New to forum
 

Hello everyone,

I am new to the forum. I injured my shoulder in July 2011 and finally had surgery on it in February. Three months following my surgery I was diagnoised with RSD. The RSD has moved from my shoulder down to my hand. I also believe it has moved towards my neck. As of Thursday I had my first nerve block. I have attended PT throughout my recovery and continue to do PT three times a day at home. I taking prevenative medicaine for chronic migraines already. They currently have me taking Gabapentin, Norco, Mortin, Lunesta, Cymbalta but this is not managing my pain level well. I was hoping to get some suggestions from the group of what seems to work well with them. My care has been turned over to a Pain Management Clinic. Attached are some pictures of the affected limb. Thanks for your support and advice.:eek:

Welcome Orrwhat
 

Welcome to Neruo Talk. I am sorry to learn of your RSD. I am in the same sinking boat too. Glad you found this forum. You will meet so many nice people who may be able to help you find some more help... I went to a kind of doctor I never heard of before, a physiasist. She is a pain specialist, with this other additional education. I was prescribed this lotion, that does hurt to rub in because of the RSD, but it helps. It is made from a mix at a special pharmacy. Maybe ask your pain specialist about it....Ketamine/clonid/ Gabp/./IMIPR/Mefen. Doesn't smell, but like I said rubbing it into skin that already hurts isn't so much fun, but afterthis I get some good relief. In fact more than a narcotic. I have been allowed a narcotic, but don't have to take them with this lotion as much. YEH!!!!!! I also didn't wear my shoe in church, but they didn't care....I do wish you all the best, and I hope the pain is less for you with each day. ginnie:hug:

Hi all! My name is Tara and I'm new to all of the RSD stuff. I'm a married 35 year old homeschooling mother of two children (ages 12 and 5 1/2). My 12 year old is also has a chronic kidney disease and has had two kidney transplants and will be having another sometime in the next year or so. My husband works a high stress job, so some of that is passed on to me... I know how much they say to keep stress to a minimum, but with my life, it was hard enough just to deal before the RSD diagnosis... It's even harder now.

I had a slip and fall back in March 23, 2012. I was first diagnosed with a severe sprain and strain. I was told that I should expect to still have pain for quite a while.

Four months later, I was still using a supportive brace, had some problems with temperature, pain, swelling and discoloration. I returned back to the orthopedic doctor, who noticed the color change and temperature difference. He referred me to a neurologist.

I saw the neurologist last week and I had a nerve conduction study and EMG. He was testing for both tarsal tunnel syndrome and secondarily for RSD. They were optimistic that it was tarsal tunnel.

Unfortunately, I have been diagnosed with RSD. I have pain in my foot, ankle and leg. My temperature difference from one foot to the other is six degrees Fahrenheit.

I'm awaiting my appointment back with my orthopedic doctor.

I'm currently taking Cymbalta (30mg), Lortab (7.5mg), and Flexeril. I also take Aleve each night to aid in my pain relief for sleep.

I'm new to the whole thing, so I'd love to meet some others who have been dealing with this. I know RSD affects each of us differently, but to know that there is someone else out there like me is reassuring.

(((hugs))) :hug:

Sorry hun I live in Kentucky. No support here either. I have had it almost 4 years and still drs look and say what does that stand for. Feeling your pain.

I am new here. Have been diagnosed 3 1/2 years. Kinda tired of doctors hospitals and being in bed. Need all new friends now none of the well ones come around or call anymore. Cheers

Tara,
Its the people that are suppose to know whats going on with you that don't that is more frustrating than anything. But you are gonna be strong enough to deal with them. I am 37 and have 3 grown children that have started taking care of me, so my hubby can work. Just keep praying. And I will pray for all of your family.:grouphug:]

Hi Tara and welcome. I have a very similar story to yours. My injury was in April/May of last year. Husband in a very stressful situation which resulted in me worrying about his health. I hurt my foot and was in a boot for 3 month. My orthopedic surgeon diagnosed my crps and sent me to a pain anesthesiologist. I had 2 sympathetic nerve blocks that were minimally if at all successful.

