1. < Chronic Pain

CRPS - anyone suffering with complex regional pain syndrome

Posted by pfox @pfox, Jul 14, 2017

I am new to this forum- my 40 year old daughter suffers from CRPS that has spread to whole body - her nerves are on fire... it is attacking her digestive system too where she has severe GERD. She goes to Pain Management doctor, gastrointestinal doctor and has wonderful PT that helps to loosen her tense muscles which can eventually atrophy. this was recognized in 2014 as a rare disease by CDC but her chronic pain is intense... we keep searching for help and guidance... since many do not understand this horrible affliction.... thanks for any advice....

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Faithwalker007 (Renee) | @faithwalker007 | Nov 8, 2020
In reply to @lorirenee1 "@faithwalker Renee, God in Heaven, I would just hug you to pieces, except I fear I..." + (show)
@lorirenee1

@faithwalker Renee, God in Heaven, I would just hug you to pieces, except I fear I would hurt you! My heart and soul goes out to you. You have done so many great things with your life, Renee. More than most people ever do. And here you are, just suffering. My heart hurts, reading you. Just hurts. What can I even say? Lori Renee

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Thanks for the words. Today is an especially tough day and they mean more than you can say. When even family is attacking, it means a lot to know there are others who understand.

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lorirenee1 | @lorirenee1 | Nov 8, 2020
In reply to @faithwalker007 "I cannot take offense at a helping hand, Lori Renee1. I do quite a bit to..." + (show)
@faithwalker007

I cannot take offense at a helping hand, Lori Renee1.
I do quite a bit to distract myself from the pain actually and attempt to learn more and more as is possible even with the cognitive blur the pain causes. I have learned to paint, polish rocks, diamond paint, sketch with charcoal, and make soy candles. I even continue to try to write although I’m limited to blogs and brainstorming with future plots and novels. I haven’t finished out published another novel since before my knee operation. I may need to be contented with five. That’s okay.
I haven’t taken Kratom but with my seizures and migraines, that’s a discussion better left between my neurologist and me. I’ll let you know what we decide. I need a list of the entire ingredients, inactive and active before we even discuss it as a treatment option.
And neoplasticism? I don’t know much about the topic but I will investigate it further.
On the subject of closer providers teams? I’ve been attempting to get a closer provider to accept me and my case for over a year. I visited with my husband’s provider last month and due to his upcoming retirement, he declined. All other pain specialists with an hour drive, refuse to prescribe opioids or accept me case due to the opioids I currently take. I’ve been told by two “providers” that CRPS WILL NOT respond to Opioid therapy, (with me, a verifiable example of the opposite sitting in front of them) and the only treatment I could receive would be a SCS (which I already have), Lyrica or another “nerve” medication (anti-epileptic), or NSAID (can’t tolerate due to surgical and medical history).
Upon hearing the previous reasons to not be a recipient for their new protocol treatments, they excuse me from their offices with a polite or forceful no and say goodbye .

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@faithwalker007 Renee, More thoughts to help you. Have your tried Scrambler(Calmare) therapy? It can be quite successful with CRPS patients. I tried it with 10 sessions, and it helped pain quite a bit. Then the pain ramped up again after about 3 weeks, and I tried another 10 sessions that did not work. However, I have heard good stories with CRPS patients, and even talked to one while waiting for treatment that said he could not live without it. I doubt if your Neurologist will know a thing about Kratom, as it is not FDA approved, and 5 states do not approve it. I don't know if Wyoming does or not. God, Renee, you have such talent. I read what you have done, and it blows my mind. Anyway, I hope in some way, I am helping you. Love, Lori Renee

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1 reply
k135 | @k135 | Nov 8, 2020
In reply to @lorirenee1 "@K135 Do you attribute your improvement to anything specific? There are not many happy endings with..." + (show)
@lorirenee1

@k135 Do you attribute your improvement to anything specific? There are not many happy endings with CRPS. My best to you, Lori Renee

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for me it was definitely the neridronate. i could hardly walk across the room as it was so painful before that - by the time I was halfway through the treatment I could walk again! I didn’t try the CBD before that, but it works so much better for me than lyrics, morphine, etc which really didn’t help me with the pain.

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ellens | @ellens | Nov 8, 2020

How do you use the CBD? Under the tongue? How much do you use/day and how often do you take it? I have various pains right now and I have the CBD oil but don't really know how to use it.

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2 replies
k135 | @k135 | Nov 8, 2020
In reply to @ellens "How do you use the CBD? Under the tongue? How much do you use/day and how..." + (show)
@ellens

How do you use the CBD? Under the tongue? How much do you use/day and how often do you take it? I have various pains right now and I have the CBD oil but don't really know how to use it.

