Complex Regional Pain Syndrome (CRPS)
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- Опубліковано 28 вер 2024
- An overview of complex regional pain syndrome.
This video is part of Strong Medicine's Underappreciated Diseases series. It is meant for educational purposes only, and is not intended to direct the diagnosis or management of any specific patient. I do not claim any notable expertise in this specific disease, and unfortunately, I am unable to provide individualized medical advice in response to comments posted here.
For more information on CRPS:
bjanaesthesia....
www.ninds.nih....
#CRPS #complexregionalpainsyndrome #chronicpain
![[PART 1] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](http://i.ytimg.com/vi/XBB_7MrJkQA/mqdefault.jpg)
My heart goes out to all experiencing this hellish pain
This shit sucks
Thank you for your kind words.
Thanks , I just got diagnosed and scared to death. Even had suddenly high pressure (178 ) under acute pain. I'm 39 and started with toe capsulite on both feet 8 months ago.
@@pascalfilion3518 so sorry to hear! My heart bleeds for all who experience this hell ☹️❤️
Thank you for posting this very informative video. I was diagnosed with RSD, now CRPS Type 1 back in 1995. The CRPS developed after an injury that occurred when I was on active duty in the US Navy. You described exactly what I have been dealing with for the past 26 years. I was alienated by my entire family as they didn't understand what CRPS encompassed. I have had VA doctors say its psychosomatic and refuse to recognize the diagnosis I was given by a non-VA doctor. I was very fortunate to find a physician that treats this debilitating disorder. Through videos like the one you posted, I am able to educate my family members on how life changing CRPS is to an individual. I have heard of a treatment option using Ketamine to "reset" the brain. I was told it is very expensive and experimental, but would be worth every cent if it provides any form of relief.
I have met other people who have family members with CRPS and they have gone through exactly what you described and what I have experienced. Alienation, depression, pain medicine dependence, etc. I sympathize with others with this syndrome and hope they can find a treatment regiment that works for them.
Hi there,
I’ve had CRPS in my right foot for 15 years, have a great pain specialist who is my hero…when I get to see her! But what is my magic bullet is KETAMINE! I have a 4 hr booster into my subcutaneous fat in my stomach so it releases slowly into my system to last longer. I’m supposed to have 2 a year. Covid has set me back. I also have 2 x 1 week inpatient ketamine which is done the same way. It is brilliant. It lowers my tolerance for my pain meds so they start working again (opiates, I can’t take a lot of the others)but it gives me weeks of relief. When I was diagnosed I was told to walk ON IT as much as possible. So I got a dog. She makes me walk nearly every day and I owe it to that that it hasn’t spread, and my mobility isn’t too bad for 15 years! Try the ketamine if you can. Good luck 🤞🏼
I've looked into the ketamine treatments, while my attempt to get into a program fell through when the hospital dropped the program, I've had positive response personally from iv pushes of ketamine in er treatments, and a similar treatment of a week-long infusion, but with lidocaine, that give me hope it will be able to help others even if it didn't work out for me
I got crps in 2006 from an injury when I was in law enforcement to my left ankle. It's now full body. It sucks. Thank you for spreading awareness! It took 9 years to find out what was wrong with me.
What medication if any do you take? Do have any triggers that make yours worse?
I was diagnosed in November, a year and a half after rotator cuff and bicep repair surgery and being told I was "perfectly fine" and just wanted pain meds. Your video answered a lot of my questions. Thank you!
Funny thing is. Those "pain meds" don't do anything at all for CRPS pain. Opiates don't work on nerve pain.
That Dr was a Jerk! Don't deny your own reality.
@@999fine5 have you tried pregabalin
@@999fine5 oh and I noticed meds seem to reduce the pain , but they do a better job of making me drowsy than killing the pain
Great I think I need to cancel my shoulder surgery now
I thank you for making this video. RSD/CRPS has been trying to rule my world for 17yrs!! I never had a fighting chance though, because the insurance company denied me the "Stellar Ganglion block". It's crucial to get this injection within the first 6 months of getting RSD/CRPS. I'm still fighting for my medications to be paid, although theirs a court order in place. I also find myself still fighting with ER doctors, when I'm stuck in a flare up, I have no choice but to get, what I call a "Rescue shot".. it's a shot of pain medication, that goes right into the muscle. I understand that doctors go to "school", and I understand they have a "degree" in medicine, but I know my body than anyone, and after I get the shot, not only does the pain subside, my blood pressure goes back to 119/80, but the painful rash goes away as well!! Take care and stay blessed! 💙,✌,🍕grease!
We need so much more awareness of this brutal condition ( CRPS) so thank you for video. I’ve suffered with this for over 30 years and not many medical professionals have even heard of it! It’s such an excruciating condition to live with on a daily basis we just need to be heard and believed! It’s also such a difficult condition to explain to others, family/friends because it’s basically an invisible illness apart from swelling and colour changes to the skin, but there’s so much more to it than that. Just find it frustrating that we are passed from pillar to post because of lack of education and we so need to educate the medical community to a much higher level. Maybe one day they will find a cure or at least a treatment to manage our pain better. We live in hope because that’s all we have. Respect to all of you living this internal inferno, hang on in there and never give up ….
Wow you been feeling with crps for a while! What has helped u? I been dealing with it for around 3 years and can’t find anything to help
@@Lina-xf6wd It’s a difficult one as tried most meds ( usual ones like gabapentin/pregablin/amitriptayline , duloxetine etc. I’m now on zomorph ( slow release morphine) and sevredol ( fast acting) co-codamol, diazepam for spasms, zoplicone and lidocaine infusions. Sometimes it helps to take the edge off but unfortunately it has spread to full body and internal organs. I’m actually finding the infusions take the pain down a notch but don’t touch the the allodynia or the awful burning.
