14 years and my Dr leaves? Panicked
 

I have had RSD since 2000 after a 2nd surgery on my knee after a injury. I am very very limited in walking, pain gets unbearable and also will get cold, so cold it burns if that makes since. I have perm total disability thru wc, and medicare. It is so very discouraging to live this way!!!I have had a pain management Dr since 2002, and am on narcotics. I am given a 3 mo subscription at a time. When I went 2 weeks ago, a different Dr was there, he told me this was my last visit and I would be getting a call from occupational therapy because mine was a workers comp case and they are no longer doing long term..ugh...I am in a panic. Disabled LPN, injury was 2000, have 6 children 5 living, 10 grandchildren and 1 on the way. I am a 13 yr colorectal cancer survivor and almost 8 yr breast cancer survivor.

Introduction
 

Hi, my name is Grey. I've had RSD/CRPS for 20 years now. I'm in my 40s. I've been pretty happy the last seven years or so, ever since the doctors found a medication combo that worked for me. I made a post explaining my situation, and the therapies I have tried. It said it had to be approved before it would show up.

I live in Ohio, I have one daughter who is the most beautiful, smart and wonderful human being I have ever met. She will graduate college next year. I have a cat who I love dearly, and who makes me smile and makes me happy every single day. I enjoy painting, knitting, jewelry making, books, current events and movies. I work part time from the comfort of my own home, and I also volunteer for two non-profit organizations. I live a relatively normal and happy life. I am able to do this because of my medication regimen, physical therapy, exercise, swimming, hot tub and sauna. Until recently I felt very blessed, especially since I have this disease and I know it can cause far worse pain than I have felt in recent years.

My current doctor is retiring, and I've had such a difficult time finding someone new. The stress of it is literally making me sick. Searching for medical treatment is more upsetting than the disease itself. I'm frustrated, angry, scared and feeling used and abused by the medical community. I am a human being that is sick, and does well with medications. I am through with being a pincushion. I don't want to have things implanted in me. I don't want to be involved in a medical study. I want to live my life in peace the way I have been for the last seven years. I am not just a hunk of meat that walks into a medical office, there to have procedures performed on me for the amusement doctors, and to make their bank balance grow. I am a person that deserves medical treatment that works for me, and to have the lest invasive treatment possible.

I feel like no one understands me, and that no one cares. I didn't feel this way until recently, when my doctor told me that he's retiring. I can't go back to the pain I felt before. It's not right. I shouldn't have to suffer when there is safe, effective, legal and minimally invasive treatment that works for me.

Epileptic with CRPS/RSD
 

Hi everyone, approx two year ago, i went to my doc regarding possible broken feet and or injured back. I did have a fractured back due to a grand mal seizure but doc said that my foot pain was not related to the fracture.

Little history, in 2003 i sustained my first known seizure while returning home from the night shift at the police department. Sat on edge of bed and began to seize. Naturally i refused treatment in fear of having to quit. Long story short, ended up fully disabled in 2008 or 2009, can not remember which.

Since then, i have had a nuclear two phase bone scan that confirmed docs diagnosis of rsd in both feet.

I have had 13 shoulder surgeries, 6 on the left and 7 on the right. Had a total shoulder replacement in june, suffered a seizure post surgery due to the hospital pharmacist. Within a month, artificial joint was totally dislocated and had to have the same procedure done again.

During the recovery time, of which i am still recovering from surgery, my rsd has flared up twice, 2nd time, being t o d a y.

God bless all and wish you well.. P.s. If u have not gone to physical therapy for rsd, i strongly suggest you g o..

Hammer

Hello everyone I am new to this forum and still kinda new with crps. My name is Casey and I'm 32 DX a year ago. I was at work and got injured helping a patient he grabbed my thumb and bent it backwards and it popped on Dec 27,2013. It instantly started to swell and was painful I went to ER were they told me it was a wrist and thumb sprain be better in a couple of weeks with splint. Yeah right!! The pain continued to get worse everyday to the point if I took splint off I would cry in pain. I was finally after 3 months sent in for an MRI that showed nothing except fluid around thumb. I was referred to an ortho hand surgeon that tried injections to release the trigger thumb with no success. Finally in May 2014 I had my first surgery on wrist and thumb started OT and was feeling a little better for about 6 weeks until the thumb locked up again the swelling came back the pain and burning were intense and I was back to having no use of my left hand ( I am lefty) I went in for another surgery in Oct 2014 for the trigger thumb again and I had so much scar tissue built up it had entrapped my nerves and tendons. After surgery I once again started OT this time it was different I couldn't feel anything except pain I could have probably set my hand on a hot burner and wouldn't have known. The swelling never went away my hand would get so hot it felt like it was on fire then it would turn blue and be like ice on the bones. I was finally DX with crps sweating hand intense pain mottled shiny swollen no ROM. Working in the medical field I knew what this was and was not happy even yelled at my doctor and told him he was wrong so he sent me to a neurology doctor and he also verified what my doctor was saying. I am on workers comp so it was hard to get treatment I needed so I was sent to a independent medical examination to see what he thought he agreed with the other doctors so in July 2015 I finally I was able to start getting nerve blocks I was going once a week for 3 weeks and then they stopped idk why no one can tell me anything. I was in intense therapy to try and get me back to work in Aug I left there one day came home was in pain I didn't think much about it because I always hurt after therapy. I remember sitting on the couch watching TV and my hand just started shaking and twitching. I applied heat thinking my muscles are probably just wore out no big deal. The next day I was in the hospital screaming in pain if could put a number on it I would say 10+. The doctors did everything to stop the arm from twitching with no success. I was sent home with idk what to do for u news. I finally was seen by my doctor and was able to get more nerve blocks approved but it was too late my hand had contracted the wrist turned in and the fingers frozen shut. I have been this way since anytime I try to lift my arm it gets touched or the wind blows it tremors and the muscles contract tighter, and it has spread up to the elbow. I have no clue which way to go now but I am still hopeful there is something I can do to help with the pain and spread. This has turned my whole life upside down but I have crps crps does not have me. I am now looking into a SCS to see if this can help me. I will not give up on finding something to help. I will fight until the end! Sorry so long but thank you for all the support :)

