Possible CRPS and the fight against pain.
 

Hello all,

In 2007 I had ulnar entrapment surgery of the left elbow. The surgery was successful in that the numbness and tingling in my fingers resolved, within 2 weeks after surgery pain began to build in this arm around the surgery site, the forearm and the hand. Along with this came tingling and then pain in my right foot, sometimes in all limbs but mostly the left arm where I had surgery and the right foot. Pain got so bad to where it became difficult to function, walk, etc. My surgeon said he had no idea and sent me on my way.

So now I started a quest to find why I had hellish pain in these limbs, along with pins and needles, skin color changes, skin mottling and temperature changes.

One doctor said it was Lyme disease and I ended up on antibiotics for 2 plus years. I was also diagnosed with MGUS which is a blood cell disorder which can cause neuropathic pain as well.

But after all these fruitless searches, it seems like CRPS to me.

So hear I am off and on taking opiates for chronic pain
I have read that CRPS and related pain is the highest on the chronic pain scale and I believe it, since the pain has left me crying at times, curled up in a ball, and at times feeling I could black out.

Opiates have done the best for my pain but I hate the side effects. Strenuous exercise also helps along with very hot water, but not always. None of these help when I am working at my desk or trying to sleep, so only opiates have helped give me a life back. I am not trying a natural plant called Kratom which is helping some.

Does anyone have advice on where to get a diagnosis of CRPS and treatment? I hear there are specific IV treatments that can help. I hate living on pain pills, but right now I have not found an alternative. I have tried every alternative you can imagine. My weight is good, diet is great, I am a health nut, tried Asian medicine, massage, you name it.

Looking for thoughts or suggestions.

Thanks,
Rich

Hey; I was diagnosed by a Neurologist; I wish I would say that all that you are doing plus what I, we are doing is going to be enough...some days it works and you will be on top of the world; other days, what has been working just doesn't and you feel like an anvil is falling and you just can't step to one side or the other....here is a great support;
We understand; we listen and sometimes we give our stories; It's a crazy thing this monster living within us;
Today, mine seems to be resting after a week of mischief;
Keep up the fight......:grouphug:

Hi Rich,
We have a very active and informative CRPS Forum here

http://neurotalk.psychcentral.com/forum21.html

Where the wonderful Members will make you welcome and be able to give you advice. So sorry you are dealing with these frustrations.

Dave.

Welcome guitarguy. :Wave-Hello:

Rich,

Yes yes yes!!! You could almost be my twin!
Where to get the diagnosis? Good question! From all I've read it would be Drexel University Neurology in Philadelphia, PA or Cleveland Clinic in Ohio. There may be more places that I'm not aware of. I will bet dollars to donuts that you DO have RSD/CRPS. Whatever you do, do NOT have ANYMORE surgery or ANY injections/procedures! Those things WILL make it worse! I'm STILL waiting for my diagnosis but I believe my current spine/pain doctor now believes I have it. He has refused ANY injections after he did one. I've had others by idiot PM and they got rid of me because I told them the injections were burning down my leg And then they were NASTY to me as well. I am losing my wonderful spine/pain doctor at least for a while because I lost my half decent ins. from a bitter divorce and courts not caring. I go to my spine doctor tomorrow for my last script of Percocet, which only takes the edge off. But I am scared to death of the pain next month! :( MedicAID is a joke for this around my area. I got my SSI disability in only a few weeks years ago when I sent them photos of my hand. I lost my job, cake business and car because of all this burning pain! And we have NO water therapy AT ALL even 20 miles away! Mine never went away after a minor same day surgery in 2012 to have my hemorrhiods removed (sorry). One diagnosis after another! And now I look like a freak! Before I knew any better about surgery I had a root canal that made my whole mouth on fire! The ins. co. thought it was because I had a lot of dental work over the years and would ONLY pay to get my teeth extracted!!! Nothing else! OMG! So I thought that would stop this burning pain. WRONG! It is now worse and so bad that I can't even wear the dentures and eat properly!!! :mad:

Hello Guitarguy,

So sorry to hear your story. There is a starting list of CRPS doctors at http://crpspartnersinpain.com/?page_id=1436
It sounds like you are doing many of the right things to care for yourself. Keep up the good work. I do advocate being careful about your exercises in that some repetitive actions can aggravate a nerve and cause neuritis. I thought I had CRPS spread up my leg but it was in fact a neuritis caused by the recumbent bike and improved when I changed my routine. One less thing to worry about is good. Also Are they sure you didn't re-entrap at the surgical site? You wouldn't be the first...