Sorry to hear you’ve also got this awful condition and I hope you find something that helps you 🤞
Sue Marriott Thankyou for replying! Yes I have too have tried many different medications, procedures, surgeries. Seems like there’s nothing left to do that helps… but we have to take it one step at a time! Thankyou I hope u feel better also!
@@Lina-xf6wd I think the most important thing is to have a good PMT behind you, if not ( found out through the years) change! Until you find someone that actually listens to you. Otherwise it’s down the route of finding a good crps specialist but as I’m sure you know they are few and far between. I think we are our own best advocates in this brutal condition. I really wish you all the best and am always about if ever you want/need a chat 🤞
Sue Marriott yes ur right it’s so hard to find a good specialist that knows about crps and how to manage it. I appreciate that Thankyou! Same to you ofc
My Wife is going through this ryte now and she's in terrible pain. And me as her husband feels powerless because there's nothing I can do but be there to comfort her and educate myself.
I have experienced Complex Regional Pain Syndrome (CRPS) for the past 10 years after surviving a "stroke on an airplane" flight..(CPRS) affects the nerves....I recently tried using micro dosing and it has began to release the pain in my left hand....first time in 10 years I felt I would finally heal my nerves.
Try ketamine
@@AronNeXuscompletely unaffordable to do the infusions - if you know of any resources where the cost is lower- share
Thank you. It is so hard to find knowledgable doctors here in Florida about this disease.
I had a IV placed in my effected arm for anesthesia, it was the worse paid I've felt with crps. Ty for posting about the condition, I wish it was more widely known
Thank you for this video! I have CRPS and I have done a series of videos about the DRG Neurostimulator. Thank you for bringing attention to this disease.
You're very welcome. It's frustrating that so many doctors don't know about CRPS - it must be so much more frustrating for a patient! I hope the neurostimulator has worked out well for you.
I was lucky to be diagnosed early, around 3-4 months, I still deal with pain today but I can walk with discomfort so it’s nice to see that this doctor is noticing it
3-4 months. Haha. Yeah, I was diagnosed then. Didn’t matter how many agreed with this amazing doctor. Not good enough to get to the top. 5 more deed included the top neurosurgeon. Still not everyone it truly ready to treat me nor the only one that is authorized is booked so far out and even my PT is being denied. Lovely world. I know how important it is for early diagnosis and treatment. Want to explain that to those denying me to get anything done???
@@smoore2422 wow, that’s just cruel, my doctor sent me straight to therapy because he knew the people up there and they see it all the time
@@smoore2422 Sorry what is 'PT'?
@@monique10j PT stands for Physical Therapy and OT stands for occupational therapy. I can’t remember what I commented, but I did get a short amount of visits to each- then it was decided I wasn’t making the gains to warrant continuing it. I thought it was at least worth it to keep learning skills, even very basic, but not my choice.
@@smoore2422 Thank You!
I have just come from a 6klm walk (included walking up to the top of a sensitive ridge) I find the walking gives me endorphins, I have been walking about 10 klm's a day, or sometimes I know a walk that is 11000 steps. I visited 2 supermarkets without a mask, and they are so set up these days and so welcoming the experience was excellent. i get get to wear a special sticker so folk don't freak out.
Thank you for the information. I was just diagnosed today.
My third visit to a rheumatologist last week finally provided me with this diagnoses . I have been told to have hip surgery , and my lower spine is deteriorated , so I have been getting pain pills from a pain clinic the last few years . The Dr. said it's all referred pain , get the hip surgery and all will be well . I'm amazed that the pain clinic didn't have a clue about this , I was injured from an animal attack on both legs , and both thighs have constant pain , besides the hip pain . It's no wonder I can't push my self to have surgery with everything I've seen and experienced from the medical community for many years ..
I had my sporting accident when i was 11 years old in 2007 but i got a very late diagnosis in 2014 now currently 25, i still cannot do things that i would love to do, i've had so many surgeries and done everything doctors have thrown at me but it never worked,, I see my doctor next month about getting my wrist amputated to hopefully bring my pain down or take it away fully.
This disease is so beyond words. Anyone who does not have it will never truly understand just how excruciating it is and how it affects other things as well. The only "relief" I find that helps just a bit is edibles. You feel the pain but it almost becomes an after thought. Unfortunately, I can not take edibles all the time so I suffer full on pain all day, every day and no matter what I do. Shaving my leg literally feels like I'm shaving my skin off.
Smoking hemp vapes is my home remedy. Like you said the pain doesn’t go away it just isn’t as sharp.
I would not wish this pain upon my worst enemy! Living with it every single day has been hell on earth. I tried Ketamine, nerve blocks, they suggested a SCS but I'm still very skeptical about it...I have heard some positive things about this treatment that they offer in Italy, I'm in contact with one of their staff. I do not have much hope anymore but I'm willing to try it all to be pain free.
Having a understanding doctor and being patient really hard I know. I got diagnosed in 2001 and has now spread my insides and all 4 limbs. It has also ravished my whole body I have several new rare conditions that just keeping adding up and each one worse than the next. People don't understand, some of my family has questions why can't you get better and that's questions even consultations don't know. But like I said is I don't want anyone to live my life and alone lost friends work interaction with people I missed I have always worked with tons of people's and I would kill to be working. But you've got to carry on and lie loved im OK I'm so nobody can tell. Gentle hugs and give yourself a break and if your feeling crappy then take that as a b3d day. It took years for me to housework will still be there tomorrow or even 3/4 days. I'm 54 and I'm ok alone with my amazingly little Pomchi, he helps in every way for me and he makes laugh all the time and my bbf my mum has always been a massive support for me and my dog. ❤❤
I just got diagonosed with this less than five minutes ago, I am researching it now.
Just got officially diagnosed with CRPS today. Yay.
I got my CRPS diagnosis today,I have been in pain for years,i thought i was going crazy.
I'm so sorry to hear that. Hopefully, having a diagnosis will put you on the right path to effective treatment and symptom improvement.
