May
5
2011
Paulette's Blog
A Place of Worship: "Tugging at the Heartstrings of God"
It still amazes me, that some doctors who treat patients that suffer from RSD/CRPS are still questioning whether or not RSD spreads. They are telling patients they are not experiencing spread, only for patients to find out sometimes much later, that they had experienced spread. It is a very sad commentary, that some doctors are still so misinformed about the etiology and treatment of Reflex Sympathetic Dystrophy Syndrome/RSD, or Complex Regional Pain Syndrome/CRPS! The greatest hope for a positive response to treatment is most often realized when patients are treated early and aggressively. However, in far too many cases, this does not happen. Time is of the essence! Having said that, YES RSD does spread! Why does RSD spread? Sometimes it is simply the nature of the beast! Patients can follow the instructions of their medical professionals which include Neurologists, Orthopedic Doctors, Primary Physicians, Physical and Occupational Therapists, and Autoimmune Doctors, to the letter, and still experience spread. This list of medical professionals is not all-inclusive as there are other specialists who participate in a patient’s care. Sometimes a patient may injure a part of the body that was not previously affected by RSD, or they may re-injure the affected limb(s). A spread can also occur after having surgery. There are any number of reasons why a patient may experience spread, as each patient is unique. However, without a doubt unfortunately Reflex Sympathetic Dystrophy Syndrome does spread. According to statistics, 70 % of patients who suffer from the syndrome, will experience spreading of the symptoms. 
Paulette's Blog 
Hi Paulette,
You explain this so well…. Thank you for sharing.
Love,
Margaret
Hi Margaret,
Thank you. Since this topic is new to most who read about it, I do try to explain the information, both concisely, and clearly. Your statement leads me to believe, that so far, so good. I do appreciate it. 🙂
Yours in Christ,
Paulette
My word Paulette you go through quiet a lot and I thank God for you my friend because you still find time on your good days to go gaming with me. Thanks for sharing all of this helpful info,I had no idea.
Love ya 😀 😀
Thanks Pat! Some patients experience one type of spread, and sometimes maybe two. Some unfortunate individuals, suffer from full body RSD! This can be so confusing to someone who has been newly diagnosed, so I’m trying to make it a bit easier on anyone in that position, who may read this article. My heart truly goes out to anyone, who suffers from this condition, especially those who are newbies! It is a lot to take in, and I’ve only scratched the surface! God be praised! Whatever my lot, Thou has taught me to say, it is well, it is well, with my soul!
I enjoy the gaming time, with you. It’s a bright spot, on my good days! 🙂
God bless you, my friend.
Paulette
Thank you, Paulette
You deal with so much and still you find time to share this information and to say a prayer for us. Thanks for praying for me. I’m on the mend (God be praised!).
Your posts were my first introduction to RSD and I’m thankful for all you continue to share.
Blessings to you and yours. I appreciate you, Minister Paulette.
Blessings,
ann
Hi Ann,
My goal here, is to share information, that will be helpful to those whose lives have been touched by this dreaded syndrome. Also as you know, I desire to bring about awareness to those who have little knowledge if any, about this disorder! I’m really glad that you appreciate what I have shared thus far. I’m thinking about starting a blog, that specifically addresses RSD after writing a few more articles here. My hope would be to export the articles that are here, to a site devoted fully to RSD/CRPS. However, I haven’t made up my mind yet. So in the meantime, I will continue to share about this syndrome on this blog. I really appreciate all of you who read these articles, and comment on them. That means much to me.
Thank you so much, again. I was so glad to see that you were able to be online again, which hopefully means you are feeling better. I’ll continue to pray for you, and I solicit your prayers as well.
God bless you!
Paulette
I will continue to pray, Paulette.
I’ve always prayed for you but never thought of praying otherwise. Thank you for being specific in your request. This helps me pray with understanding.
Still believing for a miracle,
ann
Thank you so much, Ann! Being specific, when requesting prayer, does make a difference! Also, thank you for believing with me, for a miracle!
Blessings,
Paulette
Dear friends,
I’m asking all who have a rich prayer life, and are able to get a prayer through, to pray for all who suffer from RSD! There are millions of us! The Word of God says, where two or three are gathered together in my name, there am I in the midst! Join us in prayer, that God will enlighten the medical professionals, as well as what little researchers there are in this field, so they will be able to find better treatments, or even a cure, for this terrible syndrome!