What has helped is my medications, getting enough rest- which lately has been difficult- aquatherapy, seeing the appropriate doctors (some were bad, some were good). Have the right doctors is SO important. I travel 2-1/2 hrs. to see a doctor who specializes in crps. His office sees 4-5 crps patients a day and they come from all over the country.

It sounds like you're at the beginning of this journey. You've been diagnosed rather quickly which helps your odds of remission. There is a lot of information here. I have tried to read it all and pick out what could possibly help me. Read as much as you can about this disease. It will help you.

Again, welcome.

Hi Tcoop
 

Hello Tcoop. So sorry to hear you must deal with RSD at a young age and with kids. I am older, so my responsibilities are less. My foot too began with injury, then two surgeries for ganglion cysts. At first they though PN, then RSD. I am new to it too. Only about 6 months. I do understand the pain of it and what you must feel trying to do all the right things by your children. I went to a new kind of doctor I had never heard of before seeking more pain relief. She is a pain specialist AND a physiasist. Most on this site had to look up this kind of physician too, and never heard of it. She deals with the whole body, not just the pain. I have a rub on that works good. Can't say it feels good rubbing the stuff in for 1-2 minutes, but the relief after is good.
It is mixed by a lab. Ketamine/clonid./GABP/ .ImiPR/ Mefen. I was skeptical, as I do take some narcotics. This really helps me. I do wish you all the best as you try to go forward. I hope you have less pain today. ginnie:hug:

Long lost
 

Hello, I only found this forum today but skimming through it I already feel welcome. I had a partial amputation injury as a child to my ankle foot and leg and have wrestled with mobility and pain management on my own ever since (close to 30 yrs). I had never heard of crps until a few days ago. Looking back I believe I have often struggled hard enough to maintain the ability to walk and hide any limp that it was put into remission. As my frequent stumbles have increased their surprise attacks on me and have managed to make themselves become falls I've gotten very scared that I can not improve my leg alone. I do not have a crps diagnosis other than knowing the pain I have felt has only been described accurately by crps sufferers. Anyway thanks for reading hope people are doing well today best of luck in your efforts!

Welcome to the forum. Sounds like you have been through years of pain and suffering. Mobility is always a struggle. I to have ankle and foot crps. Now in both feet.

Please feel free to post responses, rant, rave, or whatever you feel and welcome.

:welcome_sign::welcome_sign:

Thanks for the warm welcome, and while I feel remorse for anyone feeling what I feel I can't deny wishing others existed that know my hell. Maybe it has more to do with feeling alone with a foot on fire but no smoke or perhaps it is a resentful response to suffering and being told "deal with it or we'll cut it off" but either route still leaves the guilt of hoping to talk to others that know.
I obviously have pain from the original injury but have never wanted sympathy or even for others to know I had been injured and so never had a team for the pain, only surgeons that performed a half dozen fruitless surgeries. Wincing in mid conversation makes it impossible to hide at times, as well as the stumbles and trouble with hiding a limp so I've mentioned the problem far more than I've wanted. Especially to myself. Told myself I deserve the pain, that I'm weak for it to bother me so much, that I'd be better off amputating it, and eventually got to a place where I was able to decide that feelings do not matter.
I hid the injury from myself and the world until a couple years ago when I was forced to admit to myself that it is getting worse. Now it seems it's all I can think about or talk about so I am sorry to go on and on but be assured I am trying to keep things concise. I am just really happy to finally be among people that carry the same burden or support others that do. I appreciate your care for one another immensely.

Hello to new folks/new med for RSD
 

I just wanted to say hello. I do have RSD in ankle and got a new lotion from my physiosist. This has reduced the need for medication to where I can cut down. I never thought there was something that would work. It is a mix from a pharmacy that origionally an orthopedic surgeon wanted me to try. Hurts to rub it in, but afterwards the burning eases up. If anyone wants to know what it is:KETAMINE/CLONID/GABAP/MIPR./MEFEN/ACID/TETRACAINE (5) 2/6/3/3/2%CREAM I was very happy to find that this helps alot. It may be worth it to ask your doctors. I wish the best for all of you. ginnie

Hello. I have had RSD for about 9 years now...and after diagnosis I have tried every medication and hospital treatment available to me with little or no result. It's been difficult not knowing anyone else going through this and dealing with all of the losses that come with this disease alone.
Sometimes I feel like I can't handle living like this for the rest of my life...it keeps getting worse and doctors keep giving up on me...now I am on nothing for pain...and the level of it makes me feel ill and weak most of the time. Just talking about what I have been though would help me but it's been 9 years of struggling to find that. I am young but maybe my medical experiences would be of use to someone who is wondering about treatments.