They will treat you like that. I cried and cried and they told me I acted like my whole body was broken. I was on an elevator who’s breaks failed and grounded me. Glad you got your diagnosis - bittersweet- your not crazy but you may live in the worst pain forever. I’m wheelchair bound now. I hope yours is in a small place.
Music at intro is sublime, 2 best genres, classic music " Bach" at past videos, and now Rock, the true evolution of the former one
I have had this for almost 20 yrs... had to go through desensitization therapy, I no longer could stand my husband holding my hand.
This is an awesome series!
So I had 2 surgeries on my wrist. The damage done to my nerve from the surgery caused some tendinitis and carpal tunnel. Overtime the carpal tunnel healed but I still have all the pain from my finger tips up my shoulder, and neck. I was diagnosed with crps 1. Why that one when I've bad this chronic pain and other symptoms for yrs despite going through numerous treatments.
What I'm trying to ask is what do I fall under really?
16 years of it. from a botched cardiac cath that punctured my femoral art.&nerve at age 24 with congestive heart failure. I had broken 36 bones being an athlete before this...I'd trade all that pain at once to remove the horror of these years; and now? No doctor will prescribe the meds I've been on with no increase for over the past decade, I'm going through forced withdrawal right now and my baseline pain has increased from a 4 to an 8 as my baseline.
I have this condition and it’s a living Hell. I use Belbucca and Percocet. Without it I would be 600lb on a tv show having been in bed for years. Seems like the people complaining opioids are not helpful are those who’s worst pain in life never exceeds a 4 on the pain scale. Even if opiates cause some sensitization, the failure to try them in a patient with CRPS is cruel. This is why people with severe pain end themselves. There is no hope. There is no joy. There is no future. There are only 4 walls around your bed and a huge drain that your life is swirling downward, always getting closer to being sucked down into the abyss. Peace, Avie
Thank you very much. Good lecture as always.
I have CRPS and get lidocaine infusions as an alternative to ketamine infusions.
There are more alternative therapies that are quietly overcoming not just CRPS pain, but also the physical side effects that accompany this disease. The benefit to alternative therapies is that they can be non-invasive, drug-free and have no patient side effects.
Thank you for this video, I think I either blew my knee out and it is affecting my entire leg even though all the doctors say it's fine and there's nothing or I have this. It hurts at a level 9 or 10 all the time, cutting my finger off and all the local block shots and everything being around 3 or 4. I have to do chores for my horses every day so I can't sit down and rest, but it hurts laying in bed or sitting down too. I can't ice it or it hurts at an 11 basically. I get nauseous with any pain killer, and my sister had a really bad reaction to prescription pain killers after getting her tonsils out and my doctor and I don't want to mess with that so I can't get anything else. we have tried red light therapy with our horse photonic health light (which has healed so many things for me), essential oils that burn my skin (but not horribly) but do calm it down a little for the deep burning aching pressure pain throughout my leg. I have gone to an orthopedic doctor, my primary care, my chiropractor who also does physical therapy, acupuncture, and massage therapy to keep stuff in line, but nothing works more than 20 minutes, or just makes it as miserable. I have stopped riding in a saddle so I don't have so much strain on the joint which has allowed me to ride a little more but not as often as I used to, tried braces which make it harder to walk making my good leg hurt too and everything. I really think I have a less severe version of this or just high pain tolerance. Along with my leg stuff, I get extreme migraines which yes is also almost debilitating but I have learned to just power through them because there is nothing I can do to improve them. Thank you for such an informative video!
I'm sorry to hear how much you're suffering. I've had CRPS/RSD for almost two decades and definitely understand your frustration. My best advice, to anyone who thinks they may have CRPS/RSD, is keep pushing for an accurate diagnosis. This may require finding a specialist who knows about CRPS so they can help you find out what you have, whether that is CRPS/RSD or not. You deserve to have a good quality of life and finding answers is the first step to achieving this. Good luck!
Glad you have a passion. The pain is neurological.
Interesting video, but I would've liked to learn more about the causes of the symptoms if there's anything known. So where does the swelling come from for example? I just watched a German video of a woman who lost her leg due to CPRS because no treatment worked. She was diagnosed quite late, and when they found out, her bones were already dead, and the blood flow couldn't be brought back. I at first thought that CPRS is just about pain, but I didn't know that there are so many additional physical symptoms. In the video she was told to do mirror therapy when the symptoms started in her hand. Does this belong to the psychological therapy that you mentioned?
What does gabapentin accomplish? (I was crossing the street... in the interest of saving time, I wrote this earlier on another video about walking backward: "I walked backwards REAL FAST while crossing the street a couple months back to avoid a car coming at me at high speed... I think that triggered my vertigo & I fell backwards between 2 parked cars, landed on my (S-curve scoliosis) back, on the road, but also on my wrist (OUCH!), broke it in many places; ended up with a titanium plate, screws, & CRPS (Complex Regional Pain Syndrome)... frankly, I don't recommend it; now it's PT twice a week with lots of additional painful homework." Anyway, it's been a few months; I've now a very weak but also swollen, reddened and mottled right hand with which I can't make a fist or carry a full coffee cup or turn a door knob with... but the previous burning & shooting pain is lessening. I really can't do a lot of OTC analgesics as they bring on rebound migraines. Anyway, thanks for reading.
So when it comes to the sensation of pain, doesn't Botox help? After all, it is also supposed to help with migraines if Botox is injected into the forehead. So if you paralyze the CRPS painful area with Botox, then the sensation of pain will be paralyzed, won't it?
My sister had this disease and it was diagnosed by a neurologist in its early stages. It took a few months with cortisol but now she is healthy again, but she has to exercise and exercise so that the illness doesn't come back.