Thank you so much! May God bless you all!
Paulette
Paulette:
Thank you for posting about RSD and people living with it. I have just recently been diagnosed with RSD in my left wrist and hand (about 3 weeks ago) after hitting my elbow back in January 2012 and having elbow surgery 4 weeks ago to repair the tendons that I tore from hitting my elbow. When I went back to the doctor for my checkup from surgery and because I was having so much pain in my wrist and hand on the operated arm, the doctor told me I had RSD. I had no idea what it was or what kind of pain I was facing. To say that the pain is excruciating and debilitating at times, is an understatement. After researching this disease, I had no idea that it actually spreads. A normal person without RSD has no clue what sort of pain we endure on a daily basis. I have just begun going to a pain management doctor and he is trying to control the pain with meds right now, He has suggested the neurostimulator being a possible option down the road, but right now he is trying conservative treatment with meds. They don’t seem to be helping too much right now, but we’ll see. I think I just need to give it a little more time. Yes, I do believe in miracles and am praying for the Lord’s healing hand to come upon my wrist and hand and heal them miraculously. What a testimony that would be to share with others. Not out of the realm of possibility for the Lord because he does say that “By His stripes we ARE healed”, and in our family we have seen so many miracles that the Lord has done. To God be the glory! So, I am asking that you, as a sister in Christ, please agree with me in prayer for healing of this disease for everyone who has it. As I pray daily, I will continue to pray for all who suffer with RSD. Your friend in Christ, Christy
Hello Christy,
I do appreciate you stopping by, and commenting. However, I am definitely sorry that you were injured and subsequently diagnosed with RSD. The fact that you were diagnosed quickly, will hopefully prove to be advantageous for you. According to research, sometimes early diagnosis and aggressive treatment upon diagnosis can prove to be helpful to the patients in the long run. Nerve blocks can be used to diagnose RSD, but are also one of the treatments most often used early on, after being diagnosed. I was wondering whether or not you had received any nerve blocks as of yet. Upon diagnosis, I was treated with medication and nerve blocks. Like you, before diagnoses, I had never heard of RSD. Unfortunately, RSD does spread. Yes, the excruciating pain is quite often debilitating. I’m wondering what type of medication you are being treated with. I’m sorry that you’ve not had good results as of yet.
I suffer from idiopathic RSD, meaning reason for onset is unknown. I simply went to sleep one Sunday night, and I woke up in excruciating pain! My hand was swollen almost 3 times its normal size, and it was bent and stiff. That evening, I found myself in the emergency room at my local hospital. At present, I’m being treated with medication. The doctor suggested that I have the spinal cord stimulator implanted, but I opted not to go that route. However, I do know several individuals who have gone that route. For some, it has proven to be helpful. There is more information that I could share with you. If you would like to discuss RSD further, we could chat via e-mail. Just let me know if you are interested in doing so. I do believe in miracles, and I know that there is nothing too hard for the Lord! God created us, and anything God created, He knows everything about it! He is Jehovah Rapha, The God that Healeth Thee. He is able to do exceeding abundantly above all we can ask or think. I will be praying for you, and I will be praying the for millions which suffer from this syndrome! God is able. Let us also pray for those who are in research, as they seek to find a cure for this syndrome. May the Lord bless you, and keep you! I pray that your medication will begin to help. Remember, I’m available, if you’d like to chat via e-mail. Take care. I wish you the very best! I hope to hear from you again soon. 🙂
Paulette
I have learned about RSD 🙂 My sister is 44 and has limes disease (not curable) caught too late in the stages, her little son has it. They live in TN and got Bit by a Tick and didn’t know it… They suffer and I understand it now. She is amazing like you..bringing awareness to everyone. People like you really do share and bless those of us who had no idea what you suffer from. As two or more are gathered in my name, Jesus, Their I am in the midst. Jesus does heal, and performs miracles as it is written in His words. Dottie Osteen was cured of cancer, so He can cure YOU too~I suffer from chronic acne very painful and takes an emotional toll on me-Pray for healing of 6 years of doctors and no healing. I just give up. I created a new site where I can share my personal experience on Divorce… http://divorceissues.wordpress.com to share with others who suffer. The book and man who did this for me was Nick Vujicic: born without limbs ♥Jackie Paulson
Hi Jackie,
Thanks for stopping by. I’m glad you’ve learned about RSD. I appreciate your kind words. I’m sorry your sister and nephew are suffering from a chronic illness, as well! I hope your sister and nephew have excellent, caring doctors! Though there is no cure, it does help when doctors are compassionate, and are willing to listen to their patients. I’m sorry to hear that you also suffer from a condition which is chronic, as well as painful! I can relate to the emotional toll that your condition has had on you. Don’t give up!
