1. < Fibromyalgia

Feeling at my wits end with Chronic Pain and Fibromyalgia

Posted by Jen, Alumna Mentor @sandytoes14, Aug 19, 2019

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.

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

Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 15, 2019
In reply to @artscaping "Good evening, Rachel, @rwinney. Thank you so much for being a bright and shining light in..." + (show)
@artscaping

Good evening, Rachel, @rwinney. Thank you so much for being a bright and shining light in my day. You are so good at writing with descriptive words that say you care. The challenges you are facing appear to be hitting from every front, relentless pain, overwhelmingly drab financial issues, continuing and multiple medical conditions. And yet, what comes across is someone with a great smile and a twinkle in her eye. I want to contribute to your efforts to keep your life moving forward in a healthy and happy manner.

What I didn't realize in time was that every fall from a horse, each and every rear-end collision, every flight of steps or mountain I fell down, could not be eradicated by all of those let's fix it surgeries by well-meaning and skilled surgeons. They all came with a price.......not in dollars but in the onslaught of lifestyle restrictions.

When two of my friends asked me what I was doing for the pain in the middle of the night, with a full moon and howling coyotes out my window....I responded that I just sat on the edge of the bed and cried. They are both nurses and told me to follow them. That was five years ago and my introduction to medical cannabis.

What are you most concerned about this evening? How can I help you find the best options for you? I would like to start by unequivocally stating that I am not going through my life high. The druggy feeling from Percocet or Dilaudid is much more than you ever need to feel from any of the three best medical cannabis products, tinctures, topicals and with caution, vaping oils.

Perhaps it might be possible for you to tell me about your pain over a 24 hr period. Have you categorized it in any way? Do you have numbness, tingles or needle-like pricks anywhere in your body? Do you have electrical zaps in your body at 5:30 a.m.? Do you ever have a feeling that there is a fire right beneath your skin over your abdomen? How else would you describe the location, type, and level of your pain?

Have a peaceful sleep tonight. Chris

Jump to this post

Hello Chris

I sincerely thank you for such a heartfelt response. You pegged me without a doubt! I do care alot.

I will first start by saying that my whole life I have been anti drugs, alcohol, smoking. I have been forced to become accepting of my need for pain medication. Early on I resisted meds and tried my best to use inner strength, will power and natural remedies. It was a fail and I eventually opened the door to medications out of necessity, impatience and desperation. Currently I take
Norco 5-325 (hydrocodone/acetaminophen), Lyrica CR 165mg and Duloxetine 60mg. These were all drugs I agreed to for quick support while Doctors and I continued to trudge through to a final diagnosis in February.

Now that I have gained knowledge while still working on acceptance of my diagnosis, I realize it's with me for life...It's time to stop masking pain, attempt to regenerate nerves (if possible) and allow my body to move forward as healthy as possible. In finding that balance I am building up my supplement/vitamin intake, decreasing sugars and processed foods, trying to keep my activity balanced between light excercise (as my body permits) and appropriate rest.

I want to find substitutes for my current meds. Ones that will not cause long term harm to my brain and organs, however, I know there are no guarantees with anything. It's a scary thing because I want qiick help when I need it for pain and I'm not ready to wean off meds until I know an effective back up plan in is place.

As for my pain... I feel like my body is a loaded weapon with a plethora of symptoms. The most debilitating pain stems from my legs...
numbness, pins and needles, cold flush, sunburn sensations, vibrations, heavy and dead feeling. Cramping, pain and tightness in calves and multiple days with unrelenting burning ache. I now have one speed of walking and need to stop and take breaks. If I can drive, it is limited to 15 minutes max one way and that may mean putting the car in park at traffic lights or just coasting when I can to avoid using my legs.

My right foot has constant pain in big toe joint with shocking jolts at times. Across shoulders down arms burn with weakness in hands and fingers at times or deep bone aches with tingles. Right shoulder and arm will be stricken with pain and throb then go numb and tingle. Neck and up back of head get tight and sore at times. Scalp goes through days of sensitivity to touch. Difficulty regulating body temp, although this has gotten much better since B12 has leveled off, as did palpitations, dizziness and heavy breathing.

Once I fall asleep at night I'm generally able to stay asleep. It's about getting to that point though with the discomfort of pain and various symptoms. Many nights I lay awake for an hour or two before I can find a comfortable position or compromise, either waiting for the next hydro to kick in or finding an alternative like heat.

My pain meds do provide comfort at times and other times they simply can't keep up. I take 3 hydro on a good day and 5 on worse days.

I try so hard to keep stress to a minimum because that entices my nerves but some days it wins out. My daughter just went to college and my husband and I are adjusting to being empty nesters after 26 years.

That means my son is 26 and is getting married next June. He just got a beautiful German Shepherd puppy! My children are my best medicine and for me distraction can be key.

I do enjoy these positive parts of my life and am very grateful although my limitations frustrate me tremendously when I think of not being able to be what I used to be in regard to grandchildren one day.

To conclude, thank you so very much for taking the time to read this super long post! I look forward to any insight and advice you wish to share or offer and hope you are having a pleasant day. You are a gem!

~Rachel

REPLY
2 replies
kimspr3 | @kimspr3 | Sep 16, 2019
In reply to @nosheen "Can u name the cbd oil" + (show)
@nosheen

Can u name the cbd oil

Jump to this post

This is Kim, I don't know if you replied to me but I do take CBD oil and pills from a reputable Compound Pharmacy called Town and Country. I won't buy it from other sites. You can look up, I'm-bued tincture of hemp. That is the oil I use under the tongue. It does help. Cost, $98.00. Grown in Colorado.

REPLY
kimspr3 | @kimspr3 | Sep 16, 2019
In reply to @rwinney "My friend uses it as well and swears by it." + (show)
@rwinney

My friend uses it as well and swears by it.

Jump to this post

I also don't know what I would do without it. I take 300 to sleep.

REPLY
Jen, Alumna Mentor | @sandytoes14 | Sep 16, 2019

@rwinney Thank you for your kind words. We all go through so much when it comes to pain. I will check with my pain management doctor tomorrow about the infusion. Friday I was supposed to have RFA on lumbar spine, but my insurance company decided to hold things up. Next week I will see a medical marijuana provider to see if I qualify for medical cannibus. At that point I will take a look between the two options.

REPLY
1 reply
Jen, Alumna Mentor | @sandytoes14 | Sep 16, 2019
In reply to @rwinney "Hello Edda Nice to hear from you. When I was 8, my Mom had a motorcycle..." + (show)
@rwinney

Hello Edda
Nice to hear from you.

When I was 8, my Mom had a motorcycle accident which broke both of her legs multiple places. From that day forward I began observing my mother's massive life changes, challenges and chronic pain. 1978 meant less advancements in medicine... 4 months on her back in traction, one year bound to a wheel chair and on crutches, countless drugs, operations, infections, therapists, hospitals, doctors etc... As a matter of fact my mom was one of the first in NY state to be hooked up to the brand new technology of a tens unit for electric stim! The day of mom's accident, her Dr. wanted to amputate but Dad refused to let him because she was only 28 years old with a little girl to raise (yours truly). Fast forward 41 years later... who knows if that was the right decision. The Dr saved her legs but with repercussions. She has been through hell along the way and I have been along her side.

Before I began this post I was texting with my mom who is now 69 and really wearing down from all she's been through. She has always been THE MOST powerful, strong, stubborn and determined person I know. Her words to me just were... "Alot of times one feels the fight is gone. I am trying to stay positive."

Now, here I am with chronic pain of my own, on opiods after watching her need them for decades, trying to stay positive for her as well as myself and feeling bad for many folks on this forum. The one thing I have learned throughout it all is that none of us are truly alone in our misery and no matter the challenge... support, love and a sympathetic yet encouraging ear can be the best medicine ever!

Thank you for reading my story. I hope it occupied your mind and took away from your pain, even for a bit. Wishing you peace and comfort. Don't be a stranger. We can all help each other.
~Rachel

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@rwinney My mom was on opoids from a young age too. While pregnant with me she was put on Demerol to stop early contractions. It worked in the 1960's. Believe it or not I was NOT born addicted or anything. In fact, Mom said .I was the healthiest! But she kept taking opoids for different aliments broken vertabrae in multiple levels among the reasons. Like your mom,mine felt worn down and that's how I feel at 55. Nearly 30 years of pain will do that to anyone.

REPLY
Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 16, 2019
In reply to @rwinney "Hello Chris I sincerely thank you for such a heartfelt response. You pegged me without a..." + (show)
@rwinney

Hello Chris

I sincerely thank you for such a heartfelt response. You pegged me without a doubt! I do care alot.

I will first start by saying that my whole life I have been anti drugs, alcohol, smoking. I have been forced to become accepting of my need for pain medication. Early on I resisted meds and tried my best to use inner strength, will power and natural remedies. It was a fail and I eventually opened the door to medications out of necessity, impatience and desperation. Currently I take
Norco 5-325 (hydrocodone/acetaminophen), Lyrica CR 165mg and Duloxetine 60mg. These were all drugs I agreed to for quick support while Doctors and I continued to trudge through to a final diagnosis in February.

