Anyone with RSDS/CRPS?????

[castout]

I have had RSD for about 20 yrs, in my leg. I had a bad accident, and knocked my patella, medially and laterally, ruptured the quadriceps, patella tendon, meniscis, and fascia. I have had 30 surgeries.
A couple of years ago, I had uterine cancer, and a hysterectomy...but of course, there were serious complications, and I almost hemorrhaged to death.
I have been having serious trouble and pain in my stomach. A few days after the 2nd time the docs had to open my stomach up, I began experiencing problems...I was unable to move my bowels.
The docs did an mri with contrast, and said I had developed adhesions, and the adhesions were binding things together, making it difficult for things to move smoothly. They said I would need surgery, if things worsened in the future, and that i could eventually suffer from an impaction.
I have noticed over the past several months, that my stomach has gotten BAD......I bleed when I go to the bathroom...alot. The pain is absolutely brutal, and I feel like I am being ripped apart in my stomach. It has been so severe, that I actually must have passed out in there....I woke up crumpled between the toilet
Pain is my constant companion. I do not use any pharmaceuticals, or take anything other than cannabis for my pain. I find that when it gets really bad, I have to eat an edible, and check out.
I have been doing some reading and am beginning to think I had RSD in my stomach????
Some physicians say RSD can ravage all of the systems, and i think it is ravaging my GI system????
Is there anyone that has dealt with this, and if so, how did you cope?
I am so angry right now, that this is happening....just when I think it can't get any worse....well it does!!!!!
I am not suicidal at the moment...but I have all these very vivid fantasies about cutting off my leg.
And, I explained the anger......it feels alive.
I am angry that I know some real shitbags, and they aren't suffering...so why me?????
I am also starting to wonder if RSD, is starting to ravage my mind???? I think about the shitbags I know, and I feel like maybe hurting them....like I have a right.
Maybe God, or the Devil, or fate...or whatever...has cursed me with this disease, so that I would get angry enough and be in so much pain, that I lose my mind, and really fucking make someone more deserving of me, hurt??????
Yes, I know that sounds insane, but if RSD is slowly sapping my life from me, why would I think it would spare my mind????
I have never known physical agony like this...I never knew somebody could live through this......the humidity is driving me crazy.
I dreamed last night, that I cut off my leg with a butcher knife....does anybody understand what it is like to have horrific dreams and then wake up and when you realize the leg is still there, you just cry.
And the same shit starts all over....actually, it has never ended.
When is it ok to just give up?????

 

[castout]

Let me educate you a bit about RSD. The following information is straight from an informational brochure about RSD written in laymen's terms so anyone can understand.

· RSD/CRPS is a malfunction of part of the nervous system. Nerves misfire, sending constant pain signals to the brain. It develops in response to an event the body regards as traumatic, such as an accident or a medical procedure. This syndrome may follow 5% of all nerve injuries.
· Minor injuries, such as a sprain or a fall are frequent causes of RSD/CRPS. One characteristic of RSD/CRPS is that the pain is more severe than expected for the type of injury that occurred.
· Early and accurate diagnosis and appropriate treatment are key to successful treatment, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of five physicians before being accurately diagnosed.
· There is NO cure for RSD. There is a treatment being done in Germany which has an 80% remission rate, however this treatment has not been approved by the FDA for use in the United States.
· RSD/CRPS is two to three times more frequent in females than males.
· The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.
· RSD usually starts with an injury or surgery. Pain disproportionate to the injury is one symptom. Others are: excessive burning as if the skin is on fire, sensitivity to cold, excessive sweating, changes of temperature in the skin, changes of color in the skin from bluish to multi-colored blotches as if recent severe bruising took place, swelling, blotching, skin ulcers in later stages, rash to the point of disfigurement, extreme tenderness to touch, muscle spasms, blurring of vision, impairment of hearing.
· RSD/CRPS also causes Osteoporosis, loss of bone mass as well as decrease in circulation to the extremities which can lead to blood clots
· This is not a psychological syndrome, but people may develop psychological problems when physicians, family, friends, and co-workers do not believe their complaints of pain.
· Ice and exposure to cold can actually cause the RSD/CRPS to become worse.
· Treatments include medication, physical therapy, psychological support, sympathetic nerve blocks, and/or spinal cord stimulation.
· RSD/CRPS is the worst form of chronic pain known today. Unlike most forms of chronic pain it is a deteriorative condition, it gets worse
· RSD/CRPS pain is often describes as “burning like I had gasoline poured on me and someone put a match to it.”
· Allodynia is common with RSD/CRPS. This is where the skin becomes so sensitive that a light breeze across the skin can cause severe pain.
· Insomnia is very common with RSD/CRPS
· Depression due to constant pain and loss of life-style is common and RSD/CRPS victims have one of the highest rates of suicide.
· RSD/CRPS can spread internally and adversely affect organs and the autonomic parasympathetic nervous system which regulates blood pressure and heart rate among other things.