Right now the biggest struggles for me are coping with the pain...the loss of enjoyment in life and being denied real friendships...I really have no one left to talk to about this and in 9 years I have never really spoken to anyone else with RSD. I can't talk to people my own age because they don't understand me and my walking and memory problems scare them away. Is anyone listening?

Hello Elsie, & all new members posting on this intro thread.
Please be sure to also post on the main RSD thread list section, members might not notice posts in this section.

We would hate to have you think no one cares. :grouphug:

On the main RSD/CRPS section you can have your own thread for hello's and sharing.

Here is the link to the main RSD/CRPS threads list -
http://neurotalk.psychcentral.com/forum21.html

and to make a new thread here is the link for that-
http://neurotalk.psychcentral.com/ne...newthread&f=21

Thank you very much, I wasn't sure where to start.

Hi Elsie
 

Glad you found Neruo Talk. A warm welcome to you. I have been here for about two years, and have met some really great people. I also have RSD in my foot, ankle, and calf. I have a lotion that really works, has five different compounds in it. It may be worth your time to ask your doctors about it. First ingrediant is Katemine. This blocks neuro pain. I cannot compair our different types of pain, I only know for my RSD this truely works, and has allowed me to drop some of my medications. It hurts to rub the stuff in for a minute, but it is worth the discomfort to have the relief afterwards. I can write out the total script and all ingredients if you are interested. I hope Neuro Talk and all the folks here make you feel at ease and welcome. ginnie

Yep Ginnie
 

I have that same cream, and it is good for the nerve pain aches which come from overdoing....... Glad it came into being!

Caring and caring,
Mark56:grouphug:

Hi Mark
 

So glad you have that cream too. For me it has been a real blessing. I have been sending the ingrediant list to others also. I don't care for rubbing it in, but it is worth the discomfort for the time it does some real good. I sure hope it works for you and for others. ginnie asap

New to the Group!
 

Hey, I have been diagnosed with RSD for one and a half years and I am 17 years old. I use to soccer and run for my track team. But in 2007 I broke the growth plate in my ankle, that was just the beginning of many casts , doctors, and pills to dull the pain. In 2010 I had my 1st ankle reconstruction surgery to take out bone what grew back in the wrong area, and to clean out the sinus tarsal, they put an implement in my joint so it wouldn't collapse. I was able to throw discus for one year but it was very difficult and I, honestly, sucked. At practice one day I twisted and the implement twisted as well, so 364 days after the 1st surgery I had my 2nd surgery, they took out the screw and cleaned out inflammation and anything in the way. I was casted, yet again and my hope by then was long gone. I was finally diagnosed with RSD when I got out of the cast and still had the issues, the pain, burning, sensitivity to the littlest thing and more pain. Every day was the same for the 2 years, now I am a senior and throwing through the pain, I have came to the conclusion that I am going to hurt even if I sit at home so why not do something I love. I can only do things for so long but I am proud to be able to do what I can. I lettered in track last year, a major accomplishment for me, i fought through so much pain. I am now using acupuncture and medicine, which only take the edge away if they even work. I have had many spinal blocks but they haven't helped like my pm hoped. I am in need of support and ideas for where and what to do. Noone around me knows what I am going through and I can't handle not talking about it anymore, it is difficult for me to talk about the issues that come with the RSD because, to people that don't have it, I feel like I just am a bother and they get tired of me complaining. Well, sorry for the extremely long post but I wanted to let everyone know about me some.

Welcome to Neurotalk. Inparticular, the rsd forum. I am sorry that you are going through this at such a young age. I to fell and crushed my ankle. I have had 2 surgeries and many lsb's.

Here you will meet lots of people and make new friends. We learn from one another. So I hope you enjoy your experiences here.

