An RSD Advisory Introduction

lightningstrike-3.jpg

About

RSD Advisory is an information, resource, support and research friendly adversaria relating to RSD(S)/CRPS, Reflex Sympathetic Dystrophy Syndrome, known also as, Complex Regional Pain Syndrome. Included here also will be information which might be directly or indirectly associated with CRPS/RSD itself. Having been diagnosed myself in 2003, after a 2 year delay, I can honestly say it’s been a hard and unstable ride.

January 26 2013 was the 12 year anniversary of the injury that led me through this tumbling journey. In a work related accident on January 26, 2001, the side of my shirt snagged on an unsecured fire extinguisher hanging on the outside of another employee’s grocery checker station. I was walking semi quickly as this occurred as the store was busy and I proceeded to trip and stumble across the store several times, crashing into displays, trying to use my hands to catch air, anything,  I was never able to catch myself or able to stop the fall. I was grabbing at air, but nothing was there to lend a hand.

Taken by ambulance from work that evening, I was diagnosed with a sprain/strain. A misdiagnosis as it was learned nearly 6 weeks later and after 3 physical therapy sessions that the tendons were actually torn from the bones of my right foot. I had a Mid-Metatarsal Separation. Surgery followed to insert a Lis Frank screw to attempt to attach the tendons and ligaments back onto the bones. The screw was removed 6 months later and my foot took on an abnormal healing path which led to my diagnosis in 2003.

More of my story can be found here-
My Story- The first 6 years

It has become my passion and purpose to promote awareness and offer support and assistance to others like me, to their families and friends so that they too might learn about this chronic neurological, neuropathic and auto immune disorder and the debilitating outcome many of us face.

A support system is necessary to achieve the best possible future for both the patient, the caregiver(s) and their families.                                                                 ~Twinkle V.

I am the California State Ambassador for the Power of Pain Foundation. I am honored to have been chosen to work for such a wonderful team.

I work both for the Power of Pain and Independently.

Please feel welcome to join my RSD(S)-CRPS Advisory Info & Support Group

Which is located on Facebook. Originally created on MySpace nearly 10 years ago. It is a closed group.

We take the privacy of our members very seriously. We are a family oriented group and want our family to be able to share what they like. On the internet it is difficult to secure everything that is said. Insurance companies, physicians, psychiatrists, worker’s compensation, family, friends, anyone can be watching. This is why we do our best to protect you. Nothing is fool proof though.

If you attempt to join and it seems it’s taking a bit for your request to be approved it is because we are checking to see if you are a CRPS/RSD patient, if you are a caregiver, or if you are serious about learning.

Trudy Thomas, Featured Blog Talk Host of Living with HOPE Radio show and several other shows on her Body, Mind and Spirit Network and long time member of our group is second in charge beneath me. She will add you as a friend. There must always be an open line of communication between Leader’s and Member’s. We no longer allow other groups to advertise their groups within ours, we did allow this until recently and it was taken advantage of. Once you are approved please read the Group “About” located on top and the Addendum to the About page in our files section and then make yourself at home.  We do still allow sharing, but I ask that you request permission from either myself or Trudy prior to especially if it consists of advertising  If  Trudy requests a friend invite and contacts you regarding your request to join and you do not answer her the likelihood of your request being granted in a timely manner or at all is nil.

We hope to see you there!

Complex regional pain syndrome (CRPS) is a chronic condition characterized by severe pain following injury to bone and soft tissue. The International Association for the Study of Pain has divided CRPS into two types based on the presence of nerve lesion following the injury. Type I, also known as Reflex sympathetic dystrophy (RSD) or Algoneurodystrophy, does not have demonstrable nerve lesions, while type II, also known as causalgia, has evidence of obvious nerve lesions. The cause of these syndromes is currently unknown.The condition currently known as CRPS was originally described by Weir Mitchell during the American Civil War, who named the condition causalgia. In the 1940s, the term reflex sympathetic dystrophy came into use to describe this condition, based on the theory that sympathetic hyperactivity was involved in the pathophysiology (Evans, 1946). Misuse of the terms, as well as doubts about the underlying pathophysiology, led to calls for better nomenclature. In 1993, a special consensus workshop held in Orlando, Florida provided the umbrella term, complex regional pain syndrome, with causalgia and RSD as its subtypes. The symptoms of CRPS usually occur near the site of an injury, either major or minor, and usually spreads beyond the original area. It may spread to involve the entire limb and, rarely, the opposite limb. The most common symptom is burning pain. The patient may also experience muscle spasms, local swelling, increased sweating, softening of bones, joint tenderness or stiffness, restricted or painful movement, and changes in the nails and skin.The pain of CRPS is continuous and may be heightened by emotional stress. Moving or touching the limb is often intolerable. Eventually the joints become stiff from disuse, and the skin, muscles, and bone atrophy. The symptoms of CRPS vary in severity and duration.

There are three variants of CRPS, previously thought of as stages.

It is now believed that patients with CRPS do not progress through these stages sequentially and/or that these stages are not time limited. Instead, patients are likely to have one of the three following types of disease progression:

 

Type one is characterized by severe, burning pain at the site of the injury. Muscle spasm, joint stiffness, restricted mobility, rapid hair and nail growth, and vasospasm (a constriction of the blood vessels) that affects color and temperature of the skin can also occur.

Type two is characterized by more intense pain. Swelling spreads, hair growth diminishes, nails become cracked, brittle, grooved, and spotty, osteoporosis becomes severe and diffuse, joints thicken, and muscles atrophy.

Type three is characterized by irreversible changes in the skin and bones, while the pain becomes unyielding and may involve the entire limb. There is marked muscle atrophy, severely limited mobility of the affected area, and flexor tendon contractions (contractions of the muscles and tendons that flex the joints). Occasionally the limb is displaced from its normal position, and marked bone softening is more dispersed.

 

No specific test is available for CRPS, which is diagnosed primarily through observation of the symptoms. However, thermography, sweat testing, x-rays, electrodiagnostics, and sympathetic blocks can be used to build up a picture of the disorder. Diagnosis is complicated by the fact that some patients improve without treatment. A delay in diagnosis and/or treatment for this syndrome can result in severe physical and psychological problems.

Early recognition and prompt treatment provide the greatest opportunity for recovery.

Physicians use a variety of drugs to treat CRPS, including antidepressants, corticosteroids, vasodilators, gabapentin, and alpha- or beta-adrenergic-blocking compounds. Elevation of the extremity and physical therapy are also used to treat CRPS. Injection of a local anesthetic, such as lidocaine, is usually the first step in treatment. Injections are repeated as needed. TENS (transcutaneous electrical nerve stimulation), a procedure in which brief pulses of electricity are applied to nerve endings under the skin, has helped some patients in relieving chronic pain. Neurostimulation (spinal cord stimulators) may also be surgically implanted to diffuse the pain by replacing it with a tingling sensation. These devices place electrodes either in the epidural space (space above the spinal cord) or directly over nerves located outside the central nervous system. Implantable drug pumps may also be used to deliver pain medication directly to the cerebrospinal fluid which allows the use of powerful opioids to be used in a much smaller dose than when taken orally. Ketamine infusion to treat CRPS has been described (Correll et al, 2004).

(Ketamine is known to block NMDA receptors and has helped many. It is not a cure!)

Surgical, chemical, or radiofrequency sympathectomy — interruption of the affected portion of the sympathetic nervous system — can be used as a last resort in patients with impending tissue loss, edema, recurrent infection, or ischemic necrosis (Stanton-Hicks et al, 1998). (This can cause more harm than good and I would advise against it)

Physical therapy is also an important part of treatment, though it should be noted that many patients are incapable of participating in physical therapy due to subsequent muscular and bone problems. People struggling with CRPS often develop guarding behaviors where they avoid using or touching the affected limb. Unfortunately, inactivity can exacerbate the disease and perpetuate the pain cycle. Physical therapy works best for some patients, especially goal-directed therapy, where the patient begins from an initial point, regardless of how minimal, and then endeavors to increase activity each week. While the unpredictability of this illness often causes a frustrating pattern of progress and regress, it is essential to continue to try to increase and normalize physical activity.

