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!

CRPSbe,

Welcome back, I too have Meniere'sDisease! Ugh is all I can say. What meds are you taking to control it?

I'm from Belgium so meds might be called differently. I'll try and list the generic names in brackets if they aren't generics already (I take some generics).

* Betahistine (betahistine) 6 tabs a day, every 3H a tablet.
* Sulpiride (sulpiride) 2 x 1/2 a tab a day, morning & late afternoon.
* Dytenzide (hydrochloorthiazide/triamtereen) - it's a combo diuretic, 2x 1 tab, morning and afternoon --> this one has recently gone off the market.

So now my doctor is needing to look for an alternative.

Crps be,

I found betahistine to be the most helpful, until my batches were incorrectly compounded. I lost 50% of my hearing in my right ear. If you ever think something is off, check the betahistine immediately.

I also took the hctz, along with low dose Valium. I carried compazine suppositories in my purse for emergencies.

About 2 years ago, just before I got CRPS my Meniere's abated. I hope yours abates, too, it is horrible.

I previously always got the "Betaserc" (betahistine name brand) by the company Abbott. That got taken over by the company Mylan. The packaging was the same, everything the same except the brand name in the corner was different. Now I didn't even realize this, and kept taking them. Then I had one incident in my bathroom where I almost fell over from losing balance (just like that). And my ear kept popping (always my right ear).

Then I checked the box all over. And bingo!

Now I had taken generics by Mylan years ago as well and had the same kind of experience.

Now, normally if they keep the packaging the same, they shouldn't be able to touch the formula either, right? Well, guess again.

There is a generic brand in the EU that is big called "EG, Eurogenerics" and with that generic I have *never* had an issue, so back to those it was. I was okay with the ones by Abbott too (but then they got taken over).

Mine hasn't abated in the slightest, and it's been a number of years now (about 4 to 5 or so).

I don't react to valium whatsoever. Big mystery as to why, but I just don't feel like I've taken anything when I do take them.

I was dose sensitive. Too little and no effect, but once I got the betahistine dose sweet spot it was wonderful, my tinnitus diminished and my hearing improved.

I'm glad for that! :)

Thanks to all who have already welcomed me
 

Hi Everyone!

I joined this group after searching the internet for a fairly active CRPS support group and stumbling upon PurpleFoot721's post about ketamine infusions. I had to respond, so here I am.

I broke my wrist in 2008 and after a painful 6 weeks in a cast, my ortho checked my x-ray and removed the cast. My hand, fingers, wrist and part of the arm were swollen and discolored. It looked like a lobster claw. I could not even open the claw. He touched my hand and I almost passed out. The next thing I knew he was sending me to a pain management doctor and a certified hand therapist. He said I needed to have a nerve block and daily therapy. He wrote RSD as a diagnosis but did not explain what it was. When I googled RSD, the only information that I received indicated intense burning pain. At that time, my pain was intense but it was not burning so I doubted the diagnosis. Fortunately, my ortho continued to treat it as RSD. I was unable to take the medications he gave me for pain, but many months of therapy (great health insurance) really helped. The claw opened and that limb became functional.

The pain continued and the nature of it changed. My PCP recommended Dr. Robert Schwartzman at Drexel. I had to wait close to 2 years for my appointment with him. He confirmed the diagnosis. He has to be one of the most observant doctors I have ever met. He pointed out little changes that I had not even noticed. He started me on ketamine infusions which have helped a lot. There have been a few months of remission but it always returns, just not as bad as the original pain. It has spread to other parts of my body (breaking my foot 2 years ago didn't help). Two infusion days every 3 months usually equal 2 to 2 1/2 months of no pain to low pain.

That's my CRPS/RSD story in a nutshell. I hope that I can offer support to others. Best wishes for low pain and happy days.

OMG Shay, you've had your fair share of it, haven't you! :( I'm so sorry to hear that it has spread. Spread in me too.

First from both knees, to both legs fully (disability) and then in 2008 it spread to my arms/hands/shoulders (for which the treatment still works thank God).

My legs are totaled I'm afraid.

