Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Volunteer Mentor @sandytoes14, Mon, Aug 19 2:56pm

Usually I am not one to share much of my personal story but here goes…I have what is called moderate to severe degenerative disc disease, arthritis of the spine C3-C7 and lumbar spine, and Fibromyalgia. In the 20 years Ive had pain, I"ve been though many treatments including PT, tens unit, bio feedback,injections, nerve ablations, you name it. I'm prescribed Cymbalta 60 mg for Fibro and anxiety as well as 225 mg of Lyrica. I have been on and off various painkillers too. I'm currently on a long acting oxycodone of 13.5 mg and once a day one 15 mg of IR oxycodone. This has been my regime for a few months now as I switched from 15 mg IR oxycodone. Now for those who are worried about me ODing…I understand. I actually hype-vigilant about my meds. (And I have my hubby and son who watch) Years ago I was on 15 mg Fentanyl patch for 10 months and came off it in one month with no side effects.
Right now I'm really struggling with this rotten pain. I have no appetite, either can't sleep or nap during the day.

@jmweissler

Hi. Sorry for delay in responding. My Mom passed on Wednesday so it has been a very tough few days. I also had Mohs surgery to remove a Basel Cell Carcinoma and then plastic surgery to repair the hole left by the Mohs surgery. It had to be done 3 weeks prior to my SI Joint fusion which is on 10/3.

Here is my story of Medical Marijuana. I was on the maximum dosage of Oxycodone, Oxycontin & Fentanyl for about 7 years.My family decided that I needed to come off the opioids. I did this cold turkey with the exception of the Fentanyl. At the same time New York State passed the Medical Marijuana program but not for chronic pain. Finally they added this as an eligible condition. My doc couldn't decide what was chronic pain. I pushed & pushed until he made a decision. It took him 6 months to finally do it. During this wait someone suggested that I try non-medical marijuana. I did and It worked better than any other pain relief method that I tried. After the wait, I became his first registered chronic pain patient. He prescribed a tincture that you put on your tongue. It tasted horrible and took over 3 hours to actually work. I told them that this was not working for me and they said this is all that they will prescribed. I left the practice after 13 years. I did lots of research and found a practice that prescribed other options. They prescribed a vape that was 20:1 (THC to CBD). This was definitely better than the tincture but not as good as "pot". Medical Marijuana is not insured as the Federal Government considers marijuana & its derivatives illegal. It costs approximately $400 per month for the medical marijuana.I have decided to stick with the pot ($400 per month) which helps me way better than anything else has. As with opioids, most folks with severe chronic pain don't get the "buzz" that others typically get so I am not "stoned". Unfortunately, pot is illegal in NYS so I am a criminal but with less pain so I will take it. Every state that has legalized medical marijuana has different policies so do your research. It is very costly and this will not change until someone (such as a President) recognizes the potential of marijuana. So get out and vote.It's insane that you can kill yourself with opioids and the Federal Government is OK with that! I hope that this info helps.

If there is any research anyone needs, please let me know as I have LOTS of time on my hands & love to do research. Hang in there 🙂

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I'm sorry for your loss. Good luck to you and thank you for sharing.

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@rwinney

That's a good plan. Good luck at the Doctor tomorrow. Have you had RFA prior?

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@rwinney Hi Rachel,
In one post you asked about lidocaine infusions, if I had them. I don't and that was one of the items I talked to my doc about. He doesn't do them. He has not seen enough relief in patients he and his partners have tried them. Also he said with me having hypertension it may not be good. It is used with epinephrine to raise blood pressure. The pain management Doctor is supportive for me to try mm. I did have RFA on my lumbar spine about 8 years ago. It wasn't until late last year that I had those old familiar pains. I've delayed the procedure for about 6 weeks though. My husband had 2 C spine fusions in 2018. He is now fused from C3 – C7. Next week he will have A spine stimulator installed in his spine so "hopefully" he will get some pain relief. The following week it will be taken out, replaced if successful with Abbott spine stimulator. Since our Doctor is an hours drive, it will put quite a bit of strain on me. It hurts my legs to drive. Our 28 yr old son lives with us but he starts a new job this Thursday. You gotta take the good and the bad right?!

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@sandytoes14

@rwinney Hi Rachel,
In one post you asked about lidocaine infusions, if I had them. I don't and that was one of the items I talked to my doc about. He doesn't do them. He has not seen enough relief in patients he and his partners have tried them. Also he said with me having hypertension it may not be good. It is used with epinephrine to raise blood pressure. The pain management Doctor is supportive for me to try mm. I did have RFA on my lumbar spine about 8 years ago. It wasn't until late last year that I had those old familiar pains. I've delayed the procedure for about 6 weeks though. My husband had 2 C spine fusions in 2018. He is now fused from C3 – C7. Next week he will have A spine stimulator installed in his spine so "hopefully" he will get some pain relief. The following week it will be taken out, replaced if successful with Abbott spine stimulator. Since our Doctor is an hours drive, it will put quite a bit of strain on me. It hurts my legs to drive. Our 28 yr old son lives with us but he starts a new job this Thursday. You gotta take the good and the bad right?!

