With CRPS swelling, color, and temperature changes are not always constant. I highly recommend that sufferers take photos of their affected limb(s) and journal symptoms (including dates and durations) and pain on a scale of 0 to 10. We have found that frequently doctors don't understand the severity, and patients with such pain have a hard time conveying details doctors need to diagnose & treat. Also, Dr. Norman mentioned "referring the patient to a specialist," but didn't say WHAT kind of specialist. We were sent all over the place and never reached a doctor that could give us answers or direction. We have found help and hope, but not from the doctors we expected. My heartfelt love and prayers for others suffering with this condition.
I have a lot of problems with the take pictures and all that stuff. Cause if you can't get to a doctor, sometimes I can't even ride a car or put my feet on the floor, lay down all kinds of things, like this is a very, very painful thing. Like, I've had people be like, well, I've had a sprained ankle and it's like, I wish I could have a sprain angle for the rest of my life instead of this. This is something that is just so, so, I mean, I don't even believe that it can possibly do this. It's so painful. And after, like, a few days of not being able to sleep at all, and you're in pain, it doesn't stop. It really starts to make you a little crazy. I mean, but it's all good. Um, I don't, I don't know what else there is to think that something has to be done about, like, the the criteria. If you have video and you can show them that **** they should hear like diagnose you and the only reason for that **** is that, at least when you have a diagnosis, like you're not like, what the hell is wrong? And all that kind of stuff that, like, is when you're just like, I don't know what's wrong. I go all these doctors, blah, blah, blah, and it makes no sense. And they're not saying anything, and maybe they know, maybe they don't, and maybe you have just like one thing that's not there, or two, whatever it doesn't matter. But they should just be like, I think you have this. Let's start doing something. Like, this is **** insane, that they just pretend that, like, oh, let's, as long as you have all these things, and I see it went while you have all these things, that's the only way you get diagnosis. When you got like three to six months to do something, or it's permanent for us to your life, that, to me, is so horrible and it's. And it's like, so bad that I don't want that kind of **** happening to other people in that Budapest criteria is one of the worst things I've ever heard of, just because of people not being able to be diagnosed at all, just because of the doctor didn't get to see it in person. Well, Jesus Christ, that sounds so stupid to me. And it really makes me angry, because, I mean, all when I got this, I'm running around, I had insurance. They want to pay for a **** **** thing. And they wanted me to, well, this is experimental. Well, guess what? Then, why the hell was I paying for insurance? And you won't pay for this. That's kind of what insurance is. And like that kind of stuff. And all this other things is really bad. And I don't like the fact that other people go through it, and it's one of the things that has me very strong for, like, the, you know, Medicare for all, just because I know a lot of things about that, how much she broke me if this middleman's insurance kind of **** was not involved, like, what the **** They create paperwork for doctors. I'm sure doctors would like love, not have to deal with these people. Tell him what to do, even there. They have no medical training. There's just some, some try to save some money. And, ohh my god, I just feel like I just got through one, and, like, I feel so great and lucky that it's over. But, you know, I'm gonna just forget about it and try and get some stuff done and enjoying what the Times that it's not like that. I mean, whatever, that's all you can really do, is just positive outlook. And that goes a long way, as as does not thinking everything is horrible. You like this over 'cause, like, yeah, if you think, well, at least this is over now, like, people don't understand how I have something like, well, maybe it's only a few days out. I don't really care. But once it gets to be a week, two weeks even a month, maybe the longest time I ever did. Had to deal with it was a month. And, Oh my god, like, I couldn't even sit. I just sit in a chair for, like, a long time, and just like, barely doing anything. It was so horrible. Like, I don't even want to try and explain that stuff, but I don't want other people to go through the, you know, two years of trying to get diagnosed because I couldn't, I didn't have all the things at once. And, you know, I got a biopsy thing, cut out of my foot while it was all swollen. That hurt like hell, but I still didn't. It's like, what is going on? I don't know. It scares the hell out of people, and I'm sure other people take this a lot worse than I do, or did. And like, I, I don't, I don't feel like people should even go through stuff like that because of some **** insurance, or, like, the doctor doesn't know, cuz I ain't, I never heard of this, and sounds stupid, but like, really, ohh, the most painful thing. It doesn't sound like it, but damn. I don't know. Nobody understands this thing. Just think, oh, it isn't so crazy person if I like, you know, I accidentally posted something that I thought. I thought, ohh damn. This is kind of embarrassing, but it's like, I know, I'm gonna leave it there and just be like, this is how, like, I can't sit down, like, I couldn't even, like, make words, but I was saying that for myself, cuz I do laugh at myself. It's like, holy **** That's horrible. I'm like, no, I look like an idiot, whatever. That's funny to me, just because what else am I going to do? My friends are like, you know, that's not funny. It's like, well, it's me doing it, like, and I to me, because I don't have it right now. That is kind of funny. And what also was crying **** about it? Like, when I can just, oh, that's funny. And, like, Well, you know, but I don't, I don't like to factor other people off to **** deal with the doing test criteria, and probably end up with that stuff for life, cause they don't have a symptom or two while they see the doctor. And that's all I wanna say right now about that. Nothing really new about this, because that's the only reason I even looked. I don't even go to the hospital anymore. It's like, what are they going to do with the way the bank treat people wanting painkillers and stuff like. It doesn't even make sense. Like, this is the most painful thing there is. I shouldn't have a problem when I'm on disabled and like, you know, they don't, it's not like a short term disability. I've got the long-term thing, got my handicap parking spot, which I only use when I need it. Like, I don't, I don't do it. I don't take advantage of things. And, you know, if I can't walk, I wanna walk some exercise. And people need that **** like, I'm really rambling. When I talk about this, I get mad, and I hope it wrote down exactly what I said, because sometimes these things that are supposed to be typing what I'm saying don't work that well. And I think this comment is too long. And, ohh well, I'm just gonna post it 'cause I'm not reading this right now. Alright. Thank you. Goodbye.
Thanks for showing a patient without screamingly obvious CRPS signs. Too many doctors seem to think that CRPS only exists if they can clearly see every single sign and symptom of CRPS (if they even know them all) during your ten-minute appointment. If they don’t, even if you’ve been diagnosed before by an experienced clinician more than once and have had CRPS for years, even if their own experience of the disease is limited, they often feel free to doubt that you have it... Too many have little knowledge of the disease beyond the early, obvious symptoms, don’t understand how the signs and symptoms can change over time, and don’t believe it can spread. There needs to be so much more education on this terrifying disease. It is the eighth circle of hell. I am lucky to have a good GP now, but have experienced several distressing appointments, and know the terrible damage they do to patients already in a very bleak place. We all deserve a good doctor who listens and really tries to help. I’m nine years in. By gum it’s a rough road we walk together. Hold on in there everyone.
I have had arm ad hand CEO’s for 2 years my skin color changes are mild but I have a lot of swelling and limited range of motion and pain. I recently been diagnosed with CRPS of my leg after an I jury but my leg is a lot milder in presentation but the pain isn’t and agropgy
Very good! Most, if not all, methods were utilized by my pain doctor. I remember being tested this way. Thank you to all who are trying for CRPS awareness! I can walk again because a doctor saw the signs at first glance. Treatment started that day. I still see someone. But no pain can compare to the pain of CRPS.
you are so lucky and I think the criteria is the most horrible decision that they won't help you unless you have everything at oce and must be able to get an appointment while you have all of them they don't care if you have pictures video or whatever if this is not changed lots people can't do anything while they can help you and you won't have it your entire life and I really find it crazy that I see these doctors the budapest criteria is so great and no real new info has been found at all and I'm just getting through a flare up of a full week of torture can't do anything and its why people commit suicde with this and I volunteered to help talk with people who got it but I had to stop just because that negative emotional stuff was sometimes too much and now i don;t think about it but these flare ups are less and the control of the body is helpful if you learn alternative eastern medicine...
Dr. Harden, I so wish you could get all these criteria out to the medical community!! You make it so easy to understand and diagnose but the doc's I have seen don't even come close to seeing the real signs and symptoms after years of having this HORRIBLE disease!! My symptoms have changed drastically from the onset of my CRPS 5 years ago! They are still looking for the first initial signs...I have gone through all that. They weren't there then and didn't see my feet/legs in the beginning! This disease has gone through so many different changes but I don't see any info out there that addresses CRPS after years of having it. These doc's have our lives in their hands and treat us like it is no big deal if they don't think we have excruiating pain!! We are at the mercy of these STUPID doc's and they are the ones that are suppose to help us!! LIVING IN CHRONIC PAIN IS LIVING...at least if it was cancer we would know an end was coming!! So wish it was mandatory for doc's to stay on top of new data!
