Complex Regional Pain Syndrome (CRPS)
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- čas přidán 24. 07. 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.org/article/S00...
www.ninds.nih.gov/disorders/p...
#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)
![[PART 1] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](/img/tr.png)
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 ☹️❤️
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
Thank you for the effort to bring up this "Underappreciated disease".
It sure wears our family out.
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...
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 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?
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
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
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
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
You seem like an amazing doctor! I wish more doctors were understanding of pain, especially in women and POC.
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 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 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
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 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 was preparing the topic 'COMPLICATIONS OF COLLES FRACTURE' for my college exam today and I opened my CZcams to this. ❤️❤️❤️❤️
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!
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.
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.
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
thank you so much,sir for this one.
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
I have CRPS in both my arms. Thank you for sharing more info about this condition.
This is an awesome series!
Thank you so much for this video!
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 🩵
Thank you. It is so hard to find knowledgable doctors here in Florida about this disease.
My ortho surgeon denied me any help or testing even a year after surgery, so my PCP sent me to a nerve doctor and that's how I got diagnosed RSD/CRPS
This same surgeon tried to mark the wrong foot on procedure day after he was over an hour late to the hospital and I got there an hour early. It was my first surgery and I'm notoriously an impossible stick, thank you EDS
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.
Thank you for the information. I was just diagnosed today.
Thank you very much. Good lecture as always.
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 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.
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
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 ..
Thank you. This was a very informative video. My 9 year old was just diagnosed and is in constant severe pain.
That is hear breaking to be a Mum of a child with this.
I am so sorry to hear your child is suffering with this. I pray God comforts and heals your child.
i was diagnosed with it at nine, i’m currently 11 and am raising awareness at my school for it! i hope your daughters doing well and hope you have found a pt or medication that helps her!
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. ❤️
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.
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.
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.
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…
Music at intro is sublime, 2 best genres, classic music " Bach" at past videos, and now Rock, the true evolution of the former one
Thanks for upload.
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.
I was diagnosed in 2017. Allodynia is what (if I am remembering this right) the biggest symptom that led to my diagnosis was. It was so bad even wind hurt for my entire lower leg. Going home from school in tears everyday, barely sleeping due to the pain (in bed at 9, fall asleep 2-3 am, wake up at 6 for school), and pain meds not really working (no hard ones cause of my age and chance of addiction due to length of time I wound up being in pain for). Still deal with it but thankfully spend some time in remission but now shifting to permanent as I have noticed my knee being more sensitive to barometric pressure changes and sudden external temperature changes too (banged it when I slipped on ice and kinda just stayed; typically only 1 or 2 for me daily, which is around 5 or 6 for normal people). Triggered bad by really any injury. Pain in my behind and made me grow up faster than I should have had to to be taken seriously by people as "oH bUt YoUr tOo YoUnG tO bE iN tHaT mUcH pAiN" unless I acted more mature. Also, unhealthy coping mechanisms that I am now actually dealing with (shove all emotions down until the box they are in can't hold it all and explodes)
Wind is the worst!!! We have to do things at pain levels others never could or we won’t have a life.
My PTs are mimicking the Calmer Center Scrambler Therapy. It lowers the volume some. We take every 5%, 10%, 15% we can and add them up.
As for those darker places, the support group I was with had this great quote “You can go there, just don’t unpack your bags.”
Wishing you low pain days and going through the stages of the grief processes, getting to know “spoon theory” and some morbid humor helps - CRPS medical memes.
Thank you . When it start to spread to other parts can it begain to spread in the first months
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?
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?
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?
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 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.
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.
We need more awareness #crps
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?
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. ❤❤
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.
Thank.you.so.much.sir.
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.
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.
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.
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.
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.
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.
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!
Have a family member that suffers from CRPS which was recently diagnosed. She suffered many years with degenerative disc disease and idiopathic scoliosis with the pain ever increasing. Eventually the doctors suggested ACDF surgery of her neck which unfortunately had the opposite effect of helping with pain she was suffering. It has been nearly 7 years since then with her left arm and left leg suffering the most, but has issues in all limbs. They can't put blood pressure cuff on her left arm, or really touch it without causing pain sensation in varying degrees. There are days she has such severe cramps from a flare up that she is left unable to move for nearly 30 minutes and then in pain the majority of the day. She is on enough medications to keep what pain they can control tolerable, but she is never out of pain. I have watched her quality of life deteriorate to such that many things she used to enjoy doing, even if at a slow pace, she can barely participate in either due to mild pain sensation or due to a flare up.
I can't say she hasn't suffered this condition longer, as it is still a very misunderstood condition. It is possible she has been suffering it for the better part of 30 years, but was only diagnosed last year by a pain specialist. I wish that this was better distributed through the medical community, but even more so wish it was better understood the cause and way of effectively treating it rather than managing it as best as possible. There is a reason why this condition has another, uglier name that I care not to repeat, and having watched someone suffer it for as long as I have I can't say I would wish it be experienced by others. Worst of all, be one who suffers it and doctors who don't know enough about it not able to really take the patient serious in how much pain they constantly live with.
Please don't misunderstand my statement, even with proper management the patient will still be in pain. It is about managing it to a tolerable state, but due to this being nerve pain/inflammation there isn't much that really helps nearly as much as someone suffering from it would like. Again, my family member is never entirely without pain, it is always there and certain sensations/experiences aggravate it, but luckily she has been lucky enough to have had a pain specialist that could identify what it was and helped her in managing the pain levels. For those of use without CRPS our normal day to day pain level is a 1/10 (maybe 2 depending on job), but I would say her normal pain threshold is typically at a 5~6/10 with flare ups sending it to 9~10/10. It is certainly no way to live.
