Cardiovascular Disease

Join the Conversation on
Cardiovascular Disease
2.2K people
0 stories
656 posts
About Cardiovascular Disease
Explore Our Newsletters
What's New in Cardiovascular Disease
All
Stories
Posts
Videos
Latest
Trending
Post

CRPS Awareness and Prevention What can we learn from each other

Part 1 of 2 America needs to take a play from the United Kingdom’s playbook when it comes to Complex Regional Pain Syndrome (CRPS). Sometimes I think that our healthcare system is too arrogant for its own good. We believe we are the best in the world, and in some things, that might be true. In regard to CRPS, there is room for much-needed improvement.

We have our specialists who have mastered the skills required to help some CRPS patients manage their symptoms, but we fail as a nation to diagnose and prevent the onset of CRPS in the first place.

We should be taking a cue from other countries on how they treat CRPS. It always seems to this writer that we are years behind other nations. We know that early intervention can prevent the spread of CRPS, or even stop its onset. The key is early detection and aggressive treatment. However, before we can even get to treatments, we have to improve awareness and recognition among our medical providers, and society generally.

I’ve personally been faced with a doctor in an emergency department refusing to believe that CRPS is real and that I am not a drug seeker. That incident has produced a permanent trauma in my brain that, to this day, brings on anxiety. The entire experience nearly caused me to sign a DNR (Do Not Resuscitate) and give up. How many people do sign a DNR? How many give up on themselves because the medical community gave up on them? With a 70% suicide consideration rate among CRPS patients, you would think that we could do better. We will not reduce those incidents until medical providers are better educated and far more aware. There is no doubt in my mind that countless lives are lost due to the sheer ignorance of Complex Regional Pain Syndrome.

In contrast with the United States, the UK has a national treatment plan and efforts to diagnose and treat CRPS at the onset, which have been in place for a decade now. Here, we haven’t even put out a white paper. These guidelines are not written for just one type of doctor, but 30 different specialties. Each discipline is addressed in thewww.rcplondon.ac.uk/guidelines-policy/complex-regional-pain-.... It is due to be updated soon. The RCP revises its policies every five years. The CRPS protocols were last revised in 2018. Here in the United States, we’ve not even begun to have protocols, or for that matter, treatment plans nationally recognized. The federal government is slow to put anything on the books for Complex Regional Pain Syndrome. How slow? It’s been over 200 years since CRPS was first diagnosed on the battlefields of the Civil War, and yet the FDA has never approved a single treatment for it. We have achieved orphan disease status, which “should” give us better access to treatments like ketamine infusions and low-dose naltrexone to name. Yet for some, there is no access to any treatments at all.

I want to lobby for change. I need you to join me. For the medical community in the United States to know that CRPS patients exist. It needs to start in medical school, with more than a twenty-minute cursory lecture. Doctors are told to practice for the majority. If it sounds like the person has heart disease, then it’s heart disease. They say, “If it sounds like a horse, then it’s a horse.” However, sometimes there are zebras. Zebras are a medical rarity, patients who have rare diseases. Medical zebras are not spoken of enough to stay relevant in the minds of our medical providers. Unlike the UK, we do not have protocols and best practices for our providers when it comes to rare diseases. I often wonder how “rare” CRPS truly is, and how much it goes undiagnosed or misdiagnosed. The average CRPS patient will tell you that it took years, and many doctors, to finally arrive at the correct diagnosis, and the right treatment combination to allow them to have some semblance of a “normal” life.

What do I mean by “normal” life? I’m talking about bathing without help, cooking a meal, or even just walking around a grocery store. Of course, my motto is to “work smarter, not harder,” so I use my limited energy for things I truly want to achieve even if it’s only something as simple as grocery shopping.

There is an active protocol in the UK that warns doctors to look out for signs or symptoms of CRPS in instances of physical injuries. For example, orthopedic doctors are specifically told to watch out for symptoms. One recommendation states, “Surgeons should be aware that the diagnosis of CRPS can be made in patients who have only had minor soft tissue injury. It may even occur without a traumatic event. A CRPS diagnostic checklist should be available in orthopedic and plastic surgery departments, including outpatient departments and plaster rooms.” (1) This reminder to providers prevents years of undiagnosed suffering. Why do

Complex regional pain syndrome in adults (2nd edition)

Guidelines for the diagnosis and management of patients with complex regional pain syndrome (CRPS).
2 reactions
Post

Insomnia is So Much More Than Being Unable to Sleep

I wish more people understood the complexities of living with insomnia and sleep anxiety. It is so much more than what people see on the surface like staying up late, sleeping in, daytime tiredness, and the struggle to be on time for things.