So sorry to hear about all that spread. It is interesting that you said that the treatment still works for your arms/hands/shoulders. I have also found that the ketamine infusions wipe out the pain in the spread areas and keep it away for longer than in the original area.

Right now I am waiting for some gastro testing. My PM told me that it appears to be running the full body course. I feel that for the most part I have been fortunate. I can still walk and use all limbs. I really want to have this heartburn and slow movement of food checked out. I have had heartburn for many years, long before the CRPS, but it is more intense now. I am hoping for the least harmful of causes.

Lately it seems like there is always some health issue popping up. I think part of it is my age and not CRPS. ;)

Wishing you a low/no pain day.

Shay

I fear there's been a little assuming done here. ;) I don't get infusions for my arms/hands/shoulders, but something else entirely (calcitonin shots). It is *the* most well-known treatment for CRPS in Belgium for lower stages.

Sorry, I reread my post and realized how you might think I assumed that you were getting ketamine infusions. I didn't. I was just trying to say that my treatment which happens to be ketamine infusions also does a much better job on the spread areas than the original site. Sorry I wasn't clear and thank you for responding.

:)
Shay

Oh okay, no biggie! I thought you had indeed assumed that. :) And I just didn't want to be forthright on the issue.

new member intro
 

This is my first posting, but I know there is a lot of knowledge here, and I really need to draw upon that right now…

I am virtually certain I have Complex Regional Pain Syndrome (CRPS) / RSD in my right knee. My symptoms closely match those of CRPS, and four doctors have been unable to explain the unbelievable, debilitating pain, and the other symptoms I've been experiencing for almost five weeks. My family is so desperate for an answer to my debilitating knee condition that we're willing to travel to see someone, if they're gifted, wherever they are, but would prefer closer to our area – southern Appalachians - given my inability to tolerate much travel. Background:

1) I’m a 49 year old male

2)Hiked 50-60 miles over a one month period mid-July to mid-August, with a $15 Velcro brace on my knee, with virtually no discomfort whatsoever, and those were strenuous hikes in national parks

3)Mowed my yard for 90 minutes with a riding mower upon our return. That night, my right knee swelled, looked bruised, and was unable to bear any weight. I am 100% certain I did not injure my knee, or any other part of my body.

4) Went to walk-in sports ortho clinic the next day. They ordered an MRI which showed ‘patellar displacement disorder’, very mild arthritic changes on the back of the kneecap, and mile remnants of an ACL tear over 20 years old, which never required surgery

5) Fluid was removed from knee, and a steroid injected. I was told I’d likely be off crutches in 5 days. I was prescribed physical therapy and 5mg hydrocodone (which didn’t come close to touching the pain)

6) Still massive/constant pain, persistent edema of the knee area, unable to bear much weight, intermittently much warmer (or sometimes colder) to the touch than my left knee, intermittent purple discoloration (as if it was badly bruised, which I’m 100% certain never happened), pain always present but it is always worse as the day progresses. After work days involving more walking/standing (with my crutches), my knee is very noticeably purple and bruised looking. I’ve lost much sleep due to pain, even after taking prescribed opiates. I’ve been sweating in a general sense much more than normal during the day. My right leg looks differently colored than my left, a friend said it looks ‘atrophied’, I’ve developed 5 half-inch unexplained and relatively small ‘wounds/bruises/legions’ on my right leg below my knee. Even the incidental rubbing of light khaki pants hurts my knee, as does a fan on low setting. Thankfully, little to no physical activity is required for work, but even walking down the hall with crutches really hurts, and the pain is starting to distract my focus and effectiveness at my job (high level of intellectual activity and focus required).

7) ER visit due to orthopedist's fear of infection (pain, very red, inflamed), but none found

8) Saw my family doc who tested for gout and for rheumatoid arthritis, with negative results for both. No diabetes. Did cycle of prednisone with no apparent results.

9) A complete artery/vein ultrasound of both legs was negative.

10) Examined by very reputable knee surgeon, who found nothing remotely suggesting surgical intervention is needed. He suggested it was due to inflammatory arthritis or RSD/CRPS, and that he’d refer me to a rheumatologist for a consult. The surgeon said my presentation “doesn’t add up to him”.