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Right. Seems to be the way it goes. Good luck to the whole family!

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@jmweissler

Hi. Sorry for delay in responding. My Mom passed on Wednesday so it has been a very tough few days. I also had Mohs surgery to remove a Basel Cell Carcinoma and then plastic surgery to repair the hole left by the Mohs surgery. It had to be done 3 weeks prior to my SI Joint fusion which is on 10/3.

Here is my story of Medical Marijuana. I was on the maximum dosage of Oxycodone, Oxycontin & Fentanyl for about 7 years.My family decided that I needed to come off the opioids. I did this cold turkey with the exception of the Fentanyl. At the same time New York State passed the Medical Marijuana program but not for chronic pain. Finally they added this as an eligible condition. My doc couldn't decide what was chronic pain. I pushed & pushed until he made a decision. It took him 6 months to finally do it. During this wait someone suggested that I try non-medical marijuana. I did and It worked better than any other pain relief method that I tried. After the wait, I became his first registered chronic pain patient. He prescribed a tincture that you put on your tongue. It tasted horrible and took over 3 hours to actually work. I told them that this was not working for me and they said this is all that they will prescribed. I left the practice after 13 years. I did lots of research and found a practice that prescribed other options. They prescribed a vape that was 20:1 (THC to CBD). This was definitely better than the tincture but not as good as "pot". Medical Marijuana is not insured as the Federal Government considers marijuana & its derivatives illegal. It costs approximately $400 per month for the medical marijuana.I have decided to stick with the pot ($400 per month) which helps me way better than anything else has. As with opioids, most folks with severe chronic pain don't get the "buzz" that others typically get so I am not "stoned". Unfortunately, pot is illegal in NYS so I am a criminal but with less pain so I will take it. Every state that has legalized medical marijuana has different policies so do your research. It is very costly and this will not change until someone (such as a President) recognizes the potential of marijuana. So get out and vote.It's insane that you can kill yourself with opioids and the Federal Government is OK with that! I hope that this info helps.

If there is any research anyone needs, please let me know as I have LOTS of time on my hands & love to do research. Hang in there 🙂

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@jmweissler, @rwinney, Good evening to both of you. And thank you @jmweissler for responding with some pertinent information. Unfortunately, everything you said has a good chance of being true, in states that have a medical use product list that is only for licensed conditions.

CA had medical use only for a few years. It was not a problem to get the license for chronic pain. It was a real problem to find products of consistent good quality. I do need help with the meaning of “pot” as you refer to it. What types of products fit in the category of “pot”. Thanks so much, May you have a peaceful sleep. Chris

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@jmweissler

Hi. Sorry for delay in responding. My Mom passed on Wednesday so it has been a very tough few days. I also had Mohs surgery to remove a Basel Cell Carcinoma and then plastic surgery to repair the hole left by the Mohs surgery. It had to be done 3 weeks prior to my SI Joint fusion which is on 10/3.

Here is my story of Medical Marijuana. I was on the maximum dosage of Oxycodone, Oxycontin & Fentanyl for about 7 years.My family decided that I needed to come off the opioids. I did this cold turkey with the exception of the Fentanyl. At the same time New York State passed the Medical Marijuana program but not for chronic pain. Finally they added this as an eligible condition. My doc couldn't decide what was chronic pain. I pushed & pushed until he made a decision. It took him 6 months to finally do it. During this wait someone suggested that I try non-medical marijuana. I did and It worked better than any other pain relief method that I tried. After the wait, I became his first registered chronic pain patient. He prescribed a tincture that you put on your tongue. It tasted horrible and took over 3 hours to actually work. I told them that this was not working for me and they said this is all that they will prescribed. I left the practice after 13 years. I did lots of research and found a practice that prescribed other options. They prescribed a vape that was 20:1 (THC to CBD). This was definitely better than the tincture but not as good as "pot". Medical Marijuana is not insured as the Federal Government considers marijuana & its derivatives illegal. It costs approximately $400 per month for the medical marijuana.I have decided to stick with the pot ($400 per month) which helps me way better than anything else has. As with opioids, most folks with severe chronic pain don't get the "buzz" that others typically get so I am not "stoned". Unfortunately, pot is illegal in NYS so I am a criminal but with less pain so I will take it. Every state that has legalized medical marijuana has different policies so do your research. It is very costly and this will not change until someone (such as a President) recognizes the potential of marijuana. So get out and vote.It's insane that you can kill yourself with opioids and the Federal Government is OK with that! I hope that this info helps.

If there is any research anyone needs, please let me know as I have LOTS of time on my hands & love to do research. Hang in there 🙂

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@jmweissler, I want to acknowledge your Mother’s passing. That is a very rough time. May your special memories console you. Chris

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I use methadone 20 mg 10 mg twice daily that has helped me over the last 4 years but I have had a increase in pain and hoping to get it back under control some how, its very hard all this.

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@dazzah1234

I use methadone 20 mg 10 mg twice daily that has helped me over the last 4 years but I have had a increase in pain and hoping to get it back under control some how, its very hard all this.

