On top of RSD I struggled with my back. Exactly what you have been going through. After my spine fusion. I awoke with the MONSTER that had spread to my legs. I am so glad I found this support line!!! LISAR624

Hello AngieG
 

Hello AngieG,

I just wanted to say welcome to the NeuroTalk Support Groups. :)

Keep fighting for your Disability! LISAR624

Steve my faith in GOD is what has got me this far! I was diagnosed 18yrs ago and everyday I wake up it is through the Grace of GOD! LISAR624

When I awoke from my back surgery. My RSD had spread to both legs. I have also been diagnosed with Fibro. about 5or 6 yrs ago. I pray your DR. can find out because if it is a flare-up. The sooner they help you the better!!! LISAR624

Make sure you keep on top of any flare-ups! Sounds like you are doing a great job!!
LISAR624

Reading everyone's story sure helps and sounds so familiar! I have never had problems with my body like I've had since getting RSD 18yrs ago! I was looking at your issue with sugar dropping and I have that same problem. When I see my Dr. on my next appt. I am going to ask her about my RSD and issues with my health! Thank you LISAR624

I wonder if MEDICARE pays for these Ketamine infusions? LISAR624

I have been suffering for 18yrs with RSD. I watched your video and was very moved! I am so glad there are supporters that we can communicate with! LISAR624

What a nasty disease it is! I have lost a lot of support so I am so glad to have found this great group of people suffering from the same awful pain!!!! LISAR624

Hi Becca The only way my RSD was diagnosed was through a Nerve Conduction test. Take care LISAR624

New Member--Concerned Girlfriend
 

Hi All. My boyfriend has CRPS and has had it for a few years. I've known this wonderful man for over 25 years and he is the love of my life. We've been in love with each other for that long and finally our lives have come together that we are able to be together. Its an amazing love story for sure :)

He has been totally upfront and honest with me about the CRPS and how he suffers every day and that there is never a moment that he doesnt have pain. He's taught me about this awful disease and I've done reseach on my own. He has a terrible time sleeping and struggles to get 3 hours a night. After about 3 months his body gives up and he sleeps for about 3-4 days straight only waking to eat and then falls right back to sleep.

I joined this forum because I wanted to continue learning about CRPS and what steps I can take to help and support him, especially during times when his pain is spiked.

GOD bless you! Make sure you get diagnosed early. That is definitely key! If you are not happy with the first doctor try and find one that will help! Take care & Good luck LISAR

New Member - Recently Diagnosed
 

On 7/16/14, my right foot hurt above the 2nd and 3rd metatarsal. It also hurt to roll off the ball of my foot. At first, the pain dissipated with rest, but eventually, it started hurting all the time. It was diagnosed as a strained tendon by a primary care doctor (an orthopedist stated it was actually a stress fracture) and I was told not to walk on it, but not given any device to do this (even though I specifically asked for one). On 7/28/14, I was walking my dog home from the dog park, when I landed weird with my right foot on uneven, bowed up sidewalk. My right foot twisted inward (toward my left foot) and down the bowed up bump. I felt a pop and was in horrible pain. It was diagnosed as a stress fracture of the 2nd metatarsal. I was put on crutches on 7/29, non weight bearing. On 7/30/14, I was put in a walking boot and allowed to walk with the walking boot and crutches. By 8/2/14, I was in so much pain, I was crying. The on-call orthopedist thought I might have dislocated the fracture and put me back on crutches not weight bearing. I have been in horrible pain ever since.

On 10/6/14, I was diagnosed with RSD in my right foot by my orthopedist and sent to a pain management doctor. On 10/8/14, I had a second opinion with an orthopedist who also diagnosed me with RSD (there was conflicting diagnoses of whether my stress fracture had healed). On 10/28/14, I saw the pain management doctor to receive a lumbar sympathetic block. The pain doctor stated I did not have RSD and refused to do the block. A few days later, I developed cold pain and a cold right foot. On 11/6/14, I saw a 3rd orthopedist who is an expert in RSD and was again diagnosed with RSD. He told me I was not a good candidate for a nerve block. My condition has continued to worsen.

