Reflex Sympathetic Dystrophy (RSD and CRPS) Reflex Sympathetic Dystrophy (Complex Regional Pain Syndromes Type I) and Causalgia (Complex Regional Pain Syndromes Type II)(RSD and CRPS)


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Old 01-24-2018, 10:55 AM #711
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Originally Posted by Lizziep View Post
Hi all
I'm new here and I have had CRPS for nearly 18 years.
I'm married and live in UK with my husband and our cat Precious.
The CRPS started in one hand, spread to the other hand within a year and then in 2012 it carried on spreading to the degree it is now full body, I'm housebound and use a wheelchair to keep mobile. I have not been on any pain meds for over 11 years so I just do everything I can to distract myself from the 24/7 pain
What does your doctor say to that? Have you been referred to pain management. That is so odd that they would just leave it like that?
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=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 02-17-2018, 08:03 AM #712
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Default What am I doing?

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

The short story:

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

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

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

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

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

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

Thanks,
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Old 02-26-2018, 02:45 PM #713
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Hello everyone.

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

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

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

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

In the end, they decided on CRPS.

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

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

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

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Old 03-01-2018, 11:41 PM #714
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Saffy,

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


Gerry
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Old 03-05-2018, 02:34 AM #715
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Saffy,

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


Gerry


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

Phoning the Pain Clinic today as the Bier Block didnt work at all last week ...
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Old 05-02-2018, 08:58 PM #716
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Default Husband suffers with CRPS

Hey everyone. I am new here.
My husband suffers from RSD although I guess by now it would be stage 3 of CRPS a
Here is our story
13 years ago my 23 yr old husband who was in great shape, played rep baseball and hockey for many years hit a rut in the ice while playing men's hockey.
He tore his ACL meniscus tear, ( in half) mcl strain.
After a year of suffering in pain and reinjuring a few times the dr did a ROUTINE scope ( I hate that word) he promised my hubby that he would be golfing 2 weeks later.
First after filling out the lonnnngggggg presurgey booklet and stating that both sides of his fam suffer from blood clots, the DR decided against giving him a blood thinner with surgery. ( back then it was up to the DR) so!! He had surgery on Monday. By wed I was on the phone to the dr. My husband was in excruciating pain and nothing was working. So we went in to the dr.
He told us everything was fine go home here are some perks.
So days go by, weeks and he is still in a lot of pain, we go back. Dr. Says ok let's do an ultra sound and see. Then they did a vascular ultra sound
At that time there were 23 superficial blood clots in his leg. Some the size of quarters.
Doc says " they aren't in any danger of moving so nothing we can do, here are some more perks"
Let me just add that during that time my husband was taking 6-8 Percocet at a time,
So weeks go by and we go back in and say something isn't right. He has burning pain, can't move his leg,
Dr says ok I'll send u to another dr.
We go in there is a pic behind his desk of our surgeon and him playing golf together, that doc says I know what's wrong, we are going to cut u from hip to ankle and strip your veins let's sched for tomorrow.
My SO (significant other) says wait I have to talk to my wife.
He came home and we said " no way is he going under the knife again, not when they are friends" we found out after that if we had consented to the surgery then DR. Asshole wouldn't be liable for any injuries caused.
So months go by and I'm calling the receptionist weekely to let her know SO is out of his meds, she is faxing scrips to the pharmacy at an alarming rate.
So about 9 months in my SO looses it on the surgeon. He says u know what it's all in your head, your hooked on perks I'm done, kicks him out of his office.
So for 2 years we go to dr after dr and they all say the same thing, it's in your head here is antidepressants and Percocet.
So we get in the car and drive to sunnybrook to a dr who we had heard could help us.
We sat in his office all day begging him to help us we have 5 vascular ultrasounds, bone scan, x- rays and other tests. He finally agrees to see us. Takes one look at my husbands leg and says you have Reflex sypothetic dystrophy. We asked him what that was. He said its nerve damage
It's treatable not curable and you will have it for the rest of your life.
You need a pain dr.
So we leave there relieved because we now know what's wrong, but!! We know it's never going away. So we see drs, pain management we see many people nobody knows what to do, or how to treat this, they send him for test after test and give him all kinds of meds because nobody knows enough about this and they are just taking guess after guessby this time he has started to have seizures and "dizzy spells" his leg feels like his bones are melting his skin.
So it's been 13 years. Approx 30 diff drs hundreds of tests, hundreds of meds.
And my husband suffers every day with crippling pain.the one pain medication that actually helped him after years of trying a cocktail of meds was OxyContin and the people that abuse that have made it impossible to take. His dr just decided to move to another Province and we can't find a dr to take him because his dr. Of 8 years had him on such a high dose that nobody will even speak to him, even with all of our tests, results, reports.
He gets dizzy, sometimes for a few mins, sometimes for hours, I just found out tonight that the dizziness is a form of seizure. Which no dr. Has ever told us before. Drs. Really don't know much about this crippling condition.
So! That's our story. He has been living with this pain for 13 years, we have 2 children, have been together 16 years, I love my husband but I hate his pain. It runs our entire lives, I sympathize with him. I feel for him, he has a hatred for drs that is well founded, he lashes out when he is in pain, I receive most of that anger which is very difficult, but I don't live with pain.
Thank you for letting me share my story. I apologize for any spelling mistakes or punctuation I am trying to type this fast while dealing with a two year old.
I logged on to this forum tonight to see if there was any new info on this condition, I was pleasently surprised to read a bunch of new treatments and information that we didn't have before. When my SO was diagnosed there were only 500 documented cases and none of them were anywhere close to where we were.
Incase anyone asks or is wondering we live in Canada and before u have surgery u have to sign an agreement stating that if something goes wrong u are unable to sue. Now we could have sued within 2 years of the surgery but because the dr kept sending us to trusted colleagues who covered for him we did not get a diagnosis until after the three year mark. By then it was too late to do anything about it. We have logged a formal complaint with the dr. We have also contacted the college of physicians, so this mistake and terrible treatment is logged on his permanent record as a dr. We also have one other person who had surgery the same morning as my husband had problems as well, his were not as severe and has since been corrected by a different dr.
Thank you.
Tammy.
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Old 05-07-2018, 09:53 AM #717
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I had a car accident age 23, and then it took almost 3 years and then they diagnosed me with CRPS. By then it was too late and it had traveled from both my knees to my legs, fully; toes to hips.