Prognosis
Good progress can be made in treating CRPS if treatment is begun early, ideally within 3 months of the first symptoms. Early treatment often results in remission. If treatment is delayed, however, the disorder can quickly spread to the entire limb and changes in bone and muscle may become irreversible. In 50 percent of CRPS cases, pain persists longer than 6 months and sometimes for years.

Similar disorders
CRPS has characteristics similar to those of other disorders, such as shoulder-hand syndrome, which sometimes occurs after a heart attack and is marked by pain and stiffness in the arm and shoulder; Sudeck syndrome, which is prevalent in older people and women and is characterized by bone changes and muscular atrophy, but is not always associated with trauma; and Steinbrocker syndrome, which includes symptoms such as gradual stiffness, discomfort, and weakness in the shoulder and hand.

The National Institute of Neurological Disorders and Stroke (NINDS), a part of the National Institutes of Health (NIH), supports and conducts research on the brain and central nervous system, including research relevant to RSDS, through grants to major medical institutions across the country. NINDS-supported scientists are working to develop effective treatments for neurological conditions and, ultimately, to find ways of preventing them.Investigators are studying new approaches to treat RSDS and intervene more aggressively after traumatic injury to lower the patient’s chances of developing the disorder. In addition, NINDS-supported scientists are studying how signals of the sympathetic nervous system cause pain in RSDS patients. Using a technique called microneurography, these investigators are able to record and measure neural activity in single nerve fibers of affected patients. By testing various hypotheses, these researchers hope to discover the unique mechanism that causes the spontaneous pain of RSDS and that discovery may lead to new ways of blocking pain.Other studies to overcome chronic pain syndromes are discussed in the pamphlet “Chronic Pain: Hope Through Research,” published by the NINDS.

Faces of Pain Video 5- http://youtu.be/y8-ngc–Bpw
RSD / CRPS Limbs Montage-http://youtu.be/nsFs3EHpi-A 

Please feel welcome to add your CRPS/RSD and Health related sharing and caring to:

Voices Carry- Where Your Voice is Heard

This Facebook page originally created to share news of all interests and to discuss those interests, politics, health, etc was recently changed. Previous posts unrelated to CRPS/RSD and/or Health have either been deleted or hidden from the page. The page is now for advertising your events, radio shows, blogs, websites, pages, updates, announcements etc.

It is an information and sharing resource! :)

I do not discriminate against the types of blogs or pages people share especially those that include depression or MDD.

We all have our own light and dark to journey through.

Please be sensitive to the matter. You do not have to read anything that bothers you in any way. It’s easy to scroll over anything. Or click that X in the corner of your screen.

Thank you again!

90 thoughts on “An RSD Advisory Introduction

  1. Hi there. Great site; thank you for the effort behind the scenes to keep it going. I have RSD as well and made a site in my own effort to raise awareness for RSD/CRPS. For someone that suffers from RSD, it is hard to remain patient with those that do not understand the depth of pain involved. I get so frustrated sometimes! Thanks for allowing the rant; please check out my site when you get the chance. I really like how you managed to capture all crucial and current information in your blog. It is extremely difficult to explain. You did a great job. Thanks for sharing your wisdom and I pray you find relief from your pain. Peace and health to everyone! Anita

    • I have had RSD in my left leg for 6 years, but thankfully the last 3 years have been somewhat managable with oral meds and sympathetic nerve blocks. However, i fell on my left knee with a great deal of force about 7 days ago and have returned to severe pain. I have been trying to research reinjury to a RSD infected limb to see what other people have experienced long term from a somewhat managed place and have found NOTHING. Do you have any information or a link I could go? I have no one to ask as my doctors are learning with me. Please email me at kfuterko@hotmail.com

  2. Hi there. Great site; thank you for the effort behind the scenes to keep it going. I have RSD as well and made a site in my own effort to raise awareness for RSD/CRPS. For someone that suffers from RSD, it is hard to remain patient with those that do not understand the depth of pain involved. I get so frustrated sometimes! Thanks for allowing the rant; please check out my site when you get the chance. I really like how you managed to capture all crucial and current information in your blog. It is extremely difficult to explain. You did a great job. Thanks for sharing your wisdom and I pray you find relief from your pain. Peace and health to everyone! Anita http://www.FindingPeaceWithRSD.com

    • i have RSD FOR LESS THAN A YEAR AND HAS 8 LUMBAR NERVE BLOCKS, A RHIZOTOMHY, INJECTIONS FOR RARE SNAIL CONE VENOM TO TRY TO EASE THE PAIN IN WHICH TO GET A MEDS PUMP, RECEIVED A NEUROSTIMULATOR PLACE IS MY THIGH, BATTERY IN UPPER BUTTOCK AND TUNNELED THE LEADS THROUGH MY BUTTOCK TO THE UPPER THIGH WHERE THE STIMULATOR CUFF WAS PLACED. ALSO FAILED. NOW I AM WAITING TO HAVE A LUMBAR SYPATHECTOMY FOR MY LEFT FOOT AND HALF MY LEG ON 9/5/12. I HAVE THE GREATEST DOCTORS WORKING CONSTANTLY TO HELP ME WITH THIS RSD PAIN WHICH CHANGED BY LIFE FROM A HAPPY MOM / SINGLE MOM BUT MY CHILDREN ARE THE GREATEST GIFT FROM
      GOD. JUST BOUGHT US A HOME AND NOW THIS CHANGED MY LIFE IN ONE DAY FROM A ROTTENED WOOD STEP. I SINCE THEN DONT KNOW HOW TO HANDLE THE PAIN AM CONSTANTLY DEPRESSED, CAN’T SLEEP AND ANXIETY. ETC. I AM 39 YEARS OLD AND HAVE NEVER EXPERIENCED PAIN LIKE THIS BEFORE AND NO ONE HAVE HEARD OF IT UNTIL I WAS DIAGNOSED WITH IT. I FEEL LIKE I AM IN MY OWN WORLD TO SUFFER ALL ALONE AND YET I TRY TO KEEP IT FROM MY CHILDREN. THE PAIN IN WHICH I AM IN BUT, THEY KNOW EVEN MY PUPPY KNOWS. I NEED YOUR ADVICE I AM NEW AT THIS CHANGE IN MY LIFE. THANKS,
      SINCERELY,
      JENNIFER G.

      • Dear Jennifer
        I’m so very sorry to learn of your diagnosis. It seems your doctors are on top of your treatment which is a good thing. The emotional aspects of this are not easy. I truly know how you feel. It’s heading on 12 years now for me. The first few years was full of despair and hopelessness. Much depression. Soon you will need to tell your children. You will need them as part of your support system. As you mentioned, “they know”. Children are sponges regardless of age and the puppy can sense your pain. I’d like to invite you to an RSD Support Group that I have online. We’re all in pain, so it’s goes from active to slower periods, but posts are always answered even if it takes a bit of time.
        https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/
        You need to have an outlet to share your emotions, your feelings, your story, a place to vent if need be where you are not judged for being in pain and hurting.
        If you are not on an anti depressant already, one may be helpful to you. I am taking Cymbalta which is a dual medication for both depression and nerve pain. 60mg is the therapeutic dose for nerve pain. I was on 120 mgs for several years do the severity of my depression and just recently weaned down to 90 then 60 last month to test out if I can cope at this dose. There are some things that may help you, they will not take your pain away, but help soothe you. Aroma therapies, bubble baths, scented candles, guided imagery, bio feedback, relaxation exercises, breathing techniques, distraction etc. If you are on facebook, please add me. facebook.com/rsdcrpsfire Don’t go through this alone, I ever I don’t reply right away, I’ll always do so as soon as able. Sending a hug your way…

