Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

Interested in more discussions like this? Go to the Chronic Pain Support Group.

@cancerwarrior74

Hi, I’m Chris from Nj. I’m a 43yrs male. I’ve been plagued by stomach pain and diarrhea for most of my life but my real journey started When I got attacked in 2010 while working as a correction officer. Totally wrecked my back, herniated disc in cervical and lumbar areas in spine. Also broke my hand. I had to retire due to my injuries. But I fought on. A week into retirement, I got hand foot and mouth virus bad. It was such an odd case it was printed in medical journals by university of penn. But I fought on. Then in 2012 I was diagnosed with stage 4b thymoma cancer. I fought hard despite the grim outlook. Then in 2013 I was diagnosed with an autoimmune disease called myasthenia gravis. The docs don’t think mg is painful but trust me they are wrong. My legs hurt really bad. I get about 2hrs of sleep and then I’m awoken by the pain in my legs. I need to rub my legs and turn to my other side so the leg can recover. I do that all night, every night. The fight is getting hard now but I fight on for my wife and kids. Then in 2014 I needed to get a colostomy bag. My gastro problems are now @ the top of my list for all my pains. The colostomy was more than I could handle. Both physically and emotionally. I lost my will to fight. I wanted to tap out. Because my gastro problems, pain killers are not an option for me. I was on a medication called marinol whiched helped with my pain and my gastro issue. It helped me fight but Nj got a new prescription company called optumRx. So after 5yrs of being on marinol, optumRx stopped it because I was using it off label(it’s a very expensive med). OptumRx could care less that the docs originally gave me 10 yrs to live. Immediately I was back in the er scene. Extreme stomach pain. As of yet, I still don’t have a real stomach diagnosis. The pain got so loud in my head that I couldn’t function. I stopped caring about everything. I stopped showering. I stopped hanging out with my friends. A nurse suggested medical marijuana. I was initially against it because my entire life was devoted to law enforcement. But chronic pain is the hardest fight of my life. I was down over 30lbs in just a few months. I felt like I was dying. So I finally gave in. It was the best decision that I ever made. It helped me with my back. It helped me with my mg, it helped me with my sleep, it helped me with my appetite, it helped me with my mood, it helped me with all my pain. My wife said she got her husband back. I know some of my law enforcement friends think marijuana is just for getting high and people pretend to be sick to get a prescription. Yes, people do but I’m not one of those people. Marijuana has saved my life and I’ll argue that point to anyone. Marijuana needs to be explored much more and we need the federal government to ease the restrictions so that the great docs can conduct research. I’m alive because of marijuana. I use the marijuana oils so I don’t harm my lungs. I happy to say that I’m still in the fight and I’m fighting on.

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Chris ..Wow , you’ve been through an extremely hard time . But ecoursging about the oil , what strain do you use and how much? Thank you , my husband suffers with back and neck pain. I believe that it’s criminal not to legalize medical marijuana..

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@cancerwarrior74

Hi, I’m Chris from Nj. I’m a 43yrs male. I’ve been plagued by stomach pain and diarrhea for most of my life but my real journey started When I got attacked in 2010 while working as a correction officer. Totally wrecked my back, herniated disc in cervical and lumbar areas in spine. Also broke my hand. I had to retire due to my injuries. But I fought on. A week into retirement, I got hand foot and mouth virus bad. It was such an odd case it was printed in medical journals by university of penn. But I fought on. Then in 2012 I was diagnosed with stage 4b thymoma cancer. I fought hard despite the grim outlook. Then in 2013 I was diagnosed with an autoimmune disease called myasthenia gravis. The docs don’t think mg is painful but trust me they are wrong. My legs hurt really bad. I get about 2hrs of sleep and then I’m awoken by the pain in my legs. I need to rub my legs and turn to my other side so the leg can recover. I do that all night, every night. The fight is getting hard now but I fight on for my wife and kids. Then in 2014 I needed to get a colostomy bag. My gastro problems are now @ the top of my list for all my pains. The colostomy was more than I could handle. Both physically and emotionally. I lost my will to fight. I wanted to tap out. Because my gastro problems, pain killers are not an option for me. I was on a medication called marinol whiched helped with my pain and my gastro issue. It helped me fight but Nj got a new prescription company called optumRx. So after 5yrs of being on marinol, optumRx stopped it because I was using it off label(it’s a very expensive med). OptumRx could care less that the docs originally gave me 10 yrs to live. Immediately I was back in the er scene. Extreme stomach pain. As of yet, I still don’t have a real stomach diagnosis. The pain got so loud in my head that I couldn’t function. I stopped caring about everything. I stopped showering. I stopped hanging out with my friends. A nurse suggested medical marijuana. I was initially against it because my entire life was devoted to law enforcement. But chronic pain is the hardest fight of my life. I was down over 30lbs in just a few months. I felt like I was dying. So I finally gave in. It was the best decision that I ever made. It helped me with my back. It helped me with my mg, it helped me with my sleep, it helped me with my appetite, it helped me with my mood, it helped me with all my pain. My wife said she got her husband back. I know some of my law enforcement friends think marijuana is just for getting high and people pretend to be sick to get a prescription. Yes, people do but I’m not one of those people. Marijuana has saved my life and I’ll argue that point to anyone. Marijuana needs to be explored much more and we need the federal government to ease the restrictions so that the great docs can conduct research. I’m alive because of marijuana. I use the marijuana oils so I don’t harm my lungs. I happy to say that I’m still in the fight and I’m fighting on.