Hello im rhoda hope and i have rsd/crps in my right arm. The doctor has tried several treatments and is now considering a spinal cord stimulator. Has anyone else ever tried it and what was your results?
Thanks to any one who responds

Hi guys,

I've posted a few things on here but I thought I would post here as well. I'm Crystal and I've been battling RSD for the last two years. In 2010 I broke my ankle while at work, it was a silly injury and seemed minor in the beginning but looking back, my life has changed drastically. Since my injury I've 7 surgeries, one of them including a permanent implant for an SCS. Along with the surgeries, I have also had 7 Lower Lumbar Sympathetic Nerve Blocks in order to try and force my RSD to calm down or go into remission. Since my injury is surrounded by a Workman's Comp case, I've had to work around what they feel like is necessary treatment for me to receive. I feel like after two years, I still have many unanswered questions about what's going on with my body and I'm still undergoing changes with my RSD. I've already found so much wonderful information from reading your posts and I look forward to continuing learning and hopefully from what I've experienced I can help someone too!

rhonda hope,

Sorry to hear you have rsd. But welcome to the group. I tried a stimulator and the trial did not work for me, but many people have had good results from it.

Welcome I hope you find the answers you are looking for. Here we learn from each other, so if you have tried something and it has worked or failed please share your experience.

I too deal with workers comp and know your frustration. It is a constient battle. Just hang in there. God as a plan for all of us.

Guess I better introduce myself. You can call me PG. I've had CRPS in my left leg for 8 years now. Things have only declined over that time. Been through the ringer with treatments. I declined a SCS several years ago, but have now decided I'm going to try it. Currently awaiting insurance approval.

Welcome PG2005. Sorry you have been going through such pain the last 8 years. there is a scs site striclty for people who have or are getting scs. check them out.

Hi ALT.... Been a While!
 

Hi ALT, I am so glad to see you posting on new member introductions! What a profound ministry of sharing the blessing of care with folks! You are very active, and I am glad to find you here after missing you on the SCS subforum.

Hi Rhonda, CW and PG! There are answers to be learned from all perspectives of the approach to medicine and a possible alternative, if not as in my case substitute, to pill methodology to pain management. I have the Boston Scientific Spinal Cord Stim and have used it 24/7 now for well over two years, achieving full low lumbar and leg pain management with its electronic signature.

Numerous manufacturers offer alternative devices, and some even are used to inject medications directly into the body via a pain pump mechanism, many of which are addressed on the SCS and Pain Pump sub forum under medications and treatments found here-

http://neurotalk.psychcentral.com/forum118.html

Come on over and check us out by clicking the link to the master web directory of our threads! You will meet cool folks from all over and many paths of life who similarly seek answers to important questions while also keeping the eyes alert for a sense of HOPE.

You might even find us engaging from time to time in a virtual party or BBQ at Pooh's ranch in Nowhere up there near Somewhere Out There. We do have fun, and even are known to LAUGH.

Hoping to see you on the threads,
Mark56:grouphug:

Fibro & CRPS
 

Hi. I've been suffering from Fibro for something like 15 years or more. Three years ago, walking down the stairs, I got off balance (even though I was holding on) and went left as my left foot hit the last step. I sprained my ankle horribly...brought neighbor kids to the door with my screams. (embarrassing!)

The pain from my CRPS is getting unbearable. My insurance company is stupid. I finally got a wheelchair but no gel pad and sitting in it gets excruciating in my left hip. The pain's gone from my left ankle, up the leg into the hip. In the first year it's also affected my left arm but to a lesser extreme. It's now trying to go to my right leg.

I've been doing all the exercises I can to prevent if from moving. I used to use the Wii with my cane doing balance exercises but can no longer do that. I'm down to basic Yoga stretches. Meanwhile, I've gone back for physical therapy and the insurance company, again, keeps screwing up. I'm on an STS machine which they say they are having very good results with. But, it's a lot of visits and who wants to pay for that? They don't! And, I went 6 times, was supposed to get 6 more right away but they waited a whole month. I had to start over. They gave me the 6 again and I got 2 more visits lined up. The appeal will take a month. So, I have to extend my visits to only 1 a week and maybe pay for 2 more visits myself in hopes that I'll get more from the insurance. We are too poor for this.