I do understand your frustration though! In a few months it will be eight years, since I became symptomatic! I definitely have had my share of ups and downs, and a whole lot of downs! But I continue to give God praise, and I put my trust in Him. He created us and He knows all about us! I still believe in miracles, and I want you to believe in miracles for yourself, and for your family members as well! God doesn’t always move when we want Him to, but He comes right on time! I visited your new website already. It’s great that you’re willing to share your personal experience, in order to help others! Keep up the good work! Hang in there, and don’t lose hope! God bless you! 🙂
Paulette
Hi there auntie. This is the first time I have been able to put a name to what you have been experiencing. Thank you for the enlightenment and I have never stopped believing God for a miracle. I will simply add your request for medical enlightenment and increased research to my pre-exisiting request for a miraculous recovery. I believe God for/with you and the millions of others living with this disorder. By His stripes, you are surely healed. I appreciate your grace and the way you are still able to come across, even electronically, so pleasantly and so concerned about others. You have been a shining example of how to go through and I appreciate your light and your life! I miss you terribly, but now that I have been introduced to your blog, I feel like I can keep up with you a little more now.
Your nephew,
-Tim
Hi Nephew!
You can’t imagine the huge smile that came across my face, after I realized the comment I was reading was from you! 🙂 It’s great to hear from you! I’ve heard some good things about you recently! I’ll let you wonder about that for a while, LOL!
Tim, I appreciate you visiting the blog, and leaving a very thoughtful comment! Oh yes, by His stripes I am surely healed. I know that you know how to get a prayer through, and I thank you for trusting and believing God with me for a miracle! He has touched my body miraculously on more than one occasion, and I have watched God work in the lives of countless others! He’s able!
Thank you so much for your words of kindness! I miss you too! By the way, I’m still waiting for my pictures, LOL! Thanks again for dropping by. Take care, and God bless!
Your auntie,
Paula
Paulette,
Awhile back I happened across a video about RSD. If I remember correctly, I found it indirectly through one of your first articles on RSD. Anyway, the video featured a nine year old girl who was in so much pain from RSD, she told her mother she wanted to die. Her parents ultimately decided to try a controversial treatment (in Germany, if I remember correctly) which is banned in the US. The treatment involved putting her into a medically induced coma, during which her brain would reset its pain receptors. Sure enough, after she was brought back out of the coma, the majority of her pain was gone. She is now a vibrant teenager with the goal of becoming a medical doctor. She is still taking some medication management for her remaining pain, but the majority of her debilitation is gone.
Have you heard of this treatment? If so, have you considered it?
Hello Todd,
I am familiar with the video you spoke of. You are correct, about the treatment being banned in the United States. The nine-year-old girl was placed in a medically induced coma, which is called a Ketamine Coma. Because of complications suffered by an adult patient while having this procedure done in Germany, they are no longer performing this procedure in Germany, at least for the time being. However, this procedure is still being done in Mexico. There is a doctor in Florida, who determines whether or not a patient is a good candidate for having this procedure done, before a patient is allowed to take the next step in this process.
Like most treatments for this condition, the outcomes vary greatly, from patient to patient. Although I have heard some success stories for those who have taken the drastic step of having this procedure done, there are just as many stories, of patients experiencing unsuccessful outcomes!
There is a procedure called Ketamine Infusion, that has been approved in the United States, and widely used by doctors to treat RSD/CRPS. There are variations of this treatment, being used. A patient can be treated as an inpatient or an outpatient, over a period of possibly 5 to 10 days. I know of many who have had this procedure done, who are members of one of the online RSD support sites, which I am also a member of. Again, the outcomes vary from patient to patient. The amount of ketamine used in these procedures, is far less than what is allowed in Mexico, and what was allowed in Germany. I cannot emphasize enough, the fact that each patient is quite unique, even though we may have many symptoms in common.
Thank you so much for your concern, Todd. It is greatly appreciated!