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Welcome to Connect, @cancerwarrior74. Wow, you have quite a medical history packed into that paragraph. I can hardly imagine. As well as participating here in the chronic pain group, I thought I might list a few other conversation groups that you might be interested in on Connect. In addition to getting support from others, I'm sure you have a lot of experience, wisdom and hope to offer.

- Anyone out there with Thymoma/Thymic Carcinoma https://connect.mayoclinic.org/discussion/anyone-out-there-with-thymomathymiic-carcinoma/
- Ostomy: Adapting to life after colostomy, ileostomy or urostomy https://connect.mayoclinic.org/discussion/ostomy-adapting-to-life-after-colostomy-ileostomy-or-urostomy/
- Digestive Health https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/

I look forward to connecting you with others.

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@juju70

Chris ..Wow , you’ve been through an extremely hard time . But ecoursging about the oil , what strain do you use and how much? Thank you , my husband suffers with back and neck pain. I believe that it’s criminal not to legalize medical marijuana..

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It’s called 10 to 1 oil. It has thc and cbd in it. I use anywhere from 2 to 4 drops depending on the pain. I get it from my local dispensary for $60.

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This is what they gave me. There is apparently science in the aroma too. If you suffer chronic pain then you probably suffer from depression.

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@lioness

@grandmar my nerves into my thighs are damaged from back fracture I found a nerve cream that really helps me its called My Pain Away Fibro cream by Topricin I get it at CVS.Its also good for neuropathy once a day and usually no more then this And 3% goes to research in fibromyalgia.

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@lioness I wonder if this cream might help with severe leg cramps. I have been getting those quite a bit. I am trying hard to make absolutely, positively sure that I drink plenty of water. I am supposed to drink 80 - 100 ounces a day to combat the potential damage to my kidneys that the immunosuppressants can cause and most days I do achieve that.
JK

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@contentandwell

@lioness I wonder if this cream might help with severe leg cramps. I have been getting those quite a bit. I am trying hard to make absolutely, positively sure that I drink plenty of water. I am supposed to drink 80 - 100 ounces a day to combat the potential damage to my kidneys that the immunosuppressants can cause and most days I do achieve that.
JK

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@Contantandwell I dont know never tried it but I know what works pickle juice leg cramps are gone right away or eat a pickle at bedtime The other is mustard If you try it let me know

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@lioness

@Contantandwell I dont know never tried it but I know what works pickle juice leg cramps are gone right away or eat a pickle at bedtime The other is mustard If you try it let me know

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If you’re having leg cramps it means your low on electrolytes so yal need to make sure you get the flavored water at grocery store that will say electrolytes are added in it . That will definitely stop them . I use to have them and that fixed it .

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@jfsherley

If you’re having leg cramps it means your low on electrolytes so yal need to make sure you get the flavored water at grocery store that will say electrolytes are added in it . That will definitely stop them . I use to have them and that fixed it .

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Omg..re leg pain. Thank you. Will do it. Also I wear heavy leg stockings at night when having pain. The minute I put them on, pain lessons.

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Hi! I have good days and not-so-good days, or sometimes hours that I am able to function and hours I cannot. I am dealing with pain from spinal stenosis, scoliosis, kephosis, herniated bulging and retropulsed discs. I have had five spontaneous spinal fractures with no known cause; I do not have osteoporosis. Frequent shingles, UTIs and bronchitis. I also have Lyme and co-infections which were undiagnosed for 3 1/2 years which destroyed my digestive system and caused respiratory problems, muscle cramping and neuropathy (the muscle cramping and neuropathy have resolved with meds for Lyme.) I try to do my best, fix my hair and wear a little makeup when I'm up to it. As a result, many people say "But you look great!" Yeah, just don't come look at my house. What do you answer to that?

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I Have a pain pump inserted in my abdomen. It drips a small, (very small) dose of narcotics into a catheter that runs up my spin. Prior to that my back pain was crippling even with huge doses of Oxycontin. I, like you, have many issues with my back, there is very little of it that looks as it was intended to look. I still can't walk without a cane or walker but my pain is very bearable and i have most of my life back. I did have had Lyme's in the early 80's however my cramping and neuropathy were the result of heavy chemo when I had cancer. I take Lyrica, 300mg. x 2 per day and Amitriptyline, 25mg x1 per day for the neuropathy and Baclofen, 20 mg. 1x per day for the cramping. I play the guitar and sing 2 hours per day minimum, I go to the gym for one hour on a nustep recumbent cross trainer and I cook two meals a day for my wife and son. There is always hope. we are not supposed to recommend anything on this venue but you really should look into the pain pump. A dose of meds delivered via the pump is 300 times more effective than the same dose taken orally. Because of the small dose the side effect and addiction problems do not come up. I get my pump refiled every 3 to 4 months in a 5 minute procedure at my doctors office and it is painless. Check it out. Love and Blessings.

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