7/17/14 - started ibuprofen
7/29/14 - started tramadol and instructed to continue ibuprofen. put on crutches, non weight bearing
7/30/14 - put in walking boot and allowed to walk with boot and crutches
7/31/14 - developed a rash and severe itching from tramadol. pulled off and told to continue ibuprofen
8/2/14 - put on cyclobenzaprine. put back on crutches, non weight bearing
8/3/14 - started norco and stopped ibuprofen
8/13/14 - started perocet and continued norco
10/3/14 - taken off norco and percocet (not weaned off) and put on mobic
10/7/14 - developed severe side effects to mobic and pulled off. told to start ibuprofen
10/24/14 - put on nortriptyline and told to continue ibuprofen
10/27/14 - put on calcitonin nasal spray and told to continue ibuprofen
10/28/14 - put on gabapentin and told to continue ibuprofen, calcitonin, and nortiptyline
10/31/14 - Started PT
11/6/14 - put on acetaminophen and told to continue ibuprofen, calcitonin, nortriptyline, and gapabentin
11/14/14 - started mirror therapy and instructed to start walking very short distances in boot with crutches
11/19/14 - cleared to put weight on my right foot. starting walking without boot and with crutches at home, but still use crutches non weight bearing when outside home
11/25/14 - started neuropathic pain cream and continued all other treatments

The burning pain is better managed now and the muscle contraction (disfigured toe) has mostly resolved. The other pains (stabbing, throbbing, pins and needles, dull, ache, etc.) are also better managed. I still have stiffness in my toe joints, though it's better. The stiffness is starting to spread to the ankle. I am still sensitive to touch, though less often. The sensitivity and pain is starting to spread to my right ankle and leg. I still have swelling, though it is less than before. The skin discoloration is still frequent. My toe nails are slow growing, turning white, and peeling apart and things (fuzz from socks) get stuck on them. The toe nails are very tender to the touch. My right foot used to be hot all the time, but now it is very cold all the time and it makes the rest of me cold. The cold is painful and very uncomfortable. I'm starting to have insomnia. I am agitated, irritable, anxious, stressed, and more recently, depressed. I haven't been able to work all week due to depression (from PT telling me that all the gains I have made are really low and we still can't start any strength training, so I won't be fully recovered (walking) for 5 months) and the cold foot. I have been teleworking this whole time - doctor's orders. I see a therapist (mental health professional connected to the rehabilitation hospital I do PT in) on Friday 12/5 and a pain management doctor (a new one connected to the rehabilitation hospital I do PT in and am staring therapy in) on Wednesday, 12/10/14. I am hoping for relief from depression and the cold foot as soon as possible. I don't see my orthopedist RSD specialist until 12/17/14.

Sorry this was so long. I needed to write out all the details once. And it will be helpful for my new doctors.

Hi there fellow CRPS Warriors!
 

My names is Sarah and I'm 37 yo and live in Boise, Idaho. I have been Dx'd with CRPS as of July 2014.

I've had numerous issues with my right shoulder (frozen shoulder, bursitis, labral partial tear, osteoarthritis, and tendinitis) and my right hip (bursitis and osteoarthritis) throughout my life.

It started with a right shoulder injury in August of 2013. The injury was my fault and happened at home. I tried to pick up an old school TV off the ground a few inches and I felt something tear, then was in extreme pain. Over the course of four months, I saw 4 orthopedic doc's, had 4 MRI's, 2 CT's, 1 arthroscopy, PT 3 days a week, 4 injections and a partridge in a pear tree. None of the docs I saw knew what they were dealing with, except for the fact that it was getting worse (spread to my neck, all of right arm, left upper arm, and upper right hip) and they couldn't stop it. I was referred to a PM doc in December 2013 and she did am EMG (showed normal) and put me on narcotic pain killers. I went another 6 months of just seeing her instead of any further orthos, and had trigger point injections and FDM treatment done. FDM=Fascial Distortion Model includes manipulating bones and joints using pressure and ultrasound guided injections. The most time I had any kind of relief was a month, and even then, it wasn't complete pain relief. In July of 2014, my doc suggested I see an ortho surgeon for exploratory surgery to find out what was going on. I found Dr. Waters' name online and saw him within a week. Within 5 minutes of talking with him over what had happened he said "I am 99% sure I know what you have. I believe you have RSD. We're going to get a bone scan to see how your density looks, but your symptoms are pretty clear that it's RSD." Once I got home, I researched RSD and got myself familiar on what to expect. My bone scan showed osteoarthritis in my right shoulder, right hip, ribs, sternum, and left and right fingers. Wow! I'm 37! I also finally had the diagnosis I was looking for over the past 11 months. Told my pain doc and she started me out on Gaba. To make a longer story short I've been on countless meds, am now in pool therapy, and am trying to find a new pain doc. I'm at the point that I realize I'll have to move to a better area to find one and I'm okay with that. I'm also on Medicaid, which doesn't help me, and I'm limited to doctors and treatments.