How can the government dictate what and how much medicine I need for my pain? Yes, what that doctor is telling you is true. It applies for the USA as well as, Canada. Due to the "Opiod Crisis" both countries have decided to target REAL chronic pain patients rather than come up with a plan to address the illegal drugs being imported such as Fentanyl, or any of the other Opiods, and being abused on the streets. It was easier to target REAL Chronic Pain Patients and their Opiod dosages by Using what was initially drafted by a group of medical professionals in the Pain management capacity (amongst some others) to assist GP's in feeling comfortable yet cautious when prescribing pain meds to their patients. The outcome was explicitly published and identified as "Guidelines" only! As there was concern that the Insurance companies and the government would use the Guidelines as RULES! Anyone who has pain or treats pain properly knows that there is no "one size fits all solution". But as anticipated the governments & insurance companies have adopted them as the RULES. I have already been warned by my doctor's fill in, that it's coming and I better prepare myself to have my medications severely reduced. When I told her that I have been sustaining on these meds, which it took almost 7 years to get to. She said it was over the max. guidelines and that "it is coming" and that their licenses were on the line. I responded in many more words than this but it comes down to ....MY LIFE is on the line!!!! I have already tried Ketamine infusions and that did not work for me, I was turned down for the SCS surgery and that is the extent of what is being offered in Canada at this time. So drugs are the only option. You should not be able to mess with them unless you have been given a proven alternative first! The problem is that the governments are not distinguishing between Opiod ABUSE and street drugs for the most part (most of the drugs are not prescribed) and the Opiod USE and life line for the chronic pain patient. Chronic pain patients being yanked off of pain meds will either commit suicide intentionally due to fact that you just cannot LIVE with the pain!! Those that chose that route are often just lumped in with ALL of those druggies that abuse those drugs. Some indeed will end up using those drugs available on the street if you are giving them no choice (given the choice between pain = life & death=no more pain ). Given that especially in the situation of CRPS patients the pain is a 48 out of 50 on the MCGILL Pain Score. All pain is indeed NOT the same! Even in chronic pain. Every person does not feel the same pain, but it all hurts! The USA's "RULES" can be found under "The CDC's Guideline on Opiod Prescribing in pain patients". You should also look at the Nov. 1, 2017 "The President's Commission on Combating Drug Addiction and the Opiod Crisis." The list of "Authors" is pretty interesting/confusing, considering the topic. I hope this helps Kelly W.
Hey Suzanne! Hell yeah, I hear ya! You got hit the nail on the head. Since I have been dumped on by my doc and going through all this pain, I try and distract myself from the pain by going to different pain sites to spread the word that we SHOULD NOT BE GOING THROUGH THIS HORRIBLE ABUSE! I found a petition to Congress that needs to be SHARED to all the CPP's or ppl that are being effected by this BS! I will link it... www.petition2congress.com/ctas/first-do-no-harm-dea-targets-physicians-who-treat-their-patients We have to stand together to get our pain heard. There are 100 million CPP's (chronic pain patients) and if we could reach even half of them and bombard Congress and all the other idiots, we could get some change started! I am losing my life and mind like so many others. If we as CPP's don't speak up they will keep pushing us aside as pain refugee's. All the sites, blogs and stories are all the same...people are at their ends with no where to turn and DAMMIT this has to STOP. It is like we are living in a third world country, not the USA. I did read that article about what the UN had to say about how we are being treated...unbelievable! They can recognize this but our own government wants to try and make people believe the so called "opioid crisis" stems from prescription pain medications! WRONG... illicit fentanyl and heroin are to blame. I also read how the stats they try and put out are so far from the truth. When someone dies from an overdose, the way they have it classified, makes it come under "opiates" as the cause regardless if it was illicit fentanyl, heroin etc or a combination. So it is all being thrown in one basket and being put out there as if all the OD's were prescription opiates! That freaking Kolodny needs to be kicked the hell out...these people that are sitting in chairs thinking up this BS have no clue what it is like to live in chronic pain 24/7, 365... NO CLUE AT ALL! Kolodny just tweeted from USA Today that more than a million of people will die because of the opioid epidemic!! What the hell is he spouting now...MORE LIES! We have got to come together, in this day and age of social media we can reach so many people. There is another site I came across that on the 1st of every month an automatic message is sent out to all of the idiots! I need to find it and send it to ya too. I would love to be a fly on the wall to see their faces when thousands (hopefully more) of letters are sent all at one time! Maybe they will start to get the message! The petition link has approx 34,000 messages already sent, we need to UP that number!! Share, share, share...to everyone you know. Great to talk to ya! If you hear of any other petitions etc let me know! We have got to put an end to this! Take care, Ttys "light" hugs from Texas!
@@melisa1439 same for me, I say it hurts like hell and my family says, "well I hurt but I still push through it". Like at this point the only think I want to push through is the next flare up
@@cjsmith i ve it in both forearms. It s unbearable. I don t know how to cure this hell, but i put frozen scratches on them. Reduces severly swollewing, , unberable pain, severe heat, an redness. Please try that. You can buy these scratches in pharmacists. Wainting, put if you can put your hand under the coldest temperature water( shower) you can. It unsensibilizes the nerves and pain avoiding the feedback in the brain. Of you want, keep me in touch.
I have Suprascapular nerve impingements in my shoulders not due to cysts. My muscles in my dominant arm is or almost 100% atrophied, it’s about 85% in my other. It took me 21 yrs to get diagnosed & I’ve spent another 3 seeing an additional top 13 surgeons including the Mayo Clinic all for which none could help me. Turns out I need nerve impingement surgeries & muscle transplants & nerve transplants. There is only 2 surgeons in the world that have ever done nerve transplants before. I now have RSD in my arms & it’s spreading to my leg. I am only 38 I don’t know how I am gonna live in this much pain for the rest of my life! 😢😢😢
Great video! I am going on 5 years with CRPS and the journey has been hell. My pain doctor that I had been with for years, just retired and the new doctor is absolutely the worst at CRPS diagnosis! I was diagnosed years ago and she quickly told me she didn't think I had CRPS!! I am in a different stage of the disease now...it started out with the EXTREME pain, redness and swelling but has changed throughout the years. They seem to be looking for the beginning signs of CRPS. My swelling has decreased but the pain has got worse and I have EXTREME bone pain. It started in my left ankle/foot and a year later it jumped to my right ankle/foot as well. It has graduated to more of a cold stage now ( I do still experience HOT episodes as well) after these 5 years. My left ankle and four little toes are froze up due to the CRPS. I am a very educated patient about my disease and the new doctor didn't know anything about CRPS. She probably went and looked up a few symptoms before she came in to see me. To top it off she didn't want to see any pictures that showed my horrible legs throughout these past 5 years! I have documented pictures of how this disease has changed through the years and she just scoffed at me!! I finally got a different doctor and he is pulling the same thing...he is not continuing my medication that I have been on all these years. I finally found a good medium of medication to keep me at a functioning level but now I have been stopped from them and have been suffering horribly!! He is making me go get updated MRI's and a BONE SCAN before he will even think about prescribing me a narcotic pain medicine. All my tests and MRI's were 3.5 years old and he says they are too old!! Of course my insurance is fitting the bill for all these new test. It seems to be all about the money these days. I have other issues as well as CRPS...5 bulging discs, osteo arthritis, DDD, knee problems, Vit D deficient and severe nerve damage in both legs. Like these new tests are going to show my back has got better over the years!! It is awful to live with extreme chronic pain 24/7 - 365 and the doctors don't seem to care?! He even told me that he could only prescribe me so much medicine anyway because of the government!! How can the government dictate what and how much medicine I need for my pain?! It is ridiculous that we are put in a certain class that restricts our care!! All I know is I am suffering till I can get these test done and then hope he might try to help me! There is NO guarantee I will be helped either way!! Pain doctors should be required to go back and get all updated info on chronic pain diseases!! People are suffering needlessly and our lives are in their hands...we are backed into a corner! They don't have to live our lives, it's no big deal if they just brush us aside...it doesn't effect them! They aren't the ones confined to their home in constant pain, I bet if it was their mom, dad or family it would be different. Sad to say but so true. These pain doctors should know more about CRPS but they get mad if (us) CRPS patients try to tell them what we are experiencing...how can anything be learned if patients don't get to tell what we are going through and be BELIEVED?! I wish I could see this doctor but I am in Texas. I need help...
