains in my elbows forearms and my hands are slightly swollen and the palms are red. I am finding hard to use my crutches and it all seems to be getting worse.
If anyone can give me some advice as to me having CRPS etc , Like can it spread through out your body that quick , and where will it stop , I would be grateful. Thanks in advance Phil.