Paulette
I have had RSD for 23 years. I am now 58. I got RSD from an accident at work I have a spinal cord stimulator implant. It helps with the pain. I also take pain medication. I was diagnosed with RSD after four surgeries on my right ankle. Each surgery caused more and more nerve damage than I should have.
Hello Kenny,
Wow, 23 years! Soon it will be eight years since I became symptomatic! Several years ago, my pain management doctor suggested a spinal cord stimulator for me, but I opted not to go that route. If it had not been for my faith and relationship with the Lord, I honestly don’t know how I would deal with this enigma! Thanks so much for stopping by, and for leaving a comment. I hope to hear from you again soon. Today, I was working on an article, about how doctors diagnose RSD. Perhaps you could stop by, and share your experiences, and any information you have on this topic. Take care, and God bless you!
Hi Paulette,
Hope this finds you doing well…I too was diagnois with RSD on March 22, 2012 . I had Rotate cuff surgery, back in Dec 2010 . I now feel pain in other shoulder near elbow just like Surgery arm which is the right arm. I also have feelings of numbness in fingers. Also burning which comes and goes. Do you think my could spread so quickly?
God Bless
Debbie
Hello Debbie,
I’m really sorry to hear that you were diagnosed with RSD. I hope you are being treated by excellent doctors, who are well-versed in this area. When suffering from RSD, one can become much better suddenly, or they can become worse suddenly, with no known reason for either occurrence. Unfortunately, RSD can spread rapidly, because it is a very progressive illness. I would suggest that you speak to your doctor as soon as possible, to let him/her know what you are experiencing in the unaffected area. If you have experienced spread, hopefully your doctor will be able to treat you aggressively and early, to reduce the ill effects of the syndrome.
If you have any other questions or comments, please don’t hesitate to write in. I will do my best to respond in a timely manner. God bless you, and I wish you the very best! Remember, an informed patient makes the best patient. Be very proactive when it comes to your care.
Paulette
please respond. i need your wisdom. i am feeling hopeful from finding your site. i have been livng with RSD since dx in june 2010. I need more help cause i think it is speading and drs here where i live know nothing about it.
Hello,
I’m sorry to hear of your diagnosis of RSD. I hope that I will be able to help you, with getting more pertinent information to you. If you would prefer to chat via e-mail, let me know. God bless you.
Paulette
I have been dx with rsd in my and recently had and unforturnate accident to my shoulder and neck on the same side. This accident caused my rsd to spread . Ithe have been under alot of stress the other day I saw a friend I havent seen in some time and was unaware of my RSD gave me a light punch to the same arm as my RSD which nearly dropped me to my knees from the pain. A day or so later with no injury or bump whatsoever to my ankle it began to swell and i am experiencing relentless pain and swelling in my ankle. I am extremely fearfull that it has spread as the signs are all the same. Burning relentless pain and swelling and very hot to the touch with muscle cramping in my calf.. Does anyone know if this could be a spread of my RSD. Its all on the same side is this possible.
I am very sorry to hear of your diagnoses of RSD, as well as the unfortunate accident you recently suffered! Unfortunately, it is possible that the RSD has spread to your ankle. You mentioned a few pertinent symptoms of RSD occurring in that area. I’m hoping that you are being treated by a doctor who specializes in the treatment of this syndrome, and if so, it would be a great idea to see that Dr. as soon as you can. This is necessary to get a clinical diagnoses as to whether or not the RSD has actually spread. As much as possible, I would suggest that you attempt to cut down on the stress in your life, as it definitely leads to much more pain! Are you on medication that is helping you to control the pain? Also, are you being seen by a pain management specialist? While you are in excruciating pain, it’s never a good idea to enter into therapy, as the tendency there is to cause much more discomfort and pain, rather than actually helping. However, if you are at the point of getting your pain under control, therapy may be helpful to you. As much as you can, I would suggest that you move your limb, because you definitely would know when to say when. If you have any further questions, please feel free to contact me. I will reply in a timely manner! If you would prefer to communicate via e-mail, just let me know. I will keep you in prayer, and I wish you the very best of everything! God bless you!
I was diagnosed with RSD by my primary Dr. and neurologist. I went to a new pt and he and my primary Dr. said it couldn’t be rsd because it spread to the other leg. The pt said it was a nerve root issue and with a few app. he could fix it. I dont even know what to do. I would love to believe the pt because i want to be well but i think he is wrong. I had a surgeon swear the same and i knew he was wrong. How do i educate them and not look like i choose to be sick?