I've worked a lot of construction, customer service, medical admin, collections and now I chose to spend 20k to go to school for medical assisting.

I was in my last month of school (14 mo program) and about 2 weeks into my externship when all this came around. Due to my CRPS, I couldn't finish my extern and was immediately kicked out of school.

I can't work, let alone barely get out of bed. My mom had to move from 400 miles away to help take care of me and my ex-husband (he's actually my best friend) is helping me with our 12 year old son.

I've applied, myself, for SSI and was denied, then got a lawyer for the appeal. The appeal was denied, much to my lawyer's surprise, and now I'm waiting to schedule with a judge (which they told me was at least a year out).

My current list of meds include:

Lyrica 300mgs daily
Fentanyl 50mcgm patches every 3 days
OxyContin 15mgs 3-4 daily
Amitriptyline 10mgs 1-2 nightly
Effexor 150mgs every other day
Flexiril 10mgs 1-2 daily
Prilosec 40mgs daily

On top of my CRPS, I also have gastroparesis, esophageal motility disorder, and anxiety so 2 of my meds are for those issues.

I've been in the pool therapy for a week so it's too early to tell if it's working. And I'm in the market for a new pain doc, because mine is not helping me much anymore and we've had a falling out. My bf and I were considering a move to the Portland area in the summer but had opted not to when this had come up. Now I'm thinking it would be a better option because no one (except for that ortho surgeon) knows about CPRS around here or how to treat it.

I'm almost full body now, both arms-shoulder to fingertips, right leg-hip to toes, and left leg-knee to toes.

Sorry for the long post, but hoping to talk with others like me. **

my intro
 

Hi :)
I've been browsing this forum for a few weeks, and finally decided to post.

I was a runner (always have been an athlete--competitive swimming in high school, college, etc., but after having three kids, it's easier to find time to run) and injured my left hip. I tore my labrum (MRI three years ago) but the orthopedic encouraged me to try PT and resting it instead of surgery. Fast forward to this past summer, and the hip pain got bad enough to make me stop running and start riding my bike (indoor trainer) instead. I had another MRI and it showed a bigger tear in the labrum, tendonitis, and bursitis. The ortho said it was time to surgically repair everything. He's the only board certified arthroscopic hip surgeon for about a 200 mile area.

On november 13th (this year) I had hip surgery. The surgeon repaired the labrum, shaved a bunch of bone, and cut my hip flexor (iliopsoas). Everything went very well and I did everything I was told to do in the recovery. About 7 days after the hip surgery, I touched my left foot to the ground and was met with pins and needles sensation. The next day I called my doctor who said it was probably from the traction machine and he'd see me in two more days. Over those next two days, my foot started getting cold to the touch and it turned purple. When I saw the doctor, he immediately sent me to the ER for vascular studies to rule out blood clot (everything was normal). He then referred me to a neurosurgery group and I saw a pain management specialist five days later. The pain dr diagnosed me with CRPS right away. He said I met every single symptom. The pain was constant by this time and it felt like electrical shocks to my foot all the time. I can't tolerate pain medication, but was able to take valium to sleep for about 4 hours. It was awful!

Since I was (and am) still recovering from the hip surgery, crutches were the only way to get around.

The pain dr put me on a 7 day course of methylprednisolone, gabapentin, and told me to continue the naproxen (from hip surgery) and valium at bedtime. He tried two nerve blocks, but they didn't help. I'm still taking gabapentin and sometimes the naproxen. The gabapentin has helped calm down the electrical shock type of shooting pain.

