Complex Regional Pain Syndrome

Does anyone suffer from CRPS aka Complex Regional Pain Syndrome.?

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Yes I have this

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Elsmum,
How long have you had this condition and if You don’t mind the ask, are you taking medication and how long have you suffered from CRPS?

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My dr. Just told me last month that I have CRPS. Mine started after several traumatic kidney surgeries… now my kidney and all the surrounding areas including the skin have severe constant pain.

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I am so sorry to hear that. Initially, I thought this only impacted the joints, but this can occur anywhere the body experiencing trauma. If you haven’t, be sure to get a very good Pain Mgmt Doctor. They should be able to help with a method/s to help. I have had CRPS since 2011 from wrist surgery and now bilateral in both wrist and potentially in my feet and ankles. It’s a challenge, but keep your “head to the sky” and any questions feel free to ask. I will do my best to answer.

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Sorry it’s taken me so long I have suffered from this horid whatever you wanna call it for the last 10 years now and it’s taken me about 5 years to find the right drs to believe me and help me. I have a great team of drs. In the sceam of it all I’ve been misdiagnosed with other diseases and put on meds that broke my teeth, had my hair fall out, but now that is being fixed and when it comes down to it not only do I have CRPS, hypothyroidism, Sarcoidosis, and fibromyalgia I now have MS for who knows how long but I am finally getting the right meds. Not saying my pain is gone. I don’t think that will ever go away but I have a wonderful pain management specialist that helps me out alot and actually listens to me. My my main dr. Who manages all my ailments is my angel of mercy if it wasn’t for him I don’t know where I would be he never gave up on me and keeps helping me to this day. I don’t want to think about the day he retires. I got into the Cleveland Clinic for my Sarcoidosis and MS. They are also wonderful over there. I still have my days when I feel like no matter what there is no hope and I’m damaged and nothing can or will help me. I start my new MS meds in September. It’s an infusion type of med, everything I’ve read about it as long as it works for me sounds like I might get a piece of my life back. That is my biggest hope because this has been the biggest testament to my marriage, and I feel if this doesn’t work everything I’ve been working so hard for will all just crunble down to nothing. My worst nightmare.

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Yes and it a nightmare having this no one will never believe you because you look good on the outside but inside the pain is bad I’m in bed most of the day it very hard to get up and it like it never ends I’m lost on what to do about this it been four years and I have no life and it really sad

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Yes. I have this. I was diagnosed in1979 when it was called Reflex Sympethic Dystrophy (RSD) and it happed after a major car accident. It went into a remission in the late ‘80s but came back after back surgery in 2005. I have been on disability ever since but try to pretend I am normal when I go out of the house which is a double edged sword (if you know what I mean).

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Elsmum,
I am very sorry for all of your health challenges, just know that our Heavenly Father did not bring you this far just to let you suffer. I could be wrong, but it seems you are surrounded by family and friends who truly care about you and that’s so important when dealing with chronic sickness. It also appears that you have “caring” doctors with good bedside manners and that is a true blessing. The “flip” side; however, is the high level pain which has a way of casting a dark shadow over all the good, but only if you let it. Keep those positive endorphins flowing 😀 and your faith firmly and spiritually planted in Jesus Christ. This will keep the Sunshine shining, which is great for pain 😊. Hang in there and know that you have a community also supporting and praying for you.

If you don’t mind, here are some uplifting reads that I wanted to share with you. These books have served me well…
¤ All Things Are Working For Your Good… Joel Osteen
¤ Jesus Always… Sarah Young { Sarah Younghas another book, Jesus calling, which is an all time classic}
¤ God’s Promises ~~~ for every day

One more thing before I close.To help with my pain, I love writing uplifting and spiritually poetry. Here is a token of my prayer for you and "Just Know " that God will always be with you regardless. Take care…

                           KNOW THAT

Know that the Lord continues to direct your steps around the
shadows of dismay, discomfort and distraction.

Know that the Lord is your protector and always shelters you
with His Love, Mercy and Grace.

Know that the Lord is planning your next steps to replace to
darkness with light, sickness with healing, sadness with
laughter, strength with weakness, mental anguish with wisdom,
anxiety with patience and hatred, jealousy with Love. Yes plenty
of Love…

Know that the Lord’s Grace and Mercy will uplift your family and
friends, turn “no-ways” into “yes-ways” and He will even amaze
your doctor’s with your miraculous recovery and have them saying
“How can this be? Just last week there were inoperable cancerous tumors
and now the x-rays are clear and the patient is cancer free.”
We serve a wonderful God who is Omnipotent,
and is the Alpha and Omega.

Know that the Lord always keeps His promise and will never forsake us.
He will always be there even for just " good old- time sake." All you need to do is call His name.
He may not come when you call Him, but He will always be there on time!!
To God Be The Glory!!!

                         " Just Know That!" 

sca

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Most recently, I was diagnosed with a pinched nerve in my hip. This has been extremely painful. The first week of Sept, I will have a nerve block to address this issue. Pinched nerves can be a CRPS’s patient’s nightmare. Also, I will be having a neuro- stimulator implanted for my lower extremities next month as well. I have one for upper areas and it does work.
For those not familiar with this device ask your health professional. It can help with pain without the pain meds…

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Thank you very much your words of inspiration. They’re very much appreciated.

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Laura,
You are very welcome. I have had a time with all my pain areas having a “Pain Party.” + the Neuropathy in both feet and legs.🤕 A week from tdy will be my implant. It could not come quick enough.😊 This pain just takes so much out of your body. From experience, I know that chronic pain is tough, but keep your spirits up. We are praying for you.

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I’ve got all the symptoms but you got the doctors don’t want to approve it that I have it in continuously live in pain 24/7 and then they’re are cutting my pain medicine down from 140 a day to 120 of 20 mg of oxy really sad

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I have full body CRPS and have had it for 20 yrs. PLEASE get in touch with the national Support group…

www.rsds.org

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Unfortunately you are very right about that… You “Look fine” but you HURT LIKE HELL. I can’t count the number of friends (people who KNOW ME VERY WELL) who will say “Oh, you must be doing better, since you aren’t using your crutches or your wheelchair” and it DRIVES ME NUTS!! I just try to brush it off and tell them I am having a little better day that day b

That’s about the only way I can handle it!!

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My Stimulator has been a GODSEND!! It’s been the ONLY reason that I can walk even sometimes.

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MrBill,
Apologies for my delay. I am so sorry to hear about you bout with this unfortunate ailment. I haven’t had this for as long as you have had this, but you are very brave and strong to have dealt with RSD, now CRPS since 1979. I pray for you all as none of this is easy. It impacts the quality of life, marriages and families. So we just have to do what we can,day by day. If you have a day or a string of challenges days, just do the best you can. MrBill, I love to listen to all genres of music ,depending on my mood,and that helps me. I meditate ,pray keep a spiritual journal and participate by phone on a daily prayer call hosted by my church. That helps,but there are times when you do feel lost and abandoned. If you haven’t, share your feelings with your pain management doc and perhaps they may be able to help with programs such as bio-feed back, which helps you with breathing, to minimize pain, or speaking with a professional who deals with these types of situations.
Perhaps changing medications may help and I also invested in an implant of a NUERO-STIMULATOR. This does work and can eliminate some pain meds. This month, will have a NUERO-STIMULATOR implanted for my lower extremities, as CRPS decided to travel south after knee replacement surgery.

With this unique disease, nothing is normal and each case is different. Hopefully you will find some relief in the coming days. I dont know if you pray, but prayer does help. Regardless, I will keep you lifted up. Check with you doc on the bio feedback, speaking with a professional, NUERO-STIMULATOR implant and if you can tolerate it, swimming. It’s easy on the joints… As far as others not understanding your pain, well this group does, so dont be afraid to reach out… God Bless…

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They are changing my meds now also, and I’m being told that the reason is that the insurance companies are cracking down on the doctors because of the opioid crisis. So now those of us who really need it are going to have a harder time because of those that abused it. Make sure that when they are cutting down your meds, they are replacing them with something else that will help and that will work together with other medication to alleviate the pain of RSD. I do hope you have Doctors that are familiar with the condition. There are so few of them that really are.

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I have been living with CRPS for about 12 years. It started while I was still working full time. There were many, many days where the pain was so intense that I would sit in my truck and cry after I got off work.

Pain Management doctors became a monthly part of my life early on with this diagnosis. They tried everything…injections, every medication, physical therapy, psychologist specializing in patients with chronic pain, acupuncture, topical creams from a compounding pharmacy, and a spinal cord stimulator.

The spinal cord stimulator was implanted this Spring and while I’ve had to have several tune-ups and time to get used to using the different programs, I will say it has changed my life for the better.

I had been on a high dose of Methadone and Lyrica prior to the SCS. I am now in the process of reducing my Methadone and I have every hope of coming off of it totally!

My experience has taught me many things but the most important of those has been to find yourself a good pain management doctor. Secondly, you must advocate for yourself with every doctor and at every visit along the way.

Wishing ALL of you the very best in your path to a better quality of life…with less pain.

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I do have crps. I’m 33 and have had it for 16 years. It is hell. The thing that works best for me is ketamine. Praying that you get some relief!

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