Hello Off2cthewizard,
I agree with you 100%. When we notice things going on in our bodies which are definitely not the norm, we search for answers, and if necessary a diagnosis, so that we can get better! If you have doctors and pts who are not willing to treat you, properly, at this time, I believe you should seek to be treated by a doctor who is well-versed in the area of treating patients who suffer from this syndrome, so that you can be properly diagnosed and treated as soon as possible! Early diagnosis and treatment are crucial.
From my understanding of what you have shared here, it is possible that you may have suffered an independent spread of the RSD. “This is when the RSD is in one part of the body, and it abruptly or gradually spreads to a totally different part of the body.” Please move hastily, to find a doctor who will be able to perform a clinical diagnosis (see the article titled “Criteria for CRPS/RSD) so that you will receive the proper care. If you have any other questions or comments, please feel free to write in again at any time. I will keep you in my prayers, and may the Lord bless you, abundantly!
Paulette
I forgot to thank you for subscribing to my blog! I pray that it will be a blessing to you! 🙂 I’d love to hear from you, as you read through the articles!
no. thank you for this blog. I am in this matrix of pain and opinions and I’m lost. I am so thankful there are people pointing the way
just got a Dr. name in Seattle so I’m excited to have hope again.
Blessings Marcie
Hi Marcie,
That is wonderful news! I’m very happy for you! I will keep you in my prayers! I wish you the very best of everything! May the Lord bless you!
Paulette
I am so sorry to hear that you are having so much trouble with your doctor diagnosing your RSD. I was diagnosed on May 4th of this year, just 5 months ago, with having RSD/CRPS and at that time had never heard of it until I starting researching the disease. I had ulnar nerve surgery and within 2 weeks developed CRPS in my left hand, the same arm that I had the surgery on. The surgeon quickly recognized it and sent me to a pain management doctor who also recognized it and told me that it definitely could spread to other limbs. He put me on a regime of Lyrica and Nucynta and after about 3-4 weeks of excruciating, burning, gut-wrenching pain, I finally got relief from the medications. I have also had 2 stellate ganglion nerve blocks in my neck (no I did not feel a thing because they gave me medication before) and they helped with the burning pain, which was a miracle in itself because the doctor told me that only 20% of the patients who have the nerve blocks experience relief. I told him I believed in miracles, and the very next day, I got complete relief. However, I gained 36 pounds from the Lyrica (one of the side effects), but my husband told me the weight gain is much better than the pain he saw me in. After much research on the internet, the Lord led me to this website, Paulette’s blog, where I get some positive Christian information, hope from the wisdom of other people, and also, so I can pray for other people who are experiencing the same things as I am with the CRPS. The power of prayer is an awesome thing and it does work. I believe in the healing power of the Lord, and right now, I continue to believe for a miracle and for the Lord to completely heal my CRPS. When he does, I will share with the community the miraculous healing. The Bible says, “By HIS stripes we ARE healed.” I truly believe that. Lay hands on your affected part of your body and ask God for that healing that you need. I will continue to pray with you and believe for each and everyone on this site who has been afflicted with this disease, for their healing. I believe that is one reason why I am expriencing this disease, so I can pray for you. In Jesus name, Amen!
Hi Christy,
First of all, I wanted to apologize for not replying to your comment, in a more timely manner. On the day your comment posted, after adding a reply to off2cthewizard, I started dictating a reply to your comment, but for some reason I didn’t finish it. I also wanted to thank you very, very much for replying to off2cthewizard’s comment/question. You shared absolutely pertinent and relevant information, and I greatly appreciate you doing so. It is a wonderful thing to have knowledgeable individuals who actually care, and are willing to share the information they have pertaining to RSD, with others who are struggling to find answers to very convoluted and daunting questions, especially early on. Thank you so much for sharing some of your personal story, and for sharing Jesus and the power of prayer, in this comment stream. I do appreciate your input, very much!
I’m glad to hear of how the Lord is blessing you right now! Praise God! I know that God is able to do exceeding abundantly above all that we can ask or think! He is the Great Physician; Jehovah Rapha, The God that Healeth! Thank you again, for stopping by! I will continue to pray for you, and all who suffer from this syndrome. Stop by again anytime! May the Lord bless you, keep you, and strengthen you, in the name of Jesus.