Kelly W. So sorry. I have it too, fell down stairs broke big toe damaged ankle 6/18/2017. Severe severe pain ongoing, X-ray, MRI’s, my dr of 19 years on November 6, 2017 diagnosed RSD, I moved from California to Georgia 11/2017. All I do is try to manage pain, trying to find new doctor has been daunting. I have swelling, temperature change, skin color change, sweating,, goes now into other ankle, that has 3 bones of Arthritis, plus when fell down stairs happened injured lower spine sciatica nerve, mri showed bulging discs, cervical fusion surgery in 1993 now all cervical degenerative... pinched nerves in elbows with carpal tunnel both wrists, fingers numb must shake out constantly. I have been researching everything I can on this diseases....most informative Dr Chropra, Medical dr teaches in Rhode Island, grad of Harvard. Bottom line .... pain will wane up and down, I do epsom salt soaks, pain ointment, low dose opioid...if you use high dose opiate....glial cells will emit more chemicals toinflame your nerves which will drive pain up real fast after opiates wears off...I found this out,my dr warned me but I did not get what she meant until I found out by trial and era. I use very small amt opiate 15 mg or a 325-5 , I try IBPROPhen but this tears my stomach up. So sorry, I I understand your frustration and anger... I am in shock too, this disease is very very scary...the pain just takes over.
Hey Sandra! WOW, so sorry to hear about your CRPS and all your other problems. Yes, you do know what chronic pain is...it's the devil! It makes life so hard to live. Not only the pain but the strange changing symptoms can make you feel like a crazy person. I feel for you and all of the chronic pain patients trying to live with this horrible disease. Hang in there and if you ever need to vent or rant (Lol) just shoot me a message. It's nice to know that we are not alone in this and other's understand what we are going through. Take care of yourself...Ttys! Light Hugs ; )
Hey Sandra! Just wanted to give you a link to a petition to Congress. Sign it and Share, share, share with all the social media you can. We have got to come together to make them hear us. Hope your doing okay, I have been flaring the past couple of days and don't know if there is an end in sight. UURRGG! Take care and Ttys... "light" Hugs from Texas! www.petition2congress.com/ctas/first-do-no-harm-dea-targets-physicians-who-treat-their-patients
Hi Dana, you hit the nail on the head! I'm so sorry you are going through the same devastation with your doctor's too. This seems to be a very common story from chronic pain patients everywhere! It's so barbaric and inhumane for doctor's to have this mentality. I really just don't understand how they can let people suffer unbearable pain when they take an oath for this very thing. I am going to try and get a different doctor because I can't go on with only "3" tramadol a day. My left ankle and legs have been in overtime since yesterday...it has been a long day and probably another long night. Omg, if they could just feel what we feel every minute of every day, I think it might be a different outcome! We all know what stress does to CRPS too, so all this is creating even more amplified pain! My left leg and ankle have been worse than ever tonight...Ugh, this is no way to live. I hope and pray we can get our voices heard to get change SOON! I don't know if you saw the link for a petition to congress about this abuse of chronic pain patients. Please read and sign... SHARE it with everyone and all social media you can. We have got to pull together, there are over 100 million of us being treated this way! I will keep you in my prayers Dana. if you ever need to talk or vent just let me know. Nice to know we aren't alone in this. Take care and hope you have a "lesser" pain night. Hugs from Texas!! www.petition2congress.com/ctas/chronic-pain-patients-petition-reinstatement-rights
I developed this disorder in 2014 after suffering nerve damage during shoulder surgery and since it has been endless suffering on a scale that is hard to describe and even harder for people to comprehend. I have seen numerous doctors that have little to no knowledge about this disorder and have no idea how to treat it. I have undergone every single procedure from nerve blocks to a spinal stimulation device none of which had any positive effects, I have tried over a dozen medications with no effects and I am relegated to pain meds that doctors refuse to prescribe in any meaningful dosage. I understand why they call this the suicide disorder because the constant pain leaves you with few options and you find yourself often thinking about ending your life to end the suffering.
I understand that since I suffered similarly after a fractured knee due to bone tumour and subsequent surgeries. The pain was indescribable and seemingly never-ending. I agree that he pain feels incompatible with life although I hung on for the sake of family.
I was diagnosed with CRPS 2 months ago after 7 yrs of suffering immeasurably 😫 I had 2 shoulder surgeries in 2018. I had and accident 7-31-17 w left shoulder, ripped rotator cuff & bicep 💪 muscle off the bone. I had all ready been on Disability for my Rt shoulder since 2012. So this was the LAST THING I NEEDED ! Insurance made me go to REHAB 😳 5 mo before I could have an MRI !! That is a horrible mistake !! First surgery was to try to repair, also was in 24/7 excruciating pain. That surgery failed, shoulder coming out of socket. 2nd surgery was a RTSR Reverse total shoulder replacement 😫 OMG the PAIN !! I was NEVER given sufficient pain meds. I had no idea of the 2016 CDC GUIDELINES on Opioids at that time. I’ve been fighting all these yrs for PAIN RELIEF & have basically lost my life to under & untreated pain. I just got a Unicorn 🦄 Doctor, that’s a Doctor who actually listens & does not dismiss or gaslight. He’s actually a huge advocate for Pain Patients. He’s in the movie 🎥 “ Pain Warriors” it’s on TH-cam. Dr Mark Ibsen, a true Angel of Mercy. I’ve had him 2 mo now, he’s trying to save what’s left of my life, I was definitely ready to end my life. No Doctors in Ohio would help me, they are all terrified of the DEA. How are you getting along ? Did you ever get your pain treated ?? If so what has helped you ? I’m on 30mg Oxycodone and injectable Hydromorphone !! And I’m freaked out I’m still in pain !!
I remember that i couldn't have anyone touch me lightly on any part of my body as it made the pain in my leg all the more severe. I screamed for weeks despite opioids.
I remember none of my doctors could tell what it was for months... luckily enough a surgeon recognized the swelling, the change in color and th terrible pain I was in! If only there was more awareness in the US... I will probably have to consider going overseas to get my life back on track since I have heard good things about a treatment in Italy..
Thank you, doctor. 1)Could you help me with finding a specialists locally?Colorado. I keep calling, and neurology drs don't want to see me with this diagnosis. PT offices first react as they never heard about CRPS, then check with their PTs and tell me that ANY of them would be able t help. Which is not true, I know. 2)What do you know/think about treatment which is well established in Italy-IV infusions with neridronate? Thanks
Hello, I just moved away from Colorado Springs. I saw the absolutely amazing PA Jamie Case at the Peak Physical Medicine in Colorado Springs if that is anywhere near you. She was the one who diagnosed me and is so amazing. I was heartbroken to have to move back home so my parents can care for me because I didn’t want to leave her.
Can you provide any insight on treatment? I just got the preliminary diagnosis from my Dr. and on my way for confirmation from a neurologist, you can private message me if you like. Thank you
@@RSDSA but couldn't tremors and spasms be related to something else other then CRPS or is this a indication of CRPS? Are there tests that can confirm CRPS just the way an X-Ray can confirm a broken bone?
Brad, not sure if you will see this since you posted so long ago, but the blanket answer YES. My autonomic nervous system became involved after my peripheral. It began with “libel” blood pressure switching from very high to very low. Year 10 I developed tachycardia and now take a beta blocker which really helped calm my blood pressure. I’m also on 3600mg of gabapentin daily, Amitripyline, LDN therapy & Valium for muscle spasm. I’m getting a new 12yr battery life Boston Scientific SCS implant. This will be my 3rd one. SCS gave me the best pain relief. Opioids did nothing for me at all, so I don’t take anything of that nature. I still suffer from bone pain, neuropathy (breeze, fan or colder temperatures) immediately cause severe burning pain. I would recommend a trial week for a Spinal Cord Stimulator. Best of luck Brad!