OMG- YESSSS on the blood pressure cuffs! I’m sorry she went through life so long without knowing what was going on.
And although we know the pain scale goes to 10, when you have CRPS it’s more equivalent to a 13 if that scale continued.
Check out RSDSA’s CZcams channel. Lots of great info and top doctors presenting.
Wishing her low pain days ahead.
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
AMAZING
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
Are there any specific foods that folk find to be a trigger?
I find dinner makes things worse.
I had both my feet crushed by 2000lbs of concrete last year. Just got diagnosed with crps.😔
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?
How about its differentiation from compartment syndrome, if it is primarily posttraumatic and postoperative?
Is there a link to it?
Can a sympathetic nerve block resolve and diagnose CRPS? Like a stellate ganglion block
The short answer is yes. Here's a non-paywalled paper that discusses 3 cases of using a sympathetic nerve block (including 1 with a stellate ganglion block): www.ncbi.nlm.nih.gov/pmc/articles/PMC5959427/
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.
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
Has anyone else with CRPS had this? I keep having flare ups spontaneously occur with no injury every few months I have a flare up in one of my ankles and they last atleast a month, it’s really starting to affect my life It’s that typical CRPS deep burning squeezing pain but I have never had it flare up with no injury until the past few years.
i have the amplified version and yes this is very normal, for my case rooms and emotions cause me pain. For example my brain associates my science classroom with finger pain because i got a flare up in my hands during science class in there before.
I have had this for almost 20 yrs... had to go through desensitization therapy, I no longer could stand my husband holding my hand.
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!
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
Hi. I had a blood test yesterday and last night and today my arms have been numb and like shocks/sensation of stinging go to both arms. Even the arm without the blood test is sore and it hurt to have a shoulder bag over it. It's kinda gone to my legs in like a pressure and tingling in feet. and last night I had super bad headache to the point I felt kinda light headed. I did have a panic attack during my blood test cos I have severe needle phobia and general anxiety issues but I've never had a,reaction like this, normallyI'mjust tired from the attack. Is it just a nerve or the beginning of crps? My Hands are going numb too and it's scary.
Try to get a test for MS
Multiple scoliosis?
@@stxr2893 yeah
@@stxr2893 Multiple sclerosis (MS) is a condition that can affect the brain and spinal cord, causing a wide range of potential symptoms, including problems with vision, arm or leg movement, sensation or balance.
It is an autoimmune disease that if diagnosed early can slow the progression of the disease
@@theinventor7027 my parents aren't that bothered. They think it's strange but my mum thinks I don't need a doctor cos I've been blaming a nerve and my dad is a but more worried. Don't need another chronic illness lol I already have severe scoliosis 🤣
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.
Is CRPS common in those with Ehlers-Danlos Syndrome?
Is CRPS common in patients with EDS? No - meaning the overwhelming majority of patients with EDS do not have CRPS.
However, there is a reported *association* - meaning that the two conditions (hEDS and cEDS) occur in the same patient more frequently than would be expected by chance alone if they were completely independent of one another. It's not currently known whether this is because something about the pathological mechanisms behind EDS also can cause CRPS, or if it's because EDS puts patients at higher risk of musculoskeletal injury in general, and it's that which increases their risk of CRPS.
Some stroke people? Or is that something different.
Its the worst imaginable pain. I can't even explain how bad crps is. Please help me
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.
Can any one explain pathophysiology?
I feel like you left out lesions on the skin and dystonia I'm wondering why?
Thanks for the comment. When I started this series on underappreciated disease, my stated intention was to keep each video under 12 minutes in length to maximize the ability of busy interns to watch them. This necessarily limits how much information can be squeezed in. I've since become less strict with my self-imposed 12 minute limit, but this was one of the first videos I had included in the series since it feels like one of the most egregiously undertaught diseases in med school (i.e. most med students graduate without even learning about its existence!) Apologies if you felt it excluded an important clinical manifestation.
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
What tools do folks use from their toolbox to manage strong emotions (as an example when there has been an injustice)?
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
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
New netflix doc about this 'Taking Care of Maya'. Highly recommended.
For anyone wondering, Maya was diagnosed with CRPS.
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/
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
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.
So I was diagnosed with central sensitisation syndrome. This seems very much the same
is there any guidance re: imaging in CRPS?
Imaging plays only a very minor role in CRPS. CRPS is what's called a clinical diagnosis, meaning a diagnosis made by history and exam (and by ruling out competing diagnoses). Some changes in the bones of affected limbs can be detected by bone scan and even by X-ray (e.g. asymmetric osteoporosis affecting only a hand affected by CRPS), but these findings have a non-significant negative predictive value (meaning if imaging is normal, it does *not* decrease the probability that CRPS is present). In short, I can't imagine many clinicians changing their diagnosis or treatment plan in a patient with suspected CRPS based on imaging tests.
What ABOUT THERMOGRAPHY TESTING THIS WOULD ALSO SHOW THE CRPS CONDITION. And why isn't mentioned more in the information sites regarding this test?
@@StrongMed -- what about THERMOGRAPHY testing to view changes and the spread of the condition?
@@oliviaortiz5157 Although people have been studying the use of thermography in diagnosing and classifying CRPS for >20 years, the results to date have not been convincing enough for pain management experts to make it a routine part of the evaluation. (I don't know the thermography literature remotely well enough to personally argue for or against it.)
@@StrongMed The Italians believe that localised bone marrow oedema points towards CRPS . And, as mentioned below, thermography. I have very wide temperature asymmetry of hands, feet and elsewhere. Dr. Getson USA says thermography has always shown clear disturbances in over 1,000 patients. Every single one, he says
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.