CRPS ORANGE DAY IS HERE

CRPS ORANGE DAY IS HERE

By Ed Coghlan.

November is CRPS Awareness Month as a month-long effort to raise awareness of Complex Pain Regional Syndrome.

Monday, November 5th is #CRPSOrangeDay as people with CRPS and their loved are urged to do something special—everything from dressing orange, decorating your office in orange, or just about anything else.

It is among the cruelest of the chronic pain syndromes. It was hard not to notice a tweet over the weekend from a person identified as “Life of a Spoonie” who plaintively posted:

Has anyone got tips for alleviating #CRPS Pain?!

I can’t even eat because I’m sick and in pain right through to my stomach. How do you keep your eyes open?

Is there something that can put out these invisible flames?!

Send Help Please

The National Institutes of Health describes CRPS as Complex regional pain syndrome (CRPS) is a chronic (lasting greater than six months) pain condition that most often affects one limb (arm, leg, hand, or foot) usually after an injury.  CRPS is believed to be caused by damage to, or malfunction of, the peripheral and central nervous systems.  The central nervous system is composed of the brain and spinal cord; the peripheral nervous system involves nerve signaling from the brain and spinal cord to the rest of the body.  CRPS is characterized by prolonged or excessive pain and changes in skin color, temperature, and/or swelling in the affected area.

There is more awareness of CRPS than in past years. More doctors are being educated and patients are forming support groups, not to mention the outstanding work that the RSDSA, a Connecticut-based non-profit is doing to educate.

During the month, we will be featuring stories about what’s new, what research is being conducted and, importantly, stories from CRPS patients who are living with the syndrome.

If you CRPS and you have a story to tell, please go to our commentary section and leave your story.

In the meantime, wear some orange!

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Authored by: Ed Coghlan

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Sheila Duff

First, I am NOT surprised to only see 4 stories on here but yet very saddened. My husband developed RSD over 18 years ago. He had a vasectomy and his ilioguinal nerve was severed in the surgery. The urologist who performed this simple 15 minute procedure treated my husband like a dog. When it was time for his first sample to be brought for testing, the pain he experienced brought him to tears. As a nurse, I knew something was wrong especially when he described “burning” pain. Needless to say, we spent the next 2 years traveling the East Coast searching for education and relief. The ONLY thing that helped was at Yale University in New Haven CT. My husband had the nerve cryoablated at minus 20-40 degrees. It gave him 5 years of pain/drug free relief. But, nerves do regenerate and we were told by surgeon it , the RSD, could come back worse and the surgery was a one shot deal. Boy did it! Fast forward through EVERY INJECTION, NERVE BLOCK, PT/OT THERAPY, MEDICATION, ACCUPUNCTURE and every form of complementary med/tx you can name, he’s tried it. Now, due to the “opioid crises” he was weaned down from his pain meds that made it bearable despite an initial promise from our PCP that “we have enough documentation to continue your high level of meds.” Lies!! Thank God, unfortunately, my husband was also diagnosed with stage 4 thyroid cancer two years ago. I say thank god because if not for that, he would have been cut off!!! The RSD has ravaged his entire lumbar spine…severe stenosis bilaterally, a HOLE in his sacrum (due to poor blood flow from RSD, intractable, chronic pain in his groin and left leg which swells but yet he has muscle wasting and bone marrow edema, tumors that when biopsies come back “unspecified” yet are still multiplying and rendering him unable to walk. He is only 48 years old. We have seen EVERY TREATMENT AND TRIED AMOST EVERYTHING! Now under Paliative care to get meds that make life bearable….

JAnice

I’m done . I’ve had it. As cronic pain patients , we all know what makes sence. These tacky diversions of directing us to medical marajuania, phychiatrists, accupuncture, stuff insurance companies won’t cover. For instance are any of you aware that by obtaining medical marajuania you are forbidden to then buy a gun??? Huh ? I realize after the horrific events of mass shootings in this country that’s a touchy subject. None the less folks so many suffer from cronic pain and the right to live a life and be free of pain has been taken away from us. We need to be extremely careful about what we accept even though we as cronic pain patients are at our wits end. I pray for us all.