Top all of that off (I didn't tell my whole story, that would take a book) my Father-in-law and brother-in-law on my husband's side of the family are dying. My x-sister-in-law is also dying. I didn't divorce her and she's been my very good friend for 31 years. Everyone is far away. I'm going to grit my teeth and go to my brother-in-law's memorial which should be soon since they expect him to pass very soon...waiting is awful. Then, I can also see my sister-in-law while we are south. I know it will wreck me for a good week or more but I have to be with them. I won't get to see my father-in-law, though. We just can't afford that. My hubby will get to see his dad one last time and I may have to sell some things for that but it's a must.

Sorry I wrote so much. *eek* I'm just looking for others who understand.
Thank you,
Jane AKA Lorax3

Welcome to the forum. I am sorry you are going through such a bad time with so many family members passing away in such a short amount of time. I can't imagine. I had a ankle injury which lead to my rsd and now I have it in both ankles. Worse in the right.

I am glad though to have you here at Neurotalk especially on the rsd forum. Here we are like an extended family; learning from one another.

Feel free to ask questions, rant, rave, etc. We have all been through our good days and our bad. Again, welcome!

Hi new here
 

Sorry, I posted an intro message about myself but not sure if it went to general new members or to rsd group.

I am Jenny - aka jpcrps - am just at the one year anniversary of the foot surgery which caused dx of crps. Prior to that about 2 years dealing with grinding pain in 2nd MTP of 2nd left toe, mostly due to playing tennis.

I seem to be having spreads which began with prickly burning but have recently turned into full on burning pain in arms, hands, both feet (as opposed to just the left foot) and thighs.

I have participated in another online group and am looking for a supportive community without draconian admin personality issues. I also host a micro support group online, which was set up by my husband to support my need to connect with others who have this condition.

Looking for friendship, mutual support, kindness and understanding.

Mahalo,
Jenny

Hi Jenny. I think you will find what you are looking for here. I haven't noticed any administrative issues on this site.

I too am at my one yr. anniversary of crps and I'm also having the spreads you describe. Some days I just want to crawl in bed, pull the comforter up over my head and stay there for days. But I know I can't do this.

Well, anyway, welcome to the group and enjoy searching through the site. I think you'll find quite a bit of good info if you search the past postings. Cathy

Thank you for the welcomes. I have tried many options and am hoping to be able to arrange ketamine infusions as "it" seems to be advancing and interfering with my ability to work.

Am going to surf into the forum a bit more and glad to have found you.

Love,
Jenny

New
 

I have CRPS from TOS, basically. Thin female with 8 yr history of computer workstation use at a fast paced job. Non-ergonomic workstation. Pain began with severe onset of pain in trapezius mm, levator scapulae mm area, Right side, then left side. Pain then "spread" to bilateral forearms with severe muscle/tendonitis, radial tunnel. Suffered and continued to work full time for 6 months because I did not have sick time off/employee benefits...until I became disabled. Had physical therapy with 4 different p.t.'s, had diagnostic exams which were all confirmatory for TOS (with vascular component). Finally saved up enough to have the surgery for TOS on one side. Am still disabled by pain and symptoms today, am now fighting with WC (which was obtained after a trial determined I was an employee) to obtain SCS for pain management.

Am really frustrated with battling WC for medical care and benefits! Worker's Comp is evil and responsible for prolonging my suffering and causing more injury to me.

If CRPS was treated earlier with Physical Therapy it would not have gotten so refractory. I knew something was wrong when my golf-ball sized knot above my scapula was "sweating" during sleep. I would wake up with 10/10 pain.

Now that I have had the rib removed, the hatchet knife is out of my trapezius, but I have burning, needles and boring, burning pain in my fingers, hands, arms, upper chest, upper arm, shoulder, below scapula, neck, up to ear. And flareups will knock me down with left sided pain. When the pain has been dialed down the best it can get to is a 4. And then even taking a short walk or drive will aggravate the pain!! My brachial plexus has a migraine! It is not living this life of pain.