Hi I am Penny I also suffer from rsd/crps and I was wondering: I have rsd in my left ankle and leg, now in my left arm, I am starting to have all the burning and pain in my hand so excrutiating however my dr keeps telling me it;s carpal tunnel and that when i go back to the office he wants to inject my wrist with steroids. I am very nervous about this i have had carpal tunnel in the past in the opposite hand and this is way worse any suggestions?
Thank you so much for all you do!
Hi Penny,
I was wondering whether or not your doctor is a neurologist, or an RSD specialist. When I became symptomatic initially, my symptoms began in my hand, but not very long after that, I began to develop symptoms in my upper arm. It is a great possibility, that you are now suffering from RSD in your hand, as well. I do understand your fear of being injected with steroids, at this time. Is it possible, or would you feel comfortable asking your doctor whether or not it would be feasible that you get a second opinion before having this treatment done? I do believe that is what I would do if I was in your position, before being injected with steroids. I would want to be absolutely, positively sure that it is not RSD, first. Also, if you decide to get a second opinion first, please be sure that you are going to be receiving it from an RSD specialist, or at the least, a doctor who is well versed in the treatment of RSD. That means, that you might have to do a little bit of research, in order to find the proper physician. If this would mean you having to travel a little ways, it would be well worth it to you, over the long term. Just please be sure, if you receive a second opinion that it is from a doctor who knows a great deal about clinically diagnosing RSD, and treating RSD patients. I hope this information proves to be helpful to you, and if you have any other questions or concerns, please don’t hesitate to write in again. I wish you the very best. May the Lord bless you, abundantly! I will be praying for you.
Paulette
https://www.facebook.com/events/391498447590329/
Thank you for sharing the information. God bless.
I have RSD in my right foot and right lower leg. I also get flare ups at my incision sites (my mid back and right butt cheek) where my spinal chord stim was implanted. In the last few days I have been experiencing severe pain in my left foot close to what I feel in my right. I’m very scared. My RSD only started in my right foot and spread up my leg a big I don want to be diagnosed as having it in my left too. Any suggestions?
It is common for Rsd to spread the pain mirroring the other limb. Mine spread from my right leg to the left. There is Hope I had nine Calmare treatments and am pain free. It is my strong suggestion because Rsd.only professes over time.
Hello Anonymous,
Thanks so much for stopping by, and for leaving a comment. It is greatly appreciated! Thank you so much for sharing about Calmare treatments! I think this would be the first time that I have heard of these treatments. It is wonderful to hear that you are now pain-free! 🙂 Take care! May the Lord bless you! http://www.calmarett.com/
Paulette
It is new but healed my legs! So many of these treatments violate the body risking a spread and have a very low rate of temporary success. At over an eighty percent success rate, no drugs or surgery Calmare is miraculous. It real and should offer Hope for a cure.
Hi Off2cthewizard,
I’m sorry that it has taken me so long to respond to your comment. I am glad that you are healed, and are now symptom-free!!! That is wonderful news! 🙂 🙂 Thanks so much for helping to bring hope to those who are suffering from this horrific syndrome. I do appreciate it! I will definitely tell my friends who are suffering from RSD, about the miraculous effects of the Calmare treatment. If by any chance you’d like to share your story on the blog, please let me know. May the Lord bless you abundantly! 🙂
Paulette
I would love too. I’m in this for the long run. I want to help because people cares enough to help me. Tell me what I can do.
Hello Off2cthewizard,
I apologize for the tardy reply. I have been very ill. The RSD/CRPS has been flaring for weeks now! I am extremely debilitated. Thank you so much for your interest in helping to bring hope to those who are living with this life-changing syndrome! If you would like to share about your experiences, struggles, and triumphs on the blog, that would be wonderful. Just let me know, and I will contact you via email when I am able to. Thanks again for your support! May The Lord bless you!
Paulette
Hello Rita,
I’m sorry to hear about the severe pain you have been experiencing in your left foot. Unfortunately, RSD can spread to other areas in our bodies, which were originally not affected by the syndrome. Receiving early and aggressive treatment, can sometimes help to reduce the likelihood of a spread. However, in other instances, it is as if RSD has a mind of its own, and one can experience a spread, even though they are doing everything “right.” Sometimes, we experience pain in the unaffected limbs, because we put so much pressure on them, because we are favoring the affected limbs. When experiencing a spread, it is very likely that one would experience several of the other symptoms of RSD, along with severe pain. Have you been experiencing temperature changes, discoloration, and/or swelling, in your left foot? If the severe pain continues, I suggest that you contact your doctor, to have that foot examined. Please feel free to write in again, at any time! I apologize for not responding to your comment in a timely manner. Take care. I wish you the very best! May the Lord bless you!