Terry

I have CRPS in my entire right leg and my right hand, amongst other horrible afflictions. It’s the CRPS that kicks the livin snot out of me. I’ve had 19 surgeries on my legs, 11 on the right and 8 on the left. I’ve broken my hand 6 times, dislocated my shoulder 6 times, dislocated my elbow, multiple broken fingers, I have Raynauds Syndrome and about 8 years ago a few of my toes in the middle of the toes, turned black and I almost lost them. I finally found a doctor who diagnosed it, he was a dermatologist, I take pills, no more problem, I have 4 ruptured discs in my back, I broke my neck, I broke my lower back, I have Morton’s Neuromas in my feet, which are like putting marbles on the nerves on the bottom of your feet and walking, I have osteoarthritis in 90% of my joints. So my body is broken, I have horrible pain every day. In the past I was prescribed 200 mgs of oxycontin for 10 years, it worked great and I had a full life, now it’s been tapered down (over 4 months), to 20 mgs of Percocet and 60 mgs of oxycontin. My life is not full, I hurt all over, every day, but even at 200 mgs, the CRPS in my right leg hurt so much that nothing helps it. I hope we can get the word out about CRPS, it’s the worst pain that exists by far, in my experience. Most doctors have never even heard of it, including my chronic pain doctor, if you can believe that. It’s not rare, it’s not too hard to diagnose, yet nobody has any good treatment for it. I’m going to spread the word by contacting my senators and congressman and talk only about this horrible condition called CRPS. What have I got to lose? We gotta start somewhere. I’m still looking for our chronic pain advocate, a champion for our pain meds, they’re out there somewhere. Someone with a huge public voice, speaking on our behalf. I will continue to email my representatives and senators. CRPS in my experience is the MOST painful condition I’ve ever felt. God bless my chronic pain brothers and sisters. Keep those emails going!!!

CRPSWife

My husband was diagnosed in 2013 after what was supposed to be a routine ankle surgery, which ended up being botched. After 6 weeks had gone by, and he was still in excruciating pain, we knew this was not normal. With a newborn and three-year-old at the time, my husband could not walk nor drive and was picked up every day by his co-worker to go to work. We went back to our first doctor, who basically said that my husband needed another surgery for the “pain”, but my intuition told me to seek out another opinion. After going to two different providers, they both concluded his diagnosis of CRPS/RSD. We were terrified, shocked and numb from the news as we never heard of this before and were deeply saddened to hear that there was no cure. After 6 months, my husband was able to walk again following rigorous PT, ketamine injections, various medications, and natural remedies as well for the inflammation. Unfortunately, the orthopedic doctors cannot undergo surgery to fix what the initial doctor missed in his ankle surgery due to the unknown risks of CRPS, so he has been walking with a limp since 2013, but we are grateful he can WALK. Some days are better than others, but there are moments he misses running (he used to be a marathoner and avid basketball player). Overall, we are thankful for his improvements and progress these past 5 years. I pray for anyone suffering from his invisible and misunderstood illness!

Geoffrey Nielson

Hello fellow sufferers and caregcaregivers.
I will be seen in Orange gear this month. How about you?
Of course I been curious.
Curious if the Western health care providers had even considered the transition from (work accident) spinal cord injury to the present CRPS.
Regionally moved myself to North Central Arkansas.
Researching who in this area is knowledgeable and working with CRPS patients, treating CRPS patient’s wellness issues and is open to accepting a new patient.
Yes, even curious if even I have been navigating the course of (pain) humbly or miserably.
After 8 years, 3 months and 27 days, of this paper trail, I admit that I am exhausted.
Not ready to stop, but ready to ‘start’. Instead of sowing seeds of dispersion and depression from dealing and not dealing with CRPS, I would like to harvest from my experiences a platform to navigate better.
This might be the fruit of catharsis.
The ‘RIVER’ theme and response comes to mind. And navigation skills improve. Yes, progress counts while it seems like everything and everyone is counting. The Orange gear might even be the ‘team’ color I’ve been waiting for.
Back to the ‘RIVER’.
For me, an acronym for this ‘RIVER’ is ‘Really Involve Virtually Everyone’s Recovery’. The flowing river nearly nearby every hamlet has a hundredfold examples of the processes of grief healing.
One need not stand by the river daily or touch the river daily. Just as I understand very little about the Universe, the Creator, the world or just my world, one touch of this river is healing or pain. And it’s always evolving. Hopefully, I am.
Grateful in Arkansas,
Geoffrey Nielson