According to Cleveland Clinic, “Roughly, 1 in 3 adults worldwide have insomnia symptoms, and about 10% of adults meet the criteria for insomnia disorder,” and “About half the people with chronic insomnia also have at least one other mental health condition, like anxiety or depression”(Cleveland Clinic, Insomnia: What it is, causes, symptoms & treatment 2023). That is a LOT of people struggling to sleep at night. People are quick to judge and blame it on technology use before bed but for some of us, we’ve been struggling with sleep long before ever owning a cell phone. At least, that’s been the case for me.

Insomnia for me is crippling. It’s intense dread each time the sun begins to set. It’s an anxiety response each night when bedtime rolls around. It’s a constant battle in my mind of knowing I should go to sleep at a certain time but anxiety runs through my body as I watch the minutes and sometimes hours passing by as I lay in bed. It’s a struggle to wake up in the morning because you finally fell asleep in the wee hours of the morning with the help of a sedative which leaves you groggy and still exhausted.

Insomnia is daytime anxiety, emotional sensitivity, and irritability because of the fatigue that radiates through every cell in your body. It’s the desire to lay down and take a nap but knowing that if you do, it will just make it even harder to sleep that night. It’s snapping at those you love because the exhaustion is just too overwhelming to your nervous system. It’s anxiety and dread for events or appointments planned in the morning, not because it’s something you don’t want to do but because you know that having to get up early will wreak havoc on your body and mind.

You see when I have something in the morning and I lay down in bed the night before, my mind races. It calculates how much sleep I’ll get, how that will affect my body, mind, and mood when I’ll be able to take a nap if I can, and how I’ll be able to put on a mask for the thing I’m supposed to do. While I would love to wake up early, see the sunrise, and be productive every day, that’s not my reality or the reality for many suffering from insomnia.

I would love to be able to wake up early on Sunday mornings to go to church but instead, I’m having to weigh the costs between going or staying home to sleep.  It’s a constant fight internally between going to church but dozing off through the entire sermon, getting incredibly irritated, and needing to come home and nap anyway or just staying home to sleep in but missing out on seeing important people in my life and hearing bits and pieces of the sermon. It’s a constant battle each week trying to decide. Something that many people with insomnia have to deal with daily. Getting up early for me isn’t an issue of laziness. It’s an issue of anxiety and depression.

Not only is insomnia associated with anxiety but it can also be a result of depression too. For instance, while I have been in this long fight with Treatment-Resistant Depression, my nights are often filled with hopelessness, overwhelming sadness, and dread for the next day of waking up and facing it all again. This dread turns into anxiety which keeps me up in fear of having to face another day of the same fight.

Insomnia can also cause serious damage to one’s body too. For instance, according to Hopkins Medicine, Insomnia and poor sleep quality can lead to complications like “increased risk for heart disease, increased risk for stroke, increased risk for diabetes, excessive weight gain or obesity, depression, and increased of injury to self or others, such as a car accident caused by driving while drowsy” (John Hopkins Medicine, Insomnia). It is so much more than what one sees on the surface.

Insomnia affects so many people worldwide and is multifaceted. It’s complicated. It is crippling. And it’s incredibly infuriating for the one suffering. I just wish more people could understand or have empathy for people like me who struggle with it.

6 reactions 3 comments
Post
See full photo

How do you manage your energy when you go grocery shopping?

Grocery shopping can be so draining — I know it is for me 🙋! I have to be really intentional with what time of day I go and how much I buy so I don’t exhaust myself too much, too fast. Chronic illness can also add a whole other dimension to the dynamic!

When you go grocery shopping, how do you manage your energy or spoons? What are some tips and advice you would give to someone who plans on taking a trip soon?

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancer #Anxiety #PTSD #CheckInWithMe

76 reactions 27 comments
Post

21 tips for less stressful, more effective cardiology visits

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. theheartdialogues.substack.com/p/congenital-heart-disease-pa... #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
3 reactions
Post

21 tips for less stressful, more effective cardiology visits

Ask questions, take notes, bring a friend: This is all good advice for navigating doctor’s appointments. But there is so much more you can do to make these visits more effective and less stressful, particularly if you’re someone with ongoing medical issues. I put together a guide for heart patients to get the most out of their cardiology visits. theheartdialogues.substack.com/p/congenital-heart-disease-pa... #HeartDisease #CongenitalHeartDisease #CongenitalHeartDefect #Anxiety

21 tips for less stressful, more effective cardiology visits

Advocate for yourself, manage your emotions and get the information you need
3 reactions
Post

I’m new here!

Hi, my name is CamoGal45. I'm here because I definitely need extra help and someone to talk to at times. Having multiple mental illnesses and just being diagnosed in 2016 is still something my family and I are learning about. Yesterday was a very bad day. I am Bipolar 1 with mixed episodes with several other health issues including mental ones. I was suicidal yesterday kinda for a short period of time out of stupidity. I'm a much stronger person than that but over abundance over past dealth, trama, and if something that is bad news or worse that happens in the same day that one of those past events might've occured is to much for me to handle or try to process in one day. I am married but not happily. I seem to always turn to my male friends when I am in these break downs or when I need to talk period. Trust is a major major issue with me an opening up about anything is too. My 18 year old Son is the reason I live an breath everyday and will now look forward to my first Granddaughter in November/December. Look forward to meeting new people on here and any information an prior experiences that can help me. I know reading some at the very beginning of my diagnosis helped a lot. Also reading things here on the Mighty. The Mighty is definitely a great site and would give it 5 stars. Very informational and gets personal outcomes to help others, which in my opinion is a major start an first step at getting help.