I know this comment was made years ago but I also wanted to say yes (in case anyone else sees this eventually), I had autonomic dysregulation in the acute phase. I was in and out of the ER with tachycardia, "high blood pressure without diagnosed hypertension," my bloodwork was on a rollercoaster, had an elevated d-dimer with symptoms of embolism but no embolism present, weeks long daily cyclic fevers, etc. My hands swell and become mottled even though the CRPS originated in my ankle. I was on high doses of steroids for months when they didn't know what was wrong and it was the only way to keep me out of the ER. Some of the systemic symptoms decreased or went away once I was out of the acute onset stage and going into late stage, and other ones improved once I started CRPS treatment. I still have systemic issues but not nearly as severely now that I've had a lot of treatment.
This doc told me he was just a "lab rat" and really didn't work with patients with CPRS/RSD, over ten years ago; was demeaning in my opinion and would have saved my life post double hit motor vehicle accident! It's one of the biggest horrors of my life.....please...go to Dr. Philip Getson in N.J. who loves himself as a professional man; who lives his patients and seriously takes his life's work so dedicatedly! I am now in a wheel chair and was a dedicated med pro myself. God bless you all. Please pay attention to what people do not what their mouth bigs up about themselves😵
I was said I might have CRPS by my doctor. It resulted from an injury I had on my foot. I don't have constant pain. But when I try to walk, I can feel blood rush in my foot and it changes in color. Is this blood pooling a common symptom in CRPS patients?
I can say for me (diagnosed after foot surgery) The blood pooling is so intense it feels as though my incisions will burst open from the pressure alone, I've also started to have blood blisters surrounding every incision site. The visual changes are very noticeable in a short amount of time, mottled (many different colors, processing more purple the longer I sit or stand), it eventually fills to my knee.
@@elliehart988 Pretty much happening the same with me. It's all purplish and gives bad Raynaud's syndrome. Thank you for your response. That helps! Do you see any pressure misinterpretation happening, when you try to walk on your foot. It's like, the tissue under my foot bulges when I walk, and it doesn't become normal after that. The tissue became harder and deformation looks like it's permanent.
Thank you for your video I had a fall on my right hand wrist six months ago I live in British Columbia Canada and although my physiotherapist thinks I have it my GP and two orthopaedic surgeons do not but at the same time they don't have any other diagnoses.They wont even give me a referral to a CRPS pain clinic. How can I push the system so I can actually get in to see his CRPS specialist since this might be my issue?
Greg Scalamogna hi I'm in bc, crps too. 12 years before I got a diagnosis, luckily my podiatrist recognized the symptoms, my gp is not very helpful beyond offering prescriptions. all I have done for treatment is lidocaine infusions, they help with the neuropathic pain, for a few months usually. in the initial stages of crps, Gabapentin and high doses of vitamin c are helpful. good luck!
Hi Greg, I really feel for you! It took me about a year and multiple doc's to finally get my diagnosis. I am in Texas and I am finding that all these "pain mgnt" doc's who are really just anesthesiologist don't know NOTHING about the disease. Since the rescheduling of some narcotic pain meds, they made it to where our regular PCP's can't prescribe them anymore and we HAVE to go see a "pain mgnt" doc!! I am still going through the difficult task of finding a new pain doc since my wonderful doc just retired! It has been hell... I have had CRPS for 5 years and now I have a doc that isn't sure I have it??!! OMG...really?! So, I am having to prove my disease to this idiot... I understand frustration! Even though the State of Texas confirmed my CRPS these idiot's feel the need to take matters into a whole new spectrum!! GEEZ, I was sent to the pain doc to manage my pain not to be diagnosed!! Ridiculous!! I see it looks like you have made it to the 1 year mark with CRPS... did you finally get a diagnosis? All, I can tell you from my experience is try to keep the affected limb moving as much as possible. I didn't get dx in enough time so my left ankle and 4 little toes are froze up without movement now. It did jump to my right ankle/foot as well about a year later but I knew more then from my experience on my left foot. I know your comment was 5 months ago so I pray you got some help...don't give up if you haven't yet!! We need to keep getting the CRPS awareness out there!! Good luck and take care! Kelly from Texas!!
Hi! From ontario just had a spinal fusion and decompression for central spinal stenosis L4to5 spondylolisthesis and herniated disc at L4to5 i am 62. In June16,2018. In ottawa, ontario. My pain got really bad after i took my 3 month brace off. Now my motor nerves are effected where i can't even lift my legs an inch without severe nerve sensory and moter pain. My mobility is poor and just got a wheelchair because my legs give out and have fallen many times. I am also on the patch for many years and the pain is still coming through even with an increase after surgery. Is there a chronic pain dr. At the ottawa hospital? I am not able to travel at this time
Sorry 2017 i had the fusion etc with a history of lumbar plexopathy from a 1988 surgery to remove left ovary, apendix and removal of severe pelvic adhesions from many pelvic surgeries .
Not generally but there has been documentation that it may spread to the internal organs: rsds.org/wp-content/uploads/2015/02/Systemic-Complications-of-CRPS.pdf
Mine got into my heart and lungs during the acute onset because mine immediately became systemic and I had autonomic dysregulation. I ended up with pleural and pericardial effusions and a thickening of my ventricle wall in addition to pain, tachycardia, high blood pressure, and breathing issues. My bloodwork was on a rollercoaster, different every time it was run. I even ended up making antibodies against my own blood vessels (C-ANCA). I was diagnosed with both CRPS and Central Sensitization at the same time so the CS might be what caused the spread to my whole body instantly. Most people don't get it systemically and so widespread though, I won the unlucky lottery. I was on high doses of steroids for months until I started moving into late stage CRPS but then the organ and systemic issues started lessening but the atrophy, bone loss, and paralysis worsened. Then I finally got diagnosed and started treatment and am doing better than I was. I still have "unspecified small blood vessel changes" and "hyper reactive blood vessels" all over but no more tachycardia or breathing issues.
@Mildred Hare, I’ve had RSD since early this year. Prior to my Sympathetic nerve block injections in the late summer of this year, I could not have anything even lightly touch my skin just as seen in this video, it was soooo painful to shower and put on clothes. After 3 injections, (although the the pain came back full force now minus the extreme skin sensitivity) the light touch with light water, clothing or just anything light doesn’t increase the intensity of the pain like it used to. However, hard touch like for some people around me just like slapping me when they say Hi 🤦🏾♀️ (there used to doing this to me prior to me having RSD), or grabbing or pressing/leaning increases the intensity of the pain not only in that spot that is touched but it shoots of pain in other areas.
Honestly you don't know what you're talking about. People outwardly show pain in different ways. No two CRPS patients are the same. Mine was severe including atrophy, bone loss, spread, etc. I was mostly wheelchair bound and also starting to lose use of my hands/arms. It was in my heart, lungs, eyes, ears, everything. Doctors were able to touch my leg where it originated, push and pull to assess its strength, etc. But then I couldn't walk on it because it was too painful and a pin prick had me recoiling in pain on the bad leg but not the good one. I was crying and yelling during the EMG on my bad leg but the good part of my body tested just felt weird. I had every Budapest criteria. Don't expect every CRPS patient to be a stereotype of whatever assumption you have made. Some CRPS patients can be touched gently without outwardly screaming.
![[PART 1] Understanding CRPS: The Truth About it’s Neurobiology and Effective Treatments](/img/n.gif)
With CRPS swelling, color, and temperature changes are not always constant. I highly recommend that sufferers take photos of their affected limb(s) and journal symptoms (including dates and durations) and pain on a scale of 0 to 10. We have found that frequently doctors don't understand the severity, and patients with such pain have a hard time conveying details doctors need to diagnose & treat. Also, Dr. Norman mentioned "referring the patient to a specialist," but didn't say WHAT kind of specialist. We were sent all over the place and never reached a doctor that could give us answers or direction. We have found help and hope, but not from the doctors we expected. My heartfelt love and prayers for others suffering with this condition.