11) I’ve been seeing a great psychologist for the last 5 years, who specializes in pain issues, and he’s thinking it may be RSD/CRPS as well, and has treated/is treating patients with that diagnosis

12) Physical therapy regained some range of motion, but still little capacity to bear weight and can’t straighten my leg

13) Still on crutches, now for over 5 weeks. My PT has never seen anyone, in 20 year career, diagnosed with patellar displacement disorder who presented with this much pain

14) I had an "incident" at physical therapy last week. On a recumbent exercise bike, with zero resistance, I was to do 5 minutes of simply moving my legs, at a snail's pace if needed in that circular motion. After 2 minutes and about 5 revolutions, the sharp pain was so much I couldn't continue. After 'recovering', I was doing a different, zero resistance, absolutely most basic range of motion exercise, and after about one minute was suddenly hit with what I think was the single worst pain I've ever felt in my life. I screamed, almost passed out from the pain, was starting to hyperventilate from uncontrolled breathing...it was a mess. It felt exactly as I imagine a red-hot nail would feel, hammered into the top of the bone below my kneecap. Truly unbelievable pain.

15) Currently, I absolutely cannot drive, as the brake pressure is too much. It's so frustrating that no one even knows what's causing this. Even the weight of holding my leg up while on crutches hurts my knee, and I can’t tolerate much weight on it.

16) I am largely incapacitated while home; trying to rest so I can tolerate work. My wife has to drive me to work and anywhere else, in addition to caring for our 10 year old daughter. She has to do so much more around the house, as I’m unable to assist. Mentally, the pain is really becoming unbearable, and didn’t respond well to 7.5 mg oxycodone 2-3 times daily. Now I have 10mg oxycodone up to 4 times a day, and that has helped some. Am concerned the gabapentin is/may impact my cognitive functioning at work.

17) Went to a follow-up with original ortho doc, who, even before I brought it up, said it may be Complex Regional Pain Syndrome. Said to try Gabapentin - 300mg at a time, three times a day, while awaiting specialist referrals

18) I have appointments with three new doctors this week: a pain management doc Wednesday, an out-of-town Rheumatologist Thursday (set up by my father-in-law who's a retired pediatrician, so we can at least see someone until my local appointment on 11/9), and a Neurologist Friday. I’m optimistic I’ll have much more info after those visits. I hope so, since the constant pain is hard to tolerate, as is the lack of a diagnosis. I NEED a diagnosis, so I can know what my treatment options are, and I can feel like we're at least addressing something, somehow. My lack of improvement, and actual deterioration in some ways, has me tremendously stressed, as it does my wife and 10 year-old daughter.

19) One other issue which may well be relevant is that I had a vasectomy about 5 years ago, and during the procedure felt a sharp pain. I proceeded to have almost 4 years of massive testicular/scrotal pain. I was able to work (barely), and otherwise found some relief by being horizontal, in addition to many medications. I had to see an internationally-renowned specialist 4 states away on 6 occasions, where I had – in no particular order - nerve blocks, cryoablation, denervation of the spermatic cord, a vasectomy reversal, and finally, an orchiectomy (one testicle removed). After the orchiectomy healed, I finally achieved pain relief of very nearly 100%!! I was told that my healing from each of the procedures was much slower than normal, and involved more pain that was typical. I enjoyed nine months of feeling re-born, as I was finally pain free. That’s when our hiking trip happened, and here I am, debilitated by pain once again. I’m wondering if there’s a connection between the Post Vasectomy Pain Syndrome I developed, and my current issues. Most CRPS/RSD seems to result from surgery/trauma. I overused me knee hiking, but never actually ‘hurt’ it. Mowing the lawn with the riding mower set off my current symptoms.

I’ll post updates after these visits, and GREATLY appreciate your time in reading this, and welcome any input you can provide.
Jonathan

Possible Diagnosis of CRPS
 

Hi. This is the first time I'm on one of these forums. After 4 years of suffering, I finally found a doctor who thinks he knows what's wrong with me.