I've been doing Physical Therapy for both the hip and the foot, but one random thing that has allowed me to put some pressure on my foot so I can get a break from the crutches, is taking a hot bath at night before I go to sleep. My foot feels okay in the bath, but when I get out, it starts swelling and doing the stabbing pains. When I wake up, I'm able to put enough pressure on it in order to hobble around without crutches. That's a huge relief! The crutches are driving me crazy. I have a walker and a roll about knee scooter thing, but both of those are really hard in my tiny house. At least I can maneuver more easily with crutches.

On top of all this, we have three very medically involved kids and a small farm. It's been incredibly hard adjusting to a sedentary day. I'm used to being up and moving, lifting heavy things, running every single day, lifting weights at the gym, homeschooling the kids, taking care of all the house stuff, etc. My kids are young, but they've been very helpful. :)

Looking forward to being part of this site :)
Mariah

Welcome Mlhps. :Wave-Hello:

Hello everyone. I was born with Ehlers Danlos Syndrome. On July 25, 2012 I dislocated my ankle walking down a flight stairs. I reset my ankle and continued to walk on it the rest of my day. The only thing I noticed was different, was that my toes went numb. That evening I went to the ER, and they me it wasn't broken or dislocated anymore, and to get an MRI asap. On August 1st I found out that I partially tore my Achilles Tendon. That led to me developing CRPS. It took almost 7 months before I was diagnosed. I'm just hoping to talk to and make friends with people who understand.

Hi from IL
 

Welcome Paige,
So sorry you had to find your way here, but there is great support and understanding. You are not alone. No apology is needed. Everyone is here because of some complicated mishap. I would encourage you not to give up on a fixable cause. Many cases of CRPS are caused by nerve entrapment that can be ameliorated. I know they say no surgery but that depends who you ask. If your problem is identified injury at the peroneal, find a peripheral nerve specialist to make the call if anything is be done. Ortho told me I had no options, they don't always know nerves so well. There is an interesting article by Susan Mackinnon MD et. al "Nerve re-section, crush and relocation relieve CRPS Type II: a case report" that says there are options in some cases.

In another stage of my journey I had my posterior tibial scarred down from a "minor" ortho procedure that also partially transected my calcaneal branch leaving me with a painful neuroma. Whoops. Ortho insisted my procedure had been successful LOL. In desperation I saw two plastic surgeons who did a peripheral nerve fellowhip at Washington University - one practicing in Dallas, one in Houston - both said the same thing. I had identifiable entrapment and they could do something about it. One did a "scratch-collapse"test to find the lesion exactly. 3.5 hours of microsurgery later the shooting pains and agonizing hypedermics jabbing me were gone and still are. Is it like it used to be? No, but I can sleep at night and don't whimper on the couch like a wounded animal all the time. I later developed more CRPS-y symptoms following a separate procedure to take an aggressive fibroma out of my sole where there are loads of sympathetic fibers. Still recovering from that one.

I say hang in there, don't take no for an answer till you've satisfied yourself and keep up the fight!
Sending Healing Love:hug:
Littlepaw

Hi Paige,
Never stop trying to advance. There will be good days and bad days. It will take longer than you want it to and demand patience and grit. You have these things. Sometimes our strengths are hard to find when we are panicked and in pain but they are still in there. Don't let yourself get buried in sadness and despair. Everyone visits a dark place sometimes, what counts is making sure it is only a visit. You are not a burden. This is a proverbial bump in the road and you do not yet know what you will become. It is very hard in the beginning but you will find a way. Use your training to find the people who can help you. As you know different specialists will have something different to say. Stanton-Hicks says 80% of people have improvement. I like those odds....
I am sending more healing love, :hug: Littlepaw

Don't forget medicine is a small world in many ways as far as physicians. I worked in healthcare many years. There is always a guy who knows a guy...it seems like so many of the specialists have people they trained with who have now spread around the country. Perhaps your contacts in TN can still help. If people back there find out you were in trouble and didn't reach out you know they'd scold you. PM is for sure a small bunch. I always find half the orthopedists know each other from somewhere. Don't forget plastics peripheral nerve - the orphan specialty if you can find one. Pick your current contacts brains, call in favors. Also if you are in/near a large city there may be a CRPS support group with knowledge of who is familiar with treating. Call your insurance - self-referral is often allowable and if not early CRPS is considered urgent. See if they will do anything else. In the meantime, move as much as you can, try to keep normal ROM if possible, but avoid flare. You want your brain to receive non-painful sensations if possible. To this end I spent many, many months at a pool, desensitizing my foot and loving on it before being able to walk again. Try different meds if you can, neurontin was bad for me, nortriptyline much better. It can take a few tries as you know. Most of all never give up...

