Mayo Clinic Connect
Does anyone have RSD/CRPS? Do you know if there’s a current research study for this at the Mayo Clinic?
I am post-op, 17 months- CMC Arthroplasty. I was told that I have RSD. I have the hypersensitivity, on the back of my hand; still swelling; range of motion issues. What I don’t have is the intense pain that everyone says I should have. My primary has told me she isn’t sure if I can be/have a diagnosis of RSD, without the pain. My hand surgeon said that I do have RSD. I’ll admit I have a high pain tolerance, but is there anyone out there that has this diagnosis but not much pain? I have burning sensation on the back of my hand; in the shower, it feels like needles on my hand, but, not the crazy constant pain. Thanks for any replies.
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Hi there @pattiwaggin , You certainly seem to have a lot of the symptoms of CRPS that is for sure, however the I believe the greatest symptom of CRPS is PAIN. I have read plenty on the subject and I have never come across anyone or any literature where pain was not part of CRPS. So to you I would say, count your lucky stars, you are special. However, knowing what I know, I would also say be careful
what you do not wish for……..it may just come true…..and trust me, you will wish you didn`t!! While the symptoms you are experiencing are certainly uncomfortable and annoying to you, when you add the level of pain that CRPS presence itself with, it changes your world like you never thought possible.
In case you are not aware, McGILL Pain Index describes CRPS/ RSD, as the MOST painful form of chronic pain that exists today! That is also why some have given the diagnosis a nickname of “The Suicide Disease”.
Even more so now that both Canada & the U.S. are on a mission to rid themselves of Narcotics & Opiods……Starting with patients!!!!
Doctors are being pressured to lower or take your patients all off of these types of drugs or they are in jeopardy of losing their licenses.. Anyone who really knows CRPS knows that, that is simply not that simple. and you are asking many of these patients to live with the most painful condition there is without providing known existing medications that would lessen it !! Additionally, this is without in many cases providing a substitute equal to that which is being taken away or a cure! Many patients with CRPS would rather die than be left in the kind of pain that CRPS leaves them in.
Doctor’s are afraid of losing their licences, while patients are afraid of losing their lives!!! But who asked them anyway!!!
I believe while the origin of some of the street drugs may have been through patients or some so called doctors, it has come way further
than that now. The majority of the drugs are now shipped into the countries or made in people`s garages. But no one is processing that fact.
The governments are using guidelines established by pain specialists to help regular GPs know how much to prescribe for their patients. However as the specialists were afraid of, the governments are using the guidelines as “law“
Finally, those patients that have been yanked off of their meds & do commit suicide without a note, but despite their families communicating (and sometimes even the patients themselves) telling the doctors what the results of that will be. Their deaths get lumped in with all of the other Opiod overdoses, even though that clearly was not the case. So no one is capturing the real impact that this initiative is having on actual patients needing pain meds ….FOR REAL!
Others are actually driven to the street drugs since they are given no choice when their medications are withdrawn!!
Again, no one is tracking or monitoring this!
I guess we are just another casualty on the War on Drugs!
Liked by bikerchicl
Greetings. While ketamine infusions didn’t work for my CRPS, it did for other patients at the clinic providing them. I now have started meditation & biofeedback with psychiatric pain doctor at Beth Israel pain center and have found that it helps me manage better. I am also getting reike sessions, but it continues to be a journey. I hope the treatments help! Stay strong.
Hi my name is melissa I live in ma I saw u go to bi love that hospital I was wondering if there is any way we could have a private message I would love to talk I don't no anyone in ma that has this horrible disease
@pfox (your daughter) and @overwhelmed, I am also on this journey. Took numerous doctors and many years to be diagnosed with CRPS. Mine is also going into different parts of my body–started with right ankle fracture, then the nerve pain moved to my left leg, up my right leg, into my left and right hands. My glucose levels, which I had controlled since being diagnosed as diabetic in 2008, started making no sense given my diet; my nutritionist is concerned that I have gastroparesis. Am having gastrointestinal issues as well. My right foot and calf feel numb, but also have intense pain. I take a smorgasbord of medications including oxy, gabapentin, cymbalta, etc. Tens didn’t work nor ketamine lozenges or pain patches and from January 2016 to 2017 I participated in ketamine infusions every 4 to 5 weeks, yet my CRPS continued to spread and my pain is getting worse. My pain doctor has recommended that I go to a comprehensive pain center so that all my issues can be examined collectively and have an appointment with a doctor at the pain center at Beth Israel in Boston. My neurologist has said that my condition is only going to worsen over time. I am currently in a battle to ensure that the Board responsible for my disability retirement takes into consideration my CRPS, related pain issues and medications. They wanted to reject all that and only focus on my ankle (which was injured at work), but recently approved in a 7 to 5 vote to have me seen by 3 additional Independent Medical providers including a neurologist. I have already had numerous IMEs, but my hope is that through all this maybe the next person with CRPS that has to get approval will find it an easier path to follow. I am trying to make some meaning of the fact that I this disease and it helps keep me moving forward. CRPS can be a pretty lonely road–have lost friends that felt that I wasn’t “trying hard enough” to heal. That hurts. Keep trying to find the joy that does exist in the world around us.