        ~Twinkle

      • I hear every word your saying i am 40 yr old male husband and father of 3 boys i injured my hand and wrist at work and wan not until six months later i had my first surgery. since i have had another and been to every specialist in my area including the Mayo Clinic. I am in so much pain every day i am going crazy i can not do the things dad should be able to do anymore and it kills me… I have been on every medication imaginable as well as multiple med at a time… Have had 16 Stelite Ganglion Nerve Blocks eventually they quit working.. Nobody can understand what it is like i feel alone in this fight… i am right with you on how you feel.. this is the first time i have replied to anything like this.. Sorry to vent i just could relate to your post..
        Sincerely
        Shane

      • I know this is almost a yr late.. But I figured I’d share this anyway… I found this blog post last yr ( I was diagnosed in march 2012, I was 24 at the time when I broke my foot. In the past yr,it has spread to all four limbs. I live in Maryland, about 30min from DC; which has GW hospital,Johns Hopkins, NIH,Etc. my father is also in the medical field and works at NICoE (W/ the military on Walter reeds campus)… Fortunately, I have access to some of the best doctors in the country. I’ve tried almost all the treatments avaliable that do not require surgery (like the stimulator) ..I don’t like the idea/risk of that. The one thing left that I really want to try is HBOT! Although insurance doesn’t cover it. But I am determined! So I’ve been throwing Fundraisers and stuff to raise the $$ needed for HBOT!

        Any hoot! Back to why I was replying to this comment lol. (ADHD + memory loss from CRPS… Does that to me!)

        You mentioned that you haven’t told your kids yet (this may have changed now,since this comment is almost a yr old) but I actually use this link as a reference for ppl all ages!!

        This blog post was written by a mother who has CRPS,and the purpose is for children to read (or parents read to them) what CRPS is,and why their mother or father can’t do certain things,or act certain ways,etc…
        The coolest part?
        She wrote it as if her daughter, Heather, was writing it to other children, in a way for children to understand.

        I love it bc it’s not a bunch of doctors describing the syndrome, it’s a CRPS fighter describing the syndrome in a different way than most. In a way for children to understand, and in my experience…for most adults to understand.

        Instead of me describing it.. I should just share it lol. I hope it helps you as much as it has me,when I’m asked what CRPS is,and what it’s like to have it,etc.

        http://www.angelfire.com/me2/rsdpainpals/ExplainingRSD.html

        I hope things are atleast going a little better now,than it was a year ago.

        As for the author of this blog… AMAZING blog with awesome info. Prepare for reblogs! :-)
        From one CRPS angel, to two others ..
        Have a great weekend!
        Gentle hugs,
        Heather Lynn
        Hopeforyourcause.org

      • Jennifer, my duaghter has rsd for 5 years now and has had a numerous account of different procedures along with many trials of ketamine infusions. We met a family while getting ketamine infusions in Tampa (the family member was getting ketamine infusions also) about 3 years ago and he acquired full body RSD. They traveled from Maryland to Tampa on several occasions for k-treatments. They were just about to travel back to Tampa when they had another friend go to a another doctor in Rutherford NJ that is doing Calmare Therapy. He did the treatment and we all was amazed that he is pain free in remission. Because my daughter just had another ketamine treatment we have to wait to get the calmare therapy so she can become in remission. Some patients are over a year in remission and this is such uplifting news to know it works to get you pain free or at a level where you can function. You might want to read about it and try and get with patients that have already tried this therapy. Research Calmare on YouTube. I hope to give everyone hope to survive another day. Mary

  3. Thank you for one of the best sites ive read on the subject of rsd. I have it in my right arm and I am not convinced yet that it has’nt moved to my left arm as it is getting more and more painful not sure if overusing it to compensate for my right arm is or is not the culprit. They want to put a neurostimulator in and i must admit I’m nervous.

    • Hi, my name is Bob and I live just outside NYC. I have had RSD since 2007 when I fell at work. Last year I had a stimulator implanted. Went into surgery they attached the temporary unit then I stayed in the hospital for 9 days as a test. Then I went back into surgery for the permanent model. Now, it does give some relief but it needs to be recharged often and that’s a pain and takes hours. Also, everytime you change position you have to reset your unit. For example if your laying down and sit up to watch tv you have to change the settings. I understand that they are suppose to come out with one that self adjusts, wow….that would be great! Last thing is, if you let your unit drain of power(go dead) your unit will lose 25% of it’s charging ability. If it happens 4 times your unit will no longer work. Can never have a MRI if you get the stim. Not suppose to be near a microwave when it’s on. Etc.Etc.. If your really thinking about getting one shoot me an email and I’ll try to answer any questions you may have.
      Good luck
      Bob

      • Hello Bob.
        Reallllly wish I had made to understand what all was included in having a neurostimulator placed in my body. It had to be moved twice, wires included, because they couldn’t get good stimulation to the inside of my right elbow (where my simple sprain orginated) they insisted that placing leads in c-4,5,6 I think, would help in getting better stimulation from the neurostimulator. Wrong. I must be in the few of all those that have these things implanted as after the first year of using this thing..it has been hopeless; causes even worse flare-ups, if I even thought that was possible…was told in the beginning that this “thing” would control the rsd from moving from the original site (inside of my right elbow, remember)…nope; it went to my shoulder, my collar bone, horrible pain from my elbow to my armpit & back to my hand which is at least 50 percent of the time useless..and it’s not from “not using it or you will lose it” . I live alone. I have to do my own housework, drag my own groceries in, force myself to do gardening something I loved to do all of my life…all of the above brings on pain that leaves me in tears no matter what kind of pill I take. Neurontin (garapentin? know I’m not spelling that right) helps more or as much as pain meds do..but I have side effects from it that most doctors say they’ve never heard of before from anyone. Lately, I believe my has gotten worse as my anxiety attacks have recently became very much worse in the past few months even tho things are more peaceful now personally than they have been in the past 7 yrs. that when I was diagnosed, of course..this make no sense. None of this does. So, I want the neurostimulator out; the pain clinic staff keeps telling me that in 5 or 6 yrs. I’ll wish it was still implanted. I just can’t make anyone understand that I seem to be one of a zillion people that it feels like when I try to use it , it makes the nerves in my whole right side go nuts. Maybe I’m nuts. I know I feel utterly alone. I have 2 grown daughters who are nurses. One is very kind, understands wayyy more than her older sister who apparently thinks I don’t know; that I’m not trying hard enough; if I can live alone, and manage that I shouldn’t be permanently totally disabled? I’ve quit trying to figure anyone in particular out. I just pray, pray, pray somemore. I’m sorry to have taken up all this space..but mostly just wanted to express my take on the neurostimulator. Even typing this long with my arm resting or not resting on the desk is killing me…this is just too unreal, can’t make myself understand this even after all this time. Just in case someone out there thinks “she needs psychiatriatric care”..I am seeing a psychologist & psychiatrist..(please excuse my spelling)…so that’s that. Food for thought I suppose. Thank you for being there folks, I know I appreciate it. Just me, in Nowheresville, Ohio.

  4. When there is a disparity between the
    actual experience and a person’s
    expectations, a person experiences
    stress. If the person does not have very
    high expectations, he or she may not
    experience stress. I found informations
    at http://mshn.org/

      • Allison it’s so helpful to know that you also tried Calmare and it worked for you as it did for a friend of ours. My daughter has Rsd for the past 5 years and is in a wheel chair as we speak. We plan to get Calmare in NJ with Dr.Cooney around September 2013. We are all prayed up she goes in remission just like our friend and you have. God bless you for sharing this wonderful and inspiring news.
        Mary

  5. hi i suffer from rsd have done now for 4 years, i find myself in moderate pain for long periods, then i get a flair up of intense pain and then i can go into remission, i use tens, mirror box, and tablets i am avioding injections at the moment due to needle phobia. is it worth trying the injections (NERVE BLOCK) or stay as i am able to cope but its hard at times.