Wow, sounds like a long haul of really bad pain. When were you diagnosed with crps? Have you joined the RSD forum? What kind of treatment do you have now? Sounds as though you are not able to work at this point with this kind of flare ups.

Really feel for you. I am only a year into diagnosis, but it is definitely life changing. Hope for the best for you. There are new treatment showing up these days between the ketamine and HBOT. Living in pain is NO GOOD!

Love,
Jenny

Hi Jenny, Cathy, and NER
 

Oh that road of Worker's Compensation can be so very long and ridden with many a hole, twist, and obstacle as all are thown up by a system which does not want to pay without making absolutely SURE of the necessity to care for an injured worker. I am one. It took 34 surgeries basically to reassemble the Humpty Dumpty I had been prior to the car wreck on I-70 which ruined my career by the way, changed life radically, and made me for many long years wonder whether active life was just OVER.

I had to have the assistance of an excellent Worker's Comp lawyer to pursue the claim. Nobody wants to pay, whether for surgery, aftercare, or the injury itself and the earning impact on the injured worker. My wife and I felt many times the system was evil, the companies were evil, the executives were evil, and we so wanted to be able to strike out. Staying the course was our chosed way of striking out at the insurance company. Ding Dang them all. We finally reached a place of success and there is now some provision for future care which may relate to my bodily needs. I just SO HOPE I will not need more surgery.

This care giving place is chock full of so many wonderful people who come up alongside and share experience, knowledge, hope for a brighter tomorrow, and even rants and tears with you as the path to pain management winds its long course down that road I mentioned.

I have found so much help and comfort here, I hope you will also find this to be a place of JOY for you just as I have by participating among all of us who need.
Prayers offered liberally,
Mark56:grouphug:

Hi Mark
 

The systems in place for our health are evil. I know a gal in DE in a wheelchair. Her health which was not addressed due to poverty led to a stroke. She is only 40 years old. She had tried to get dissability for 4 years.
This earth, is not run by God, it is the devils domain. People in positions of power abuse. Jesus will come again and set things right. I have no doubt about that. Then this earth can be run the right way, with us living as brothers and sisters, and taking care of each other.
I pray for his coming daily, as our world needs some help....hope your thanksgiving day was good. I said grace before a group who do not believe, or if they do, it is never discussed. After saying my thankyou for the food and company, I reminded that our first president concecrated our country to God, and that we should keep God first in our lives. I still don't know why prayer was taken out of our schools, and now off some of our coins. What is going on? I guess I just get frustrated.
I hope you had a good day today, and that all our friends on NT, had good food, and people to share this day with. I also pray your pain is lower today. Take care Mark, ginnie:hug:

Thanks Jenny, Mark and Ginny!

When I look over my medical records, the doctors were mentioning it in 2009. However, I had TOS surgery and then recovered from that, and then realized some of the pain in the forearm/arm/hand did not fully go away with the surgery. And honestly, after surgery, I have pain in areas that I did not have it in before, like my chest, neck and up to ear. The pain on the Left Side comes with activity, whereas the pain on the Right is there 24/7, but gets worse with activity too! And now I am having pain in my R thigh.

The surgery helped the most with the most severe pain in my trapezius, which felt like a hatchet knife. The hatchet knife really made me want to die! It is pain that you really can't live with for very long. I can't even bear to recall how bad the pain was, now. The surgery helped relieve the vascular issues, now I have a pulse in my right arm.

I think CRPS was confirmed after I had my 6th Stellate Ganglion Block. All of the SGBs that were in the right place were "confirmatory" for CRPS pain.

I am really hoping to get a SCS. I have never heard of a Ketamine infusion, but I use a compounded Ketamine/Lidocaine/Ketoprofen pain cream which really helps ALOT so I am going to research this!

Thank you all for sharing here what works for you~ It is so important to keep one's spirits up and to keep on trying to live a better life with less pain.

Prayin your Spirits Fly!
 

I even use some cream to topically address licalized pain when it manifests after a wild spree of overdoing [did I write that?]. My family will not allow me to overdo..... so I have to sneak it in. If SCS can be good for you NER, the trial is the means to learn. Prayin you will be well.
Mark56:hug::grouphug:

Hello, New Here!!
 