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@dazzah1234 Good evening @dazzah1234, welcome to Connect. I have no medical background, just a willingness to listen and to share information with you. Would it be possible for you to tell me about your pain? Do you have a diagnosis as to its cause? Let's start with that very important information about you. May you be safe and protected. Chris

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@jmweissler

Hi. Sorry for delay in responding. My Mom passed on Wednesday so it has been a very tough few days. I also had Mohs surgery to remove a Basel Cell Carcinoma and then plastic surgery to repair the hole left by the Mohs surgery. It had to be done 3 weeks prior to my SI Joint fusion which is on 10/3.

Here is my story of Medical Marijuana. I was on the maximum dosage of Oxycodone, Oxycontin & Fentanyl for about 7 years.My family decided that I needed to come off the opioids. I did this cold turkey with the exception of the Fentanyl. At the same time New York State passed the Medical Marijuana program but not for chronic pain. Finally they added this as an eligible condition. My doc couldn't decide what was chronic pain. I pushed & pushed until he made a decision. It took him 6 months to finally do it. During this wait someone suggested that I try non-medical marijuana. I did and It worked better than any other pain relief method that I tried. After the wait, I became his first registered chronic pain patient. He prescribed a tincture that you put on your tongue. It tasted horrible and took over 3 hours to actually work. I told them that this was not working for me and they said this is all that they will prescribed. I left the practice after 13 years. I did lots of research and found a practice that prescribed other options. They prescribed a vape that was 20:1 (THC to CBD). This was definitely better than the tincture but not as good as "pot". Medical Marijuana is not insured as the Federal Government considers marijuana & its derivatives illegal. It costs approximately $400 per month for the medical marijuana.I have decided to stick with the pot ($400 per month) which helps me way better than anything else has. As with opioids, most folks with severe chronic pain don't get the "buzz" that others typically get so I am not "stoned". Unfortunately, pot is illegal in NYS so I am a criminal but with less pain so I will take it. Every state that has legalized medical marijuana has different policies so do your research. It is very costly and this will not change until someone (such as a President) recognizes the potential of marijuana. So get out and vote.It's insane that you can kill yourself with opioids and the Federal Government is OK with that! I hope that this info helps.

If there is any research anyone needs, please let me know as I have LOTS of time on my hands & love to do research. Hang in there 🙂

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@jmweissler I’m so sorry about your mom. I understand what a difficult time this is. Please take care of yourself. My prayers are with you

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@artscaping

@jmweissler, I want to acknowledge your Mother’s passing. That is a very rough time. May your special memories console you. Chris

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Thank you for very kind words 🙂

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@artscaping

@jmweissler, @rwinney, Good evening to both of you. And thank you @jmweissler for responding with some pertinent information. Unfortunately, everything you said has a good chance of being true, in states that have a medical use product list that is only for licensed conditions.

CA had medical use only for a few years. It was not a problem to get the license for chronic pain. It was a real problem to find products of consistent good quality. I do need help with the meaning of “pot” as you refer to it. What types of products fit in the category of “pot”. Thanks so much, May you have a peaceful sleep. Chris

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Hi Chris. Here is a link to an article found that discusses the Medical Marijuana programs in the US – https://www.ncbi.nlm.nih.gov/pmc/articles/PMC6398594/. As far as "pot", it is just good old marijuana (cannabis, reefer, weed…). Legal in some states but not in mine. It is not vape. I roll joints or use a bong (water pipe). A little at a time to help alleviate some of the pain. If it gives me a buzz, I just go with the flow. I am disabled so I am at home almost all of the time so getting high is an added bonus, at least for me. If you live in a state with legalized marijuana and you live in pain, try it. I literally have tried every pain management protocol available and pot is the best alternative for me. Definitely not for everyone but it's worth a try. Here's an article to better help understand the use of marijuana for pain – https://www.leafly.com/news/health/how-marijuana-relieves-different-types-of-pain. Happy reading! 🙂

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@sandytoes14

@gingerw Hi Ginger, I'm not sure its visualization but when the pain is a 10 (and I'm too stubborn to go to the hospital, partly in fear of being labled) I can look at a picture of the ocean and imagine I'm sitting there. I try to feel the sun and hear the ocean. There is an app on my phone CALM and I play the ocean sound. That helps bring the pain down a point or two.At least its not stabbing me anymore. I had acupuncture and it helped some. Maybe I'll look into that in my area. Thank you.

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Great suggestion!

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@sandytoes14

@jmweissler I’m so sorry about your mom. I understand what a difficult time this is. Please take care of yourself. My prayers are with you

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Greatly appreciate your words of support 🙂

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@jmweissler More power to you! I'm glad you're getting some relief.

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@scruffy1

@jmweissler More power to you! I'm glad you're getting some relief.

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That I do not know yet and haven't decided if I want to go for an initial visit with the doc or not. See, like Bova, where ever you go they want to sell you their products and make money. I get they are in a business.

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@rwinney

That I do not know yet and haven't decided if I want to go for an initial visit with the doc or not. See, like Bova, where ever you go they want to sell you their products and make money. I get they are in a business.

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ooops…that was not meant for here. Disregard.

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