I have a lot of problems with the take pictures and all that stuff. Cause if you can't get to a doctor, sometimes I can't even ride a car or put my feet on the floor, lay down all kinds of things, like this is a very, very painful thing. Like, I've had people be like, well, I've had a sprained ankle and it's like, I wish I could have a sprain angle for the rest of my life instead of this. This is something that is just so, so, I mean, I don't even believe that it can possibly do this. It's so painful. And after, like, a few days of not being able to sleep at all, and you're in pain, it doesn't stop. It really starts to make you a little crazy. I mean, but it's all good. Um, I don't, I don't know what else there is to think that something has to be done about, like, the the criteria. If you have video and you can show them that **** they should hear like diagnose you and the only reason for that **** is that, at least when you have a diagnosis, like you're not like, what the hell is wrong? And all that kind of stuff that, like, is when you're just like, I don't know what's wrong. I go all these doctors, blah, blah, blah, and it makes no sense. And they're not saying anything, and maybe they know, maybe they don't, and maybe you have just like one thing that's not there, or two, whatever it doesn't matter. But they should just be like, I think you have this. Let's start doing something. Like, this is **** insane, that they just pretend that, like, oh, let's, as long as you have all these things, and I see it went while you have all these things, that's the only way you get diagnosis. When you got like three to six months to do something, or it's permanent for us to your life, that, to me, is so horrible and it's. And it's like, so bad that I don't want that kind of **** happening to other people in that Budapest criteria is one of the worst things I've ever heard of, just because of people not being able to be diagnosed at all, just because of the doctor didn't get to see it in person. Well, Jesus Christ, that sounds so stupid to me. And it really makes me angry, because, I mean, all when I got this, I'm running around, I had insurance. They want to pay for a **** **** thing. And they wanted me to, well, this is experimental. Well, guess what? Then, why the hell was I paying for insurance? And you won't pay for this. That's kind of what insurance is. And like that kind of stuff. And all this other things is really bad. And I don't like the fact that other people go through it, and it's one of the things that has me very strong for, like, the, you know, Medicare for all, just because I know a lot of things about that, how much she broke me if this middleman's insurance kind of **** was not involved, like, what the **** They create paperwork for doctors. I'm sure doctors would like love, not have to deal with these people. Tell him what to do, even there. They have no medical training. There's just some, some try to save some money. And, ohh my god, I just feel like I just got through one, and, like, I feel so great and lucky that it's over. But, you know, I'm gonna just forget about it and try and get some stuff done and enjoying what the Times that it's not like that. I mean, whatever, that's all you can really do, is just positive outlook. And that goes a long way, as as does not thinking everything is horrible. You like this over 'cause, like, yeah, if you think, well, at least this is over now, like, people don't understand how I have something like, well, maybe it's only a few days out. I don't really care. But once it gets to be a week, two weeks even a month, maybe the longest time I ever did. Had to deal with it was a month. And, Oh my god, like, I couldn't even sit. I just sit in a chair for, like, a long time, and just like, barely doing anything. It was so horrible. Like, I don't even want to try and explain that stuff, but I don't want other people to go through the, you know, two years of trying to get diagnosed because I couldn't, I didn't have all the things at once. And, you know, I got a biopsy thing, cut out of my foot while it was all swollen. That hurt like hell, but I still didn't. It's like, what is going on? I don't know. It scares the hell out of people, and I'm sure other people take this a lot worse than I do, or did. And like, I, I don't, I don't feel like people should even go through stuff like that because of some **** insurance, or, like, the doctor doesn't know, cuz I ain't, I never heard of this, and sounds stupid, but like, really, ohh, the most painful thing. It doesn't sound like it, but damn. I don't know. Nobody understands this thing. Just think, oh, it isn't so crazy person if I like, you know, I accidentally posted something that I thought. I thought, ohh damn. This is kind of embarrassing, but it's like, I know, I'm gonna leave it there and just be like, this is how, like, I can't sit down, like, I couldn't even, like, make words, but I was saying that for myself, cuz I do laugh at myself. It's like, holy **** That's horrible. I'm like, no, I look like an idiot, whatever. That's funny to me, just because what else am I going to do? My friends are like, you know, that's not funny. It's like, well, it's me doing it, like, and I to me, because I don't have it right now. That is kind of funny. And what also was crying **** about it? Like, when I can just, oh, that's funny. And, like, Well, you know, but I don't, I don't like to factor other people off to **** deal with the doing test criteria, and probably end up with that stuff for life, cause they don't have a symptom or two while they see the doctor. And that's all I wanna say right now about that. Nothing really new about this, because that's the only reason I even looked. I don't even go to the hospital anymore. It's like, what are they going to do with the way the bank treat people wanting painkillers and stuff like. It doesn't even make sense. Like, this is the most painful thing there is. I shouldn't have a problem when I'm on disabled and like, you know, they don't, it's not like a short term disability. I've got the long-term thing, got my handicap parking spot, which I only use when I need it. Like, I don't, I don't do it. I don't take advantage of things. And, you know, if I can't walk, I wanna walk some exercise. And people need that **** like, I'm really rambling. When I talk about this, I get mad, and I hope it wrote down exactly what I said, because sometimes these things that are supposed to be typing what I'm saying don't work that well. And I think this comment is too long. And, ohh well, I'm just gonna post it 'cause I'm not reading this right now. Alright. Thank you. Goodbye.
Thanks for showing a patient without screamingly obvious CRPS signs. Too many doctors seem to think that CRPS only exists if they can clearly see every single sign and symptom of CRPS (if they even know them all) during your ten-minute appointment. If they don’t, even if you’ve been diagnosed before by an experienced clinician more than once and have had CRPS for years, even if their own experience of the disease is limited, they often feel free to doubt that you have it... Too many have little knowledge of the disease beyond the early, obvious symptoms, don’t understand how the signs and symptoms can change over time, and don’t believe it can spread.
There needs to be so much more education on this terrifying disease. It is the eighth circle of hell.
I am lucky to have a good GP now, but have experienced several distressing appointments, and know the terrible damage they do to patients already in a very bleak place. We all deserve a good doctor who listens and really tries to help.
I’m nine years in. By gum it’s a rough road we walk together. Hold on in there everyone.
We agree that CRPS comes in different "shapes and sizes" and that more physicians should understand and recognize this!
Doc have no clue of this! That makes you in more hell : for them when they don t know a disease, they say: it s in your head!
I have had arm ad hand CEO’s for 2 years my skin color changes are mild but I have a lot of swelling and limited range of motion and pain. I recently been diagnosed with CRPS of my leg after an I jury but my leg is a lot milder in presentation but the pain isn’t and agropgy
Drs today ate over paid pill pushers with no diagnostic talent whatsoever
Very good! Most, if not all, methods were utilized by my pain doctor. I remember being tested this way. Thank you to all who are trying for CRPS awareness! I can walk again because a doctor saw the signs at first glance. Treatment started that day. I still see someone. But no pain can compare to the pain of CRPS.
What type of treatment u are taking?
you are so lucky and I think the criteria is the most horrible decision that they won't help you unless you have everything at oce and must be able to get an appointment while you have all of them they don't care if you have pictures video or whatever if this is not changed lots people can't do anything while they can help you and you won't have it your entire life and I really find it crazy that I see these doctors the budapest criteria is so great and no real new info has been found at all and I'm just getting through a flare up of a full week of torture can't do anything and its why people commit suicde with this and I volunteered to help talk with people who got it but I had to stop just because that negative emotional stuff was sometimes too much and now i don;t think about it but these flare ups are less and the control of the body is helpful if you learn alternative eastern medicine...
Dr. Harden, I so wish you could get all these criteria out to the medical community!! You make it so easy to understand and diagnose but the doc's I have seen don't even come close to seeing the real signs and symptoms after years of having this HORRIBLE disease!! My symptoms have changed drastically from the onset of my CRPS 5 years ago! They are still looking for the first initial signs...I have gone through all that. They weren't there then and didn't see my feet/legs in the beginning! This disease has gone through so many different changes but I don't see any info out there that addresses CRPS after years of having it. These doc's have our lives in their hands and treat us like it is no big deal if they don't think we have excruiating pain!! We are at the mercy of these STUPID doc's and they are the ones that are suppose to help us!! LIVING IN CHRONIC PAIN IS LIVING...at least if it was cancer we would know an end was coming!! So wish it was mandatory for doc's to stay on top of new data!
How can the government dictate what and how much medicine I need for my pain? Yes, what that doctor is telling you is true. It applies for the USA as well as, Canada. Due to the "Opiod Crisis" both countries have decided to target REAL chronic pain patients rather than come up with a plan to address the illegal drugs being imported such as Fentanyl, or any of the other Opiods, and being abused on the streets. It was easier to target REAL Chronic Pain Patients and their Opiod dosages by Using what was initially drafted by a group of medical professionals in the Pain management capacity (amongst some others) to assist GP's in feeling comfortable yet cautious when prescribing pain meds to their patients. The outcome was explicitly published and identified as "Guidelines" only! As there was concern that the Insurance companies and the government would use the Guidelines as RULES! Anyone who has pain or treats pain properly knows that there is no "one size fits all solution". But as anticipated the governments & insurance companies have adopted them as the RULES.