  6. nigel, hi,i understand ur sufferring.im a 43 old male that always haved worked and took care of myself an family.now i am disabled from spinal, bone joint,and nerve damaged.they say my body is wore out.my normal day is moderate to severe pain,i have had injection in my spine at the lower back,an at the neck.it has not helped me, but others say it has helped them.so what im telling u is everybody is different,an not to worry about the needle u lay face down an u never see it,an depending how fast they push it in u want hardly feel it good luck,from richard

  7. Hi-
    Thank you for such a great and informative site. I have RSD in my left arm and like one of the posters above stated think I may now have it in my right arm or it could be as she said issues from over use since I cannot use the left. I doubt it though, the pain is so severe and similiar to my RSD in my left arm. I do have a really good neurologist but my pain is no wear close to managable. Days like today are more than I can take, this is how I found your site. I am writing down some of the suggestions used on other RSD patients and will bring this to him. I am on Tramadol, thats it. I also take 800mg of Motrin often which I am sure is messing up my stomach as I am having issues there as well. Thanks again for this site, it feels good to vent and read other stories from people who can relate.

  8. Thank you to all who have commented. RSD/CRPS is a painful and often debilitating illness that can spread to opposite limbs. My prayers go out to each of you. I have had this since 2003 and am type 2, last stage. It’s non reversable for me.

    Have to take one day at a time and hope for the best.

    Please be as well as you can be,

    ~Twinkle V./rsdcrpsfire
    http://www.CRPSAdvisory.com

    • I understand Twinklew; I also am in stage two & feel like I might b losing my mind..my family tend not to tell me things that they think that may upset me; I suppose they think I can’t handle the stress..not sharing their lives with me makes me think less of myself…I wonder at times praying to God to please forgive me for my sins, if I just messed up too many times & this is the ways it’s going to be..alone. I try to stay strong but I often wonder why..mostly b-cause who’d take care of me anyways…I know; whoa is me..but it’s just gets harder & harder..never thought I’d end up this way, not in a million years…commiserating to u all..I know exactly how you feel.

  9. I too have CRPS/RSDS in my left hand. Mine came about after carpal release surgery on June of 2008. Luckily I have found a doctor down in Corpus Christi, Texas that has this debilitating disease and knows how to treat it. Check out his website http://www.paindefeat.com. He does not use drugs or spinal implants.

  10. I just wanted to speak about something weird that has happened to me- hoping it may help fellow RSD suffers. I have had rsd for 6 years- in my left leg -due to an accident in 2003.
    ALWAYS I have dealt with swelling in the afternoon and ALWAYS really bad in the evening. Recently, I suffered a small injury to the same leg- a puncture wound -got a tetanus shot and some antibiotics. Within 5 days- my foot and big toe were so swollen I could not walk without screaming and without 2 canes and my son pulling me. The swelling was so bad- I could not bend ANY toes on that foot and my instep was badly swollen. My doctor wanted results “STAT” and sent me to a local hospital’s E.R. for tests and bloodwork. They decided I had “gout” which I seriously doubted as I am NOT diabetic and never had it before. Anyway, I was given a shot of Prednisone (in the ARM) and it was much better the next day- but some pain returned in a few days. I got a second shot at my doctor’s office a few days later- and it has been 3 weeks and I have NO pain AND NO swelling in the foot,toe or the ANKLE that has been so swollen for 6 years that I wore a MEN’S size 11 shoe. I just bought a WOMAN’s size 9 ! I have not worn women’s shoes in 6 years !! I do not know how long this may last- but I am LOVING it.
    Also- I have noted in the past- due to sinus infections, I had a lot of antibiotics and ALWAYS felt better RSD wise when on them. I have been off ALL meds for 3 weeks and NO pain, No swelling………….. Ask your doctors if a shot or two of Prednisone can help if you have problems with swelling……….I have allergies so they could not prescribe Alieve, Motrin,etc. Also am wondering if a low dose antibiotic when falre ups occur- can be helpful to ALL RSD suffers……………Anyone have any info on this ??

    Gob bless you all-
    Suzanne
    email : ScrantonRsdgroup@cs.com

  11. Does anyone have a doctor recomenadtion in the Fort COllins/Greeley CO Area? I have been suffering with chronic pain for three and a half years and need some kind of releif- Thank you

  12. I have had RSD from the waist down (both legs) for 13 years and now in my spine. Please, does anyone know of a neurosurgeon that works with RSD patients in the area of the “High Desert” in Southern California (Barstow, Victorville) or San Bernardino, Riverside, Loma Lind or even in Los Angeles? I’m desperate for some help! Please let me know!
    Thanks.

    • Hi Lesley

      I don’t know of any neurosurgeons in that area. You may also want to include in your search Anesthesiologists who specialize in RSD/CRPS.

      My own pain management doctor is also an anesthesiologist as well. He prescribes my medication, does my pain/nerve blocks and also did my trial Spinal Cord Stimulator and my permanent implant.

      I haven’t been sent out to other doctors and I’ve been with him since 2004.

      Warmest wishes,
      ~Twinkle V.

  13. Hi, I have been suffering from severe to chronic pain, since Dec 08, i was injured at work, i was a personal carer, working in an aged care hostel, when a woman who has Dementia became very angry, and grabbed my left arm so severley, that i would have fallen to the floor if she hadn’t been holding me in her vice like grip. I thought the pain would go away, but it did’t, it got progressivley worse,some days for about 12 months were manageable, but a lot weren’t, i have since hurt it again , and now it is worse, i have seen numerous specialists, who treat me like i’m an idiot, as if there is nothing wrong with me. My manager and some co workers didn’t beleive me that i was in somuch pain, they thought and still do that it was an excuse to get out of work, i have not been diagnosed with CRPS, but my Dr thinks it is what i have, and i have done a lot of research on this very debilitating illnes. People don’t relise how debilitating it is, not only for the sufferer , but family as well. I have not been able to drive my car, cook a meal, have to be careful when having a shower, can hardly do anything i used to do. The pain varies, i get the burning pain, i also get the hot and cold arm, a breeze is murder, i swell, and feel like someone has tied a rope around my arm very tightly, i get a freezing cold pain in my bones, i cant wear anything like jewlery on my left wrist, i have no problem wearing clothes, but get a rash from things i have never reacted to before.Can’t cuddle my husband sometimes, because i cant stand my skin to touch anything like someone elses skin, i cant rest it on the arm of a chair. I have not worked since Jan this year. I am so sick of the so called specialists treating me as if i’m bunging this on, they don’t know enough about this illness, i am suffering depression , not only because of the pain, but because of the disbeleife i have been bombarded with, i only hope that these people do not get anything remotely as severe as this.
    I do not have all of the symptoms , but during my research, you don’t have to have them all.
    Thanks for the site. Warm regards , Maree

    • I am so sorry to hear about your awful journey with RSD. I have had it in my left leg for 7 years and have never had all the symptoms. It is an odd disease. You need to find yourself a doctor that has had experience with it. Anesthetists are pain specialists and are an unlikely but good place to look. I was diagnosed early by a podiatrist so lucky! Keep positive. And keep looking in sites like these because I find there are always people willing to share what they have learned. unfortunately I am from Canada and my resources would not be helpful but I will keep positive thoughts for you.

  14. Hi Maree

    You need a referral to an RSD/CRPS specialist. Many physicians and family doctors aren’t educated properly in the area of this illness. Some have good experiences with Neurologists familiar with and educated in the area of CRPS as well.