I have CRPS. It sucks so bad. Started when my son jumped on my ankle and my brain just sent pain signals to random parts of my body (mainly lower joints). I couldn't walk right for months. After a few months sessions of PT the pain finally subsided but every other month or so now my joints just start swelling for no reason. I don't like medication as i don't want to be dependent on them, changing my diet to the Carnivore diet has helped me out tremendously. Every now and then i still get the pain but my body doesn't have all the carbs and sugar to exacerbate the inflammation.
My mom got her crps from her cruel greedy job at rochester home infusion she worked too much to support us and when she got it her boss replaced her and we needed that money to help my grandma and now she's gone and I hated corporate jobs and rich people ever since
Can you have CRPS if you have some of the symptoms listed above such as Tremors/shaking, and some loss of sensory in the wrist but your still able to lift weights at the gym, but not too heavy? Or would this be considered just a wrist injury that potentially needs surgery? Please answer this for me, thank you, Also EMGs test show no nerve damage but i still feel some sensory loss, and i had a Brain MRI which showed nothing as well.
I'm very sorry, but I can't make or refute medical diagnoses or provide specific, individualized advice here. But I will say that muscle weakness is *not* a requirement for the diagnosis.
@@StrongMed by muscle weakness do you mean with weakness with the shaking/tremors as well?
I was just referring to your original statement that you are still able to lift weights. While some patients with CRPS develop muscle weakness, not all do. So can a person who has pain out of proportion to an inciting event + tremors + sensory dysfunction but no muscle weakness have CRPS? Yes. But unfortunately, I cannot say if that diagnosis does or doesn't apply to your specific case. As you mentioned an EMG and MRI, it certainly sounds like a physician is working with you to establish a diagnosis - I hope the work-up successfully gets to the bottom of your symptoms.
@@StrongMed they told me i dont have CRPS, this is coming from 2 hand surgeons and a neurologist, but before a couple years ago one of them told me i have a mild case, so i;am just confused right now.
Is it even worth getting a diagnosis? My medication options are extremely limited due to other conditions. Cant take nsaids, antidepressants, steroids, or anything that messes with GABA. Im considering ketamine even tho it will take my lifes savings. Im in PT and only getting worse and worse
Some stroke people? Or is that something different.
Is it possible to develop CRPS seven years post basal joint reconstruction?
I am not at all an expert on CRPS, but 7 years between surgery and symptom onset would be literally 10x longer than I've ever heard of before. I would definitely look into alternative explanations for symptoms.
Thanks for upload.
Wow, I have been suffering these pains for about 5 years, this is the only thing I've found which describes my pain. Doctors I've seen have no real idea of whats going on, I feel sometimes they don't belive what I'm telling them. I'm in max dose of amitriptalin and pregabalin, when I was on gabapentin I wasn't told not to take the pregabalin so took both and holy cow it made the pain worse and I ended up with visable bruises in the same pattern as the nerve burning pain I was having almost constantly. I just want it all to end. It started in my left thigh and now I get it in my right but not as bad, my skin texture has changed but in the beginning I couldn't even have it touched or even a sheet on it.
Is this what I have? I so wish I could find someone who knew what they were talking about, instead the specialist I saw said it was age related, like omg it stared when I was 40 I'm 45 now.
I'm so sorry to read about what you've been experiencing. Unfortunately, I am not able to provide specific, individualized medical advice or offer personalized medical opinions here on this channel. I hope you find a doctor who can get to the bottom of your symptoms and get you feeling better.
I haven’t slept but maybe 2. hours in the past 2 months. I am close to losing my mind.
I had titanium plate put in my left radius, and have been diagnosed with this. I can't bend or rotate my lower arm at all. Does it get better?
Was just diagnosed with this 6 weeks into recovery from a complicated leg surgery. The more research I do, the more depressed I get. Please tell me this isn’t real.
I'm sorry to hear about your diagnosis. While I can't speak about your specific situation, unfortunately the condition is very real. Fortunately, the sooner it's diagnosed, the better the long-term outcomes are.
New netflix doc about this 'Taking Care of Maya'. Highly recommended.
For anyone wondering, Maya was diagnosed with CRPS.
Pain meds won’t help at all. Nothing does. It just hurts. I ended up just doing lots of stretching and Yoga, for some magic reason, I am now recovered for most part. Only left with two small areas on my both hand to deal with instead of my both arms and hands.
Hi,
First of all great video, thank.
Secondly, Is it possible to being diagnosed with CRPS without having any physical changes of the skin nor swelling etc.? If I understand the video correctly it's not possible, but just want to be sure.
Thanks again.
The current diagnostic criteria requires some type of physical changes to the skin or muscles (including muscle weakness) in the relevant part of the body. So without those, a person could not be formally diagnosed with CRPS. However, there are many patients who likely do have CRPS who do not meet the criteria (no disease has perfect diagnostic criteria). Some pain management physicians will give some of these patient a CRPS diagnosis nonetheless, if there history and description of the pain is classic. Also, some patients not meeting criteria at a particular point in time will later develop additional symptoms and signs that would allow for a formal diagnosis to be made.
@@StrongMed will it cause hair loss?
If the wind hurts?
Wind is a big trigger for me with crps i can't even have a fan near me cuz it feels like the air is scraping me...I also can't be near a window with sun coming thru cuz I feel extreme pressure
Yes. Air moving is horrific to my limbs
Can any one explain pathophysiology?
What’s the point of using Ketamine. As soon as you get home pain is back
I agree it seems counter-intuitive, but research has shown that improvement in pain can last for months in some patients: www.ncbi.nlm.nih.gov/pmc/articles/PMC8601938/
Thanks! Great stuff! Would have been good to talk about warm and cold forms :-)
Thanks for the suggestion. There's obviously a trade off here, but before making any of them I had already decided to keep videos in this series to under an arbitrary 12 min in order to maximize how many people were able to watch them. I think I'm going to find many of them clocking in at ~11:55...