I have already been warned by my doctor's fill in, that it's coming and I better prepare myself to have my medications severely reduced. When I told her that I have been sustaining on these meds, which it took almost 7 years to get to. She said it was over the max. guidelines and that "it is coming" and that their licenses were on the line. I responded in many more words than this but it comes down to ....MY LIFE is on the line!!!! I have already tried Ketamine infusions and that did not work for me, I was turned down for the SCS surgery and that is the extent of what is being offered in Canada at this time. So drugs are the only option. You should not be able to mess with them unless you have been given a proven alternative first!
The problem is that the governments are not distinguishing between Opiod ABUSE and street drugs for the most part (most of the drugs are not prescribed) and the Opiod USE and life line for the chronic pain patient.
Chronic pain patients being yanked off of pain meds will either commit suicide intentionally due to fact that you just cannot LIVE with the pain!! Those that chose that route are often just lumped in with ALL of those druggies that abuse those drugs. Some indeed will end up using those drugs available on the street if you are giving them no choice (given the choice between pain = life & death=no more pain ). Given that especially in the situation of CRPS patients the pain is a 48 out of 50 on the MCGILL Pain Score. All pain is indeed NOT the same! Even in chronic pain. Every person does not feel the same pain, but it all hurts!
The USA's "RULES" can be found under "The CDC's Guideline on Opiod Prescribing in pain patients". You should also look at the Nov. 1, 2017 "The President's Commission on Combating Drug Addiction and the Opiod Crisis." The list of "Authors" is pretty interesting/confusing, considering the topic. I hope this helps Kelly W.
Hey Suzanne! Hell yeah, I hear ya! You got hit the nail on the head. Since I have been dumped on by my doc and going through all this pain, I try and distract myself from the pain by going to different pain sites to spread the word that we SHOULD NOT BE GOING THROUGH THIS HORRIBLE ABUSE! I found a petition to Congress that needs to be SHARED to all the CPP's or ppl that are being effected by this BS! I will link it... www.petition2congress.com/ctas/first-do-no-harm-dea-targets-physicians-who-treat-their-patients
We have to stand together to get our pain heard. There are 100 million CPP's (chronic pain patients) and if we could reach even half of them and bombard Congress and all the other idiots, we could get some change started! I am losing my life and mind like so many others. If we as CPP's don't speak up they will keep pushing us aside as pain refugee's. All the sites, blogs and stories are all the same...people are at their ends with no where to turn and DAMMIT this has to STOP. It is like we are living in a third world country, not the USA. I did read that article about what the UN had to say about how we are being treated...unbelievable! They can recognize this but our own government wants to try and make people believe the so called "opioid crisis" stems from prescription pain medications! WRONG... illicit fentanyl and heroin are to blame. I also read how the stats they try and put out are so far from the truth. When someone dies from an overdose, the way they have it classified, makes it come under "opiates" as the cause regardless if it was illicit fentanyl, heroin etc or a combination. So it is all being thrown in one basket and being put out there as if all the OD's were prescription opiates! That freaking Kolodny needs to be kicked the hell out...these people that are sitting in chairs thinking up this BS have no clue what it is like to live in chronic pain 24/7, 365... NO CLUE AT ALL! Kolodny just tweeted from USA Today that more than a million of people will die because of the opioid epidemic!! What the hell is he spouting now...MORE LIES! We have got to come together, in this day and age of social media we can reach so many people. There is another site I came across that on the 1st of every month an automatic message is sent out to all of the idiots! I need to find it and send it to ya too. I would love to be a fly on the wall to see their faces when thousands (hopefully more) of letters are sent all at one time! Maybe they will start to get the message! The petition link has approx 34,000 messages already sent, we need to UP that number!! Share, share, share...to everyone you know. Great to talk to ya! If you hear of any other petitions etc let me know! We have got to put an end to this! Take care, Ttys "light" hugs from Texas!
painadvocacycoalition.com/project-type/resist-bot/
I've had CRPS for 9 years. It's a lonely place that no one including those closest to me truly believes or can begin to understand.
20 years and my family and friends cannot understand either sorry ✌️❤️
@@melisa1439 same for me, I say it hurts like hell and my family says, "well I hurt but I still push through it". Like at this point the only think I want to push through is the next flare up
I'm in the same boat I get a lot of glares from my family who can't understand my limitations
@@cjsmith i ve it in both forearms. It s unbearable. I don t know how to cure this hell, but i put frozen scratches on them. Reduces severly swollewing, , unberable pain, severe heat, an redness. Please try that. You can buy these scratches in pharmacists. Wainting, put if you can put your hand under the coldest temperature water( shower) you can. It unsensibilizes the nerves and pain avoiding the feedback in the brain. Of you want, keep me in touch.
@@nobody-rr5ln what does this feel like?
Thank you so much for getting the criteria and awareness of CRPS/RSD out to other physicians. Much appreciated.
You're welcome!
I have Suprascapular nerve impingements in my shoulders not due to cysts. My muscles in my dominant arm is or almost 100% atrophied, it’s about 85% in my other. It took me 21 yrs to get diagnosed & I’ve spent another 3 seeing an additional top 13 surgeons including the Mayo Clinic all for which none could help me. Turns out I need nerve impingement surgeries & muscle transplants & nerve transplants. There is only 2 surgeons in the world that have ever done nerve transplants before. I now have RSD in my arms & it’s spreading to my leg. I am only 38 I don’t know how I am gonna live in this much pain for the rest of my life! 😢😢😢
Great video! I am going on 5 years with CRPS and the journey has been hell. My pain doctor that I had been with for years, just retired and the new doctor is absolutely the worst at CRPS diagnosis! I was diagnosed years ago and she quickly told me she didn't think I had CRPS!! I am in a different stage of the disease now...it started out with the EXTREME pain, redness and swelling but has changed throughout the years. They seem to be looking for the beginning signs of CRPS. My swelling has decreased but the pain has got worse and I have EXTREME bone pain. It started in my left ankle/foot and a year later it jumped to my right ankle/foot as well. It has graduated to more of a cold stage now ( I do still experience HOT episodes as well) after these 5 years. My left ankle and four little toes are froze up due to the CRPS. I am a very educated patient about my disease and the new doctor didn't know anything about CRPS. She probably went and looked up a few symptoms before she came in to see me. To top it off she didn't want to see any pictures that showed my horrible legs throughout these past 5 years! I have documented pictures of how this disease has changed through the years and she just scoffed at me!! I finally got a different doctor and he is pulling the same thing...he is not continuing my medication that I have been on all these years. I finally found a good medium of medication to keep me at a functioning level but now I have been stopped from them and have been suffering horribly!! He is making me go get updated MRI's and a BONE SCAN before he will even think about prescribing me a narcotic pain medicine. All my tests and MRI's were 3.5 years old and he says they are too old!! Of course my insurance is fitting the bill for all these new test. It seems to be all about the money these days. I have other issues as well as CRPS...5 bulging discs, osteo arthritis, DDD, knee problems, Vit D deficient and severe nerve damage in both legs. Like these new tests are going to show my back has got better over the years!! It is awful to live with extreme chronic pain 24/7 - 365 and the doctors don't seem to care?! He even told me that he could only prescribe me so much medicine anyway because of the government!! How can the government dictate what and how much medicine I need for my pain?! It is ridiculous that we are put in a certain class that restricts our care!! All I know is I am suffering till I can get these test done and then hope he might try to help me! There is NO guarantee I will be helped either way!! Pain doctors should be required to go back and get all updated info on chronic pain diseases!! People are suffering needlessly and our lives are in their hands...we are backed into a corner! They don't have to live our lives, it's no big deal if they just brush us aside...it doesn't effect them! They aren't the ones confined to their home in constant pain, I bet if it was their mom, dad or family it would be different. Sad to say but so true. These pain doctors should know more about CRPS but they get mad if (us) CRPS patients try to tell them what we are experiencing...how can anything be learned if patients don't get to tell what we are going through and be BELIEVED?! I wish I could see this doctor but I am in Texas. I need help...