    All of the symptoms are not necessary for a diagnosis, but for a proper CRPS diagnosis objective factors are necessary for the doctor to make the proper diagnosis, not just subjective factors.

    There is no single test to determine whether or not the patient has this illness. Much of it takes the doctor seeing or feeling with his own eyes. This can also cause an absence of a proper diagnosis as sometimes the factors do not appear before their eyes.

    For example swelling. We can swell often and badly and suddenly the day we’re seen for our appointment, it just isn’t there. Or we experience temperature changes that may not occur for those few moments while we’re seen.

    We become frustrated. A natural and normal emotion.

    Nearly everything you have described coincides with CRPS.

    I am a team leader at an online support group. Please join if you like, there are many supportive people who do understand.

    http://www.MDJunction.com/reflex-sympathetic-dystrophy let me know if you join so that I can recall you and from where. My ID there is rsdcrpsfire.

    Wishing you pain eased days and nights,
    ~Twinkle

  15. Hi , thank you so much for the above, i have now joined your site, it’s places like these that help us feel we are not alone , so they are very valuable. I would like to be able get more information out to the public about this condition , and not only about this , but people suffering chronic pain , and not fitting into the Dr’s text books, and how being an individual isn’t always easy , everyone needs to know how this feels , when you place your faith into a Dr, and when you tell him your symptoms, and he doesn’t find the text book evidence, and looks at you like you are there just get time off work, i have been down this road a lot this year, and i have a friend who has a life threatening disease, who also suffers from chronic pain, who was treated the same way before he was diagnosed.So there should be an awareness made about such things. Once again , i thank you.
    Warm regards, Maree
    [mascot}

  16. Thanks for sharing..I like to surf and make bookmark of most liked sites..I have read about the chronic pain that Chronic pain is a hard medical condition to deal with. However,there are means to ease chronic pain, and medications that might help.

  17. Hi! I was diagnosed following a skiing accident, origin was left knee; now spread whole body including my face/brain. I was wondering…I recently had a stroke, “spontaneous sub-arachnoid hemorrhage”, has anyone heard of this being related to RSD? I am 43 and NOT a candidate for a stroke. It happened on the decent from flying…..HELP. I have been blessed, basically since 2007, I’ve been in remission; able to handle it without meds. Following my stroke, I had the need to return to my Neurontin, 2700mg. Since then, I’ve tried to ween myself off and I’m not able to do it; the pain is just too horrendous in my face and arms. I can’t take any codein products, found out I’m allergic ( all of a sudden) while being treated for stroke. Anyone experiencing anything like this that can give some insight???
    Thanks in advance
    kelesmom

  18. i bumped my right inside elbow 1/11 when i was working as a detailer. i vaccumed behind a seat in a vehicle and bam smacked my elbow and figured no biggie. that was on thursday, by friday morning i was in so much pain i could barely hold a rag. i told my coworker what was up, and he was like what the f? weekend rolled around . my arm from my right earlobe down to my fingers were so purple it looked black. monday i told my boss what happened and said i think ineed to go to the er. the claim was contusion to right elbow.next day i was back at tthe er crying and vomitting from the pain. i was told to see an orthopedic,he never looked at my arm.he prescribed hydrocode 750mg and physical therapy asap. he sucked, and because i have been on workmens comp in san angelo,tx i found i was seeing the wrong doctor,and was told to see dr.day because he is the only doctor whom takes workmens comp. i have rsd. vneedless to say it is now september 2011 and i am still in severe pain with burning,swelling,color change. i lost my job and my bosses claim i have been lying about the whole thing because they saw no bruising on my arm(or elbow). it’s been a complete nightmare. i have some mobility with severe burning,etc.all i want to do is get better,but no matter what i do it’s not happening. i do at home physical therapy,and go to the y for weight bearing excerise. ican barely hold a 2lb weight. i’m not getting better. workmans comp is claiming i am making it up. my doctor and case worker are trying there best to help me. they both have seen my arm and can’t figure what else to do. my doctor suggested i see a shrink.i don’t need a shrink,or to talk about this anymore . ineed real help. today 9/9/11 my doctor suggested i see a specialist that deals with this because there isn’t anything he can do for me. so now i am doing the waiting game to see if i’ll be approved. plus when isay i am on workmans comp all i have is medical coverage.no paycheck,no unemployment(huge story).i am sorry for my rant . i just can’t deal with the burning pain,sensitivity to everything(even the wind),plus noone will hire me for work

    • I know just what your going through. I got hurt at work also. I was going down a staircase with a co worker to have a smoke and slipped and fell and hurt my back. I have since had 5 surgeries , have rods and screws in my spine and have had a spinal cord stimulator implanted. My job fought me for a year and a half saying it didn’t happen on the job. If not for my coworker saying the truth I would have been screwed. I got RSD from my 2nd back surgery. Started in my left leg and foot, now have it in both legs and feet and think I’m starting to get it in my arms and hands. I believe that if workers comp is paying your medical then after 14 days of being out of work they have to pay lost wages. Also, after 1 year you can get Medicare and social security disability. Your situation sucks, I know, been there. Just find a dr that knows about this disease, try and get the pain under control first. Hope everything will work out for you. Whatever the doctors want to do as far as treatments, do yourself a favor and research everything, be your own doctor, if you know what I mean. Everytime I see my pain management doctor he pulls out his pad and starts writing, he always wants to increase my meds. I got the stimulator because I was told I could get off my meds if I got the stim. Bad choice, have stim and meds keep going up. Can’t your co worker that you told what happened stand up for you with your ex boss? Believe me, I’ve had this crap disease since 2007. It’s not an easy thing to live with. Most people and doctors don’t have a clue. Find a medication that works for you to at least take the edge off, and go from there. I wish you luck and hope your pain subsides. If you ever have a question about any procedure or tests, just give me a shout. Take care. Bob

  19. hello im jen im 29 years old and have had rsd for 15 years,…to all who has this chronic pain i would have to say oh my…because there is no words to explain how painful it is…i have been on every medication for this illness and nothing has worked, i have never been on pain killers..when i hit my leg i could just pass out theres been times that i have vomited due to the pain..i havent slept good in atleast 10 years..ive been through therapy etc and nothing helps..i dont no but i would rather have my leg removed then to live with this pain….

    • Hi Jennifer, I was injured at work pulling my chair out to put a chart up for a patient when suddenly I flipped up in the air. While in shock, I’m looking at the floor to see a torn plastic mat (looked like u huge puzzle with missing pieces). Of course, I was ignored by Dr’s (whom I had the up most respect for at one time since I did work in the medical field). My injury occured 11/08/08 I have had all the above done. The last thing I did was have a spinal cord stimulator placed which lasted 20 days I went back March of this year and had it redone. I have a good pain management Dr. But, the spinal cord stimulator does nothing for me. Noone understands what were going through. I feel like you do and have actually told the Dr to amputate my left leg. It swells, toes are deforming and toes lock up. It has took over my life. I was 36 when this happened and had my 1st surgery Dec2010. I waited two years and for what?

    • Hi Jennifer….. don’t cut the leg off. I’ve been talking to my surgeon about doing just that and he tells me that the RSD could just remain above where they cut. No way of knowing if you’ll get phantom pain. Don’t have the answer either. Also been on every med there is and can’t sleep for the last 6 years. Wish you well and hope someday soon they come up with a cure. Take care

  20. hi i was injured at work approxitmently 3 years ago, i ended up tearing a ligiment in my left writst, after the surgery my fingers locked up, i did the nerve blocks which did nothing for me, i did the therapy and that helped a little bit i still have two fingers that i can not unbend the pinky is the worst it is folded over and unusable. i have had to retrain my hand in order to type, with ths disability in my left hand i cant lift, push or pull anything over 15lbs and honestly it is getting worse – its to the point 5lbs is too heavy for me these days and im in constant pain.
    when my doctor told me it is called rsd and we dont know much about it my spirits dropped. i keep using my brace when im in alot of pain because then my wrist dont move. unfortunately that only helps for a little while.

  21. i had an accident at work last november and i snapped my ligament in my index finger. that was repaired but since then my finger, thumb and hand have not worked. i am in constant pain and was diagnosed with RSD in august. i have had eight nerve blocks done but it has made no difference. it has now spread up my arm to my shoulder and neck and it is constantly like a block of ice.
    this week i was finished from work because i am unable to do a lot.
    my left arm is now starting to feel painful and i hope it is not spreading .
    i

  22. Продавецы в space-shop.org не плохие!!! Работают быстро и без лишних телодвижений! Среда: ночью – договорился, утром – оплатил, днём – получил трек… Пятница: к концу рабочего дня забрал… 18:33 Только ))) Полколпачка (немного) для проверки стаффа!!! Поменяло, на второй минуте и до сих пор нормальный Способствует повышению интелектуальных и тактильных ощущений!!! Ощущается шекотание затылочной части мозга))) Вывод: За качество, не будет стыдно!!!

  23. I had RSD in my right leg due to an injury I substained with on my right knee. Long story. I ended up have a sympatheticthamy surgery for my pain. Now I’ve substained another trama to my left shoulder @ work have already have 2 surgeries on it due to a rotar cuff tear. Since the last surgery in Jan I’ve started having the same symptoms in my left arm as I did before in my right leg. Is the chances more likely I can develop this another time greater? This is Workman’s comp case from my job.

    Please let me know any thoughts.

  24. Hi – I’ve been battling RSD for over 16 years, but in January 2010, my symptoms started to recede – quickly at first, now more slowly. I and both of my PMPs have no idea why this happened, which is frustrating in that I’d love to share it with the millions who still suffer tortures of the damned.
    I created an informational website that’s very heavily visited – in fact, if you Google “rsd links” (with or without the quotes), my site will usually be in the first 3 hits. The URL is:
    http://www.thblack.com/links/RSD/

    There’s a huge amount of information there, from finding a CRPS physician to WC issues, etc. I make nothing from this site; it’s my way of giving back to the community who supported me when I was a true invalid.

    Howard

    • Thank you Howard!

      I too would like to let you all know of the valuable resource links Howards site has to offer.

      Most informative and educational I continue to support it, promote it and recommend it both online and offline.

      Woukd love to hear your comments, please consider sharing.

      Like Howard, all that I do is on a volunteer basis. I make nothing monitarily but I gain much more in the knowledge that I continue to serve from the heart as my spirit and nature requires.

      Wishiing each of you pain eased days and niighs.

      P.s. Not easy replying via cell phone. Need big letter buttons. lol My poor eyes can barely see the typepad anymote. :(

      ~Twinkle V.

  25. Imagine living in a body that causes you pain 24/7 – that’s CRPS. There’s no getting away from it at the present time but sufferers should not let hopelessness into their lives. A growing community of people and doctors are doing their best to help and come up with a cure. Don’t lose hope!

  26. Has anyone had the CALMARE treatment?
    Is it just another scam, or it a real viable treatment?
    My adult son has been suffering with CRPS for 5 yrs.
    It’s unbelievable , for me , as his parent to watch him go through electric pain/ alodynia 24 hrs. a day.
    He refuses to take meds. that can be habit forming….. so he SUFFERS >>>>>> sigh ;0(

  27. Good morning Pat

    I have not personally tried Calmare (also known as Scrambler Therapy) but I have heard really good results from so many of us RSD’rs. It’s also now being covered by some insurance companies and we’re (groups, organizations etc) working through petitions and advocacy to get it covered through even more insurances. Calmare has given so many relief and many have said in a single treatment they felt a reduction in pain levels. I am so sorry to hear how much your son is suffering. It breaks my heart to know this. Please feel free to join my online support group on Facebook if you’d like. It’s not only for RSD/CRPS patients but also family and friends of. https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

    My heart goes out to you both, please feel welcome to keep in touch.

    ~Twinkle V.

  28. I have been diagnosed with RSD. I’m not comfortable with leaving comments but have been desperately looking for people to talk to, ask questions, and even vent to who know the type of HELL I’ve been going through the over 2 and 1/2 yrs now. I’m getting confused with the websites being discussed and I don’t know where to start. Support groups are hard to find in my area for many reasons. The pain gets so overwhelming I can hardly focus, and concentrate to keep looking. So I hope I’m doing this correctly. I guess at this point Idk what I’m even trying to say. I have so many things I would like to talk about but I don’t want to sound like a person who only complains. I see different websites posted but don’t know where to start. If someone can respond to my comment I would appreciate that greatly. I’m unsure of unsecured websites, Idk if any of this even makes sense of what I’m saying but I need an outlet and to talk to people who understand how having RSD/CRPS changes your whole life. I can’t at this time wright how I got RSD/CRPS but like I said I am desperate to talk to someone and not feel so alone in this battle.

      • Hi Jo, I went to the site and I have started to read some of the topics. I like the letters that are written to the Normals, they seem to be a good start on explaining RSD/CRPS. I still have a lot to read. I will continue to look at the site I hope tomorrow. Thanks for responding to my post!

    • Helo Lydia. My name is Bob and i have had rsd since 07. I have had every procedure under the sun. Have also had 5 surgeries and I am lucky enough to have had a spinal cord stimulator implanted in my back. I’m on pain killers 24/7. Im suppose to have ketamine infusion treatments next month, so if you have questions I could probably help to answer them. You can reach me at LuxuryCar50@aol.com. Hope you feel better. Take care.
      Bob

      Jo I went to the link you gave and it would not come up.?

      • Hi Bob!! first let me try to help you out with Jo’s website, I had to have my sister get me onto it, she wrote the following for you to follow, you have to sign into Facebook then click on this: https://www.facebook.com/the.princess.in.the.tower

        I hope that helps.

        Anyway, I am going for my ketamine infusion treatments next month also, I’m going for 10 treatments. I am nervous as HELL… I will try to email you personally tomorrow since I’m not feeling well and I’m going to TRY and get some sleep or I should say rest. Thank you also for responding I am so happy, two people responding means a lot to me since I didn’t think anyone would. I know there are a lot of people who sufferer from what we have I just have lost hope to talk to anyone who understands.

        Lydia

    • Nerve blocks never work. I’ve had over a 100 of them . I’ve had nerve endings burnt off my spine with microwave impulses ( very painful procedure) didn’t really help. You would think that by now if they can’t cure it they would at the very least be able to keep it from spreading. Good luck and be well

  29. Hi Bob!! first let me try to help you out with Jo’s website, I had to have my sister get me onto it, she wrote the following for you to follow, you have to sign into Facebook then click on this: https://www.facebook.com/the.princess.in.the.tower

    I hope that helps.

    Anyway, I am going for my ketamine infusion treatments next month also, I’m going for 10 treatments. I am nervous as HELL… I will try to email you personally tomorrow since I’m not feeling well and I’m going to TRY and get some sleep or I should say rest. Thank you also for responding I am so happy, two people responding means a lot to me since I didn’t think anyone would. I know there are a lot of people who sufferer from what we have I just have lost hope to talk to anyone who understands.

    Lydia

    • Thanks for getting back to me. 10 treatments sounds like a lot. I was suppose to go for 4 straight days and 4 hrs a day. Anyway. Email me and we can talk. Feel good.

  30. Hi Jo, Lydia and Bob

    My heart goes out to each of you. I’m so very glad you found each other here.

    If we aren’t already connected, please feel free to add me to FB also, facebook.com/rsdcrpsfire

    (we may already be)

    My CRPS steals my memory, and only gives it back when it chooses to, if ever.

    Hugsss

    Good luck on the Ketamine, my friend and boss Barby Ingle at the Power of Pain Foundation swears by it. She also wrote the book Remission Possible about her experience with it, protocols taken and much more. I haven’t had the opportunity to try it yet, so please keep me updated too.

    Wishing you pain eased days and nights,
    ~Twinkle V.

    • Hey guys,
      I just finished my 10 days of Ketamine Infusions. Hmm my experience was not as I wanted it to go so far. I have been told that it can take time before it kicks in to help so I guess that’s what I’m waiting for. It was mentioned to me that once the Ketamine Infusions start I would not have to continue my Dilaudid but that was not the case. The pain level from the fist day to the tenth day did decrease but it was tricky on how the pain level was. As of now my pain level, and breakthrough pains have been the same, sad, very sad. Like I mentioned I was told that it could take some time to kick in. When I first started the Ketamine there was one other person getting the treatment as well with me in the same room. I was so excited that I could have a face to face conversation and maybe make a friend who actually knows what I am going through. Well that didn’t work. He was only there for a few days and unfortunately we didn’t get to talk much. I don’t think he wanted to talk or stay in contact but that’s ok, I was very upset at first and I guess I still am but everyone handles this disability differently and I guess his wasn’t one to talk about it. I did however give him the website for the princessinthetower.org but he didn’t seam interested. However the second week I was there another gentleman was getting his boosters for his Ketamine Infusions and we were across the room from each other and there were other pain management patients there so we really couldn’t talk to much otherwise we would have had to scream across the room. I must say at times we were pretty loud. Plus you have to factor in that the Ketamine Infusions how loopy and dopy it makes you feel and can knock you out at times since it is for 4 hours a day. Anyway I was sooooo happy and grateful for the little conversations we were able to have. He even tried to help talk me through a breakthrough pain I was having. Unfortunately he was only there for 2 days but it was nice to meet and talk as best as we can. I did give him my email address and he gave me a website that he said people were active on and so far it looks interesting. He also gave me a name for another Facebook group to join, he had said they to have active conversations but so far I am still waiting to be accepted. The one on Facebook is called Ketamine Klub (yes with a K for club) it is a private group so I am still waiting. The website he emailed me is the following http://www.rsds.org/index2.html . sorry I don’t know how to copy the link without opening it so I hope you can get into it if not let me know and I will try and figure it out. or send me your email address and I can forward the email he sent to me. The cool thing about him was that he has had so many different types of treatments and I have had some of the same. He has had success with some of them where I haven’t but I have RSD in my Right leg and he has it in his Left leg. I WISH I could speak to people face to face about our RSD problems, to put a face to someone who is suffering the same as yourself was such a good feeling. I tried to explain to my husband how good it felt to have this gentleman around while I was going through a flair up and even though this gentleman can’t take away the pain it was good to be around someone who experiences the same pains as I do. He did talk to me and some of what he was saying to me is what my husband says to me when he see’s me going through a flair up so my husband was upset when I was explaining to him how good it was to be around a person who experiences the same pain as me. My husband was upset at how happy I was to hear it from someone who also deal with this debilitating pain. I’m not sure if I’m even explaining it the correct way, putting things in to words is very hard for me to do. Sorry for this post being so long but I wish I could meet more people face to face and be able to have a few buddies to hang out with when I am able to go out or even come over and have a cup of tea or watch tv and talk. Well my email address is
      lydiahazou@msn.com if anyone wants to talk about Ketamine or anything else please contact me. I am in NJ located in Bergen County. I find on the Blog’s and site’s it’s harder to talk since I haven’t found one that is very active. Ok well this will be it for me tonight, hope to hear from someone soon.
      Lydia

      • This is my 2nd go around with RSD/CRPS. Both due to injuries substained at my jobs!!!
        The first time was my right leg. Long story short I had a sympathetic in 2005. So far so good. I went 2 yrs before I gave into the surgery. Trying everything I could before surgery.
        This time is my left arm due tearing my rotator cuff twice 2 surgeries. After the 2nd surgery I was in PT the therapist pushed 1 to many times even though I was saying he had pushed far enough. This was April, 2012 the ulnar nerve (funny bone) had been entrapped. I had to fight with w/c to have the transposition surgery. It took 8 months to get the surgery so you know where this lead too!!! With my left arm. Waiting now to get back to my pain management dr. It’s full blown!!!
        The hardest thing is my family members not understanding. My daughter is a nurse now so she has no sympathy at all!!! How do you get people to understand especially family.

      • Hello Gigi,
        Friends and most Dr.’s don’t understand and you would love family to understand but what I have realized is that only we who have it will truly understand. My family is great, they try hard to help and deal with me and my pain and the side effects from the pain but they don’t know how we are 24/7 and it hurts because they are our loved ones and who we need as a support system but unfortunate they get tired and have their own lives and stress to deal with. Like I said I love my family but they will never understand. For the most part our symptoms what we have is not visible to people in any way. Other illnesses are visible, Parkinson’s , chemo therapy ( throwing up, hair loss and I know there is a heck of a lot more they go through but this is just off the top of my head) and many other illnesses. We don’t have bones sticking out of our body, burns on our skin, missing limbs etc. I do wish my family, yours and others could understand. I wholeheartedly agree it hurts the most that family doesn’t understand. Some of my family members say they understand but they don’t, they can’t. I WISH they could, I really do. This is why I would like to be able to talk face to face with other people who suffer from RSD like we do. But it is so hard to meet people due to the pain we are suffering, an invisible illness. I have seen and felt it in my heart that family get tired of hearing me try to explain and everyday it seems that more and more things hurt and become more and more sensitive. I have hinted, showed and mentioned where my husband and family members could read articles that describe as best as they can what we have and are going through, they have read some but not As much as i would like them to. Everything I have read still can’t touch all the types of pains we feel and emotions we are going through but most of what we feel is so hard to explain, well I know it’s hard for me. My husband and sister have read things on RSD but like I said I wish they would read more. When they do read things about RSD there just never seems to be enough of all the symptoms, side effects, and emotions we have to deal with every second of every day. We are all at different stages of RSD so some of us have not experienced what others of us have and not everybody has they same problems. UGH RSD I hate having it! What is bothering me the most about your situation is that you had mentioned your daughter is a nurse, I know A LOT of Dr.’s don’t believe or have a clue of what RSD and chronic pain is. But your daughter is in the medical field and I would think she would research it as much as possible since she’s is your daughter and knows your suffering. I’m not trying to make your situation worse but it blows my mind. If anyone has anyway for RSD suffers to explain to our family how we suffer PLEASE let us know, it would be extremely helpful. Gigi if anyone is able to help please keep me informed, even if you find an article or anything pass it on please. If you need anyone to talk to by all means send me an email if you would like to talk. Even if its just to vent about our pain or family please do. My email is lydiahazou@msn.com. I know I didn’t answer your question but I tried as best as I can. With all my heart I wish I could see a future post that your daughter is trying to understand at the most.

    • Hello guys, well today was my 4th day of ketamine treatment I have one more tomorrow and then next week I have 5 more days or 4 hr treatments. The place where I get them does not to them on the weekends. Well I can’t really go into it much right now since UJ not feeling well but I will post when I’m done with them.

  31. Please contact me I have no one else to talk to about this. And a family who doesn’t care to be educated Just critical.

    • Why can’t people’s families get it? they just never understand what it’s like to be in this kind of pain , all the time. My family doesn’t even notice I’m in pain unless I moan and groan loud , then they might say something. The only people that really understand are the people that have it.

      • Bob, I just e
        Realized I posted on this blog about my ketamine, sorry for asking you in my response to your email. RSD, memory = terrible. Sorry.

