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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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ellens | @ellens | Nov 8, 2020
In reply to @k135 "I usually take .5ml a day sometimes 1 ml, but I think that’s a very low..." + (show)
@k135

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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Thanks for the input. I felt like I was flying blind. I looked at my bottle and it has 12.5 mg/dropper. Nasty taste!

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Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 8, 2020
In reply to @ellens "Thanks, Ginger. I've also seen ads for CBD cream. Any thoughts on that? Do you ever..." + (show)
@ellens

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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@ellens Yes, I have tried the CBD creams but did not have all the success some people have. Perhaps my knee needed more. The tincture is not totally unpleasant, but since I take a little, It's not bad.

@jesfactsmon Hank, I use products from CBD Distellery in Colorado. I like the consistent quality of their product, education, and Veteran's program.
Ginger

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1 reply
ellens | @ellens | Nov 8, 2020

Thanks, Ginger--good to know. I may try a cream sometime as an experiment. Ellen

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lioness | @lioness | Nov 8, 2020

@ellens I do use the hemp cream from New Age from Amazon I get relieve with it I don't like the drops but maybe as a rub it would be just as affective With new age it says the drops you can add to smoothies,teas and juice never tried this

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Hank | @jesfactsmon | Nov 9, 2020
In reply to @faithwalker007 "I don't even know where I would find Scrambler therapy in Wyoming. I was making progress..." + (show)
@faithwalker007

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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@faithwalker007
Renee, not sure where you are precisely in Wyoming but there is a place in Idaho Falls that offers it. Here is their page on locations:
http://calmarett.com/facilities/index.html (Click on Chiropractors for the Idaho location.)
I did extensive reading about it several years ago and I remember that there were a significant percentage of people that did it that got benefits. It might be worthwhile looking into for your situation with CRPS. Best, Hank

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Erika | @erikas | Nov 9, 2020
In reply to @faith88 "Please help me how do I get the emails to stop it is way too much..." + (show)
@faith88

Please help me how do I get the emails to stop it is way too much for me

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@faith88 Were you able to adjust your email notifications?

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lorirenee1 | @lorirenee1 | Nov 9, 2020
In reply to @faithwalker007 "I don't even know where I would find Scrambler therapy in Wyoming. I was making progress..." + (show)
@faithwalker007

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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@faithwalker007 Renee, You are in the worst place to get pain management. If you do find someone that does Scrambler (Calmare) therapy, be sure to ask how many patients the person that would do your treatment has done. From what I know, technique is important. You also might was to send a message to Spero Pain Clinic in Illinois, and write to a guy named Norm. He owns the Scrambler company, Spero Pain Clinic, and does the treatments. He is a Guru when it comes to doing Scrambler therapy, and gets good results with CRPS patients, and does a lot of advocacy for them. People even fly in from other states, and stay at nearby hotels to get his treatments. He is very well known in the area of Scrambler Therapy. Tell him Lori Miller told you to talk to him. He may even be able to guide you as to where to go for treatments. Also, having a DRG may be an issue. I would imagine you have to turn off your DRG while getting treatments. The guy is Norman Black, and has a face book page, if you want to see him. My best to you, LoriRenee1

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Hank | @jesfactsmon | Nov 11, 2020
In reply to @gingerw "@ellens Yes, I have tried the CBD creams but did not have all the success some..." + (show)
@gingerw

@ellens Yes, I have tried the CBD creams but did not have all the success some people have. Perhaps my knee needed more. The tincture is not totally unpleasant, but since I take a little, It's not bad.

@jesfactsmon Hank, I use products from CBD Distellery in Colorado. I like the consistent quality of their product, education, and Veteran's program.
Ginger

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@gingerw
Hi Ginger, I am thinking about this cbd oil from CBDistillery which you have had good luck with and have another question. @lorirenee1 also mentioned to someone that she gets hers from this same company and she takes the 2500 mg strength bottle. Linda (my wife) has terrible intractable pain in her feet so I would be inclined to order that as well. Just wondering, which strength do you order and is there any downside to ordering the 2500 mg as opposed to the lower strength options, in your opinion? Lori, feel free to chime in as well. I figure, the stronger the better, but in the past I have found one should never assume anything without checking.

I am getting to my wits end as to what to do. Linda takes kratom occasionally and does marijuana as well, but does not like the side effect of having to be high just to get rid of pain. I'm thinking maybe the THC free cbd oil may be a good aid in achieving this. We ordered some from another company about a year ago and it did nothing for her, but it may have been, excuse the expression, crap, (probably was, I was ordering blind).

Thanks, Hank

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2 replies
bustrbrwn22 | @bustrbrwn22 | Nov 11, 2020
In reply to @jesfactsmon "@gingerw Hi Ginger, I am thinking about this cbd oil from CBDistillery which you have had..." + (show)
@jesfactsmon

@gingerw
Hi Ginger, I am thinking about this cbd oil from CBDistillery which you have had good luck with and have another question. @lorirenee1 also mentioned to someone that she gets hers from this same company and she takes the 2500 mg strength bottle. Linda (my wife) has terrible intractable pain in her feet so I would be inclined to order that as well. Just wondering, which strength do you order and is there any downside to ordering the 2500 mg as opposed to the lower strength options, in your opinion? Lori, feel free to chime in as well. I figure, the stronger the better, but in the past I have found one should never assume anything without checking.

I am getting to my wits end as to what to do. Linda takes kratom occasionally and does marijuana as well, but does not like the side effect of having to be high just to get rid of pain. I'm thinking maybe the THC free cbd oil may be a good aid in achieving this. We ordered some from another company about a year ago and it did nothing for her, but it may have been, excuse the expression, crap, (probably was, I was ordering blind).

Thanks, Hank

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Hank. My husband has great success with CBD oil balm anything. We order from Lazarus which offers huge discounts for those on Disability. They may offer for retirees and other situations as well. The higher the mg the higher the relief he receives. He loves a massage with the other but it does give me rashes might be due to my lichens so I can’t do very often.

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1 reply
Hank | @jesfactsmon | Nov 11, 2020
In reply to @bustrbrwn22 "Hank. My husband has great success with CBD oil balm anything. We order from Lazarus which..." + (show)
@bustrbrwn22

Hank. My husband has great success with CBD oil balm anything. We order from Lazarus which offers huge discounts for those on Disability. They may offer for retirees and other situations as well. The higher the mg the higher the relief he receives. He loves a massage with the other but it does give me rashes might be due to my lichens so I can’t do very often.

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@bustrbrwn22
Thanks Jen, nice to see you back posting on Connect again. Missed you! So, can you tell me what the strength is of the cbd oil you guys use? Just trying to get a feel for dosage vis-a-vis effectiveness, and without overdoing it when not good or not necessary. I am specifically trying to come up with a solution of something Linda can take on nights when her pain is so bad she can't possibly sleep (like last night unfortunately) and which will soothe her pain but not make her high, which always affects her ability to go to sleep. BTW, I am thinking of ordering the 2500 mg strength bottle, I guess that's per dropperful.
Thanks, Hank

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