Hello All,

I'm Redraidermom! I am from Texas and am a newly divorced single mother of three amazing daughters. I was diagnosed with CRPS in May 2010 by a pain management doctor. I currently see my PM doctor and a psychiatrist for anxiety/sleep meds.

In 2000 I was in a car accident and injured my back. Then in 2009 I was in a car accident where C3-4-5 were herniated, thorasic 6-7 herniated, and some bulging discs in my lumbar. 3 months later, in December (right after Christmas), I had an accident in the kitchen. I got up at 3am to get some water, and slipped in a watrer puddle on the tile flooring, and slid through the kitchen, and used my right arm/hand to brace my fall on a door way. I snapped back, hurt some cracking noises, and fell on my back with my arm outstretched. I broke my right hand (which my PM dr believes is the primary cause of my CRPS), and tore the posterior labral cuff in my shoulder. The cuff tear has resulted in 3 cysts sitting on the suprascapular nerve (I think it's the nerve that runs through the collar bone). My Ortho Dr won't repair my shoulder right now bc the tear "frayed" due to physical abuse from my ex husband (he used to pull my arm behind my back), so I have limited range of motion in my right shoulder/arm. The tingling started in my neck initially, and then worked its way down to my collar bone, shoulder, elbow, and hand. Now, the tingling is in my face, jaw, and head, and sometimes my scalp feels like it's crawling!

My teeth became hypersensitive shortly after, and it often feels like an ice pick is picking away at my teeth. Due to this sensitivity, I lose 80 lbs in one year, and this is what led up to my diagnosis...The temp outside always affects my limbs, teeth, and everything else! I sweat a lot and get really cold, my hand has a minor atrophy, and my joints ache. I suffer from debilitating migraines...they are nearly constant and I get no relief. I used to take Elavil for them, however, due to weight gain, I tapered off that drug and the migraines have returned with a vengance!

I am in constant pain! My whole face, jaw, neck, and head tingle, zap, and shoot! The tension in my neck/muscles in that area cause major spasms! It is pretty nerve wracking! My medicine regimen includes:

Gabapentin 800 x4 daily
Tramadol 50mg x 4 daily
Advil 200mg x4 daily with tramadol
Tylenol Arthritis 650 mg x4 daily with tramadol
Zanaflex 4mg x 3 daily for spasms

In addition, because I suffer from panic attacks and anxiety, I take:
Xanax XR 2mg (24 hour release xanax)
Trazadone 75 mg at night for sleep

The gabapentin side effects are terrible. I am so forgetful! I have memory loss, confusion, i'm kinda clumsy now, and my thought process is much slower now. Most of the other side effects are no longer existant, but the memory thing has stayed for the long haul. I have taken Lyrica before, and It worked SO well, but bc It was so expensive on my previous insurance, I quit taking it. I have new health insurance now, so I think I might ask my dr to dc the gabapentin and start the lyrica in its place.

The migraines are hell. I am looking into topamax, and I see my pain dr soon, so I will talk with him about it. I HAVE to find something to help my migraines before I LOSE my mind.

So, that's me ina nutshell! My body feels totally WACK and I hate it! I wish the pain would go away! I am looking at getting back into PT for my neck and hand because it did work! I got divorced earlier this year and went through a huge financial and job transition, so I am still getting back up on my feet.

Hi Redraidermom!!!
 

A hearty welcome to you for braving the internet to come share among us. We all present a host of issues and LOTS and LOTS of pain to go around. Being a car wreck victim myself I feel tremendous empathy for you as the host of injuries you have suffered resulted in the pains impacting your body on top of the emotional and physical abuse suffered at the hand of your former spouse. Being Dad to a young daughter, I pray and I pray she will never know the trauma you experienced at the hand of your former spouse, for in my practice I have seen and spoken with enough in your shoes to know too many are out there who fail to engage brain before taking life out on their "beloved."

Definitely, among the part I can bring to the fore is willingness to pray all will be well. Pain management is a toll on the body in addition to the pain itself. Physical Therapy, especially if access to a warm therapy pool is part of the availability may bring help to you which is immeasurable as a means to gain on the pain monster while holding surgery at bay.

Prayin all will be well,
Mark56:hug: