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 14, 2019
In reply to @jmb73 "I also have severe fibromyalgia and osteoarthritis plus Sjogrens syndrome. My orthopedic ordered an MRI to..." + (show)
@jmb73

I also have severe fibromyalgia and osteoarthritis plus Sjogrens syndrome. My orthopedic ordered an MRI to check for bone cancer as my mother died of it. It showed arthritis in every joint. It's even attacking my new artificial hip. He then checked me for fibromyalgia and I responded to all the trigger sites. He said it was the worse case he had ever seen! I am taking medical marijuana- CBD with a .2mg of THC. I buy them separately and sometimes don't add the THC. I buy from a reputable firm and it has really helped. Last Jan. I had Gamma surgery for a meningioma and when the helmet was removed the headache and nausea was awful. The nurse had me take 1mg of CBD (they had told me to take it with me) and it got rid of the nausea almost immediately and the headache in about 30 minutes. I have COPD (never smoked), asthma, and AFIB. My pulmonologist told me to take the CBD to relax me when I had the gamma laser surgery as he was concerned about the type of drugs they were going to give me. The CBD really helped to relax me and it helps with the pain.. If you decide to buy it make sure the firm is reputable. Rely on the CBD consultants to help you decide on the dosage. In FL you have to go the a marijuana approved Dr. and then he/she will notify the State that you have the qualifying diseases and then you pay the State for your license. I am not happy with the marijuana Dr. as he gave me a list of things that I should take. He listed vaping (never with COPD), and 20mg of THC. I take .2 mg. BIG difference. The consultant said 20mg was way too high. He told me to take more CBD and a little THC. Their motto " Start low and go slow". Also my husband has really bad neuropathy from diabetes. He has started taking .4 mg of CBD and he can now sleep without pain in his legs. I hope this helps. Good luck.

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Very helpful. Thank you.

REPLY
peggyann69 | @peggyann69 | Sep 14, 2019
In reply to @summertime4 "@edda Good morning. I just read your post. I empathize with you and also relate. I..." + (show)
@summertime4

@edda Good morning. I just read your post. I empathize with you and also relate. I think a vicious cycle is occurring in my life too. I am in pain and have difficulty getting around, because I really don't know, but I do. This makes me avoid activities and even family gathering. In turn the depression comes in which stimulates our pain button and here we are. I also take percocet and get frightened. I also was an addiction counselor for 28 years and certainly know the perils of opiate and of course other drug use. At the same time I am tired of pain and the percocet helps so much, except for the foot pain. They only take the edge off the foot. I have osteoarthritis and several back issues and when that attacks me they wil do the job of relieving the pain. I take them as prescribed and so be it I think a suggestion for both of us right now is to get away from the depression. I take an antidepressant (obviously not working well), but in spite of pain I need to get back into water therapy, which is so available to me. I am also going back into grief counseling (lost my husband 18 months ago) and TRY to socialize a bit. Al sounds good, right. Now to do it. If the opiods help to down size your pain and make it a little easier to get about and you are taking them as directed I would not put all my focus on being a drug addict. Many drugs that people abuse are the same ones that keep people walking. God bless

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Thanks for the reminders--water exercise really helps, and I hadn't thought about it but I was in grief counseling for six months last year when deaths of close friends started to pile up--had to finally deal emotionally with my father's suicide nearly forty years ago...that might well be a part of why this summer I feel better than I have since I started this journey of dealing with fibro and chronic fatigue--of course, like most of us, joint and disc damage, depression and anxiety all a part of it. So much self care needed now--well, we are worth it! I am also in AA and was long time in alanon with lots of therapy--what a project I have been!

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peggyann69 | @peggyann69 | Sep 14, 2019
In reply to @lioness "@rwinney Hi I too have a lot of pain from 2 fractures in my back fibromyalgia..." + (show)
@lioness

@rwinney Hi I too have a lot of pain from 2 fractures in my back fibromyalgia my nerves are burning from back area Dr. wants to put cement in I wont do that . I have some tools that are cheap that you may consider . Hot showers ,Epsom salts bath in it in tub or just a washcloth, Vinegar works as well, Epsom salt rub by Procure it is great . Dr. Teal,s E.S. for showers . Ice when edema , Tens unit for tight muscles,my chiropractor told me about this, Light exercise. Of course I do pain meds . Brace for my back. Just some suggestions

Jump to this post

ooh, yes, epsom salts do help. I have Bragg's vinegar for digestive stuff,never considered it as a rub! Great idea! Thanks!

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j5852asa5162 | @j5852asa5162 | Sep 14, 2019

Jen,
I complexly understand. I too have degenerative discs from my C3 through mu Ton1, and in my L4-L5 areas, with mild scoliosis in my thoracic spine. I am constantly in pain, but have a sensitivity to medications, so I can't usually find one that fits my needs long term. So, trying to maintain my career, while pursing my education, and taking care of my family is exhausting. This causes extreme mental health concerns because I don't feel well, while having to continue to show up daily at work/school/home and perform my duties. So far I have consistently been getting needle point injections in my spine for my neck pain, and trigger point injections for my back and shoulder pain. Nothing is being done for my neuropathy, or sleep disorder, because they believe psychiatric meds will improve sleep and reduce symptom. This hasn't happened yet, and I refuse to believe that I am now required to live with receiving this many shots consistently for the rest of my life to have relief, or go through the testing of new meds that I have a litany of side effects from. I am fearful of what I am doing to my kidneys with these meds. What do you do when you need to perform, but the treatment is worse than the disease and there are not a lot of current alternatives?