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I usually take .5ml a day sometimes 1 ml, but I think that’s a very low dose. I use the oil, hold it in my mouth for a few minutes

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1 reply
Hank | @jesfactsmon | Nov 8, 2020
In reply to @lioness "@jesfactsmon Hi Hank didn't you read my post as to how to stop emails" + (show)
@lioness

@jesfactsmon Hi Hank didn't you read my post as to how to stop emails

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@lioness
Oh sorry Linda, no I missed your post. Hank

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Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 8, 2020
In reply to @ellens "How do you use the CBD? Under the tongue? How much do you use/day and how..." + (show)
@ellens

How do you use the CBD? Under the tongue? How much do you use/day and how often do you take it? I have various pains right now and I have the CBD oil but don't really know how to use it.

Jump to this post

@ellens There are a couple different ways to take CBD, and you might need to try them out to see which works best for you.

I have tincture that is 2500mg total per bottle. That makes it pretty strong, so I only use a couple of drops under my tongue, once a day. Hold it there for a few minutes, then swallow. They say that is the fastest integration into your system. It is recommended always start low dose, and go up from there if needed. Also, I have softgels 30 mg each, that I can use. They dissolve in your digestive tract, and are good if you don't like the tincture, or want the convenience of premeasured form.

Also, some people use soft gummies, usually in 30 mg form. To me, it is like having a piece of rubber in your mouth, but that's my experience.
Ginger

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2 replies
Hank | @jesfactsmon | Nov 8, 2020
In reply to @gingerw "@ellens There are a couple different ways to take CBD, and you might need to try..." + (show)
@gingerw

@ellens There are a couple different ways to take CBD, and you might need to try them out to see which works best for you.

I have tincture that is 2500mg total per bottle. That makes it pretty strong, so I only use a couple of drops under my tongue, once a day. Hold it there for a few minutes, then swallow. They say that is the fastest integration into your system. It is recommended always start low dose, and go up from there if needed. Also, I have softgels 30 mg each, that I can use. They dissolve in your digestive tract, and are good if you don't like the tincture, or want the convenience of premeasured form.

Also, some people use soft gummies, usually in 30 mg form. To me, it is like having a piece of rubber in your mouth, but that's my experience.
Ginger

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@gingerw
Ginger, I'd be interested in knowing which specific cbd product you use for taking under the tongue. Thanks, Hank

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Faithwalker007 (Renee) | @faithwalker007 | Nov 8, 2020
In reply to @lorirenee1 "@faithwalker007 Renee, More thoughts to help you. Have your tried Scrambler(Calmare) therapy? It can be quite..." + (show)
@lorirenee1

@faithwalker007 Renee, More thoughts to help you. Have your tried Scrambler(Calmare) therapy? It can be quite successful with CRPS patients. I tried it with 10 sessions, and it helped pain quite a bit. Then the pain ramped up again after about 3 weeks, and I tried another 10 sessions that did not work. However, I have heard good stories with CRPS patients, and even talked to one while waiting for treatment that said he could not live without it. I doubt if your Neurologist will know a thing about Kratom, as it is not FDA approved, and 5 states do not approve it. I don't know if Wyoming does or not. God, Renee, you have such talent. I read what you have done, and it blows my mind. Anyway, I hope in some way, I am helping you. Love, Lori Renee

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I don't even know where I would find Scrambler therapy in Wyoming. I was making progress with Mirror Therapy until my insurance refused to pay for my therapist at the hospital here. I tried to keep it up at home but it didn't work as well. I gave up. I don't say those words very often but I couldn't figure it out on my own with my pain levels. Eventually I had to conserve my spoons for things I could tackle successfully. My mom is around now so maybe we can try it again.

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2 replies
ellens | @ellens | Nov 8, 2020
In reply to @gingerw "@ellens There are a couple different ways to take CBD, and you might need to try..." + (show)
@gingerw

@ellens There are a couple different ways to take CBD, and you might need to try them out to see which works best for you.

I have tincture that is 2500mg total per bottle. That makes it pretty strong, so I only use a couple of drops under my tongue, once a day. Hold it there for a few minutes, then swallow. They say that is the fastest integration into your system. It is recommended always start low dose, and go up from there if needed. Also, I have softgels 30 mg each, that I can use. They dissolve in your digestive tract, and are good if you don't like the tincture, or want the convenience of premeasured form.

Also, some people use soft gummies, usually in 30 mg form. To me, it is like having a piece of rubber in your mouth, but that's my experience.
Ginger

Jump to this post

Thanks, Ginger. I've also seen ads for CBD cream. Any thoughts on that? Do you ever just rub the CBD oil on a sore spot? I admit that I think the oil tastes awful but I can live with that. Ellen

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