I hope you find relief soon,
Littlepaw :hug:

I was diagnosed at a pain clinic without having to travel anywhere.
RDSHope and RSDSA are additional resources. Best wishes.


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Hi guitarguy, I have CRPS 6 years ago, mi life was broken, now I have more complications for bad doctors in my way. But there is one Dr. in Monterrey Mexico, this Dr, was recommend for Dr. Antony Kikcpayrick of spacialust in CRPS in Miami. I was treatment with Ketamine and now I have more quality life. I can to do Fisioteraphy, dont cant because my legs have atrphias, etc. This Dr. See people of the New York, New Zealand, Melbourne. Now he has a new treatment autoryzad for FDA the medicament is neridronato de calcium., in Eurpean used 3 years ago with results magnificience. My life is another , Have with CRPS, BUT I HAVE IMORE QUALITY LIFE.


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In Monterrey Mexico there is the best Dr. Of CRPS, he treatment with ketamine and the new medicament Neridronato of Calcium, this use in Europan in Milan Italy 4 years ago. In Usa THE fda authorize . Please my life is another, see the information, in Miami with the Dr. Anthony KirckPatric.


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Welcome macorcobo. :Wave-Hello:

Hi,
You have a classic case of spontaneous CRPS spread. I bet you have had other pain issues before this happened? http://www.ncbi.nlm.nih.gov/pubmed/21331457

never
 

I have never had pain issues prior to the ulnar nerve surgery.
I have had plenty of other surgeries for injuries and sinuses, but never a lasting pain issue.
My pain management doctor doesn't think it is CRPS cause it is not progressing, I don't have swelling and some other symptoms so he continues to say it is pain from MGUS.
I know like it was yesterday that my symptoms started within a week of my elbow surgery including the foot pain and discoloration.

I was treated for Lyme disease and confections to rule that out.

Hi guitar guy,

I am sorry for all you have been through.

I had a subcutaneous ulnar nerve transposition. I think that's the surgery you also had?

Weird things had started to happen after the surgery.
Pain was spreading everywhere. BOTH hands and arms and my right foot were a mottled purple color and were swelling. I did have prior pain issues, yet this made it all worse. 3 doctors gave opinions and were concerned I was getting CRPS/RSD.

They had instructed me to desensitize my limbs, using sand paper or other similar tools, along with massage. I worked on my hands and feet with various textured clothes, with various levels of pan scrubbers, with a very soft brush, etc. In time, the mottling and swelling had reversed. Lucky me.

Even so, things have never been the same, The severe swelling started in my feet and the pain has been just excruciating. Another M.D. then told me I have RSD in my feet. I really don't know.

I have other conditions which can inflame feet and all limbs, so it gets confusing in my case.

I'd wanted to let you know the surgery I had for ulnar nerve entrapment had also started some kind of spreading pain and swelling, mottling, etc.

I hope you can find answers and relief!

To Our Healing!
DejaVu

New to here and having CRPS2
 

Hello Everyone!

My name is Raechel and I live in Washington state. I was diagnosed with CRPS 2 this week and needless to say my life is in shambles. My children are being denied the ability to live with me because I am on Opiates for my pain. Yes you read that correctly... my children are not allowed to live with me because I am on pain medication. (so says the state of washington)
On and off for the past two weeks I have had these what I can describe as "flare ups"?
I guess I should start off with I started having symptoms last July, 2014 after a 13 mile hike in the mountains with my now husband. My pack on my back only weighed less than 25 lbs i think it was 24lbs to be exact. I DID NOT wear my hip strap and this is where i am told I made my mistake. I came back from that hike and I have never been the same. I was finally diagnosed with a brachial plexus injury to my right shoulder, with a 25% loss of nerve function diagnosed using the painful EMG test. My injury has now turned into CRPS type 2.
The pain goes up and down in severity, is a 10+++ at its worst!!
But the last two weeks, my skin on my hands is peeling? and getting worse everyday.... My pain meds are not touching the pain at this moment, and every second of typing is making it worse, the numbness and pain. My symptoms have now spread to my left shoulder and my right hand turns colors... mostly blue.
Am I the only one that has the skin flaking off and such? I feel as though some of these symptoms do not even apply to a nerve injury! lol. It makes no sense to me!
I AM SO IN NEED OF SUPPORT AND REASSURANCE! THAT MY LIFE WILL IMPROVE! I AM LOSING HOPE AS THE DAYS GO ON... that i will lose my children and my will to live... I feel like this is so unfair and i didnt ask for this disease!!! so not only do I have to learn to live with it, because of the pain it causes I have to learn to live without my children as well and that does not seem fair!