@@StrongMed thanks for your effort! Much appreciated!
Are there any specific foods that folk find to be a trigger?
I find dinner makes things worse.
It is sad but if one famous person would have it...the whole world would be aware. Maybe then more money would be raised to find a cure. Nineteen years and counting and like other sufferers I am sure we've named this "monster" "Satan" and other words that we think of when suffering from this ...
I feel like hEDS should be on this list...
What tools do folks use from their toolbox to manage strong emotions (as an example when there has been an injustice)?
funny, I don't know about others but I've read this is true in many cases - the more I hear the word pain, the more I seem to hurt (focus I guess but I've said for years, the world "pain" is "Painful." I guess spoken like a true CRPS person.) Lifelong CRPS 44 years post laminectory and now with post-covid serious worsening and spread. Not a lot said about this tho many of us have had this happen. I've gone from walking and crutches to bedridden. I wish medicare would recognize any of the less invasive treatments - ketamine. Who with crps and disabled for life can fork out $400+ several times a week to start or per month? Spero Clinic who claims to have the best outcome with crps, doesn't accept insurance. Money buys treatment. sad. When I was diagnosed in 1978 there was no treatment and I'm now realizing, diagnosed as "causalgia" the day after surgery was amazing and unusual. But the symptoms in my left foot were immediate postop and quite severe. And I had a very well trained neurosurgeon who knew what it was immediate even in 1978. I was 23. Now I'm 67. My entire life I've been in pain. Few know tho. I get tired of being "disabled" so when I'm really hurting, I just stay home. The good part of having an invisible disability I guess tho as I age and it spreads to my entire body, I'm realizing I've not done myself any favors by pretending it doesn't exist. Thanks for the validation.
I've having trouble even validating myself that I could possibly hurt this much one month post covid - I was already a long hauler and this happened not this severe in July of 2020. Covid took me out of an already difficult life and there is nothing that can be done. It's depressing and sometimes we can wonder why we AREN'T suicidal you know. You failed to mention it's known as the suicide disease and not many have it as long as Sue below and I have as they kill themselves first. And those who have lived with it this long, have probably tried a few times. Thanks for this video. How do you decide it's ok to say it's time for a wheelchair? I'm embarrassed by CRPS. It can't hurt that bad. My skin all looks fine after 44 years. You can't tell by looking. People say "I know what you mean, I sprained my ankle last week." And I just shake my head and say "I'm sorry you are in pain." Because we are told you can't compare pain but when I talk to someone else with CRPS, it's such a relief. It is it's own kind of unrelenting different experience of pain? I've had lots of surgery and lots of pain, but nothing compares to CRPS. and NO, we can't compare pain but these connections help me validate that yes, this is real and it's ok to hurt.
I find "The Keep Going on Song" by the Bengsons very uplifting. Should be the theme song of crps tho it kind of became the theme song of Covid.
ua-cam.com/video/Cs-ju_L9pEQ/v-deo.html
Thank you for the effort to bring up this "Underappreciated disease".
It sure wears our family out.
My mother has this, and when I learned that it is called suicide disease, I asked my mother to swear that she would not take her own life, she swore, and said to me that she would not do it. She would not want to hurt her family like that. Still praying for anything to give her easier life.
I understand how your mother feels . It really does lead one to that feeling. It is a living hell and we would never allow a pet to live this way. It is inhumane. Praying for all of us. 🙏🏼
My mom has it aswell, was diagnosed with it a few years back. She has been disabled and in a wheelchair since I was in the 4th grade. She was in remission with CRPS for over 20 years (after healing from a fractured wrist), but it came back full swing and alot worse when I was a freshman in high-school. I am now a senior in high-school. watching her in constant pain is awful.
But what if that is her only option? I don’t want anyone to commit suicide but I cannot promise to anyone even my kids that I won’t do it.One can only suffer like this so long…it is the absolute worst.I’ll stick around as long as I can BUT….my quality of life is non existent
@@MamaStyles what is your pain like? Can you please explain me how you experience a day? Thanks
@@grv91vr23 I have CRPS 2 which is end stage. I feel crushing pain, and then burning pain but my type doesn’t have as much skin changes and heat like it did in early days.I feel like I’m being beaten with a hammer …then comes waves of a deep bone ache and then come sharp pains with the burning sensation. Just started neuropathy a few months ago on top of it all…so yeah it’s rough esp since nothing takes the pain away
Great summary, Doc! I’ve had CRPS for 25yrs following partial herniation of 3 intervertebral disks in my neck. Your point about the need for therapy for patient AND family is spot on. My 20yr marriage ended after my spouse decided it was too hard to have a chronically ill spouse. He was never able to accept that some disorders just never heal.
Sending love to any other CRPS patients on here. Stay strong. ❤️
Yeah this shit sucks had it for 18 months now
@@jakeappleby8047 I've had it for 10 months now
@@asherm1415 hang in there. If no meds have helped all I can say is try subs
@@jakeappleby8047 well I'm on Pregabalin..... it's a painkiller that targets the nerves.....I suffer from Brachial nerve plexus so it's pretty helpful
@@jakeappleby8047 but it's also under CRPS apparently because they found the cause (nerve damage) but not the area...and it's trseated the same way as CRPS
i was diagnosed with crps at 9 years old, my school counselor and i are planning on making it hopefully required for my school to do a presentation on it for every year of new sixth graders. i got tired of people asking, calling me a “f_cking cripple”, and being bullied because of my crutches or cane. The depression got to me, to the point of wanting to k!ll myself, and i’m hoping that raising awareness for it even just in my school will help not only me but also other people.
That’s so early in life to be diagnosed - that’s great you and the school counselor and planning to do annual awareness presentations. Kids can be jerks, sorry to say- but you are a WARRIOR! You have survived 100% of your bad days so far. And while it’s hard to find any silver lining of having CRPS at times- you will be a more empathetic person and not a bully. Go do great things and stand up tall.
