Want to talk with others. Have you found relief from CRPS?

Posted by mam14 @mam14, Feb 4, 2019

I was diagnosed with complex regional pain syndrome a year ago. It has since spread and I am experiencing a decline in my health at an alarming rate. I am hoping to talk to others that may have found relief.

AMEN…..and Thank you..
we ALL do need each other

Liked by dstewart318

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This is a real condition, in addition to being very painful. I assume you might be on pain medications? I found activity is the best, but it is really hard to be active when your in so much pain you have tears streeming down your face right? So, these are just suggestions that has worked on some, may or may not work for you. Use a tense unit, it stimulates the nerves to get blood flow, use it day and nightly, since they have a small one you can hook on your trousers. It releaves the pain temporarily. But the more you use it the better it gets. This is a condition that travels, it started in my arm, and moved down the whole left side. So of course, I was not very mobile during that time, only in a wheelchair. Goodnews, today I am walking and am very grateful to be out of a wheelchair. So has your condition traveled to other areas? If so where? I think you might find some releif in the tense unit.

Liked by sunnyflower

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Thank you csteele. I'm currently working with a pain management center at nura pain management. The tense device is in my future plans. I've already had 2 nerve block injections which my body didn't like and went into seizures. tried taking gabapentin…didnt like that either. Also tried time release patches…struck out with that as well. So far the pain is only on.my lower right leg. I've done alot of research and found that taken high doses of vitamin C has a chance of it not spreading so I started taken 500 mlg…time will tell. This is very painful and yes I am taking pain meds along with tylenol extra strength 500 mlg and it does seem to take the edge off for a few hours. this something I would never want anyone to experience

Liked by sunnyflower

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@smallengineguy

Thank you csteele. I'm currently working with a pain management center at nura pain management. The tense device is in my future plans. I've already had 2 nerve block injections which my body didn't like and went into seizures. tried taking gabapentin…didnt like that either. Also tried time release patches…struck out with that as well. So far the pain is only on.my lower right leg. I've done alot of research and found that taken high doses of vitamin C has a chance of it not spreading so I started taken 500 mlg…time will tell. This is very painful and yes I am taking pain meds along with tylenol extra strength 500 mlg and it does seem to take the edge off for a few hours. this something I would never want anyone to experience

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Hello smallengineguy, may I ask what medication was in the time released patches? I use prescription 5% Lidocaine patches for my back pain. They work pretty well but after so many months they seem to lose some of their effect. I also use OTC liquid 4% Lidocaine and swab it on my knees w/ a Q-Tip. It's weired stuff. I think it works but has a sensation of it's own. My knees burn and sting worse than the rest of my body which is bad enough! I've had 4 L-spine injections without incident. The first 3 didn't work so I've had 3 surgeries since. My 4th injection was 2 weeks ago. No problems but no changes. I really hope you can find relief!!!! I'm so sorry to hear about your pain! I know it only too well! Many blessings and prayers, Sunnyflower

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@csteel

This is a real condition, in addition to being very painful. I assume you might be on pain medications? I found activity is the best, but it is really hard to be active when your in so much pain you have tears streeming down your face right? So, these are just suggestions that has worked on some, may or may not work for you. Use a tense unit, it stimulates the nerves to get blood flow, use it day and nightly, since they have a small one you can hook on your trousers. It releaves the pain temporarily. But the more you use it the better it gets. This is a condition that travels, it started in my arm, and moved down the whole left side. So of course, I was not very mobile during that time, only in a wheelchair. Goodnews, today I am walking and am very grateful to be out of a wheelchair. So has your condition traveled to other areas? If so where? I think you might find some releif in the tense unit.

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Hello csteel, me again. I have and Empi unit that is like a Tens but it's a cross-current. Hope I got that correct. That's the only difference. They cross the wires. It's supposed to work better. Here is the main Google page so you could select your choice of different web sites. My physical therapist had me get it. I think it was covered by my insurance somewhat. All the best, Sunnyflower https://www.google.com/search?q=empi+electrical+stimulation+unit&rlz=1C1CHBD_enUS804US804&oq=Empi+electri&aqs=chrome.1.0l3j69i57j0l4.11901j0j7&sourceid=chrome&ie=UTF-8

Liked by smallengineguy

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Hi sunny flower. The patches I tries were buprenorphine. let's just say we did not get along at all. I have tried the lanocain patches as well but found It was leaving a foul taste in my mouth…strange but true. I have been slowly getting back to work…albeit painful and be very careful. I'm a manager at a landscape company and I'm responsible for the repairs and upkeep for about 300 pieces of equipment. Thank GOD I have a very understandable company and they are willing to work through this with me!!!

Thank you sunnyflowet for your words of encouragement

Liked by sunnyflower

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@smallengineguy

Hi sunny flower. The patches I tries were buprenorphine. let's just say we did not get along at all. I have tried the lanocain patches as well but found It was leaving a foul taste in my mouth…strange but true. I have been slowly getting back to work…albeit painful and be very careful. I'm a manager at a landscape company and I'm responsible for the repairs and upkeep for about 300 pieces of equipment. Thank GOD I have a very understandable company and they are willing to work through this with me!!!