Rachel, Welcome!
 

Hi Rachel,

Welcome to Neurotalk! :)

I am VERY sorry for all you are going through!

It does not seem right that Washington state would take custody of your children simply because you are using opiates for pain control.
I hope you will be able to acquire adequate legal representation in the child custody issue(s).

Rachel, you might get more individualized support if you copy your post above and start a new thread just for your own story. Just a thought.
You have a unique situation. :hug:

Glad you are reaching out!

Warmly,
DejaVu

Hello and welcome to the NeuroTalk Support Groups.

Just leaving you the link below to the

Reflex Sympathetic Dystrophy (RSD and CRPS) Forum

Check out the "Sticky" threads at the top of that forum too if you can. There are links to useful websites and other information that would be helpful to you.

Post an intro on the main forum and I'm sure the members there will be able to offer you support and information regarding your new diagnosis.

all the best.

Have you had any expert PT at all?
The BP injury & the backpack factor, sounds very similar to thoracic outlet syndrome. (TOS).
We have a TOS forum with info and also passive & self care things to try..
Sometimes consistent and focused posture work is very helpful.. But if it is nerve pain due to impingement it won't get better with meds and no treatment.
http://neurotalk.psychcentral.com/forum24.html
Check the useful sticky threads above the main section ..

If you can find some pain relief for the BP injury maybe the overall pain level will lower..
Some w/ TOS injury do get RSD/CRPS also... and some of the symptoms can overlap..

And many MDs are not fully up on TOS info, so almost need experts - PT /chiro or TOS doctors for best treatment.

I have no life. I don't want to be here anymore. I am contemplating having my left arm and right foot amputated.
Today I trued to workout but I feel like my feet are broken and burned and get icy numb. My left arm and hand turn purple and ice cold. I can bend my arm joints much and even tapping on my arm is horrible, horrific pain.

I need to find an expert in or near Philly, Pa.

The only thing that worked is Nucynta but my family was not happy with me taking it so I stopped.

I'm so sorry to read how bad your pain has become. :(

I'm not sure if you have CRPS or not but please post over on the

RSD/CRPS Forum

as I know there have been past posts/threads about amputation and considering the nature of such surgery, it would be best if you could investigate every single alternative before making a decision... just my thoughts anyway.

<< edited to add: Sorry, I didn't see that you've just posted there earlier. That's a good place to ask >>

Have you tried Low Dose Naltrexone? I have Small Fiber Neuropathy and it has been very helpful for me.

http://www.ldnresearchtrust.org/cont...deep-chopra-md

http://www.ncbi.nlm.nih.gov/pmc/articles/PMC3661907/

Does anyone know if taking an herb like Kratom can then cause a medication to stop working? I just switched back to Nucynta today after taking nothing but Kratom for months and the max of tramadol for a few weeks. First dose of nucynta and the pain is still hell! :(
Maybe Tapentatol has to build up?

...second dose and still nothing. In the past it always worked right away! :(

This made my soul cry out I am so sorry
 

Dear friend
I haven't had the chance to start at the beginning of this
site
When you wrote that your state took your babies
Your children from you makes me so angry and ever so sad
children look for their mommy no matter what

This place has helped educate me on so many levels
Their experience strength and hope

The hope you find a cure
or even the right medications to help
releive the pains

There is a two part for myself
I am on a mechanical level screwed
I am also screwed out of the neurological pain
that consumes my entire body
Espically my right back
Hands and feet
Some funky stuff happening
In medication forum sub:SCS
Unexplained stuff new crap
But very scary and disturbing
When I was on the medication Lyrica
I will never forget what the magic amount was
four tablets don't remember how many mils each tablet
This was for the neurological pain my hands and feet are experiencing
Then the worse thing ever being allergic to the medication
Broke out in blisters in mouth
Hands and feet skin changes that never returned back the way
I know my skin to be
And my telling you this is
In the latter part of your message
I need you to get this
I went and am still in a extreme depressive state
Never like when I was on Lyrica