It started when I wanted to lose weight and decided to do those Insanity videos in my basement. The problem was that I wasn't wearing any shoes, which is stupid, I know, but I didn't know any better. Insanity workouts involve high impact exercise, which means a lot of jumping up and down. One move I did was going into a plan or push up position, then clapping my hands together, then fall back on my hands, if that makes sense! ha. really good for me. One day I noticed swelling in my ankle and tried resting it and stopped exercising.

Here's the worst part, I didn't go to the doctor. I have no idea why. I was lazy, depressed, and to overwhelmed to take care of myself (this is true in many areas of my health). Eventually I see a couple of physical therapists and a foot and knee surgeon. All diagnose me with tendonitis but I can tell they're really confused and not confident with that. They were shocked by my symptoms.

So that brings me to what I've been experiencing. My left foot has changed permanently. It is always a little puffy in the area below the toes and around my ankle. I feel soreness in my foot, ankle, and calf. I get aching pain and my feet kill me after walking for a bit, even with comfortable sneakers on. When my feet are elevated for a long time, they look pretty normal (only if you look closely will you see that the left is a little big), but when I'm sitting for a long time or I walk in flat shoes, they swell big time, especially my left foot. Wearing sneakers or boots do a good job of compressing the foot and swelling is minimal. Worst symptom of all has been the foot dragging and swinging out, which causes me to bump into things. I trip up the stairs and I think I have some sort of foot drop. Last winter I was walking and all of a sudden I realized I was falling. I didn't trip over anything, just fell forward. I'm also pretty vain about this stuff. As a young woman, it's pretty devastating when you have ankles that swell like crazy. I look like an old lady with edema in her legs due to old age. Really attractive. Now I'm noticing the same symptoms in my right foot and in my hands. I've been really clumsy dropping things and such.

I can't tell you the cycle I've gone through, giving up and then thinking, "There has to be a reason for all of this. What's the cause?" A couple of weeks ago I went to the doctor and laid out all my symptoms online (with Zocdoc). I wanted him to have a diagnosis by the time I got there. He told me this is the presumptive one, so here I am.

To sum up, my symptoms are:

-pain in foot, ankle, calf
-extreme swelling
-edema/pitting
-red spots when I walk
-semi foot drop
-possible spread to right ankle and hands (dropping things)

Here are some pics

Sorry for the long post. It's a scary diagnosis and I hope it can get better. If anyone has thoughts let me know. Thanks. I'm eager to hear your stories too and eager to exchange stories about our journeys.

Hi Outlander,

I am so sorry for what you're going through. We all know how hard it is getting this figured out. There is definitely a lot of emotional and cognitive bargaining that goes on. That said, there is always hope. Even if you have CRPS, 80% of patients improve over time according to major researchers.

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

Hang in there and come visit on the main forum. You are not alone. :hug:

Outlander,

Welcome to the forum. I am so sorry to hear about your possible diagnosis of CRPS. It is a scary diagnosis, but there is hope. Please take Littlepaw's advice:

CRPS is a diagnosis of exclusion and if a contributing cause can be found and treated it can make a difference in your outcome. If you have not had imaging or nerve conduction studies done those could give important information. CRPS could be causing your foot to turn out but there could be other causes such as nerve compression. Please don't settle for this unless all possibilities have been exhausted.

I know a woman who definitely had CRPS in other areas of her body, so when she developed pack pain and was told that the CRPS had spread, she accepted it. Several months later a different doctor diagnosed a spinal infection which was treated and the back pain went away. Moral of the story: Make sure all possibilities are ruled out or otherwise you may be suffering needlessly.

With that said, I hope that you share your journey with the forum. We can learn from each other and having others who understand our pain and frustrations helps us deal with it all.

Shay

Thanks littlepaw and shay. I am going back to the doctor on 11/8 to have nerve conduction studies done. my neurologist wants me to get some blood work done to rule out other possibilities, like diabetes, vit b12 deficiency and something about tssh (not sure what that is). i also wonder if there is some ankle instability because i feel clicking in at least one ankle and when i wear the right shoes i don't swell as much. I will ask all these questions, but i'm afraid. i always think doctors believe people like us are hypochondriacs or have munchausen's syndrome because we want to get to the bottom of what's going on. i'll keep you guys updated.