Kelly W. So sorry. I have it too, fell down stairs broke big toe damaged ankle 6/18/2017. Severe severe pain ongoing, X-ray, MRI’s, my dr of 19 years on November 6, 2017 diagnosed RSD, I moved from California to Georgia 11/2017. All I do is try to manage pain, trying to find new doctor has been daunting. I have swelling, temperature change, skin color change, sweating,, goes now into other ankle, that has 3 bones of Arthritis, plus when fell down stairs happened injured lower spine sciatica nerve, mri showed bulging discs, cervical fusion surgery in 1993 now all cervical degenerative... pinched nerves in elbows with carpal tunnel both wrists, fingers numb must shake out constantly. I have been researching everything I can on this diseases....most informative Dr Chropra, Medical dr teaches in Rhode Island, grad of Harvard. Bottom line .... pain will wane up and down, I do epsom salt soaks, pain ointment, low dose opioid...if you use high dose opiate....glial cells will emit more chemicals toinflame your nerves which will drive pain up real fast after opiates wears off...I found this out,my dr warned me but I did not get what she meant until I found out by trial and era. I use very small amt opiate 15 mg or a 325-5 , I try IBPROPhen but this tears my stomach up.
So sorry, I I understand your frustration and anger... I am in shock too, this disease is very very scary...the pain just takes over.
Hey Sandra! WOW, so sorry to hear about your CRPS and all your other problems. Yes, you do know what chronic pain is...it's the devil! It makes life so hard to live. Not only the pain but the strange changing symptoms can make you feel like a crazy person. I feel for you and all of the chronic pain patients trying to live with this horrible disease. Hang in there and if you ever need to vent or rant (Lol) just shoot me a message. It's nice to know that we are not alone in this and other's understand what we are going through. Take care of yourself...Ttys! Light Hugs ; )
Hey Sandra! Just wanted to give you a link to a petition to Congress. Sign it and Share, share, share with all the social media you can. We have got to come together to make them hear us. Hope your doing okay, I have been flaring the past couple of days and don't know if there is an end in sight. UURRGG! Take care and Ttys... "light" Hugs from Texas!
www.petition2congress.com/ctas/first-do-no-harm-dea-targets-physicians-who-treat-their-patients
painadvocacycoalition.com/project-type/resist-bot/
Hi Dana, you hit the nail on the head! I'm so sorry you are going through the same devastation with your doctor's too. This seems to be a very common story from chronic pain patients everywhere! It's so barbaric and inhumane for doctor's to have this mentality. I really just don't understand how they can let people suffer unbearable pain when they take an oath for this very thing. I am going to try and get a different doctor because I can't go on with only "3" tramadol a day. My left ankle and legs have been in overtime since yesterday...it has been a long day and probably another long night. Omg, if they could just feel what we feel every minute of every day, I think it might be a different outcome! We all know what stress does to CRPS too, so all this is creating even more amplified pain! My left leg and ankle have been worse than ever tonight...Ugh, this is no way to live. I hope and pray we can get our voices heard to get change SOON! I don't know if you saw the link for a petition to congress about this abuse of chronic pain patients. Please read and sign... SHARE it with everyone and all social media you can. We have got to pull together, there are over 100 million of us being treated this way! I will keep you in my prayers Dana. if you ever need to talk or vent just let me know. Nice to know we aren't alone in this. Take care and hope you have a "lesser" pain night. Hugs from Texas!!
www.petition2congress.com/ctas/chronic-pain-patients-petition-reinstatement-rights
32 years living through RSD and thank God people are still trying to help. Prayers work too. Try to sell Eskimo s snow is usual treatment.
I developed this disorder in 2014 after suffering nerve damage during shoulder surgery and since it has been endless suffering on a scale that is hard to describe and even harder for people to comprehend. I have seen numerous doctors that have little to no knowledge about this disorder and have no idea how to treat it. I have undergone every single procedure from nerve blocks to a spinal stimulation device none of which had any positive effects, I have tried over a dozen medications with no effects and I am relegated to pain meds that doctors refuse to prescribe in any meaningful dosage. I understand why they call this the suicide disorder because the constant pain leaves you with few options and you find yourself often thinking about ending your life to end the suffering.
I understand that since I suffered similarly after a fractured knee due to bone tumour and subsequent surgeries. The pain was indescribable and seemingly never-ending. I agree that he pain feels incompatible with life although I hung on for the sake of family.
I was diagnosed with CRPS 2 months ago after 7 yrs of suffering immeasurably 😫 I had 2 shoulder surgeries in 2018. I had and accident 7-31-17 w left shoulder, ripped rotator cuff & bicep 💪 muscle off the bone. I had all ready been on Disability for my Rt shoulder since 2012. So this was the LAST THING I NEEDED ! Insurance made me go to REHAB 😳 5 mo before I could have an MRI !! That is a horrible mistake !! First surgery was to try to repair, also was in 24/7 excruciating pain. That surgery failed, shoulder coming out of socket. 2nd surgery was a RTSR Reverse total shoulder replacement 😫 OMG the PAIN !! I was NEVER given sufficient pain meds. I had no idea of the 2016 CDC GUIDELINES on Opioids at that time. I’ve been fighting all these yrs for PAIN RELIEF & have basically lost my life to under & untreated pain. I just got a Unicorn 🦄 Doctor, that’s a Doctor who actually listens & does not dismiss or gaslight. He’s actually a huge advocate for Pain Patients. He’s in the movie 🎥 “ Pain Warriors” it’s on TH-cam. Dr Mark Ibsen, a true Angel of Mercy. I’ve had him 2 mo now, he’s trying to save what’s left of my life, I was definitely ready to end my life. No Doctors in Ohio would help me, they are all terrified of the DEA. How are you getting along ? Did you ever get your pain treated ?? If so what has helped you ? I’m on 30mg Oxycodone and injectable Hydromorphone !! And I’m freaked out I’m still in pain !!
I remember that i couldn't have anyone touch me lightly on any part of my body as it made the pain in my leg all the more severe. I screamed for weeks despite opioids.
I have CRPS and I would not wish this on my worst enemy.
I got this when I broke my wrist.had incredible pain.lots of sweating.
excellent professor thanks
fantastic very informative
I remember none of my doctors could tell what it was for months... luckily enough a surgeon recognized the swelling, the change in color and th terrible pain I was in! If only there was more awareness in the US... I will probably have to consider going overseas to get my life back on track since I have heard good things about a treatment in Italy..
There are Ketamine clinics in the US. You can look them up. Some Universities have clinics.
Thank you, doctor.
1)Could you help me with finding a specialists locally?Colorado.
I keep calling, and neurology drs don't want to see me with this diagnosis.
PT offices first react as they never heard about CRPS, then check with their PTs and tell me that ANY of them would be able t help.
Which is not true, I know.
2)What do you know/think about treatment which is well established in Italy-IV infusions with neridronate?
Thanks
email us and we'll send you our referral list & support group info for CO at info@rsds.org
Hello, I just moved away from Colorado Springs. I saw the absolutely amazing PA Jamie Case at the Peak Physical Medicine in Colorado Springs if that is anywhere near you. She was the one who diagnosed me and is so amazing. I was heartbroken to have to move back home so my parents can care for me because I didn’t want to leave her.
Can you provide any insight on treatment? I just got the preliminary diagnosis from my Dr. and on my way for confirmation from a neurologist, you can private message me if you like.
Thank you
Hi, is having wrist tremors a sign of CRPS?
tremors or spasms definitely can be related to CRPS
@@RSDSA but couldn't tremors and spasms be related to something else other then CRPS or is this a indication of CRPS? Are there tests that can confirm CRPS just the way an X-Ray can confirm a broken bone?
Does this affect muscles too?
He mentioned it in the video a couple of times.
Yes, it can cause muscle atrophy and bone loss (unfortunately I got both)
Sound light as well
Michael Stanton Hicks said it's an 8 point diagnosis. He said i showed 7 of 8
Does this cause takacardia? High blood pressure? Please advise.
Brad, not sure if you will see this since you posted so long ago, but the blanket answer YES. My autonomic nervous system became involved after my peripheral. It began with “libel” blood pressure switching from very high to very low. Year 10 I developed tachycardia and now take a beta blocker which really helped calm my blood pressure. I’m also on 3600mg of gabapentin daily, Amitripyline, LDN therapy & Valium for muscle spasm. I’m getting a new 12yr battery life Boston Scientific SCS implant. This will be my 3rd one. SCS gave me the best pain relief. Opioids did nothing for me at all, so I don’t take anything of that nature. I still suffer from bone pain, neuropathy (breeze, fan or colder temperatures) immediately cause severe burning pain. I would recommend a trial week for a Spinal Cord Stimulator. Best of luck Brad!