Hi everyone. Thank you all for sharing and caring, I look forward to getting to know you all. I was just diagnosed on saturday after having a very light sprain last november that didn't seem to be healing right. I had gone within a day or two after the incident for x-rays, nothing broken, bad sprain. I got a shot for the swelling and some strong advil. Fast forward to Saturday I scheduled a visit to a podiatrist because of the ongoing issues. He immediately noticed the temperature difference in the feet, the swelling, and skin discoloration, as well as my distorted gate. He did some more x-rays just in case, nothing there either. He checked out my tendons ligaments, but in the end he was confident that it was RSD, and I've been on 30mg/day prednisone since then. I have another visit and possible referral for lumbar injection if the prednisone doesn't do the trick, and am thinking about possible looking for a ketamine treatment as well. I'm trying to stay optimistic but this is all really scary and hard to handle.

Welcome KeepMoving,

Sorry you have to be here! it is a great place for support. It is good you are treating symptoms early with the prednisone. I hope that helps you. FYI, coldness, color change and numbness do sometimes occur with ankle sprain - just Google "ankle sprain cold foot". This can be caused by nerve or vascular compression that has occurred because of swelling and or the injury. Swelling from injury can take a long time to resolve and nerves are persnickety little buggers that don't always handle pressure well. If you have not had a nerve conduction study or any vascular work up it could be worth pursuing. Don't wanna miss anything treatable that might be contributing! Welcome to the forum, you will make it through this.

Sending Healing Love,:hug:
Littlepaw

Needing support for 16 yr old with RSD Please!!
 

Hello friends. Please guide me...I am the Mom of a 16 year old girl just diagnosed with RSD, 3 weeks ago. I am beyond frustrated and so scared! I live in the Midwest, and so far I have mixed messages and nobody seems to know for sure what I should be doing. I have read many things (conflicting) I have called the research center in Florida, I am talking to a Neurologist that diagnosed her, but admits she knows little about the disease. My daughter injured her right hand 2 years ago playing softball, we went to 9 doctors over a 2 year period before getting to where we are now. The pain has moved from her right hand, to her elbow, to her shoulder, and now she complains of headaches, and eye pain only in her right eye, with some blurring. Her hand turns a bluish color occasionally and swells some. I just got off the phone with the Neurologists PA, the Dr. tells me that the eye pain and pain in her head are not associated with the RSD. How can this be?? It's only on the right side of her head..as all other pain is on the right side. I have read that early diagnosis and treatment is beneficial..what treatment? What should I be doing?? Please help me.. I feel so alone and scared. I want to help my child, but I don't know what to do, or who to turn to. She is currently only using a pain medication rub that seems to help the pain some. We are talking about putting her on an antidepressant for the nerve pain. What can I do to slow progression?

Hi all, new to the group. A little background severely broken right fibula and ankle back in 2000 have had 2 surgeries to repair the damage, ended up with a screw inside my right ankle to hold it in place and a plate and screws down the fibula to re-aline it. Due to a 6 month span between surgeries (stupid idiot doctor) i suffered quite a bit of nerve, tendon,and muscle damage to the outer portion of my lower right leg. Now 15 yrs later I am suffering with tremendous amounts of pain on a daily basis. After months (since November ) of going from doctor to doctor trying to get answers I'm finally told I most likely have CRPS. Yea I did the double take and the you've got to be kidding me, this is just some made up crap right?............. well needless to say I went home and did my research and whoa! Now I'm scared. So everything fits the swelling and tenderness and redish purple spots. So while on my journey to this diagnosis I also discover through a bone scan that i have a fracture in the heel of my left foot. Yes I'm devistated, I have a 19 month old lil girl that I stay home with and here I am can barely walk. I already suffer from major depression and anxiety and this really doesn't help, added to that everyone thinks I'm making all this up. All I can do is say really? Do you see my leg, ankle, and foot? Do you see how swollen they are? Do you see the red and purple patches? Do you see the tears running down my face as I try to walk? But still no one helps, they still remind me how much I need to be outside running around with my daughter, or taking her to the park. Ugh I just break down at that point. I start going to the pain clinic next week but it's my understanding that once the skin has tightened there isn't much chance of going back. Plus the doctors around here treat me like the plague due to me being obese (on a bariatric surgery waiting list) and on state assistance. Yep I've had 2 count em 2 orthopedic doctors send me walking out of their offices refusing to treat the fractured foot. Sorry if I'm sounding really sarcastic or just rude, I'm honestly not trying to be either. I can only take my meds at night so when you combine pain meds with anxiety, depression, anti-inflammatory, and migraine meds I get numb. Minus the pain that is still there. So anyone here living with CRPS and young kids. How do you cope?