" i always think doctors believe people like us are hypochondriacs or have munchausen's syndrome because we want to get to the bottom of what's going on."

Outlander,

Don't worry about that. Good doctors appreciate patients who advocate for themselves. They may not agree with you, but they should be able to address any questions and help you on your quest for a correct diagnosis and treatment. Also, don't forget that you may be dealing with more than one problem. Just because we have one disorder, doesn't me that we don't have others along with it.

Shay

confirmation
 

Thanks for the reply, Shay.

My emg study went well, so that's good, but the doctor believes it's rsd, as he called it. When i mentioned possible spreading, he said that doesn't happen. sigh. He doesn't even know it's new name, but of course this doesn't mean he's wrong.

Anyway, i'm going to continue exercising and stretching my ankle. do you think there is anything else I can do? I figure I'll just follow tips I see online.

Hi all
I'm new here and I have had CRPS for nearly 18 years.
I'm married and live in UK with my husband and our cat Precious.
The CRPS started in one hand, spread to the other hand within a year and then in 2012 it carried on spreading to the degree it is now full body, I'm housebound and use a wheelchair to keep mobile. I have not been on any pain meds for over 11 years so I just do everything I can to distract myself from the 24/7 pain

What does your doctor say to that? Have you been referred to pain management. That is so odd that they would just leave it like that?

What am I doing?
 

Hmmmm. I thought I did an intro already, but now I'm not sure I did it here in the CRPS/RSD thread. Please forgive me if this ends up being posted twice. My bad.

The short story:

So I was in an MVA 4 years ago and all of me healed up except for my right knee. Three years passed, filled with PT, 2 surgeries, lots of different drugs, lots of pain, lots of failure of treatment, tons of frustration, and no proper diagnosis. Cut to last January when an orthopedic surgeon said, (looking like a light bulb went off in his brain), "OH. Let's stop right here. I think you have CRPS. Used to be called RSD. I'm referring you to a pain management specialist.

New doc had only Lyrica, gabapentin, lumbar sympathetic blocks, and SCS to offer me. I thought, "There must be newer, cutting-edge stuff out there." I did the blocks (which gave me a few weeks of somewhat knocked down pain, or was it wishful thinking?) and researched like mad, finding RSDSA most helpful. Loved the vids.

Told my GP all about LDN (low-dose naltrexone), and she agreed & hooked me up with an awesome compounding pharmacy with a fab pharmacist who also compounded a topical for my horrid allodynia (and it does take the edge off). The LDN took a good 3-4 months to really start noting the effects. During this time, I experienced hella flares, and started looking into ketamine.

Talked to my doc, she said "Why not?" and I found a doc, beginning my infusions in Sept. 2017. I've also got an anti-inflammatory diet, take palmitoylethanolamide, vitamins B, C, D...I exercise within my limitations, indulge in local far-infrared sauna sessions, and try to practice mindful meditation. Looking now into brain plasticity and how things like graded motor imagery can possible help me mentally.

So I like my treatment plan. I'm still in pain 24/7, but the ketamine has been like the icing on the cake.

I'm here because "knowledge is power" has kept me going all these years, and I never want to stop learning. Also, CRPS/RSD has such far-reaching consequences, I need others with it to learn how to live life. I'm looking forward to getting to know you better and learn from you.

Thanks,
CRPSinCT

Hello everyone.

I’ve been on this site before and got some amazing support and advice, and here I am again, in another situation!

Trying to keep this short - I broke my collarbone in June 2016 and had it operated on - plated and pinned in July of that year.

After so many months it was still bothering me and the Surgeon suggested I may have RSD ... I was supposed to go back and see him as yes, it is still bothering me, but since then, I had a fall from my mobility scooter onto a road - luckily the traffic stopped!

There was no break to my hand but I was taken into Hospital as they suspected something called Compartment Syndrome ... the following day a rash spread up my arm and they worried about Sepsis ... so I ended up having two weeks in Hospital with my arm in an elevated sling, with anti biotics and lots and lots of tests.

In the end, they decided on CRPS.