Bless you.🙏🙏
My husband has crps...
it sucks how little there is out there talking about it considering how much us with it suffers. thank you and the amount of things CRPS can affect is like a joke your organs your endocrine system and sweating which I believe is part of that. thank you for the video many of us go years figuring out how to just manage and crps is resistant as heck ketamine has been a life saver I couldn't walk after surgery (just taking the metal out after traumatic break) and I got walking again. opioids help some of us that wouldn't function otherwise Cannabis does also but the disease seems to overcome alot of trials of medicines even biologic drugs becoming ineffective. activity is the best thing when you can because you can slide back easy
You seem like an amazing doctor! I wish more doctors were understanding of pain, especially in women and POC.
This is so extremely helpful and understanding my current symptoms and my life living with CRPS since late 2016. I need everyone I know to watch this video to help them better understand my condition. Thank you Doctor
"Kia Kaha" (stay strong)!
Agreed since 2013
Try ketamine
I have CRPS...diagnosed 3 years after I ws run over and dragged by a van.Its now 10 years after my accident and originally I had CRPS in my left knee but it has spread to both legs and my spine.You dont mention the McGill pain scale nor the excruciating pain this "suicide disease " causes...it s horrific.I wish everyone could feel my pain for 5 mnutes and youd be curled up in a ball screaming...
I'm so sorry to hear about your experience. For those not familiar, here is the Mcgill pain questionnaire (MPQ): www.sralab.org/sites/default/files/2017-07/McGill%20Pain%20Questionnaire%20%281%29.pdf . It's best used in the outpatient setting for following patients with severe chronic time over time (i.e. to see if a new treatment working), rather than by ED/inpatient doctors treating an acute pain exacerbation. There's also a shorter version, known as the SF-MPQ: www.physio-pedia.com/Short-form_McGill_Pain_Questionnaire
Amen
Sending my love to you
I suffer from this nightmare too. I wouldn't wish this disease on anyone, for any length of time.
Exactly. I feel the same way. I want someone to live in my body for 1 day. I’d pay anything for my love ones to really understand what it feels like, yet I can’t just constantly say how bad I hurt, so that must mean I don’t hurt all the time. There is no win. I was dropped down an elevator when the breaks failed. Hugs girl. It has a very appropriate nickname. You better find a purpose or something to live for because it’s too hard to deal with it if you don’t have that. 😰😰🥺🥺🥺🥺🥺
I was first diagnosed with this when I was about 14 years old. Today I go myofascial deep tissue needling. So far it has helped ease my suffering.
I suffer from this in my right foot and ankle. It is unrelenting. It is absolutely the most awful pain I have ever thing felt in my entire life. We need more awareness. I was diagnosed in 2019.
my surgeon prescribed vitamin C Prophylacticlly for CRPS.
Thanks for mentioning this! This is not universal practice and not all surgeons are convinced this is effective, but there is a moderate amount of evidence supporting perioperative vitamin C for preventing CRPS secondary to orthopedic procedures, and it's certainly a thing that many surgeons do. I am not familiar enough with the specific literature to have a personal opinion on it. As of now (2021), the greatest volume of evidence on vitamin C is in preventing CRPS following distal radius fractures.
@@StrongMed Interesting. I'm seeing an Orthopedic Dr that only does regenerative medicines. He thinks I have CRPS because after 6 years of constant nerve pain in foot I've tried everything. He wants to do a nerve block into lower back which will effect my left leg. Since he is into regenerative medicines I wonder if he would know about this Vitamin C?
I met an accident 2 years ago, but I didn’t got that check up for almost 2 months and then doctor suspected tfcc tore and my hand was in plaster for 3 months but since then I still have pain… Stinging pain… I did MRI and x ray both were normal but yet swelling is persistent with redness … I don’t know if this is crps or not but I tried poking both of my wrist with toothpicks and I wasn’t able to bare the pain in effected hand…
Thank you so much for this explanation. My husband’s foot was ran over by a fork truck at work over a year ago and the doctor said they suspected CRPS. I had never heard of this before. We struggled trying to get workers comp to agree with the diagnosis because the physician he sees did not explain this very well.
You're very welcome. Given how few people know about CRPS, and the fact it generally doesn't have much objective evidence (i.e. typical tests are usually normal), I can imagine getting workers' comp was a challenge! I hope that aspect of his situation worked out in the end, and that he's getting effective treatment.
With me, workers comp gave whole body impairment ratings for the injuries sustained at that time. They settled my CRPS as a ‘disputed’ sum - so they are not responsible for lifetime medical care
@@smoore2422I'm in the same boat. I was just diagnosed the other day, because no matter what they've done, I'm not getting any better. It happened in April 2024 and now it's July 2024. And I have it in my entire body. I also have Fibromyalgia, CFS, and a lot more.
@@samanthawhelan2678 That’s so hard. The first two years were the hardest for me to cope with. Mine has also spread, which was another really hard additional thing to try to wrap my brain around and keep trying to tread through it all. I finally have a medical team that has definitely helped me feel like they are all trying to find what modalities can try to manage my pain and all that comes with it. While I’ve tried a variety of treatments- I know each may just turn down the volume enough to add all the percentages together to make some days were I’m stronger than the pain- even if it’s just parts of the day. You are in my thoughts and I’m hoping you find resources to help cope with the emotional, physical, and mental toll this beast takes on you. Wishing you some low pain days ahead.
I have had CRPS in my right foot for 2 years now. My main symptoms are inflammation and swelling plus tingling , burning and
stiffness in my ankle, foot and toes. A combination of Gabapentin and low dose Naltrexone has kept the swelling and inflammation somewhat under control. I have been slowly improving to the point where my symptoms and pain are 50 % to 60 %
better than they were 2 years ago. I had a early diagnosis in my third month, but finding any additional treatment beyond
beyond the two drugs I am taking has been very frustrating. I realize I am fortunate that my symptoms are no where near as severe as many of yours, it still affects every minute of my life.
