Living with Reflex Sympathetic Dystrophy Syndrome/RSD

Living with Reflex Sympathetic Dystrophy Syndrome (RSD), is like having a nightmare, and never waking up from it! RSD/CRPS is a chronically painful and debilitating neurological disorder, that affects the central nervous system, the muscles, the bones and joints, and the skin. This disorder can manifest spontaneously, after an injury to a limb such as a broken leg, or after having surgery, a stroke, or a heart attack. Even injuries such as a paper cut or pinprick, can literally change one’s life forever.

In 1995, Complex Regional Pain Syndrome/CRPS, replaced Reflex Sympathetic Dystrophy Syndrome/RSD. However, it is still quite common for doctors and patients, to refer to this syndrome as RSD. There are several characteristic symptoms of this syndrome. Some of the more common symptoms are extreme chronic pain, harrowing burning pain, extreme swelling of the affected limb(s)/areas, and profuse sweating in the affected areas. Other symptoms are discoloration of the affected areas, temperature changes, such as a foot that feels like a block of ice, even in a warm environment, severe debilitation, depression, dysfunction, and sometimes paralysis of the affected limb(s). The pervasiveness of RSD varies from patient to patient. (Criteria for CRPS/RSD).

Reflex Sympathetic Dystrophy Syndrome, can literally turn one’s life upside down, and inside out! However, many patients are able to live some semblance of a normal life. For example, some patients are able to work, take care of their families, and enjoy outings, etc. Usually, this is due to a patient receiving an accurate diagnosis shortly after onset, as well as receiving aggressive treatment early on. Most who suffer from RSD were once productive citizens with successful careers, who are now totally disabled. Through online support groups, I have met many others who suffer from RSD. So many who are living with RSD have had, or are currently having a very difficult time getting their disability benefits. Also, the way patients are treated is literally inhumane at times; a very sad commentary, indeed. They are told by doctors, family members, and friends, that they are not telling the truth about their pain, and it is just in their heads. I remember being seen by a Spine Specialist several years ago. At that time, the RSD was affecting my right hand, my arm, and my shoulder. The doctor was absolutely astounded by the level of swelling in my right hand, as well as the dysfunction of the entire limb. After examining me, and noting visible symptoms, he suggested that I talk to a psychiatrist! A psychiatrist? I was absolutely flabbergasted! He insulted me more than once that day. I left his office almost in tears and totally deflated, because I could not believe the way I had been treated.

Reflex Sympathetic Dystrophy Syndrome is not a condition that has just come to light. This condition has been affecting people’s lives since the Civil War era. Because the soldiers were suffering from extreme burning pain as a result of severe nerve damage after being injured, this syndrome was called causalgia at that time. RSD is a very progressive syndrome, and the level of progression patients experience varies greatly! Many factors are involved. What was the precipitating injury, if any? How long after an injury was the patient diagnosed; weeks, months, years? Did treatment begin immediately upon diagnosis? These are just a few extenuating circumstances, that could help to determine the prognosis for each patient. Many treatments for this condition are still considered experimental. Being tagged experimental, means insurance companies will not pay for some of these treatments. Thankfully, many treatments are now being removed from the “experimental” list by insurance providers, than had been the case previously. Doctors also prescribe a variety of medications, while some suggest that patients have spinal cord stimulators and pain pumps implanted to help to control the pain, in addition to other treatments. At this time, there is no cure for this syndrome. However, a small number of patients go into remission. In many instances, the remission is not permanent. For unknown reasons, children go into remission much more often than adults who are strickened with RSD. Unfortunately, many doctors are not well versed in the area of treating patients who suffer from this syndrome. I am not looking for pity at all. I want others to know about this condition, because there are very little if any funds allocated towards research to find better treatments, and even a cure for this life-changing syndrome. I want legislation passed, that will force doctors to be educated more thoroughly in the areas of exactly what Reflex Sympathetic Dystrophy is, and how to better treat people who are suffering from this chronically painful, debilitating, crippling, and life-changing, disorder. Please view the video. I had the privilege of meeting the young lady depicted in the video on a RSD Internet Support Site. To navigate to the article titled, (RSD Types I and II), click on the link. If you have any questions, or would like to leave a comment, please feel free to do so. God bless!

Note: Please read the disclaimer.