Thank you sunnyflowet for your words of encouragement

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Hi. I'm very familiar w/ buprenorphine aka suboxone. It's an uncomfortable drug and most people have to stay on it indefinitely. Wow, that's great about your work!!!!! I worked w/ an open wound in my abdomen while I had treatment for it for 5 months, and, with quite a few broken bones, a corneal ulcer (auto-immune), scleritis (autoimmune), and recovering from meningitis-5 days in hospital, don't even know how I got home and didn't wake up until about 3 weeks later! It was awful working w/ so many afflictions! There were others as well. Wow, 300 pieces of equipment!!! That's a HUGE responsibility!!!!!! You go girl! I hope and pray I can encourage and uplift others. I really do. I appreciate you saying that and also want you to know I want you to be honest w/ me. If you don't want me to talk about certain things or whatever, I won't personalize it. Really. Hang in sister! Sunnyflower

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OK sunnyflower… we must first clear up one little issue…I AM MORE OF A BROTHER then a sistet… but it's ok I get..I do try and find humor from life and this one did it….LOL…
😂😂😂…yea I work with the small engine department and we have a ton a equipment….not counting the salt trucks…front end loaders…and skidsteers and the list goes on……..I will let you know if things bother me. But you are free to speak your mind…..

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@smallengineguy

OK sunnyflower… we must first clear up one little issue…I AM MORE OF A BROTHER then a sistet… but it's ok I get..I do try and find humor from life and this one did it….LOL…
😂😂😂…yea I work with the small engine department and we have a ton a equipment….not counting the salt trucks…front end loaders…and skidsteers and the list goes on……..I will let you know if things bother me. But you are free to speak your mind…..

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smallengineguy, Sry, I'm so uniquely talented that way. Geesh! It's the Gabapentin!! Just getting to know who is who but your Mayo name clearly says "guy". Thank you for pointing out my error. I hope I don't mess up again! Blessings, Sunnyflower

Liked by smallengineguy

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@rsnowflake

Hi I'm Renee I live in the Philadelphia area. I was diagnosed about 2 and a half years ago. My struggle is difficult as well. Once I got diagnosed I read everything I could get my hands on and medical journals. I unfortunately have bipolar and another autoimmune disorder. So I've been to neurological, rheumatoid, psychiatric doctors to get a spinal implant that was a miracle. I was so close to losing my hand. I did the trial and within a day my hand went back to "almost " normal. I have an I pod that controls both of my arms. Weather and stress play a huge part in the control of my crps. Obviously being bipolar I understand the horrible days of depression and hopelessness. Which then makes the crps worse. It's in my left leg, and both arms. The other day I fainted from the pain, I woke up to my 16 year old yelling my name and asking if I was alive…lol.. unfortunately these r the things that go with the disorder. In Pennsylvania medical marijuana is legal!!! It only started about a year ago and is amazing for the disorder. No opioid will help. They are for pain, what we have is very different more like phantom pain from an amputation. No one can see it no pure diagnosis, yet it feels like you are going to die. The marijuana helps take your mind down a few notches and you can take it any way you feel comfortable. I use a vape pen and if I'm in the hospital I use pill form. Reach out to anyone who will listen! The people in our forum are amazing. And I get it I'm only 45. Feel free to ask for a private chat anytime or just in the forum. The people have such similar stories. The more we reach out to each other the less u feel alone.

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Hi. I'm just now see ing these responses to my original text . I'm Dana 44 and have very similar testimony as yours please feel free to share with me anytime God bless

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@neverrest

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

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@neverrest My heart breaks for you. We have much in common. I also was shocked/electric sensations by my DRG stimulator, turned it off finally, and now I burn and have serious sleep issues. First, go immediately to a sleep doctor. I have an appointment with one next week. Second, go to ethanaturals.com and try Kratom for pain and relaxation. Next, try Benfotiamine, a form of B1 vitamin (thiamine) which helps neuropathy, CRPS pain. Look on Amazon and give it a try. They sell it there. It has helped my burning sensations tremendously. Feel free to personally message me if you want. LoriRenee1

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I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

REPLY
@neverrest

I have CRPS 1 & 2, In my foot and leg. I finally was diagnosed with it in 2014 after seeing quite a few doctors. Am here because the medication hasn't helped in a couple of years now. The Narco and Nerve meds just leave me in a fog. I had a spinal cord stimulator that would shock me all day for 3 years. They accused me of lying and finally Dr. Lubenow at Rush found out the leads were broken. Am tired, I can't sleep really and am very depressed. Really ready to just go home, can't imagine another 5 years like this. Any advise on new treatments.

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Hi @neverrest, welcome to Mayo Clinic Connect. I am so sorry you are dealing with CRPS complications. I agree with @lorirenee1 that you do need to see a physician about your sleeping issue. Sleep is a huge factor to combating pain. You will notice that I moved your comment to a discussion that is ongoing about CRPS. I did this so that you can connect with other members who are dealing with the same thing.

You may also be interested in the following:
Latest Research | CRPS Treatments: https://www.burningnightscrps.org/crps-rsd-support/latest-research/

Promising treatment option for complex regional pain syndrome: https://medicalxpress.com/news/2019-06-treatment-option-complex-regional-pain.html

Complex Regional Pain Syndrome Fact Sheet: https://www.ninds.nih.gov/Disorders/Patient-Caregiver-Education/Fact-Sheets/Complex-Regional-Pain-Syndrome-Fact-Sheet

@neverrest What are you currently doing to manage your symptoms and pain?

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@mam14

I ruptured the fascia on the bottom of my foot. I had some small tears and bruising. I moved too fast and it snapped. It was immobilized for so long and was so painful. That is what caused it with me. I read that it can occur without injury also.

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mam14, I am dealing with the same as you. It is my right foot that the fascia ruptured. What can be done if anything? I am willing to go anywhere for pain relief. The burning sensation is taking the best of me. Looking forward to hearing from you. Ty!

3D691B61-2DE0-4547-9BC9-E3EAC7E12FDE

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For your feet the only thing I can suggest I put pillow on floor. then towel to protect pillow then ICE PACKS. then towel to protest feet, sit with both feet on ice, to cll them down. I have same thing .GOOD LUCK

Liked by migizii

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