I think the first thing you need to do is find a doctor who knows more about treating RSD. Generally neurologists, pain management, anesthesiologists are who people see for RSD treatment and management.

I'm guessing the antidepressant the doctor is talking about is Cymbalta. I'm not sure if it is recommended for someone her age. I do take it and have for years. It does help with the burning nerve pain for me. There are no RSD specific drugs. But many different drug combinations that people use. It is a trial and error finding what works for each person.

My Story
 

Welcome SkyDiversMom. :Tip-Hat:

Welcome!

I thank God have not yet required another surgery on my CRPS foot, although I see a bunion in my future :(.

Your doctor may be able to give other med options pre and post op that might help. 900 mg of neurontin is now recommended to be given right before a procedure to help stave off chronic pain and the antibiotic minocycline is good post-op as it keeps the glia in the dorsal horn calm.

hopefully it won't come to that! Sending Healing Love, Littlepaw :hug:

Introduction
 

:grouphug:
My PAIN BURNING FATIGUE Medical Mess!
April 2015
Bambi Tuckey
Poconos, PA
60-years-old
Birthdate: October 31,1954

The Norco and MS Contin enabled me to at least do some things. I am waiting for my divorce settlement to buy things I need for my pain, etc.
Tests: MRIs, EMGs, EEGs, Cat Scans, etc.!!!
Diagnoses:

Still waiting for my RSD/CRPS diagnosis!
Neuropathy Burning weakness 2006-date
Diabetes controlled2012-date, but not this month cause of Prednisone
High Blood Pressure Controlled 1992-date
Rheumatoid Arthritis Fatigue Pain Burning Damage, Stress causes flares 2006-date???
Psoriatic Arthritis Fatigue Pain Burning Damage 2006-date???
Osteo Arthritis Knees Damage 2010-date
Brain Lesion 1996-date
Migraine Disease Pain Burning Nausea 1998-date
Depression 1970s-date
Anxiety 1980s-date
Phobias Interstates High traffic and speeding Heights 1990s-date
Varicose Veins 1990s-date
Sjogrens Syndrome DRY mouth Lips Nose 2012 - Lost teeth 2014
TMJ BURNING PAINFUL Ears and jaws
Non-Allergic Rhinitis Stuffy burning nose inflammation dry sinus infections bronchitis laryngitis 1992-date
Herniated L and C and S1 discs 2012
Lung Nodules From 2013
Vitamin D Deficient and High 50+ESR 2012-date until this month cause always on Prednisone and Humira injections, but stopped injections cause they weren’t working.
Possible Wegener's Crusting nosebleeds burning swelling Sinus infections via Pulmonologist 2014, but rheumatologist should be treating it. ALL autoimmune diseases do not always show in blood tests.
T6 Sclerotic Density 2013-date
High Chlolesterol 2014
COPD
Depression
Anxiety


Symptoms:
Pain, fatigue burning FLARES
24/7 Chronic Pain, Burning,Fatigue in back, legs, calves, head, mouth, gums, feet, hips, jaws


Surgeries:

Same day hemorrhoid cut and drained 1975 I did a lot of heavy lifting at work over the years.
Emergency surgery severe burning and not able to urinate Abcessed Rectal Fissure Fissurectomy1983
C-Section April 1993
Hemorrhoids removed Prone position (no idea why that position!) April 2012 This is the one that caused my chronic pain 24/7 that has never left!!!After healed stopped prescribed Percocet, went to stand up from bed and screamed in pain from back legs feet April and May, 2012 I was walking on the sides of my feet!!! Tried walking 2 blocks to pool in summer w/ my daughter Had to stop every few steps and bend forward I also felt like I had ACCIDENTALLY did a split as the pain RIPPED through me!!! Taking OTC Ibuprofen like crazy More nerve testing atGMC Wilkes Barre Damaged nerves in legs feet Prescribed Nabumetone highest dose helped just a bit
Prescribed Lyrica did not help
Massive Oral Surgery Sjogrens Syndrome diagnosed too late to save teeth Dentist made beautiful dentures that I can barely wear.