I have been having Hand Therapy, gentle massage, mirror image therapy and now my Pain Doctor wants to do a Bier Block .... I’m a tad wary as the cannula will be going in my CRPS hand. (He even suggested that he may have to put my hand in hot water so he could find a vein)

On top of this I have other numous pain problems ....

Am joining you all here for support and also, when I’m feeling in an OK mood, to support others.

:grouphug:

Saffy,

Sorry about your latest predicament; but am glad to see you have posted.


Gerry

hi Gerry ... yep, it seems to be one thing after another!!

Phoning the Pain Clinic today as the Bier Block didnt work at all last week ... :confused:

Husband suffers with CRPS
 

Hey everyone. I am new here.
My husband suffers from RSD although I guess by now it would be stage 3 of CRPS a
Here is our story
13 years ago my 23 yr old husband who was in great shape, played rep baseball and hockey for many years hit a rut in the ice while playing men's hockey.
He tore his ACL meniscus tear, ( in half) mcl strain.
After a year of suffering in pain and reinjuring a few times the dr did a ROUTINE scope ( I hate that word) he promised my hubby that he would be golfing 2 weeks later.
First after filling out the lonnnngggggg presurgey booklet and stating that both sides of his fam suffer from blood clots, the DR decided against giving him a blood thinner with surgery. ( back then it was up to the DR) so!! He had surgery on Monday. By wed I was on the phone to the dr. My husband was in excruciating pain and nothing was working. So we went in to the dr.
He told us everything was fine go home here are some perks.
So days go by, weeks and he is still in a lot of pain, we go back. Dr. Says ok let's do an ultra sound and see. Then they did a vascular ultra sound
At that time there were 23 superficial blood clots in his leg. Some the size of quarters.
Doc says " they aren't in any danger of moving so nothing we can do, here are some more perks"
Let me just add that during that time my husband was taking 6-8 Percocet at a time,
So weeks go by and we go back in and say something isn't right. He has burning pain, can't move his leg,
Dr says ok I'll send u to another dr.
We go in there is a pic behind his desk of our surgeon and him playing golf together, that doc says I know what's wrong, we are going to cut u from hip to ankle and strip your veins let's sched for tomorrow.
My SO (significant other) says wait I have to talk to my wife.
He came home and we said " no way is he going under the knife again, not when they are friends" we found out after that if we had consented to the surgery then DR. Asshole wouldn't be liable for any injuries caused.
So months go by and I'm calling the receptionist weekely to let her know SO is out of his meds, she is faxing scrips to the pharmacy at an alarming rate.
So about 9 months in my SO looses it on the surgeon. He says u know what it's all in your head, your hooked on perks I'm done, kicks him out of his office.
So for 2 years we go to dr after dr and they all say the same thing, it's in your head here is antidepressants and Percocet.
So we get in the car and drive to sunnybrook to a dr who we had heard could help us.
We sat in his office all day begging him to help us we have 5 vascular ultrasounds, bone scan, x- rays and other tests. He finally agrees to see us. Takes one look at my husbands leg and says you have Reflex sypothetic dystrophy. We asked him what that was. He said its nerve damage
It's treatable not curable and you will have it for the rest of your life.
You need a pain dr.
So we leave there relieved because we now know what's wrong, but!! We know it's never going away. So we see drs, pain management we see many people nobody knows what to do, or how to treat this, they send him for test after test and give him all kinds of meds because nobody knows enough about this and they are just taking guess after guessby this time he has started to have seizures and "dizzy spells" his leg feels like his bones are melting his skin.
So it's been 13 years. Approx 30 diff drs hundreds of tests, hundreds of meds.
And my husband suffers every day with crippling pain.the one pain medication that actually helped him after years of trying a cocktail of meds was OxyContin and the people that abuse that have made it impossible to take. His dr just decided to move to another Province and we can't find a dr to take him because his dr. Of 8 years had him on such a high dose that nobody will even speak to him, even with all of our tests, results, reports.
He gets dizzy, sometimes for a few mins, sometimes for hours, I just found out tonight that the dizziness is a form of seizure. Which no dr. Has ever told us before. Drs. Really don't know much about this crippling condition.
So! That's our story. He has been living with this pain for 13 years, we have 2 children, have been together 16 years, I love my husband but I hate his pain. It runs our entire lives, I sympathize with him. I feel for him, he has a hatred for drs that is well founded, he lashes out when he is in pain, I receive most of that anger which is very difficult, but I don't live with pain.
Thank you for letting me share my story. I apologize for any spelling mistakes or punctuation I am trying to type this fast while dealing with a two year old.
I logged on to this forum tonight to see if there was any new info on this condition, I was pleasently surprised to read a bunch of new treatments and information that we didn't have before. When my SO was diagnosed there were only 500 documented cases and none of them were anywhere close to where we were.
Incase anyone asks or is wondering we live in Canada and before u have surgery u have to sign an agreement stating that if something goes wrong u are unable to sue. Now we could have sued within 2 years of the surgery but because the dr kept sending us to trusted colleagues who covered for him we did not get a diagnosis until after the three year mark. By then it was too late to do anything about it. We have logged a formal complaint with the dr. We have also contacted the college of physicians, so this mistake and terrible treatment is logged on his permanent record as a dr. We also have one other person who had surgery the same morning as my husband had problems as well, his were not as severe and has since been corrected by a different dr.
Thank you.
Tammy.