Hi my name is Melissa and I have CRPS I got diagnosed about two-and-a-half 3 years ago but they believe I've had it since 2007 I live in Mass and I would love to get in touch with you and talk to you I don't know anyone in mass that has this disease and it'd be really nice to talk to somebody that gets the pain and understand stuff private message me if you want I would love to talk to you and I'm so sorry you're dealing with this horrible disease to
Hi @bikerchicl you may have noticed I removed your phone number from your messages. We do not prohibit members from exchanging information, we just ask that you do it via the private message function. If you, or any other member, would like to share the materials you speak of, we would just encourage you to share how to contact each other and your contact information by private message. This is for member protection of private information from spammers and unwanted solicitations from outside sources.
However, I would like to point out that by sharing on the forum, your messages benefit many and we can all learn from each other.
I'm sorry I'm new to the site and how would I private message somebody if you could please let me know that would be great thank you
I have burning sensation in both feet, in the shower, it feels like needles on my left butt which I got from being mishandled on a Jackson table having my second spinal cord stimulator implanted. The surgery didn't hurt any where as near as my left butt! My pain is not constant and it travels a lot. The first procedure my pain management doc did, he gave me something I was allergic to. I called the office. He happened to be on call. He didn't recognize me. I told him I had laryngeal edema as an allergic reaction to something he gave me. He later admitted I scared him because I knew the term laryngeal edema. He decided to give me his personal cell phone number. We text often and here is a response to a complaint of mine. "CRPS can cause just about anything in a limb, swelling and fluctuation is usually one of them – Hallmark symptoms of CRPS." Hope that helps. (The fluctuation he mentioned was in reference to my complaint of the pain moving from top of foot, to knee, to bottom of foot, to thigh)
In reply to @bikerchicl Go to the envelope icon at the top of the Mayo page, click on it and then compose your private message to the person via their Mayo posts name.
Liked by Lisa Lucier, Connect Moderator
Dear @barbbie , when you are speaking of the "fluctuation" or the pain moving from one area of your foot/leg to another is this within minutes, hours or days of each other? In my experience over the last almost 11 years now of having CRPS the pain definitely can fluctuate. It can also continue to expand to other areas of your body. In addition, something that you won't see amongst many of the references to the nerve pain – is the fact what that really means is that, this means ANYWHERE you have nerves in your body, you can experience the pain of CRPS….This means that the pain is not just limited to the legs, feet or arms. For example I often get pain in both of my hips as well as my heart (which I have to tell you, feels like I am having a heart attack when it decides to rear its ugly head there!!! Usually for the next 20 minutes to half hour I suffer and often wonder ….Am I having a real one this time?…..At what point should I decide that the pain has gone on long enough and perhaps I should call an ambulance? I am not sure if I may not make the right call one day….meaning not making the call when perhaps I should have. I guess I may never know, especially if that happens!!!
CRPS sucks in many ways! Anyway, I hope I helped with your question.
Hi my name is Melissa and I have had cprs for about 10 or 11 years and I just got diagnosed to Anne after years ago I have it in my right upper arm it goes through up to my neck into my rib cage and into my back and I'm so scared that it's spreading onto my right side because I'm trying to get a lot of nerve pain but when I was reading your texts about it get chest pains ate my chest pain started about a year ago but over the last 2-3 months I've been feeling my chest pains extremely bad and like you said you're worried it could be a heart attack I feel the same way at some point the pains in my chest are extremely bad I'm having issues with my insurance company right now so I'm trying to find a cardiologist to help but due to my insurance right now it's hard to I'm just really scared there's something wrong with my heart do you know how CRPS affects your heart and what it can do if you do could you please explain it to me I would really appreciate it as I am only 36 years old and I have a 17 year old son so I'm extremely scared about my heart issues thank you so much
Hi Melissa @bikerchicl . I cannot say for certain but I believe that the pains that I am getting are CRPS related, as nothing has happened to me and I have had many attacks. Although I must say they are increasing, in both length & pain. In your case, I would recommend that you do whatever you need to do to in order to find out what the pains you are getting are related to. You need your peace of mind.
In my case I really don't care if I live at this point, so if I have a heart attack & die so be it. My kids are all grown and my husband died almost three years ago now from cancer that we didn't find out about until it was too late. He died six weeks after his diagnosis! He was my caretaker before he got ill. Now I am finding it harder & harder just to perform menial tasks. I tend to fall now several times a week, including a big tumble down the stairs on Easter Weekend which I am still feeling the affects from. Frankly I am surprised that I didn't break anything, although I do think it has increased my overall pain .
I really don't know where to go from here. I need help and cannot afford to pay and the government does not provide any assistance to direct me to someone who can. I am lost and I don't think that it is even worth the effort any more. I have done the ketamine infusions, turned down for SCS surgery and am on the verge of them taking away some of my meds due to the Opiod Crisis of course!!!! I could go on and on. Honestly, the bottom line is .. my kids didn't want to help look after me so one moved to a whole other province and the other moved out without ever calling, texting or seeing me ever since! I have no purpose, my life has no meaning anymore and I have no quality of life at this point… I have been putting off going grocery shopping for three days now because I just cannot seem to push my body any more to do this task, which is often the most arduous of them all. I need to go my pain in my hands and arms is increasing due to the typing and my legs are getting worse now as well. .
Melissa, Although, it is encouraged that people discuss via the forum as that really is the way folks can share and learn from each other. I do understand that sometimes there may be things that you are not comfortable in communicating to a group of strangers (although that is often the reason people feel so free to share). I will send you a private message Melissa so you can discuss anything that you do not feel comfortable discussing with the group as a whole. Regards
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