Jada

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1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 14, 2019
In reply to @j5852asa5162 "Jen, I complexly understand. I too have degenerative discs from my C3 through mu Ton1, and..." + (show)
@j5852asa5162

Jen,
I complexly understand. I too have degenerative discs from my C3 through mu Ton1, and in my L4-L5 areas, with mild scoliosis in my thoracic spine. I am constantly in pain, but have a sensitivity to medications, so I can't usually find one that fits my needs long term. So, trying to maintain my career, while pursing my education, and taking care of my family is exhausting. This causes extreme mental health concerns because I don't feel well, while having to continue to show up daily at work/school/home and perform my duties. So far I have consistently been getting needle point injections in my spine for my neck pain, and trigger point injections for my back and shoulder pain. Nothing is being done for my neuropathy, or sleep disorder, because they believe psychiatric meds will improve sleep and reduce symptom. This hasn't happened yet, and I refuse to believe that I am now required to live with receiving this many shots consistently for the rest of my life to have relief, or go through the testing of new meds that I have a litany of side effects from. I am fearful of what I am doing to my kidneys with these meds. What do you do when you need to perform, but the treatment is worse than the disease and there are not a lot of current alternatives?

Jada

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Hi Jada
I feel your pain. After I fought through cataracts and cornea transplants, a few years later I developed chronic migraine, neck/spine issues then later a diagnosis of Small Fiber Neuropathy which put many pieces of my puzzle together. I worked through it all with a family, children in sports and many activities, and managed a branch of the bank I worked at for 27 years. Inevitably I had to bow out and go on what I had hoped to be temporary disability. Unfortunately, that turned permanent. It is a tough challenge to juggle so many hats and be responsible for so much while be in pain. I suggest asking for help from wherever it may be possible. I hope you have a supportive network around you because that is so important. Keep persevering and be your own advocate through it all. Search for answers, remedies and don't give up. Here I am, doing exactly that through this forum. I'm glad you posted. Reaching out here will offer you support, ideas and suggestions. Keep grinding.
Rachel

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Mentor
Chris Trout, Volunteer Mentor | @artscaping | Sep 14, 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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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

REPLY
1 reply
nosheen | @nosheen | Sep 15, 2019
In reply to @jmb73 "I also have severe fibromyalgia and osteoarthritis plus Sjogrens syndrome. My orthopedic ordered an MRI to..." + (show)
@jmb73

I also have severe fibromyalgia and osteoarthritis plus Sjogrens syndrome. My orthopedic ordered an MRI to check for bone cancer as my mother died of it. It showed arthritis in every joint. It's even attacking my new artificial hip. He then checked me for fibromyalgia and I responded to all the trigger sites. He said it was the worse case he had ever seen! I am taking medical marijuana- CBD with a .2mg of THC. I buy them separately and sometimes don't add the THC. I buy from a reputable firm and it has really helped. Last Jan. I had Gamma surgery for a meningioma and when the helmet was removed the headache and nausea was awful. The nurse had me take 1mg of CBD (they had told me to take it with me) and it got rid of the nausea almost immediately and the headache in about 30 minutes. I have COPD (never smoked), asthma, and AFIB. My pulmonologist told me to take the CBD to relax me when I had the gamma laser surgery as he was concerned about the type of drugs they were going to give me. The CBD really helped to relax me and it helps with the pain.. If you decide to buy it make sure the firm is reputable. Rely on the CBD consultants to help you decide on the dosage. In FL you have to go the a marijuana approved Dr. and then he/she will notify the State that you have the qualifying diseases and then you pay the State for your license. I am not happy with the marijuana Dr. as he gave me a list of things that I should take. He listed vaping (never with COPD), and 20mg of THC. I take .2 mg. BIG difference. The consultant said 20mg was way too high. He told me to take more CBD and a little THC. Their motto " Start low and go slow". Also my husband has really bad neuropathy from diabetes. He has started taking .4 mg of CBD and he can now sleep without pain in his legs. I hope this helps. Good luck.

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Can u name the cbd oil

REPLY
1 reply
kimspr3 | @kimspr3 | Sep 15, 2019

Hello Jada, May I suggest Trazadone for sleep. It is a Antidepressant I only take before sleep. It works so well for me including the chronic pain I sleep through the night. Having a good night sleep helps so much.

REPLY
babette | @babette | Sep 15, 2019

I second Trazodone for sleep. Don't know what I would do without it. If you decide to take it be aware that it can take some time to get the right dosage. They usually start you low, but my psych NP is really experienced and upped my dose pretty quickly. I need 300 mg to sleep. Good luck!

REPLY
1 reply
Mentor
Rachel, Volunteer Mentor | @rwinney | Sep 15, 2019
In reply to @babette "I second Trazodone for sleep. Don't know what I would do without it. If you decide..." + (show)
@babette

I second Trazodone for sleep. Don't know what I would do without it. If you decide to take it be aware that it can take some time to get the right dosage. They usually start you low, but my psych NP is really experienced and upped my dose pretty quickly. I need 300 mg to sleep. Good luck!

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My friend uses it as well and swears by it.

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