I have just been diagnosed - 6 weeks after first experiencing the numbness, tingling and abnormal swelling. I am on a 6 day prednisone regime, and then will start some physical therapy. I have had no luck with Gabapentin for pain (in the past for another problem, and all it did was make my so depressed). I think the worst part is the anxiety of worrying that this will never go away, and the lack of sleep - no more than 1 to 2 hours at a stretch without the pain waking me.
Hello,
I have been diagnosed with CRPS a few months ago. It started in my right foot. I have tingling, numbness and swelling. I can feel rush in my foot, like blood pooling in my foot when I try to stand. Do you experience this blood pooling aswell? Please let me know. Thank you.
I have CRPS in my left foot diagnosed 6 years ago, after many sprains and fractures from rolling my ankle due to drop foot! I had a spinal cord injury in 2014 so I only have 40% Nerve function in left leg. So I only feel 40% of the pain ! I had a triple ankle fusion two years ago to stabilize my ankle and hopefully stop the flares! I just had surgery today to remove two screws that they think were rubbing against some nerves or tendons and I’m terrified that since it’s been flared up for last three months that this surgery could worsen everything! The surgeon made only a small incision and opted to leave the plate on fibula with just the top two screw’s attached because he said he didn’t want to open it all the way and risk more of a flare!
How have this from a car accident
We need to find a cure to this horrible condition. There has to be a solution.
Keep your eyes out on the clinical trails gov website. They have several going on.
Just fyi. We whom have this are often treated as drug seekers/addicts cause we ask for help with the pain. I've had doctors recently tell me that they care more about their license than my suffering. Opioid crackdown by the government punishes every chronic pain sufferer as well as doctors.
thank you so much,sir for this one.
Great video! I have a question, on boards they love testing CRPS vs. compartment syndrome? Any tips on how to differentiate them? I find it so hard especially in the upper extremity
Is there a link to this ?
Has anyone had a lumbar sympathetic block under fluoroscopic guidance?
@@monique10j yes what do you want to know
@@dagda16 Cheers, don't recall now what I wanted to know.
I was preparing the topic 'COMPLICATIONS OF COLLES FRACTURE' for my college exam today and I opened my UA-cam to this. ❤️❤️❤️❤️
How would neurodivergence like ADHD complicate living with CRPS?
I’m confused bc mine is super visible. I was empaled by a glass metal shower door, to my left foot. No fracture (somehow); 6 infected stitches. Happened 1/27/23. It was still swollen & red annnnd pus in MARCH. It is now 6/10/23 & a 23 pound dog ran over my barefoot when he had the zoomies last night. BRUH!!!! Oooooomg. Yeah my foot felt like it was broken, then it went numb & burns BUT THEN! It started cramping & the cramp moved up my outer lower leg. HOLEEEE SHIT! I was hoping it would be gone when I woke up this morning. Took baclofen & gabapentin & a pain med. Yeah, it’s not. I also have MS & a syrinx. Apparently CRPS1 is relatively common with these conditions bc they damage to the CNS or something. It’s been one hit after another this year. Still can’t find legit medical help. Even my freaking MS specialist/neurologist at the hospital, who is supposed to be the lord of all doctors: “go to pain management. We don’t do that here.” Me: “you’re a fucken hospital my guy!!!!!” I can’t take the American healthcare system anymore! Thank you for your time. Goodbye
Great video. I wish the programs did actually have the educational part for partners snd families. This is why these videos are so needed to try to help articulate and validate something that most have never heard of. I will be sharing this. Thank you for making this to spread education and awareness.
I have complex pain syndrome since 15 years and it is worse now I am on lots of medication like
Gabapentin 800mg 4 times a day
Tramadol 200mg 4 times a day
NOVO GESIC 650mg 4 times a day
Amitriptyline 200mg one time a day
Vimovo 500mg 2 times a day
Nerve blocks once a month
Ketamine infusion every two weeks
Is there is a way to stop this madness
Prayers to you! Was it by injury u got this
@@kml5690 many injuries along with wrong decision along with insurance wrong decision. I have this since 15 years
Just got diagnosed. Over a year of being dismissed and I'm in the worst stages of it. My docs are trying early treatments and have left me in the worst pain I've ever felt, doing nothing more than bouncing me around and telling me to hold on if possible... it's absolute Hell. I need a doctor who understands this little known disease.
I'm sorry to hear about what you are going through. This is not available in many places, but your best bet for treatment is a chronic pain management clinic (usually staffed by anesthesiologists) at an academic center. For example, here is Stanford's: med.stanford.edu/pain/patients.html
@@StrongMed Thank you. I will definitely look into it. Real treatment would be amazing.
I don’t know what’s happening to my body but it seems a lot like this. The doctors all say that nothings wrong, wear a brace, during a nerve conduction study “it didn’t hurt THAT bad did it?!” Different answers to the same question by 5 doctors so far. I feel helpless. Last Sept I was running 8 miles a day. Now I can’t sleep without pain. Thank you for showing me I’m not crazy.
I’m with you ! I had a hand crush injury last year and for months I was told that I’m “putting it on” until a got my tests and they found out 8 months later !
@@benkain6659 I am so sorry that happened to you! Would you mind telling me what tests they ran? Mine is in my arm and shoulder. Thanks in advance and wishing you the very best day.
@@theuniquebean whole body bone scan (spect/ct) is what diagnosed me with crps but I had many other scans like mri’s and x-rays...
@@theuniquebean mine is also from my hand all the way up to my shoulder
@@benkain6659 thank you for responding! The doctors don’t want to do anymore tests. Just physical therapy and acupuncture. Maybe I will just try to pay for one. I will look into it. Thank you so much.