#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #PTSD #OCD #Grief #HeartDisease #Arthritis #Schizophrenia #Addiction #PanicAttack #SkinCancer #Diabetes

11 reactions 3 comments
Post

I’m new here!

Hi, my name is CamoGal45. I'm here because I definitely need extra help and someone to talk to at times. Having multiple mental illnesses and just being diagnosed in 2016 is still something my family and I are learning about. Yesterday was a very bad day. I am Bipolar 1 with mixed episodes with several other health issues including mental ones. I was suicidal yesterday kinda for a short period of time out of stupidity. I'm a much stronger person than that but over abundance over past dealth, trama, and if something that is bad news or worse that happens in the same day that one of those past events might've occured is to much for me to handle or try to process in one day. I am married but not happily. I seem to always turn to my male friends when I am in these break downs or when I need to talk period. Trust is a major major issue with me an opening up about anything is too. My 18 year old Son is the reason I live an breath everyday and will now look forward to my first Granddaughter in November/December. Look forward to meeting new people on here and any information an prior experiences that can help me. I know reading some at the very beginning of my diagnosis helped a lot. Also reading things here on the Mighty. The Mighty is definitely a great site and would give it 5 stars. Very informational and gets personal outcomes to help others, which in my opinion is a major start an first step at getting help.

#MightyTogether #Anxiety #Depression #BipolarDisorder #Migraine #PTSD #OCD #Grief #HeartDisease #Arthritis #Schizophrenia #Addiction #PanicAttack #SkinCancer #Diabetes

11 reactions 3 comments
Post
See full photo

What types of physical therapy have you tried?

There are so many different types of physical therapies depending on your symptoms and/or specific needs. What is right for you may not be right for someone else, and that's OK.

What types have you tried? Share using either the emojis below or with your own experience!

💖 Orthopedic physical therapy
🌸 Neurological physical therapy
🌻 Geriatric physical therapy
☀️ Pediatric physical therapy
✨ Sports physical therapy
💎 Cardiovascular and Pulmonary Rehabilitation
❤️ Woman's health physical therapy
🐞 Other specialized type (aquatic, vestibular rehabilitation, wound care etc.)
🦋 Unconventional types (dance/movement, functional electrical stimulation (FES), yoga etc.)

⭐ Need more insight and information? Check out this article by Mighty staffer @chronicallymeh here: themighty.com/topic/other/types-physical-therapy

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Cancer #Anxiety #PTSD #CheckInWithMe

Which Type of Physical Therapy Is Best for You?

Maximize your recovery by selecting the right physical therapy for your needs.
8 reactions 11 comments
Post
See full photo

What tips do you have for attending or throwing a wedding with chronic illness?

Living with a chronic illness can be challenging to manage (as we all know very well), but that doesn’t mean it has to stop us from enjoying and celebrating ourselves and the people around us. This enjoyment can include ceremonies like weddings which, depending on the size and place, can be overstimulating or overwhelming for those who experience low energy and high levels of pain.

What tips do you have for attending or throwing a wedding with chronic illness? What has been most helpful for you in managing your symptoms, communicating with others, and planning for the ceremony?

🎂 P.S. Dont know where to start? Check out these tips from Mighty @itselisajeann here: themighty.com/topic/chronic-fatigue-syndrome/attending-weddi...

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis #Cancer #Anxiety #PTSD #CheckInWithMe

11 Tips on Making It to the Ceremony: A Wedding Party Guide for Those With Chronic Illness

"I’ve been a spoonie bridesmaid four times."
15 reactions 7 comments
Post
See full photo

What’s a tip you’d share with a student who lives with chronic illness to help them feel ready for the school year?

A new school year is about to begin (or may have already, depending on where you live!) and we want our Mighty students to be ready for success 💪⭐.

What are some tips, advice, or encouragement you would give to someone who lives with chronic illness — regardless of their age? How can they prepare themselves, while keeping their health in mind, for a new school year?

Share your advice with us in the comments below 📝, we might use it in a Mighty article!

#ChronicPain #ChronicIllness #MentalHealth #Disability #Caregiving #RareDisease #Migraine #Stroke #CardiovascularDisease #AutonomicDysfunction #PosturalOrthostaticTachycardiaSyndrome #Spoonie #Lupus #Endometriosis
#Cancers #Anxiety #PTSD #CheckInWithMe

23 reactions 10 comments