Episodes/Accidents

First Migraine hot summer day frightening burning in head and nausea, walk/ran home and stayed in bedroom for 2 days with fan 1963
Massive Non-Allergic Rhinitis 1992-date
Car Accident Broken Clavicle Winter 1998
Had to have my teeth extracted in May, 2014 and my gums still BURN!
Hand went crazy Swelling RedBURNING had to sit still and keep it on a very soft pillow for a few days Rheumatologist tried injections that did not work and said he never saw anything like it Primary tried injections no improvement Social Security approved my SSI within weeks 2008
Nose issue! Could not breathe through nose crusting inflammation, sweating, HAD to leave LR windows open @ 20 degrees outside! Winter 2012
Walmart cold and windy food shopping back at home crying and praying for days and nights withTERRIBLE Pain Burning in my legs, feet hands 2013
Whole head tight burning Felt like a pin could pop it No stroke Summer 2013
Walmart parking lot, cold,windy waiting for bus When I got home my legs, back and feet were in so much pain and burning. I stayed on the sofa and cried and prayed for 2 days. Winter 2013
Hand got injured on bus PMC ER Xrays diagnosis “Hand Injury unspecified” Palm turned blue Spring 2014
Last back injection (November, 2014) swelled my right leg and foot double in size, extreme pain and burning, turned different colors (red, blue)


Norco 10/325 3 a day, now switched to Percocet 10/325- 1 every 6 hours, doesn’t work well.
MS Contin ER 15mg 1 at bedtime, no more
Metformin 1000mg 1 AM and 1PM
Glipizide 5mgAM PM
Lipitor 40mg 1 a day
Spiriva once a day, No more!
Qvar 2xs a day
Vitamin D 50,000mg 2Xs aweek
Humira Biologic injections40mg 1 injection every 2 weeks ( brain lesion/ on watch for MS), No more!
Effexor ER 150mg (But I think it’s making my Diabetes worse)
Xanax 0.25 3 a day
Exforge 10/320 1 a day
Guanfacine 2mg 1 a day
Chlorthalidone 25mg 1 a day
Prednisone 5mg 1 AM and 1 PM, sometimes
Protonix 40mg 1 a day
Arava 20mg 1 tablet daily (chemotherapy) Which I REFUSE to take!
Etodolac-400mg a day

Over the Counter Meds
Claritin 10mg 1 a day when needed
Nasogel everyday
Carmex everyday
Biotene mouthwash and gels everyday

Meds I can NOT take or that doesn’t work

Nucynta
Lamictal
Neurontin
Methotrexate
Seroquel
Topomax
Wellbutrin
Lyrica
Butrans Patch
Can NOT take antipsychotics
Anti-inflammatories- massive nasal issue! But I have to 
Muscle relaxants do not work and make me too tired

Things I hate to do because it causes PAIN AND FATIGUE!

Talk on phone
Take care of teeth/dentures
Go to stores
Ride the bus
A lot!

Losses
Car
Job
Cake Business
Newspaper Stringer
Social life
Access to things I need
Swimming ALWAYS went swimming from 7-years-old! 2012 only ONCE! 2013 only ONCE cause water too cold! 2014 not at all!!!
Aqua Therapy-Can't afford it even with payment plan
College NCC fault! Spring Semester 2014 They revoked my state grant and I couldn’t concentrate with so much pain!

I can not ride the bus all the way to Allentown for physical/aqua therapy. The place close enough to where I live doesn’t take Medicaid
My divorce settlement will allow me to afford a half decent car, That is not at least until May and I had to ride a bus all the way to court in Ohio on December 22, 2014

I have 3 grown kids. My son is 43; was in Army, officer, Iraq, etc., older daughter is 39, my youngest daughter is 22 and Autistic (Aspergers), lives with me and is so great! We have 4 rescued cats. I miss doing all the things I used to so much. My parents have passed on. I have 2 brothers.
My whole life is pain! 