Its the worst imaginable pain. I can't even explain how bad crps is. Please help me
July 2020 I got a radiofrequency ablation to try to help the pain receptors from multiple slip discs at the bottom of my spine. The pain has been growing more over the last couple years. it's in all of my limbs, fingers and toes. Unfortunately medication didn't work. It just makes me sad that this happened while I'm in my twenties. I had such bigger plans in life than to be sick.
We need more awareness #crps
I need to share this video with people I know. When I try to explain my condition, they don't believe that its real. I had this for three years now. I was 14 when it started. Thank you for spreading awareness about this disorder. It means the world.
so young. so sorry.
Mine started 13 years a 9 months ruined my life. From doing great at school to being unable to move without screaming inside
@@EnglishScripter just so you know, you are not alone and there are people like us who understand each other. You are doing great just for being here 🩵
I also have this in my foot. I badly broke my big toe 5 years ago and the pain and burning that my foot feels sometimes is breath taking. I have fibromyalgia, with allodynia
Where is your allodynia?
@@monique10j
Morningish Monique😀. Mainly around my arms and feet.But as with all things fibromyalgia, it changes regularly.Good luck,nice to hear from you 👍
@@rachelmacaskill5806 Mine is sometimes my scalp, and now I feel like my back is sunburnt. The legs are a constant where they feel like they are burning or blood is boiling. I think I am getting some around my lower face too. Having been maliciously detained/arrested/ charged has triggered a lot of new symptoms. The charges can't stick so I'm not worried about that. I will re-present my person, and I don't want the police to drop the charges as I want to seek Judicial Review of the Trespass notice at the same time.
can someone help point me in the right direction. for the past 10 years it almost feels like im in alot of pain but i cant tell where it is. this was brought on by me abusing bad chemical drugs (i've been clean for 10 years) its NOT anxiety or depression. in fact im quite happy and calm. i cant find anyone else that has this or really describe it so i can research it.
B1 thiamine deficiency is common here! Of course a couple others play a part in the autonomic nervous system too, like magnesium and zinc or vitD. Some of these WON'T often show abnormal levels, since serum only contains 1% of total body stores, so we often times dismiss and say "YOUR LABS ALL CAME BACK NORMAL".
THAT IS, IF WE EVEN TESTED ALL THESE
With the disease from H*ll many suffer from severe digestive disruption! Many doctors don't have a clue how ro support or treat! Many will not even taken the route of contacting an organization to get an understanding this horrible disorder! Also many must be careful with treatments example injections, surgery which could possible spread this. Your life is on hold so difficult to live a life the pain from warm/hot water can trigger a response. Many doctors will think its in your head when you express water temperature can trigger a response! Even with a Triphasic bone scan doctors will say " I don't think you have RSD". Your battles with your body, employment, mentally, physically, financial, to be as normalish as possible happens to be so very hard daily! RSD can change moment by moment. Many will not even try to understand they think they Know my Response is No you don't and explain there is No other diagnosis that surpass the degree of pain RSD inflicts on one's body.
I'm so sorry for all that carry this tremendous difficulty!❤
Hello everyone. I have CRPS Typ 1. There is a therapy called Axomera. It was developed in Germany. It helped me a lot. I did it around 20 times, but I think it is only available in Germany, maybe Europe. I hope you will find a way to feel better soon. 🙏🏻 It is a horrible disease. Don’t give up. ❤️
What do you think of the use of Low Dose Naltrexone in cases like this? I've seen some promising trials and some positive anecdotes.
I’ve been thinking about it. My doctor has done a fabulous job explaining it to me. Im not close to any doctors that do it but could try remotely if they were willing. Im so scared of everything. Im following some groups on it. I see this was 5 months ago. Did you make a decision?
I've been taking LDN for over a year now. It was a game changer for me. I combined it with ketamine and my Condition is much better control now. I still have bad flares occasionally but they calm down much quicker now. Highly recommend!
Dr Strong, what about using duloxetine in the treatment of the chronic pain?
Got rsd 30 plus years ago first in my right arm now full body been that way for a while now getting shocked in the head can rsd go into the brain
Friendly warning to the other women out there - 1% of women on gabapentin/lyrica start growing facial hair. I had no clue what was happening it went on for years - to the point its too late to reverse the damage. If you start seeing hairs on your chin, change medication before you grow a beard 😔
I have burning sensation in summer and electric shocks and continues pain non stop in my back, left leg, right arm
I can’t walk for more than 5 to 10 min
I am not allowed to drive a car
i’m scared that i won’t be allowed/able to drive, my ankles and knees are awful and i’ve gotten to the point where my pain in them is always there and never goes away
Thanks for explain CRPS. I m in pain for 7 years now and i take a lot of medicin and have done many surgeries. In my country people doesnt understand at all. With this video my mother can undestand more easely.
So I was diagnosed with central sensitisation syndrome. This seems very much the same
I have CRPS in both my arms. Thank you for sharing more info about this condition.
Disappointing that holistic treatments were not mentioned. Acupuncture and self hypnosis have saved my sanity. I don't fully understand the relationship of the subconscious mind and the sympathetic nervous system. Simply put, I know that the measured breathing and focused visualization - other wise known as self-hypnosis, with practice, can stop an acute flare within minutes. I explain it this way. The subconscious mind shifts focus away from the SNS pain messaging. For many years pain was considered the 5th vital sign. The abuse of synthetic opioids should not preclude legitimate CRPSers from obtaining relief opioids provide. Depression and PTSD associated comorbidities of CRPS warrants further research. need
I'm sincerely glad that acupuncture and hypnosis were helpful therapies for your pain. However, there is not sufficient supportive evidence for physicians to make a general endorsement of them in CRPS.
Thank you so much for this video!
I just got a triple bone scan that indicated this. Thanks for the video. I’m trying to learn all I can. This stinks I broke my left ankle and started to have burning pain in the entire leg.