Bottom line
I am only medicated for mechanical pain Opioids
A high dose
I have had to take custody of my granddaughter
Disclosed all the Meds I am on
Judge allowed me to take her until my daughter
works on her addiction problem

I am so sad for you
I don't know what to say
This I want you to know
I know what it is like to want to die
it's just so painful
And there is zero done for my hands and feet
Yet pictures don't lie
And that's what I had for my doctors
My blood work three scripts filled with an array
of test to figure out what's going on
The process of elimation and ruling out the possible causes
of my hands and feet bruise after unexplained pain in the area
a vein will swell then burst after filling and swelling then turn black and blue

I hate that this has happened to me and this great body
It was so lean and mean put men to shame what I could do
probably my own demise
Your desire not to give up the desire to live is my concern
Please get any help with this part of giving up
It is not an option for myself
And I am just broken up about what happened to you
You have no idea
My body giving up on me
I am not ready for that
I am still in a funk that is always underlying
Fight fighting what
This I would like to know
Fighting what
This monster pain
That opioids barely touch
because this body is allergic to so many medications
There is a study out there by a doctor Kevin Tracey of neurology
and I believe his study is a ticket to somewhere better
It just needs to come here in the USA
TRIALS ARE IN EUROPE
STRICT LAWS HERE IN THE USA NOT ALLOWING
THE SELECT FEW IN HIS STUDY
BUT A UNNAMED PERSON CURED
THIS IS NOT MEDICINE RELATED
BUT BY A DEVICE PLANTED ON THE NERVOUS SYSTEM
AND IS TWEEKING THE NERVES THAT ARE DESTROYED

My pain specialest shot my thunder down
when I brought it up to him
He gives out the Meds is my only answer to his defense
with how he reacted to the new information I just learned about

I keep going of track
Point
Please don't give into that state of giving up
My father commited suidide
I promised my four grow children
They will never find my body in that state
Never to fear
I know that kind of pain
I am still stuck in that funk
when the pain is so great it wakes me
at five in the morning
And cannot go back to sleep
I have to wait till at least seven in the morning
If I would to begin taking my Meds haphazardly
I would be screwed
I take my Meds faithfully
On time the same time everyday
Why you might ask
I am a recovering alcoholic and addict
Over twenty years now
My drug of choice is alcohol
I know what my first three drinks do to me
And respect where I am today
If I were to abuse my Meds
I'm not a pill person
Hate IT
but this is my life
No more life in a bottle
Grew up and took responsibility
Of ME
DON'T YOU GIVE UP OR GIVE IN
WE ARE ALL HERE FOR YOU JUST AS LONG
AS YOU KEEP COMING
LOVE
me
My your days be bright

can't believe how much effort it is to type this.
I cried myself to sleep last night. Nothing is helping today. Feels like my left arm and right foot are being crushed, literally.

I am going to ask about something stronger than nucynta or a pain pump or nerve block.

I tried rite aid and cvs pharmacy. They also checked all their locations in the area and nobody had enough Nucynta. They said they rarely stock it. They also said it is illegal to fill a script partial and give me the rest later when it comes to narcotics. They said by law they can't give me half for example and provide the rest later.

Weird?

They said the doctor will have to give another script for remaining med.

Only time I ever got a partial order filled is when I had a pharma whom I befriended and he let me slide and was the one to allow me partial orders.

What a ridiculous Law, it's sole purpose is to make people in pain suffer unnecessarily. What harm is there in picking up your meds in 2, 3 or even 4 batches. At least it would show you were not overmedicating and sticking to prescribed doses as a week went past, rather than having a month's supply all at once.

I am glad we do not have anything so stupid here, occasionally my Dispensing Pharmacy has to give me partial numbers on any of my meds. As long as I have enough of the important ones to keep me going then the inconvenience of calling back a second time is minor.

I am sorry you are going through this, will no Pharmacy even order enough to fill the script for next day delivery?

Dave.

It might be time to get a new pharmacy. Partial fills are common and the DEA regulations appear to allow for this very scenario so long as the rest is dispensed within 72 hours. Anytime my pharmacy lacks the total number of pills they always have them in by the next day. Nucynta shows up as a schedule II medication, you shouldn't have had any problem.

http://www.deadiversion.usdoj.gov/21...06/1306_13.htm

Thank you David
Your info awesome
Thank you for searching and posting
Love
Me

I also looked that up and found the same info on the 72 hour rule. Thanks!