The McGill Pain Scale, established in 1971, is often used to rate types of pain on a scale of severity. RSD/CRPD was previously known as Causalgia and it is under that name on the McGill Pain chart with a pain rating of 42. The amputation of a digit without anesthetic is rated at 41.

When interacting with someone with RSD/CRPS
· People with RSD/CRSP look just like normal people, they don’t “look” sick.
· The pain is real and constantly present, even though it is invisible and may not be readily apparent by demeanor or activities.
· Please be very careful of the RSD/CRPS affected limb and ASK before touching.
· The affected limb, if at all possible, should not have blood pressures taken on it or have blood drawn from it
· Ice should never be used on a limb affected with RSD/CRPS
· RSD/CRPS is not contagious
· Sleep deprivation from insomnia caused by pain can adversely affect short term memory and attention span.
· Some days are good days and the person may be able to do more physically or be able to do things longer. Other days they may not be able to do the same activity they did the day before. An example of such activity could be driving to the store to pick up a few items or washing dishes.

 

[DARKSIDER]

hey castout not sure what to say to your questions but my prayers are getting sent to you along with very good vibes for the future and I pray you don't suffer to much and after reading through your post I hope a few others take time to read it and send good vibes to you heres hoping for your speedy recovery

 

[castout]

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RSD/CRPS Facts



1.) The mean age at diagnosis is 42 years. However, we are seeing more injuries among young girls, and children as young as 3 years old can get CRPS.(1)

2.) One of the symptoms of RSD/CRPS is Edema (Swelling.) Medical Professionals tend to tell Patients to use Ice. Ice is OFTEN mistaken as the best treatment, but in many cases it can actually cause further nerve damage. Moist heat has been shown as a better alternative with elevation and other means to control the edema.


Everyone is different but use caution any time ICE is suggested.

3.) There is no cure for RSD but the earlier you can get treatment the better, but never give up the hope of remission.


Some promising treatments include sympathetic nerve blocks, medication (such as calcitonin, IVIG, Ketamine, Calcium channel/Beta/Sodium/NDMA blockers, steroids, tricyclic anti-depressives, anti-convulsives, and NSAIDs), physical therapy (Aqua, Horse, and Typical Dry therapies), psychotherapy, Calmare, ultrasound and electrical stimulation. More invasive treatments include, spinal cord stimulators, dorsal column stimulators, ketamine infusions, morphine pumps, STS (Vecttor). There are more treatments available as the research progresses.


Any treatment you start should be well researched and discussed with your doctor before starting or ending a regimen of treatment.


4.) RSD pain is ranked 45 on the McGill pain index, which means it is rated as the most painful chronic pain disease that exists. It is above cancer(non-terminal), and both medicated and non-medicated pregnancy.

5.) Early and accurate diagnosis and appropriate treatment are key to recovery, yet many health care professionals and consumers are unaware of its signs and symptoms. Typically, people with CRPS report seeing an average of FIVE physicians before being accurately diagnosed.(1)

6.) It is not a rare disorder, and may affect millions of people. It is hard to pinpoint the number of people who have RSD/CRPS, though some estimates put the number of people afflicted with this syndrome at 6 million (2) and other estimates claim between 5% and 10% of the population.
That makes the RSD/CRPS population of the United States greater then that of the Combined Military, 2,221,502. (3)

7.)This is not a mental disorder. The development of psychological problems does occur in some patients. It is important to develop a good support system with your doctors, family and friends to alleviate additional stress. Find and utilize local or online support groups. YOU ARE NOT ALONE, YOUR PAIN IS REAL

8.)There are two types of RSD/CRPS


Type One (I) is what we would call classic RSD and now it is called CRPS. It involves soft tissue injuries such as burns, sprains, strains, tears, and most of the medical issues that end in “itis” ; bursitis, arthritis, and tendonitis to name a few. It can involve minor nerve damage.


Type Two (II) involves damage to a major nerve. It used to be called Causalgia. It also involves a clearly defined nerve injury that can be tested by an Electromyography (EMG).(4)




9.) 54% of returning war veterans with chronic pain, according to a 2006 survey taken by the American Pain Foundation, are diagnosed with Polytrauma or Causalgia (both military “code” for RSD). This is “Easing the way for vets and civilians, [as] more insurers are covering Ketamine infusions, says Dr. Getson. (8)

10.) A lot of studies now show it is rare in Chronic Pain Patients, who take Opioids and Pain Medicine daily, to become addicted to them, even in patients with histories of drug abuse and/or addiction. RSD/CRPS patients can develop a physical dependence on opioid drugs, but this is not the same thing as addiction, which is an aberrant psychological state. (5)

11.)We deserve to wake up each day and smile. We are more than just patients, we are mothers, fathers, daughters, sons, aunts, uncles, nieces, nephews, grandchildren, grandparents, and more greatly we are unique. We are what we allow ourselves to be and if we allow a big bully like RSD/CRPS define who we are, then that is wrong! You are worth it, and that's a FACT!

12.)Reflex Sympathetic Dystrophy remains grossly under treated in most patients. The reasons for this are: lack of knowledge among both health professionals and consumers about pain management; exaggerated fears of opioid side effects and addiction; and health professionals' fear of medical board and DEA scrutiny, even when controlled substances are used appropriately for pain relief. (5)

13.) The symptoms of CRPS vary in severity and length. Some experts believe there are three stages associated with CRPS, marked by progressive changes in the skin, muscles, joints, ligaments, and bones of the affected area, although this progression has not yet been validated by clinical research studies.
(The Stages are no longer used for Clinical Use)

Stage one is thought to last from 1 to 3 months and is characterized by severe, burning pain, along with muscle spasm, joint stiffness, rapid hair growth, and alterations in the blood vessels that cause the skin to change color and temperature.

Stage two lasts from 3 to 6 months and is characterized by intensifying pain, swelling, decreased hair growth, cracked, brittle, grooved, or spotty nails, softened bones, stiff joints, and weak muscle tone.


In stage three the syndrome progresses to the point where changes in the skin and bone are no longer reversible. Pain becomes unyielding and may involve the entire limb or affected area. There may be marked muscle loss (atrophy), severely limited mobility, and involuntary contractions of the muscles and tendons that flex the joints. Limbs may become contorted. (6)

14.)Allodynia (Ancient Greek άλλος állos "other" and οδύνη odýni "pain") is a pain due to a stimulus which does not normally provoke pain. Temperature or physical stimuli can provoke allodynia, and it often occurs after injury to a site.

Allodynia is different from hyperalgesia, an extreme reaction to a stimulus which is normally painful.Those who experience allodynia can experience severe pain sensation simply from clothing, air movement (such as a breeze or wind), or a light touch on the arm.

15.)One of the common therapies in RSD is medication. Opioids and other pain medications often have negative reputations. Chronic pain and cancer patients can develop a tolerance to and/or a physical dependence on these medications. It is important to understand that this is VERY different from and NOT addiction. When taken as prescribed and only for pain, the risk for abuse is substantially less. Any time pain medications are changed, increased or decreased, it is important to do this under medical supervision in order to avoid any symptoms of physical withdrawal. It is also important to discuss a possible side effect known as Opioid Induced Hyperalgesia (OIH) as it could cause the symptoms to appear to be worsening or spreading of RSD/CRPS. Open communication is the key to safe and effective pain management!

16.)RSD/CRPS is often called the "Suicide Disease," because it causes so much pain that the patients are in greater risk of taking their own life. That is why it is so important to get support for yourself and fellow RSD Angels. Let not one flame of an RSD Angel burn out! We are here for you! If you ever need to talk email rsdcrps@gmail.com or call the National Suicide Hotline 1-800-273-8255 .

17.)Consult with a knowledgeable Anesthesia Doctor when considering surgery, as there are studies regarding different methods to decrease the risk for spread or worsening of symptoms.

18.)Immobilization is not recommended in many cases so be sure to discuss the need,

if it arises, with your RSD/CRPS doctor


19.) Pain is a vital sign! Do not allow it to be ignored. Your pain should be assessed before and after intervention, if it is not please advocate for yourself in this area.


20.)Reflex Sympathetic Dystrophy, Complex Regional Pain Syndrome, Causalgia, Sudek's Atrophy,Sudek's Dystrophy,traumatic arthritis, minor causalgia, post traumatic osteoporosis, post traumatic pain syndrome, post traumatic edema, post traumatic angiospasm, shoulder/hand syndrome, and sympathetically maintained pain syndrome.


All names for the same disease!





No Matter how you say it....it Hurts!

 

[castout]

I often have holes that form over the incision scar.
I have had a retro peritineal sympathectomy, a spinal cord stimulator implanted in my spine, a morphine pump, phenol blocks, lumbar sympathetic blocks...you name it, I went through it. I have has staph infections, that caused the docs to have to remove infected bone from my femur.
I have had sepsis.
I am no longer on any pills...I took myself off of them, cold turkey, about 10 yrs ago....have never touched any pharmies, since then.
I really think this is about to beat me.
I mean after 20 yrs, I NEED some RESPITE and PEACE.
I am not suicidal....I just don't think I have it in me, to keep fighting this.
I am not a weak person, I am just so tired.

 

[KAT]

you are not alone my friend. I wish you a pain free day.I have severe fibro,osteo,tendinitis,carpel tunnel,permanent muscle and nerve damage,chrons disease.It is a 100percent humidity today and It will be a long day.Sending good vibes and happy trails....

 

[Mr.Fastcast]

Castout,

You are a jewel of a person,I can say that because I know.You do know that there are a lot of people that LOVE you in this world.