I know this comment was made years ago but I also wanted to say yes (in case anyone else sees this eventually), I had autonomic dysregulation in the acute phase. I was in and out of the ER with tachycardia, "high blood pressure without diagnosed hypertension," my bloodwork was on a rollercoaster, had an elevated d-dimer with symptoms of embolism but no embolism present, weeks long daily cyclic fevers, etc. My hands swell and become mottled even though the CRPS originated in my ankle. I was on high doses of steroids for months when they didn't know what was wrong and it was the only way to keep me out of the ER. Some of the systemic symptoms decreased or went away once I was out of the acute onset stage and going into late stage, and other ones improved once I started CRPS treatment. I still have systemic issues but not nearly as severely now that I've had a lot of treatment.
This doc told me he was just a "lab rat" and really didn't work with patients with CPRS/RSD, over ten years ago; was demeaning in my opinion and would have saved my life post double hit motor vehicle accident! It's one of the biggest horrors of my life.....please...go to Dr. Philip Getson in N.J. who loves himself as a professional man; who lives his patients and seriously takes his life's work so dedicatedly! I am now in a wheel chair and was a dedicated med pro myself. God bless you all. Please pay attention to what people do not what their mouth bigs up about themselves😵
I was said I might have CRPS by my doctor. It resulted from an injury I had on my foot. I don't have constant pain. But when I try to walk, I can feel blood rush in my foot and it changes in color. Is this blood pooling a common symptom in CRPS patients?
I can say for me (diagnosed after foot surgery) The blood pooling is so intense it feels as though my incisions will burst open from the pressure alone, I've also started to have blood blisters surrounding every incision site. The visual changes are very noticeable in a short amount of time, mottled (many different colors, processing more purple the longer I sit or stand), it eventually fills to my knee.
@@elliehart988 Pretty much happening the same with me. It's all purplish and gives bad Raynaud's syndrome. Thank you for your response. That helps! Do you see any pressure misinterpretation happening, when you try to walk on your foot. It's like, the tissue under my foot bulges when I walk, and it doesn't become normal after that. The tissue became harder and deformation looks like it's permanent.
Thank you for your video I had a fall on my right hand wrist six months ago I live in British Columbia Canada and although my physiotherapist thinks I have it my GP and two orthopaedic surgeons do not but at the same time they don't have any other diagnoses.They wont even give me a referral to a CRPS pain clinic. How can I push the system so I can actually get in to see his CRPS specialist since this might be my issue?
Greg Scalamogna hi I'm in bc, crps too. 12 years before I got a diagnosis, luckily my podiatrist recognized the symptoms, my gp is not very helpful beyond offering prescriptions. all I have done for treatment is lidocaine infusions, they help with the neuropathic pain, for a few months usually. in the initial stages of crps, Gabapentin and high doses of vitamin c are helpful. good luck!
Hi Greg, I really feel for you! It took me about a year and multiple doc's to finally get my diagnosis. I am in Texas and I am finding that all these "pain mgnt" doc's who are really just anesthesiologist don't know NOTHING about the disease. Since the rescheduling of some narcotic pain meds, they made it to where our regular PCP's can't prescribe them anymore and we HAVE to go see a "pain mgnt" doc!! I am still going through the difficult task of finding a new pain doc since my wonderful doc just retired! It has been hell... I have had CRPS for 5 years and now I have a doc that isn't sure I have it??!! OMG...really?! So, I am having to prove my disease to this idiot... I understand frustration! Even though the State of Texas confirmed my CRPS these idiot's feel the need to take matters into a whole new spectrum!! GEEZ, I was sent to the pain doc to manage my pain not to be diagnosed!! Ridiculous!! I see it looks like you have made it to the 1 year mark with CRPS... did you finally get a diagnosis? All, I can tell you from my experience is try to keep the affected limb moving as much as possible. I didn't get dx in enough time so my left ankle and 4 little toes are froze up without movement now. It did jump to my right ankle/foot as well about a year later but I knew more then from my experience on my left foot. I know your comment was 5 months ago so I pray you got some help...don't give up if you haven't yet!! We need to keep getting the CRPS awareness out there!! Good luck and take care! Kelly from Texas!!
Hi! From ontario just had a spinal fusion and decompression for central spinal stenosis L4to5 spondylolisthesis and herniated disc at L4to5 i am 62. In June16,2018. In ottawa, ontario. My pain got really bad after i took my 3 month brace off. Now my motor nerves are effected where i can't even lift my legs an inch without severe nerve sensory and moter pain. My mobility is poor and just got a wheelchair because my legs give out and have fallen many times. I am also on the patch for many years and the pain is still coming through even with an increase after surgery. Is there a chronic pain dr. At the ottawa hospital? I am not able to travel at this time
Sorry 2017 i had the fusion etc with a history of lumbar plexopathy from a 1988 surgery to remove left ovary, apendix and removal of severe pelvic adhesions from many pelvic surgeries .
4 years without a diagnosis. 32 years as of 9-2023.
Have any one tried HBOT? treatment for CRPS
S U N I E L S H E T T Y please explain HBOT?
What is that? I have CRPS iny face.....UGH
Has anyone heard of it starting in an internal organ
Not generally but there has been documentation that it may spread to the internal organs: rsds.org/wp-content/uploads/2015/02/Systemic-Complications-of-CRPS.pdf
Not usually but may spread there: rsds.org/wp-content/uploads/2015/02/Systemic-Complications-of-CRPS.pdf
I remember about 10 years ago there was a young man who had surgery,he had this problem after it was done.they said it is RSD.
Mine got into my heart and lungs during the acute onset because mine immediately became systemic and I had autonomic dysregulation. I ended up with pleural and pericardial effusions and a thickening of my ventricle wall in addition to pain, tachycardia, high blood pressure, and breathing issues. My bloodwork was on a rollercoaster, different every time it was run. I even ended up making antibodies against my own blood vessels (C-ANCA). I was diagnosed with both CRPS and Central Sensitization at the same time so the CS might be what caused the spread to my whole body instantly. Most people don't get it systemically and so widespread though, I won the unlucky lottery. I was on high doses of steroids for months until I started moving into late stage CRPS but then the organ and systemic issues started lessening but the atrophy, bone loss, and paralysis worsened. Then I finally got diagnosed and started treatment and am doing better than I was. I still have "unspecified small blood vessel changes" and "hyper reactive blood vessels" all over but no more tachycardia or breathing issues.
I HATE the new name!! I have RSD & I feel like the “NEW” name... sucks! It diminishes our condition! 😔😢😢😢
So many different names all these years.
4/4 😢
Dear Doctor, I don't think your patient has CRPS. If he did, you wouldn't be able to touch him the way you are that person. Love Kim
@Mildred Hare, I’ve had RSD since early this year. Prior to my Sympathetic nerve block injections in the late summer of this year, I could not have anything even lightly touch my skin just as seen in this video, it was soooo painful to shower and put on clothes. After 3 injections, (although the the pain came back full force now minus the extreme skin sensitivity) the light touch with light water, clothing or just anything light doesn’t increase the intensity of the pain like it used to. However, hard touch like for some people around me just like slapping me when they say Hi 🤦🏾♀️ (there used to doing this to me prior to me having RSD), or grabbing or pressing/leaning increases the intensity of the pain not only in that spot that is touched but it shoots of pain in other areas.
Omg the pin prick I’d punch my doctor if he dared!!! Or the patient was on pain meds when I’m on pain meds my pain is way better
Honestly you don't know what you're talking about. People outwardly show pain in different ways. No two CRPS patients are the same. Mine was severe including atrophy, bone loss, spread, etc. I was mostly wheelchair bound and also starting to lose use of my hands/arms. It was in my heart, lungs, eyes, ears, everything. Doctors were able to touch my leg where it originated, push and pull to assess its strength, etc. But then I couldn't walk on it because it was too painful and a pin prick had me recoiling in pain on the bad leg but not the good one. I was crying and yelling during the EMG on my bad leg but the good part of my body tested just felt weird. I had every Budapest criteria. Don't expect every CRPS patient to be a stereotype of whatever assumption you have made. Some CRPS patients can be touched gently without outwardly screaming.