        Lydia

    • I know how it feels to be alone and nobody understands or even feels they need take the time out to educate themselves on this invisible disease as I call it. Please feel free to contact me. Lydiahazou@msn.com but in the subject line please reference this blog or something where I would know its not junk mail. Depending on how I am feeling during the day or time of day from this chronic, fatigue and all the other things that come along with RSD I will make every effort to contact you. I’m uncomfortable with these blogs since I’m not into talking about problems so openly but we all have to turn somewhere.

      Lydia

  32. I’m a long time sufferer of rsd who has been literally left alone to suffer in lake charles la. No medicine no doctor no family etc. I am type 2 and have had thoracic outlet syndrome surgeries etc. I lost my disability after 17 yrs cuz I’m healed!!!!! Wow lucky me!!!! Any advice cuz it’s full body I’m sure of and I can’t and don’t want to go on. Suffering for yrs and now try alcohol to cope when possible. Beer.

  33. Dear Jackie

    Your post brought a great sadness to my heart for you. We with RSD are never healed entirely and can only be lucky to achieve a remission. It sounds like “someone” is assuming you are just all better suddenly. Please try re applying for your disability. The Social Security Admin does recognize RSD as a debilitating disease and has since I believe 2003. I’m heading into my 13 year and there was a time I self medicated with alcohol also but that was 11 years ago. Please consider joining my online RSD support group called RSD(S)-CRPS Advisory Info and Support
    https://www.facebook.com/groups/RSDCRPSAdvisory.InfoSupport/

    We are not the fastest or largest groups around but we are caring, supportive and helpful. We’re all in this together. We try to maintain a family oriented atmosphere as well. The group is listed as closed so what you discuss in it is not available to the public.

    I truly wish I could do more. You need to be around as many people as possible so that suicidal ideations don’t consume your mind. I have been there too.

    Medicinal Cannabis may be an option for you to consider for medication purposes. I am not sure about the laws in your state though. I believe it would be safer than alcohol and may give relief from your pain.

    It would also decrease your anxiety. I am almost certain that your emotions, the feelings of suicide and not being able to go on are also causing your physical body to remain in a hyper pain state.

    We need to get you down from that.

    You can also reach me at twinkle@crpsadvisory.com

    For now, do this for me-

    Criss-Cross your arms over to rest on your shoulders

    Squeeze tight

    That is a hug from me to you

    You are not alone!

    Please add me on facebook if you are there even if you choose not to join

    facebook.com/rsdcrpsfire

  34. This is a most lonely disease.
    Please continue to reach out to one another.

    Thinking of all of you…

    And wishing you each pain eased days and nights.

    ~Twinkle

  35. tPbfiLgzfCeP [url=http://www.nofuel.no/templates/beez/uggs_sko.html]uggs[/url] cNvhiUjojDlC [url=http://www.proof-improved.co.uk/components/nike-air-max/]Cheap Nike Air Max[/url] iCdrbYwitAsI [url=http://adizki.com/libraries/domit/canada_goose.html]canada goose[/url] dUwjmTcmnCxB [url=http://cr-aixenprovence.notaires.fr/stats/tn-pas-cher.html]Tn Pas Cher[/url] kKmcpByhdPyR [url=http://www.ossa.gr/plugins/content/ugg_greece.html]μπότες ugg[/url] mZszwPpkqJhO [url=http://www.parladori.it/logs/domite/canada_goose.html]Canada Goose[/url] jUgugWiptYtM [url=http://www.cissac-medoc.fr/logs/domit/doudoune-canada-goose.html]Doudoune canada goose pas cher[/url] wEjlmAyveObC [url=http://www.larocheblanche.fr/media/system/nike-air-max-1.html]air max 1[/url] vNrlhAsbrWqL [url=http://www.trophees.achatpublic.com/includes/phpmailer/canada-goose.html]canada goose pas cher[/url] fIvikJykhAfD [url=http://www.puvab.se/includes/moncler/]Moncler Rea[/url]

  36. Please contact me or email me the Doctors Listing that specialize in RSDS/CRPs,

    My wife of 33 years has “Both” forms over 6 years now. Root case, 3 Car Wrecks within 4 Months time limit.
    From a very healthy fitness model and cross country runner to totally disabled, wheel chair/mobile chair life style and no mobility.

    Complex Pain Management is not effective now into its 6th year, now with visions of only the Morphine Pump application in the near future.
    We need help on finding a Medial TEAM near Houston TX to take Kim in and come up with a solution for a better quality of life. Time is not on Her side. Her managing doctor at this time has issued a letter confirming the close of His practice.

    Bless you’ all,
    Looking forward to talking soon!

    Thank

    • I too am going into my 8th yr. with this rsd/crps thing…I split with my boyfriend, suspecting he’d never be able to handle the progression that they told me was inevitable. It’s started with a simple sprain; went to shoulder, my dominant right hand and now on to the other arm. I’m in the process of getting the stimulator that “they” re-assured me would keep it from progressing. I’m alone. I’ve tried dating but fact is there’s so many side of effects of the meds I take, intimacy is pretty much off the books…least the past 3 months where my immune system plain sucked; caught that nasty flu at Christmas & stayed sick for almost 2 months & then a nasty bladder infection that took 3 dozes of antibiotics to kick..and the past 2 days I’ve been in this loney little house w/dogs hovering while I vomited *yep a stomach bugs going around so I was bound to get it” so hard I thought the neurostimulator was going to push it’s way right out of my body. I take vitamins, I gained a bunch water weight when I had the bladder infection..it’s seems to be going down quickly now the antibiotics have done their job..so it’s back to square one to the neurosurgeon to get this useless uncomfortable contraption out of my body…I dread this as they’ve moved it 3 times with wires running all over my shoulder & down my spine & my side (where the connector is trying to push it’s way out too)… It was horrible getting it placed high up on C3; they tell me it’s not nearly as bad getting it out..guess we’re see. I see a pain pump in my future too; pills are tearing my stomach up…I won’t let them give a more than vicodone but gonna have to talk to the doctor, she’s gives me methodone for nighttime breakthrough pain, can’t take that anymore either, it tends to constipate you and it’s just awful. I think I live alone; in my mind..keeping my spirit strong & thought it better doing this on my own..make me do more. Been told many a time that “use or lose it”…lol. Oh if they could be a fly in my house…I have family but since I take enough Neurontin & Vicodine b4 I seen anyone they think I’m a lot better off than I really am. I wonder what the future holds..I just pray for strength. It’s scares so much; so many of the symstoms of RSD are so much like MS; which my aunt had for 30 yrs…but she had a angel sent from heaven to take care of her. I truly believe he was one of a kind. Well, it’s 3 am & I guess I just wanted to vent…this insidious disease is hell on earth. I feel the person who spoke about his wife? who went fr being so vital to a wheelchair. At least she has you. Our mental stability counts a lot toward dealing with this nasty disease that this type A; hard working loving life woman has caused to b almost a recluse. Thank you for allowing me to just vent some; maybe tomorrow will a better day. I’m pray so. God Bless You all out there fighting this daily battle RSD/CRPS. who would have ever guessed?

  37. With havin so much written content do you ever run into any problems of plagorism or copyright infringement?
    My website has a lot of unique content I’ve either authored myself or outsourced but it appears a lot of it
    is popping it up all over the web without my authorization. Do you know any methods
    to help prevent content from being ripped off?
    I’d certainly appreciate it.

  38. Moved to N.J in hopes of getting help with R.S.D. that has spread from my foot to hip. I cannot find a doctor who cares enough to help me and takes my Horizon insurance. I really need help with the pain and depression! Is there any doctors that will help me??
    Lisa Jacobs

Leave a Reply

Fill in your details below or click an icon to log in:

WordPress.com Logo

You are commenting using your WordPress.com account. Log Out / Change )

Twitter picture

You are commenting using your Twitter account. Log Out / Change )

Facebook photo

You are commenting using your Facebook account. Log Out / Change )

Google+ photo

You are commenting using your Google+ account. Log Out / Change )

Connecting to %s