Paulette
Praise the LORD my Dear Sister. I have prayed the prayer of Faith for you and I have missed you on WordPressI Take care of yourself.
Love ya!
OWPriince
Praise the LORD Bishop Prince,
Thank you so much for praying the prayer of Faith on my behalf. Our God is well able!!! I appreciate you, and I miss the fellowship on WordPress, as well. I hope you are well. Stay blessed!
Love you!
thank you for this.. I’ve been praying about starting a blog on this horrible syndrome. God really moves through it does He not? I was just diagnosed the beginning of the month, however I have been struggling with massive intense pain for almost 8 months and it’s moving up my leg and hip. I am a mom of 5 and becoming so bad I have about an hour of walking time in a day. This has affected all of us. I just want relief.. even for just 5 minutes.
I had a crush injury to my right hand June 2012. I was diagnosed fairly quickly but did not receive treatment quickly because I had to fight work comp. Approx. Three months after injury both my feet swelled with severe buring. The symptons subsided and about two months after that I over used my right hand and experienced severe burning, reddness, and swelling to only my left foot. My right hand is chronic pain, but my left foot comes and goes. If I over use my hand then my foot will flare up. A chiropractor adjusted my right hand and several hours later my hand and left foot were unbearable. It was severe nerve pain to the area that a sock would cover on my foot. Nothing could touch it. All I could do was cry and it lasted about a week. My hand is mild RSD compared to others I have read about. I manage quite well and try to tough it out. Nerve blocks really suppresses it for several weeks and during that time I have no problems with my foot. Recently however, my left foot has been flaring up and I cant hardly bear weight on it and then it will subside.
It feels exactly like my hand pain and has been going on for a year. My work comp Dr says RSD does not spread that way. Im pretty sure the RSD has spread. I was wondering what advise anyone else has for me and does it sound like it has spread to anyone else. It is so frustrating. Also can RSD make you feel exhausted and sickly. I feel like Im falling apart.
Thank you
Hello i have had rsd in my left knee since 2007 . I lost my job cut of it .I was a truck mechanic for 20 years and in one day in was all gone. I would never in my life have thought I would take as much pain medication as I do. And I don’t take all that is given to me to take cut I want to be a part of my wife and kids life not a sleep. Now the pain is getting worse as time goes on and now my ankle is purple and hurts all the time. My knee only goes to 35 degree of straight and want even bend to 90. I fell from my waist to the ground 2 summers ago and broke my femur . Somedays I am not sure how I made it but I have .
Hi,
Living with RSD has turned my world upside down! Friends have walked away, family they pull away cuz your just not the same and if I have taken my medications then for sure forget it. I struggle with memory, eating. I randomly vomit for no reason and have had all the tests in the world and they find nothing. My left side feels like my bones are trying to go one way and my muscles are pulling the other way and you think your limb is going to break itself. Thru other testing while trying to deal with RSD, they found a hole in my heart that can’t be fixed until I have two strokes , per my insurance and they found I have a seizure disorder . I am so confused, angry, why, disappointed , sad. I feel if I had cancer where people could actually see and be able to treat life would be so different. I don’t know anymore to be honest.
Thanks for listening and sharing.
Diana
Hi my name is Karen, I was diagnosed with RSD in the bottom of my right foot at the age of 10 and have had this for 18 years now. It is amazing to see how God has worked in my life, and used this painful condition to understand others in their pain as I am now a Footcare nurse.
I am currently looking for information on Immune involvement and RSD. I am very curious to see if their is a relationship. I have recently developed several allergies to foods(not life threatening however skin irritation- hives, and itchy ears). I also have get muscle spasms frequently in my legs,back and arms.
My RSD seems to have stayed isolated to one area of the bottom of my foot, however over the past year the swelling has increased and is now making the top of my foot swell(no hypersensitivity).
I am trying to stay off of medications as much as possible.
One treatment that works really well for me is called Laser therapy.
I hope and pray that everyone of you on this site hold onto the fact that you are not alone. God is always with you.
