Mayo Clinic Connect
Does anyone have RSD/CRPS? Do you know if there’s a current research study for this at the Mayo Clinic?
What do these letters stand for?
Reflex sympathetic distrophy I don’t know but I am calling Monday to get in none of my drs where I live know anything about rsd but they did diagnosis me
I was diagnosed with RED/CRPS in the fall of 2012. Within a year I was wheelchair bound as it became excruciatingly painful to be weight baring at all. Then my blood pressure started flipping all over the place, in the space of an hour it can go from 90/60 to 225/115. Now it has spread to my right arm-so apparently I will be one of the cases that is going full body. My question is this … Why is no research being done? Why are we being left to basically a situation of ‘let’s try this, no-let’s try that’. The treatment of patients suffering with RSD/CRPS is archaic.
My daughter was diagnosed with RSD/CRPS 8 years ago after she was in an accident. It still took them over a year and many many doctors to tell her what was wrong. Since then she has been in a walking boot and uses a cane. She has had a spinal stimulator put in that had to be done because the anchors in the back came loose. After they came loose the second time she had a neurosurgeon surgically implant the leads in her spine. He butchered her. Left her with three 4-5 inch incisions that should have been no more that 2 inches. Did not remove all of the old leads because it was too much work. She developed an infection right away. After having this last implant she was not getting the relief she should have been getting. Doctor said they did not need another MRI. Her pain doctor ordered it and found that the machine was not placed where it was directed to place the pain specialist. After having this last machine for 5 months her legs were cramping she had to go to the ER and they admitted her to figure out how to get the cramping to stop. Needless to say the machine can not be turned on. She has been trying to get another doctor to remove the machine and put it in the correct spot. NO ONE WILL SEE HER. Her pain doctor told her that she can not go back to the doctor that did the original surgery. What he wants to do is go in from the top and her pain doctor said that it could paralyze her. I have seen people in pain but never the amount of pain that she is going through. Now our state is telling her that they are going to take her pain meds away and she will have to survive on almost nothing. I can not stand back and watch a 35 year old woman be a victim. She deserves better. She was a nurse and can not practice but still has to pay on her loans that were private. We have contacted Mayo hoping that they will be able to help. There must be someone out there. She is at the point that she does not want to continue living.
Welcome to Connect @cmp4001. It must be heart wrenching to see your daughter in such pain and to endure such treatment. There are a number of discussions here on Connect that you may wish to read and members to connect with.
See this conversation https://connect.mayoclinic.org/discussion/after-knee-replacement-i-developed-rsd-i-have-had-severe-pain-in/
Also see the discussions in the Chronic Pain group https://connect.mayoclinic.org/group/pain/ where you’ll meet several members with similar stories about pain meds.
For the moment, I’d like to introduce you to @overwhelmed @janetpr @rowan @ursus who have written about their experiences with RSD/CRPS.
My daughter is 40, and suffers from CRPS – complex regional pain syndrome. Took her a long time with many doctors from internists, neurologists, Gastroenterologists, etc – many who thought it was all in her head – but was finally diagnosed with CRPS. it is progressively getting worse and she lives in constant pain. I see where there are finally clinical trials going on around the country for an answer but they are only looking for those in the early stages… not advanced. And yes the only meds available are the opiods and that is becoming harder for those who suffer. It is tragic so many people will be overlooked because of this tragic abuse of meds in our country BUT everyone has different pain thresholds and all are not additive type persons… hopefully more will be done – and thank you for this forum – I am new to it but just maybe Mayo and/or our sharing will bring more information…..
Liked by Colleen Young, Connect Director
I am 49 years old and have suffered with CRPS now for almost nine years now and unfortunately your daughters experience is very much
the way it goes for most of those that suffer from CRPS. There has been very little advancement in treatment for CRPS, especially considering
that it has been in existence since civil war times. At which time they thought it was all in the patients head. Many doctors still think that, despite the World Health Organization adding to the list of Rare Diseases in 2014. This was a significant win for CRPS patients as this then allowed for more money to be available for research!!
Currently you basically have three main things that you can try (beyond physical therapy, nerve blocks or surgical sympathectomy).
The first use to be the prescribing of opiods and/or narcotics for the pain itself. These often in conjunction with other medications meant to address the neuropathic pain such as Lyrica or Gabapentin.