Sent from my XT1254 using Tapatalk

New only to this board but NOT to RSD
 

20 long years later and I am here, still with RSD, still in pain, still with inner organ issues. And all thru these 20 years, I can proudly say, i am STILL ME.
It has taken me to the worst places imaginable. I have recently gone thru confirmed serotinin Toxicity. I was being poisoned by the very meds i needed to survive. They were the only things keeping me sane. Now i have had to stop one and cut in half 2 others.
I DONT mean i rely on meds for all my help. I do meditation, imagery, music therapy, have found something i CAN exercise with, hot soaks in epsom salt baths, distraction therapy, I take viatmins and minerals and discovered COQ10 for my brain and lovin it. I use the circulation booster, heat, genuine massages developed for MY rsd type. I have my MANY animals that surround themselves around me, I couldn't show my dogs anymore so i go into breeding for quality my chooks and show those, learning and studying genetics was needed and i did that. Love learning medical side of each of my animals. I am active on FB and helping others with depression and suicidal thoughts, I have gotten into finding a hobby i CAN do and that is making Suncatchers, earrings, keyrings, bag charms, angels and now making things to sell for raising money for cancer (all proceeds go to cancer group). I use genuine gemstones and swarvoski crystal beads. If you want i can show u things I have made
I worked when i could ... lost my job so was unemployed until i went into remission and then found a job i COULD do around my rsd..and employers who also then believed in me... then worst part of my rsd journey started
I started falling, I had just bought my own place and I would find I fell in the worst of places, Then my worst fall had me walking to the clothesline and then i was laying on my back with 2 huge dogs licking my face and i could not get up...i YELLED and yelled but no one was within earshot. I was there for other an hour before able to move and get up. My male dog helped me inside and that was my worst concussion. I had to admit I needed some help. Now I have my own babysitter...nah really they are my carer. 5 years after that has seen me now unemployed and with a full time carer, barely able to walk anywhere even room to room is a chore. But i do have my hobby and with new drug to help with the shakes/tremors have taken up drawing again. I can happily hold a pen or pencil again
I am full body, internal organs including brain and full outside, from my soles of feet to the tip of my long hair on head...what i have taken and which therapies i have tried is too long to post in here seeing it already as long as a book but if u want to know or ask then feel free and will put in another post...I am just one of those 0.01% that my rsd outsmarts everything either at the start or learns to outsmart over time

Barefoot too long!
 

I'm new to the forum. Hoping to learn from your experiences and share what I've discovered about CRPS.

I'm a clinical psychologist by training and used to do research. Thankful for this as it has given me a bit more credibility with medical personnel as I seek treatment and relief.

I sprained my ankle about 6 years ago, but it was not treated properly. I fell again in January 2015, and broke my ankle, tore two tendons, damaged my calf muscle and developed a Morton's neuroma by my toes. I had surgery to repair all this in March 2015 and was healing well. Four weeks post-surgery I began having hideous nerve spasms in my foot, and was eventually diagnosed with CRPS. I've tried a number of things to relieve pain and try to get back into a shoe:
- physical therapy that included desensitization, electro-stimulation, massage, and range of motion exercises. I had to quite because the pain was so horrible the night and day after sessions.
- Accupuncture, Accupuncture with electro-stim, and dry needling. These therapies were dreadful and exacerbated the pain and swelling in my foot.
- Medications: gabapentin and Lyrica were tried for the nerve spasms. Gabapentin didn't do much for me. I felt a little relief with Lyrica, but gained weight and felt like sitting and drooling all day. I couldn't think! I take cyclobenzaprine when the nerve spasms trigger muscle spasms in my calf. I am currently managing pain with either Vicodin or Ibuprofin. Neither eliminates the pain, but takes the edge off so I can usually function. 1-2 tablets of Vicodin knock me out, so I only use it when I'm really hurting.
- I have tried to have a spinal cord stimulator implanted twice. The first time the doctor tried to implant the wires retrograde (going down the spine). I got some pain relief and slept better during the trial, but when they tried to implant the wires permanently, they couldn't get them in. I then did a very brief trial with the wires going up my spine, but the signal never reached the outside or top of my foot.
- Prayer. Lots and lots of prayer from dear friends and family around the globe! So thankful for this support!

I am now waiting to go to the Cleveland Clinic on April 20 to consult with Dr. richard Rosenquist. He is supposed to be one of the leading researchers and experts on CRPS in the country. I'm praying they have something for me and that I get back into a shoe sometime this year! I haven't been able to tolerate a shoe for over 15 months and am using a knee walker to get around. I've taken a Sabbatical from my work as a speaker/executive coach/business consultant. It's taking all of my time and mental and spiritual resources to stay on top of this disease and keep a positive outlook.

Thanks for letting me share my story! **
Blessings!

Hi,
Here to intro myself. I fell at work (tripped over a baby gate) and it was a BAD fall. As in call an ambulance cause I couldn't get up. Except xrays showed nothing so they called it a contusion and a sprain. Four weeks and no improvement and worker's comp finally gets an MRI. Two fractured metatarsals, the cuboid and other bones show massive bruising,etc. And I'm already showing signs of nerve injury. Gabapentin helps... and then doesn't. Increase it... and then it doesn't....

And then the big label CRPS. OMG so scary. Lyrica didn't help and made me feel really yuck. After months of waiting for approval I finally get the sympathetic nerve block (god worker's comp is awful). And it helps! (though what an awful awful thing to go through!).

But the nerve block wore off in less than a month. I'm so sad. It wasn't worth the trauma of the the procedure and the recovery time for a couple weeks of relief. Now what?

Meanwhile I'm getting a lawyer because my doctor says I need to go to Stanford's Pain Clinic and Worker's Comp says no.

Hello
 

First post and wanted to introduce ourselves (I'm David, writing for my wife, Alexi who has CRPS) Alexi was diagnosed maybe 8 or 9 years ago. Her CRPS was kicked off as a consequence of a discectomy and fusion of several cervical vertebrae (C2-5?) she underwent to address degenerative disc disease. After a typical convalescence the pain lingered. Worked with a pain management doctor over a year as the symptoms developed and worsened. Got a definitive diagnosis after a test for Horner's syndrome. Alexi presents nearly all the symptoms - the neuropathic pain, Allodynia, Edema and discoloration (more prominent on one side of her body - I can't recall if its the left side or the right side), hyper sensitivity to touch, temperature and sound. When untreated the symptoms can worsen to skin peeling, fingers curling and immobile, difficulty standing and walking, all with the extreme pain sensations.
Its been an ordeal figuring this all out, finding compassionate and informed medical professionals, scheduling the expensive inpatient treatments. Currently, Alexi is managing the daily pain with opiate medication and Lyrica and undergoes inpatient Ketamine Infusion therapy hospital stays which have offered the best results and even put the symptoms in remission.
She went to Dr. Timothy Lubenow at Rush University Medical Center in Chicago and more recently Dr. Semih Gungor at the Hospital for Special Surgery in New York. About a month ago Alexi's CRPS symptoms were returning and she recognized that she was coming out of remission. So she contacted Dr. Gungor to schedule an infusion treatment only to learn, much to her dismay, that Dr. Gungor has decided (after 7 years as a patient) that he will no longer treat her! (that's another topic for a separate post) leaving us "high and dry". So now we're scrambling to find new doctor who will perform the Ketamine Infusion (and accepts our insurance), and that's part of what brings us to this forum. We've found a doctor in New York who performs outpatient booster infusions, Dr. Glen Brooks of New York Ketamine Infusions LLC, but he does not participate with insurers, so we're looking at paying 50% of the bill out of pocket if my insurance covers as Out-of-Network.
Anyway, I (David, the husband) figured we can appeal to this forum for support in this process and also, due to extensive experience battling this disease, join the commuinty and offer help to others just starting to confront CRPS.
David and Alexi

Welcome to you both. I am so sorry to hear what you are going through. I just started seeing Dr. Lubenow myself.

I have never gotten Ketamine treatments and I live in Chicago so I'm sorry that I don't have any advice to offer on that front. Perhaps start a new thread asking for the information? Usually that is the best way for the post to be seen by more people.

I have found a lot of great advice and support here on this forum over the years...it is an excellent site for that and the members are from all over. There's got to be a place closer to where you live that is in network with your insurance. It makes me angry that a doctor would just refuse to see your wife after 7 years as a patient...that is just so upsetting. We all know that getting treatment in a timely manner is SO important with this condition.

Take care and keep us updated on how you are doing. I hope that you are able to get treatment soon. Hugs.

Back after a long hiatus!
 

I'm back after a long period of silence.

Life got the better of me.

I have a new condition to add to the mix and that is Menière's disease. Got this in recent years. Oh boy. Thank goodness it is under control with medications right now, but one of my meds is going to be removed from the market here (is already), so my doctor is needing to come up with an alternative to it - if there is one. Bummer, and a pretty big one at that!

Anyway, good to be back!