Now that I have gained knowledge while still working on acceptance of my diagnosis, I realize it's with me for life...It's time to stop masking pain, attempt to regenerate nerves (if possible) and allow my body to move forward as healthy as possible. In finding that balance I am building up my supplement/vitamin intake, decreasing sugars and processed foods, trying to keep my activity balanced between light excercise (as my body permits) and appropriate rest.

I want to find substitutes for my current meds. Ones that will not cause long term harm to my brain and organs, however, I know there are no guarantees with anything. It's a scary thing because I want qiick help when I need it for pain and I'm not ready to wean off meds until I know an effective back up plan in is place.

As for my pain... I feel like my body is a loaded weapon with a plethora of symptoms. The most debilitating pain stems from my legs...
numbness, pins and needles, cold flush, sunburn sensations, vibrations, heavy and dead feeling. Cramping, pain and tightness in calves and multiple days with unrelenting burning ache. I now have one speed of walking and need to stop and take breaks. If I can drive, it is limited to 15 minutes max one way and that may mean putting the car in park at traffic lights or just coasting when I can to avoid using my legs.

My right foot has constant pain in big toe joint with shocking jolts at times. Across shoulders down arms burn with weakness in hands and fingers at times or deep bone aches with tingles. Right shoulder and arm will be stricken with pain and throb then go numb and tingle. Neck and up back of head get tight and sore at times. Scalp goes through days of sensitivity to touch. Difficulty regulating body temp, although this has gotten much better since B12 has leveled off, as did palpitations, dizziness and heavy breathing.

Once I fall asleep at night I'm generally able to stay asleep. It's about getting to that point though with the discomfort of pain and various symptoms. Many nights I lay awake for an hour or two before I can find a comfortable position or compromise, either waiting for the next hydro to kick in or finding an alternative like heat.

My pain meds do provide comfort at times and other times they simply can't keep up. I take 3 hydro on a good day and 5 on worse days.

I try so hard to keep stress to a minimum because that entices my nerves but some days it wins out. My daughter just went to college and my husband and I are adjusting to being empty nesters after 26 years.

That means my son is 26 and is getting married next June. He just got a beautiful German Shepherd puppy! My children are my best medicine and for me distraction can be key.

I do enjoy these positive parts of my life and am very grateful although my limitations frustrate me tremendously when I think of not being able to be what I used to be in regard to grandchildren one day.

To conclude, thank you so very much for taking the time to read this super long post! I look forward to any insight and advice you wish to share or offer and hope you are having a pleasant day. You are a gem!

~Rachel

Jump to this post

Rachel, good afternoon. Your post was amazingly thorough and genuine. This is what I learned. You want to be free of any adherence to medications and their side effects. You want to be as pain-free as possible to enjoy your family and activities that have meaning in your life.

If I could offer the choice of a plant-derived treatment to assist you with your daily pain challenges and a promise to always care about your progress from afar, what would you choose? If it is medical cannabis then here is what a typical day might be:

Morning: Tincture 1:1 CBD/THC Topical: 1:3 or 3:1
Afternoon: Tincture 2:1 CBD/THC Topical: 1:3 or 3:1
Evening: Same
Bedtime: Same

While there hasn't been enough time to design and develop longitudinal studies, there may be some clinical trials. Initially, you would be an experimenter....noting your responses and reactions. For example, I acknowledge and note those times when I have a 100% pain-free moment. It just happens and stops me in my tracks.

Do you have legal access to medical cannabis now? I notice that you didn't mention Yoga. Are you able to stretch comfortably? Have you tried restorative yoga? At this time, do you practice mindful meditation? I hope you sleep well again tonight with an appreciation for how far you have come in acknowledging and accepting your medical challenges.

REPLY
2 replies
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 16, 2019
In reply to @sandytoes14 "@rwinney Thank you for your kind words. We all go through so much when it comes..." + (show)
@sandytoes14

@rwinney Thank you for your kind words. We all go through so much when it comes to pain. I will check with my pain management doctor tomorrow about the infusion. Friday I was supposed to have RFA on lumbar spine, but my insurance company decided to hold things up. Next week I will see a medical marijuana provider to see if I qualify for medical cannibus. At that point I will take a look between the two options.