Second is usually by way of SCSS (Spinal Cord Stimulation Surgery) This surgery places stimulating electrodes through a needle into the spine near the spinal cord, which provides a tingling sensation in the painful area. Electrodes may be placed temporarily for a few days in order to assess whether stimulation is likely to be helpful. Minor surgery is required to implant all the parts of the stimulator, including the battery, and electrodes under the skin. Once implanted, the stimulator can be turned on and off, and adjusted using an external controller.
Finally, the most recent (yet not that) is the use of Ketamin infusions. In which you go to hospital as in or outpatient and receive daily infusions of ketamin.
Both SCSS and ketamin infusions have not proven to be beyond 50% successful. Really SCSS is only a “distraction” not a cure.
As you mentioned with your daughter, in the case of medications which a lot of CRPS patients heavily rely on to help tolerate the excruciating pain just to get
through each day, this is now becoming more and more in jeopardy as the incidence of abuse in the country (including death) continues.
This will and most likely has already, resulted in more deaths in the CRPS community as a result of being denied their medications, which are the only
thing a lot of them have to help keep them from choosing death!
I myself have already been told by several doctors (when I was looking for a new GP) that they would take me off all of my pain medications immediately. This has resulted with me having to stay with a doctor that I am not that comfortable with. This because he knows that ALL of my medications were prescribed by a very knowledgeable pain doctor who happened to retire and left me without any referral.
Finally, my husband’s company changed Insurance Companies and the new company wanted all of my medical records to ensure that I had tried all other
medical treatments available to me beyond the use of the narcotics and opiods. Of course I was able to do that no problem (who the hell who has CRPS has not looked everywhere to find some kind of relief beyond just taking pain meds?? Since my husband passed away last year, I only have one more year of his insurance coverage then I have to prescribe to our government for assistance (since I survive currently only on a meak disability payment) My medications cost more than my disability payment even before taxes!! I am hopeful that it will go the same as with the insurance company, although I know that they expect everyone to be prescribed opiods within a certain recommended range that was established by a community of medical doctors familiar with pain. I know I fall beyond that range! So, I am frankly scared of the day that they no longer provide me with the medications that I have been taking for a number of years. I am also afraid of the day that medications that I take no longer provide enough pain relief, especially since I am at the maximum dosages that are allowed to be prescribed!
So I a can fully empathize with you and your daughter as well as many other CRPS sufferers. I really do not know what is going to happen. As I am sure there are those CRPS sufferers that have already had to take their lives due to being denied their pain meds. Most likely they have just been lumped in with All of the other abusers or pain addicts!!
It is hard enough to try and continue to Want to live with CRPS. I have often found myself trying to justify continuing to live. Frankly, the only reason I am now is because of my dogs. Once they are gone (if I have not yet bust through the threshold of my pain meds before that, which I am not sure that I will be able to make it much longer to get beyond that) I will most likely go to. It really isn’t worth the daily struggle in pain. Before anyone tries to judge, walk a mile in my shoes….ones that are embedded with razor blades and set on fire, while someone shoots darts into your legs and someone drags on your hips trying to drag you down. Then a lion claws at your thigh. Could you keep going with this happening day after day, year after year?
@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.
Dear Overwhelmed and Janetdh – my heart breaks for you two and others that suffer from CRPS – those who can get a doctor to diagnose in early stages may have a better outcome with proper treatment – trying to be diagnosed with CRPS is a long road of process of elimination – along with many doctors today who think its all in the head… it’s like a medical dark-ages for many. keep fighting and searching – there are those out there fighting… did you hear of the short movie /documentary of Trial By Fire – by Charles Mattocks – documents his mother’s struggle – but maybe not but just encourages me that more notice is slowly being given to this horrible disease. My daughter is suffering from severe GERD – her gastro doctor found she has Esophageal Spasms that most likely caused by CRPS and she is taking s special blood pressure medicine that helps stop the muscles from spasms… she is showing some slow improvements with the GERD but not the CRPS – but please keep on fighting – and shouting out as CRPS is being recognized… and you know there are many out there suffering from it….. thank you for your input and insights…. keep strong!
also – she has the TEMS in early stages – but great fear of surgery as that will only aggravate her CRPS – she has a PT that works on her knotted muscles from CRPS that does offer some relief – even if short lived – but never pain free. She has has received some ketamine cocktail type injections from her pain management doctor but not the IV ketamine yet… and to date no sucess… so please those with CRPS keep sharing…..
Liked by Kanaaz Pereira, Connect Moderator
Thanks for your support; my prayers for your daughter. Today I went to the local beach with my sister and with cane in hand, we ventured out into the water. It felt wonderful. Even with increased pain tonight, wouldn’t change a minute of it.
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