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

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

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

Good luck!

I am 45 going on 46, BTW. Next September, I will have had this 23 years!
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All the best, Marleen
=====================
Work related (car) accident September 21, 1995, consequences:
- chondromalacia patellae both knees
- RSD both legs (late diagnosis, almost 3 years into RSD) & spread to arms/hands as of 2008
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Old 08-09-2018, 08:34 AM #718
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Default Introduction!

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

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

I'm hoping to get some more insight and learn about what regimens work or don't work for other people. So far it is confined to my right leg from the knee down but I understand it can spread. I'm hoping to avoid that. Looking forward to learning from all of you!!
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Old 08-09-2018, 10:39 AM #719
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Hello annabanana and welcome to Neurotalk. I'm sorry to hear that you ended up being diagnosed with CRPS but ay least you have a diagnosis and can start moving towards proper treatment.

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

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

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

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

Wishing you well and I hope your relief comes quick as remission is very much possible.
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Old 05-02-2020, 09:29 AM #720
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Quote:
Originally Posted by Julette View Post
Hi Angie
Yes I too have this happen and then somtimes forget what the word is for something I asked my son to get his wash basket but got as far as wash in the end I just pointed to it and he said wash basket its very frustrating and then I dont say the word right like saying pecker for peppers that kind of thing. I have only recentley been told I have RSD so very knew to me. Like you I have pain and stiffness in my fingers and it must seem to my husband that Im going on a bit about this that and trying to find out what its all about and how it affects me, it seems like everytime he walks past Im on the computer doing research I just hope he doesnt get fed-up with me talking about it. I also have the pain in shoulder and arm hands/fingers with both heat and cold and tinling in hands I drop things alot and loss of strengh in arms and hands for me this could have been caused with having Radiation treatment for Cancer in 04 or that I have carpul tunnel in both wrists not sure which. I have not had anything go purple in colour but have read that this can happen its really frightning to know some of the terrible affects this can have on your body.
Wow some one actually has what I have. Mines all in my neck, shoulders, arm(s) and hand(s). Mine is caused from spinal fusion called ACDF after 2 herniated discs were removed. It has not been easy finding someone with it in the hands and fingers like us.
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