Thanks,
Karen
I’ve been diagnosis with CRPS in my lower left leg (which moved into my foot and up to knee). I’ve had two spinal column implants, battery in right hip for first one and battery in left hip for second. I never had this kind of pain in my hips and back until the second stimulator surgery. Now the pain in my right hip is just as bad as my leg. I have a burning sensation on my upper right thigh too. I’ve asked if they think it’s my CRPS spreading and they said no. I’m not so sure. For my back pain I’ve had RFA (burning the nerves) done every 6 months and it has helped. My last spinal stimulator surgery was in 2010. This past six months I continually go down hill. My pain increases with any movement and eventually makes it hard to walk. Does anyone have any ideas of is this spreading? Anyone have something like this happen? My quality of life is slipping away.
Thanks for sharing your thoughts about micracoustic. Regards
I have RSD in my left lower leg. I’ve had two surgeries to have two different stimulators put in. Now I’m in the process of having a third because the second wasn’t put in the right area. The reason I had the first one removed is because I was in so much pain at battery site. I had changed private insurance to the VA. They thought the battery was in the wrong place and that is why I was in so much pain. The second stimulator wasput in and the battery was put in other hip. Since I’ve had these surgeries Ive had severe pain in battery sites and back where I had the implants put in. I’ve asked my dr if they think my RSD has moved since at times these sites are causing me so much pain it overcomes my leg. I have trouble walking, sitting, and am in worse condition. How can you prove to them it’s moving?? I have been biting my nerves and that seems to help some. Thanks!!
*Burning*
Hello! I could have sworn I’ve been to this site before
but after going through some of the posts I realized it’s new to
me. Regardless, I’m certainly delighted I came across it and I’ll be book-marking it
and checking back regularly!
I was diagnosed with RSD in 2009. Recently I have been having exactly the same pain in the opposite foot. I just left the pain doctor. I am so frustrated, it’s as if he didn’t want to listen to me. I am so tired of being in pain. It is affecting everything. Just when I was getting use to it and making adjustments to manage my pain. Now this, I just don’t know where to turn now.
I was originally diagnosed 3/2011 due to a shattered rt wrist. I have a spinal cord stimulator, implanted 9/16/13. This year, the tremors and pain in my legs have increased to the point of being unable to drive some days and it is very noticeable when I walk (with a cane). My pain management dr actually told me that CRPS doesn’t present in this fashion and sent me back to my neurologist. I increased my magnesium intake and that seems to be helping. My neurologist is in another city and she will see me in May, but she is furious! I was dismissed from PT last fall as they told me there was nothing more they could do for me, so now I do it on my own at home. As soon as I feel more confident with my legs, I’ll go back to the YMCA and get back in the therapy pool. This does spread, and I haven’t found a way to stop it.
I dislocated my right shoulder in Halloween 2014. RSD set in overnight in my shoulder and moved down to my right hand and wrist. They both swelled and turned a horrible red and the skin got tight and shiny even if the swelling went down a little like it would occasionally. It took 3 months to be diagnosed but the hand specialist who dxd me didn’t tell me he only wrote it down in the file. Verbally he said it was carpal tunnel which I’d had 20 years ago and didn’t cone close to hurting or deforming my fingers like this has done. He ordered PT but I didn’t have pain meds so I told him no way I was doing PT. I couleven touch my hand MYSELF much less let some PT work on it. If I’d known it was RSD I would have fought harder for pain management. I just suffered. The shoulder ortho I was seeing never saw the note in my computer file about RSD but he finally dxd RSD on June 2th. I finally saw pain management on June 3rd and she confirmed RSD. I got pain meds and started PT. The PT confirmed RSD as well. Thursday before last my temp pain management doc said she didn’t think the two docs and PT had dxd me correctly. She cut off my meds and muscle relaxers. I only get 3 a day. I told her I had petechea and purpura and milliform rash on both legs and my feet are swelling like my hand used to and my left hand hurts as bad as the right or worse and doesn’t that indicate I have RSD systemic. She said RSD doesn’t spread from the original site. Then as she was walking out she said she’s NEVER seen one RSD patient or EVER dxd RSD in her life but somehow she wants to dx me! She said I would have to go 6 weeks without any pain meds. The next day I called my Internal Medicine doc and told her what she’d done and she called one months worth of pills in. When I found out I was actually dxd with this in January I got so angry I called a lawyer. I will try to sue fir malpractice. Even if I don’t win I don’t care it’s the principle that they left me to suffer…