Hey guys I just joined this page, Ive been looking for people to talk to that can relate. I am 21 years old and was diagnosed about 6 months ago. It started in my ankle but now its my entire right leg. I have tried many treatments, and now am looking for alternative ideas, or just support form people who understand. :)

I understand that, my doctors just told me to go read about it online when they first diagnosed me, didn't even really tell me what it was

Hi Diane,
I totally understand what you mean about the meds. My grandma calls constantly and tells me she's afraid that "my heart is going to stop" or that I will become addicted. Its hard to get them to understand that I have to take these meds to be able to function. I think there is such a stigma around pain meds, and my other meds give me some unwanted side effects. Hopefully one day our family members will understand!

I am sorry to hear this! I too have it all over and now I too have Asthma! I have noticed my heart acting "funny" lately and do have seizures now too! I have read all of the symptoms and areas that are affecting people here and found out things I didn't even realize were RSD/CRPS were! So we all are here together to learn and support each other! I DO understand EVERYTHING you are going through!

RSD Survivor ABANDONED!!
 

I am 62 and have had RSD/CRPS for over 20 years. I fell at work and compressed/ herniated all my lumbar disc. I was bedridden for almost 6 months until I found an RSD specialist. He had me up and active and actually functioning human for the past 18 years.
I was able to take care of my husband who is presently rehabbing from back surgery. He is due for a left hip replacement and then a right knee replacement. We also are raising our 7 & 9 year old grandchildren.
But this is all in jeopardy!!
As my Dr retired but not before training an associate to take over his practice. Well this Dr gave me A 90 notice that he was shutting down his RSD practice and moving across country ( Fl. To Az.) To open a clinic in a different field of medicine. That was in Nov 14 and the only Dr I have been able to find is a "pain Dr"
She refuses to even discuss my pain management that has worked over 18years. Instead she will only prescribe a 4 Butrane patch 10 mcg/hr. a month instead of 300 .03 mg Buprenex inj a month. Also I have been taking 740 Baclofen 20 mg now I have 30 10mg @ month.
This has led to being in the ER on 3 different times in extreme pain,high BP to the point of almost stroking.
Several RSD symptoms have returned migraine,burning/pain in both legs,extreme sensitive to temp changes, inaibilty to stand for more than a couple of mins w/o having to lie down. And forget sleeping more than an hour w/o waking from the pain. I have also lost over 60 lbs along w/severe atrophy in both legs.
I haven't had these problems in years.
The last time I tried to discuss these problems with the "pain Dr" I asked her what happened to "doing no harm!" I was quickly informed if I was if I wasn't happy I could find another Dr.

I am trying!!!! I just hope I do before its too late for me and my family

Newly diagnosed
 

It has been a long journey for me but after 25 long years I finally have a diagnosis. I finally got diagnosed yesterday with CRPS. It is actually a relief to me to know what has caused me all the pain I have been suffering.

For years my ortho doctor suggested I go to a pain clinic to manage my pain. For years I declined as so many of them only hand out pain pills and send you on your doped up way. Rarely does someone find one that actually tries to fix the issues.

A few months ago my back issues got so bad I went to a spine doctor to see about surgery. He said I would greatly benefit from a spinal cord stimulator. He sent me to a pain clinic for the trial one to be inserted.

My appointment at the pain clinic was yesterday. All of a sudden the doctor popped in all smiles and said he wanted to talk about my leg pain. I informed him I was there for my back not my leg. He then told me he thought he could take care of both at once. That peaked my interest as I had lived in severe pain with my leg for 25 years.

He proceeded to ask a bunch of questions and then touched my lower leg and asked if that hurt. I said hell yes it did. He then told me I had what was called CRPS a rare disorder. He went on to tell me what is was and what he could do for me to solve my pains.

His plan of attack is as follows. First he put me on Gabapetin. Next he is planning on doing 3 nerve blocks and then put in the trial spinal cord stimulator.Due to mine being so old since it first started he said there is little hope the nerve blocks will actually work but with my insurance they are needed before the spinal cord stimulator.

I finally have hope! Hope that maybe I will be able to ditch my power chair and walk again!