Regarding the pharmacy ordering for next day. I got the order filled at night, so they couldn't order till the next day. The earliest I could have gotten, would have been 2 days. Keep in mind, I have been through this before where I had to wait for an order. Sometimes they tell me they forgot or there is a delay and I have to wait longer. I was very close to going to the hospital ER that day. Plus, they said they couldn't get it ordered for a few days because only the head pharmacist is authorized to order narcotics and was not in! What a joke this is!!!!!!!!!!
They said the earliest I would have the Nucynta would be 2-3 days, but possibly more. They said the law clearly states no partials on narcotics. LOL. :(
They also said they can rarely ever get a med for the next day. It takes a few days even for normal meds.

I will not use this Pharmacy again. Why do I have to educate pharmacists? Crazy! I even asked my normal Rite Aid pharmacy and they said the same - no partial fills with any schedule II drug no matter what. They both told me either wait till next week or only get half filled and that is it.

I am going to have a talk with my pharmacist.

It went like this after calling every pharmacy in the area, I ended up at a local CVS::
I go into the pharmacy last Wednesday I believe it was, and this was the only place in the area that had about 100 pills in stock so I went with this one. They explained how it all works with narcotics and nothing they could do - due to the law. Said nothing.

I said I can hardly walk the pain is so bad and the doctor took my Tramadol to give me this script so I am not waiting another 3-4 days, I need it now.
They said they have to close out the script and I have to get my doctor to give me a new script for the remaining 80 count.

I called the doctor's office and they told me I should never get a partial fill. I felt like saying let me give you my pain for a day and see if you wait several days? I was ready to go to the ER. I was almost in tears in line at the pharmacy. It felt like I was having surgery on my arm while awake!

The nurse said she will see if the doctor will give me a script for the remaining 80, tomorrow. He better! Otherwise, time for new pain doctor.
The nurse said to me that there is no such thing as a partial narcotics fill. huh?

The nurse said the big fight will be getting insurance to approve and to pay.

I called the Caremark prescription insurance support line and they told me the pharmacy failed to tell me I had 72 hours to have the partial filled and completed. We could have gone that route. I rely on the pharmacist to be able to inform me of these things and to be knowledgeable.
I told them that the pharmacist said my only option was to get a new script for the 80 remaining. Caremark told me that they better not charge me since they owe me the remaining script and they essentially already accepted the bill for a one month supply. Caremark told me, the fact that they did not follow through or even mention as they should with delivering me the remaining 80 within 72 hours - it is 100% on them and their fault.

Wait till I tell the doctor's office about this since they seemed clueless as well. I am going to explain everything to them and if they screw me, I will never use that CVS again. Caremark, whether or not insurance covers this or not, should not be an issue because they owe me 80! I just hope the doctor writes the script, because they seemed unhappy with me for getting a partial script. I explained no other pharmacy had Nucynta in stock and you guys already took my Tramadol, leaving me with nothing. What was I supposed to do? She seemed to agree.

The thing that really angers me is that this whole thing adds so much stress and anxiety to my already terrible situation. Now I will have to drive another half hour to my doctor's office for the script. Then I have to fight with the pharmacy and insurance to get what I need! They also said they won't fill the remaining till I finish the 100. I feel like telling them to give me the remaining now and I am never coming back! Ugh.

I am so worried and can't think of much else right now. It is all consuming. I am afraid they will scr#w me and I will end up having to wait for the January script unless I can get an insurance over ride and get it filled early. At least the insurance company is very helpful and willing! At least someone appears in my corner.

Thanks for the support everyone!
I am writing a letter or two to CVS.
I will ensure the doctor understands this and does not blame me!
They need to know that a person with hell pain can't just easily wait till the following week wit nothing at all. They also seemed clueless about the 72 hour rule.

I found some of the hospitals in the Philly area are familiar with CRPS and treat it well. I have an appointment with a Neurologist at Penn Medicine who seems to have a huge area of coverage. I also am making an appointment for the Drexel Medical Neuro sciences center.

I hate to say it, but these laws force people to find relief elsewhere, natural means, spending huge amounts of money or even illegal drugs. What a shame.

Stay strong...your not alone

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