I had a car accident age 23, and then it took almost 3 years and then they diagnosed me with CRPS. By then it was too late and it had traveled from both my knees to my legs, fully; toes to hips.

I now have it in my hands too, but am still receiving treatment for that.

I have to say I waited 9 years for a pain management program.

Go see another pain specialist; maybe they can help him. And try and find a local support group, they usually have lists of doctors' names that are at least familiar with CRPS and its treatment.

Good luck!

I am 45 going on 46, BTW. Next September, I will have had this 23 years!

Introduction!
 

Hi all! I'm new to the forum after being diagnosed with CRPS last week. I am currently navigating the pain management process and came here to see what others are doing that helps or doesn't help.

My background: I had my 3rd knee surgery in May which was a high tibial osteotomy and realignment. I have had horrible shin pain from day one and it gets worse rather than better. I've had countless imaging and lab tests done to rule out any other possibilities which have led my ortho and pain management doctor to determine it is CRPS. My ortho is currently treating it until my 2nd pain management visit as they do not prescribe at the first. The treatment to date doesn't work (tylenol 3, meloxicam, flexeril and lidocaine patches) but the pain management doctor has other ideas including an increase of pain medicine and switching to celebrex and adding gabapentin. For some reason my ortho did not want to be the prescriber to initiate this so I have been stuck in limbo until my next appt with pain management in approx 2 weeks.

I'm hoping to get some more insight and learn about what regimens work or don't work for other people. So far it is confined to my right leg from the knee down but I understand it can spread. I'm hoping to avoid that. Looking forward to learning from all of you!!

Hello annabanana and welcome to Neurotalk. I'm sorry to hear that you ended up being diagnosed with CRPS but ay least you have a diagnosis and can start moving towards proper treatment.

Your pain management doctor has a good starting point in plan for you by keeping you on the celebrex and starting you on gabapentin. It may or may not help as everyone reacts differently to different medications. Gabapentin did not work for me but if you are patient and give it time, who knows, it may work wonders for you. Just remember that gabapentin is something that needs to be titrated up to higher doses that would work. My doctor stopped at 1600mg when he gave up on it but it's not unheard of to go ad high as 3000mg to get good relief.

As for myself I was a difficult case. After trying different medications here is what works best for myself:

Trileptal 300mg 2x daily
Terazosin 5mg 1x daily
Vitamin C 500mg 1x daily
Cymbalta 2x60mg 1x daily
Low dose Naltrexone 4.5mg 1x daily
High CBD medical marijuana
And I have a DRG stimulator implanted in my back

As I said though, everyone is different and my treatment took a long time to find what worked out for me.

Wishing you well and I hope your relief comes quick as remission is very much possible.

Wow some one actually has what I have. Mines all in my neck, shoulders, arm(s) and hand(s). Mine is caused from spinal fusion called ACDF after 2 herniated discs were removed. It has not been easy finding someone with it in the hands and fingers like us.