Jump to this post

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

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 16, 2019
In reply to @artscaping "Rachel, good afternoon. Your post was amazingly thorough and genuine. This is what I learned. You..." + (show)
@artscaping

Rachel, good afternoon. Your post was amazingly thorough and genuine. This is what I learned. You want to be free of any adherence to medications and their side effects. You want to be as pain-free as possible to enjoy your family and activities that have meaning in your life.

If I could offer the choice of a plant-derived treatment to assist you with your daily pain challenges and a promise to always care about your progress from afar, what would you choose? If it is medical cannabis then here is what a typical day might be:

Morning: Tincture 1:1 CBD/THC Topical: 1:3 or 3:1
Afternoon: Tincture 2:1 CBD/THC Topical: 1:3 or 3:1
Evening: Same
Bedtime: Same

While there hasn't been enough time to design and develop longitudinal studies, there may be some clinical trials. Initially, you would be an experimenter....noting your responses and reactions. For example, I acknowledge and note those times when I have a 100% pain-free moment. It just happens and stops me in my tracks.

Do you have legal access to medical cannabis now? I notice that you didn't mention Yoga. Are you able to stretch comfortably? Have you tried restorative yoga? At this time, do you practice mindful meditation? I hope you sleep well again tonight with an appreciation for how far you have come in acknowledging and accepting your medical challenges.

Jump to this post

Hello Chris

Thank you for your sincere, informative reply. At this time I can't commit to choice but, I can commit to knowledge and research.

I greatly appreciate you sharing the cannabis break down and how you work with it. I have not yet spoke to my PCP, who once suggested cannabis, but intend to about medical access. I'm so happy that you achieve pain relief which I can see comes from a variety of places.

I taught myself mindfulness as a necessity for getting through migraine pain. It definitely helped and I continue to use it for relaxation. I have minimally dabbled in my own yoga attempts. Not always comfortable to my body but never tried restorative yoga. I will look it up online and see what I can learn. I know need to be more discipline in this area and not just go to it when feeling desperate.

Once again, thanks so much for sharing Chris. Didn't mean to put a burden on you but, I will say this...this forum and people like you are worth your weight in gold and I get more here than I ever did paying a $40 co-pay for a half an hour at a clinical chronic pain physchologist office!

Rachel

REPLY
Oh My Aching Back & Neck | @jmweissler | Sep 17, 2019
In reply to @rwinney "Yes please, I too would like to hear your cannibus journey @jmweissler. Chris, I'm really racking..." + (show)
@rwinney

Yes please, I too would like to hear your cannibus journey @jmweissler. Chris, I'm really racking my brain here. Hydrocodone does not help my pain enough and I've been on an opioid for 2 years. I'm opening the door to more supplements being added, keep my body moving as best I can, find the joy in each day as best I can, am going to try PEA cream (I think). I'm dedicating to regenerating, if possible, my nerves instead of masking pain. However, it will be a long while at this rate before I drop pain pills as they give me benefit and some relief, just not enough. My IV lidocaine infusions are simply not working on my legs as I hoped. They are debilitating. Heat and a tight wrap works best. My doseage of lidocaine will be upped Monday again then only one more increase before I'm maxed out. Met with neurologist this week to discuss overall game plan. Im incredibly frustrated as my pain is relentless and persistent. I was a very active and involved woman and over the past 3 years my life has sloooowed down (via multiple diagnosis) and now is trying its best to come to a screaching halt. I heed all of the advice from everyone on this forum but at the end of the day it's about what my body allows and doesn't allow me to do. Another big component for me personally are finances. I have been on disability for 2 years and am going on Medicare soon. I need to find proper supplemental isurance to cover the possibility of future treatments that are in my neurologist's wheel house. Including IVIG and plasmapherisis. Truth is I don't know if I'm coming or going. Always lived week to week before my disability now we are really drowning. Not looking for sympathy, I only bring this up because so many of the pain treatments people suggest are out of pocket. It's tough when the pocket is empty. It's a shame that it's cheaper for me to spend $4 per month through my insurance on hydro, and put opiods in my system, verses a natural product that insurance will not cover. As far as cannibus...I DO NOT wish to go through life high however, I DO want pain relief. Ughh, frustrating.

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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 🙂

REPLY
5 replies
Mentor
Ginger, Volunteer Mentor | @gingerw | Sep 17, 2019
In reply to @jmweissler "Hi. Sorry for delay in responding. My Mom passed on Wednesday so it has been a..." + (show)
@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 🙂

Jump to this post

@jmweissler My sincere condolences on your mother's passing. And, thank you for taking the time today to write such a thorough response in light of the busyness of your life right now.
Ginger

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