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11 comments on “Living with Reflex Sympathetic Dystrophy Syndrome/RSD

  1. Eventhough there is no cure for this syndrome, I believe in miracles. When doctors have no answers for me, I know the Great Physician, Jesus Christ, is able to do exceeding abundantly, above all that I can ask or think. I am waiting on Him. If He doesn’t heal my body, I know that He can! Though He slay me, yet will I trust in Him! In spite of what I am going through, I will yet give praise to God!

  2. Paulette,

    Thanks for making me aware of this condition. I am believing with you in prayer. The Healer is still in business.

    “… I know the Great Physician, Jesus Christ, is able to do exceedingly abundantly, above all that I can ask or think. I am waiting on Him. If He doesn’t heal my body, I know that He can! Though He slay me, yet will I trust in Him! In spite of what I am going through, I will yet give praise unto God!”

    Trusting Him to do this for you.

    Blessings,
    ann

    • Hi Ann,

      I wanted you to know, that I appreciate you interceding on my behalf. Matthew 18:20 says, “For where two or three are gathered together in my name, there am I in the midst of them.” Thank you for touching and agreeing with me through faith, in the healing power of our Savior and Lord, Jesus Christ. Jehovah Rapha, our God that healeth, is able! God bless you!

      Paulette

      • I am praying at this very moment. I was in bad pain once that lasted about a year, and I finally healed. When I think back to that time, and think about what you have been and still are going through…it makes me so sad.

        Theresa

        • Hello Theresa,

          Thank you so much for your prayers! At the time you were praying for me, I was not doing well at all! I was suffering from a severe RSD flare up. I have not been able to be on the computer for a few days, and I am struggling now, but I do feel a little better, thank God. I will be off and on the computer over the next several days, until this flare up improves significantly. When I am able to, I will respond to all of your comments. I appreciate your words of encouragement. Thank you, again.

          Blessings to you,

          Paulette

  3. Paulette, thank you for the information. I did not even know this syndrome existed. I watched the video and it was touching. You commented on a post I wrote about my brother who suffers from Cerebral Palsy. He has never walked, and most likely never will. But his condition and his way of life has touched me in ways I cannot describe. I pray that God gives you strength, and that you find peace and comfort. You have been an inspiration for many. Thank you. I am adding you to my blog roll if you don’t mind. God bless.

    • Hello Noel,

      Before I was diagnosed, I had never heard of Reflex Sympathetic Dystrophy Syndrome, which seems to ring true, for most individuals I’ve met, who suffer from this syndrome. My heart goes out to your brother, and all who suffer from chronically painful, debilitating, and disabling conditions! You are a wonderful brother, and you have a wonderful brother!

      Thank you so much for your prayer, and for your words of kindness. I am humbled, that you would want to add me to your blog roll. For that I thank you. May God continue to bless you, and your brother, as well!

      Paulette

  4. Pingback: It’s Worship Wednesday! | Paulette's Blog

  5. Reblogged this on Life as a CRPS fighter and commented:
    I could not have explained this better myself!
    When I find blog posts from others with CRPS, and it’s that post that explains what CRPS is in their own words…. I always reblog it. I think it’s very important for people to 1) know about CRPS/RSD but
    2) See how there are many similar aspects in each of us… But we all experience different things as well. Which is one reason that I feel it’s difficulty in treating the condition… Bc not one case is the same.
    We must hold on to hope, doctors are slowly but surely starting to understand what is actually going on, and what CRPS actually is.
    Soon, they will find more effective treatments. We are fighters. If Fighting through the pain until they find treatments, being a Guinea pig for doctors so they can try the different treatments/theories,etc. what it takes to help us all “put out the fire”, then I’ll continue to do so.
    I think we are close, keep fighting! We got this 😉
    Love, Heather Lynn

  6. I also have CRPS – very aggressive case, 4 years now. Watching that video brought me to tears, because I hate that this disease hits the younger ones. I’m now 51 and feel blessed that my children are grown and I was able to work (although I miss my career), and now I can enjoy Gods beauty. I am very tired of fighting for every little thing, it is exhausting – but I know God has a reason for this. I try to help others on the closed FB sites. I spread awareness as much as I can – I tell everyone I run into exactly what I have. To make it easier for others to remember, and hoping they will look it up, I call it CRaPS!! I explain I added the “a” because that’s what it is, a pile of crap! I use MYSELF as a guinea pig, and have slowly added supplements to my meds and so far they seem to be helping a bit. Thank you, Paulette, for this blog, my awesome niece, Carrie, found you for me yesterday. Keep up the good fight!!

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