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.

Darn nerves anyway, but we can't live without them.

I am so sorry to hear of your challenges. It can wear you down, but keep pushing and looking for answers. Don't overlook the little things on your journey.

I experienced a spinal cord injury in 2006. At one time, I was on 300 mg of morphine and 100mcg of fentanly a day, in an attempt to control pain. We have tried all the drugs, had an SCS, and looked under all the rocks. 2 years ago, I really began to fail. I lost 90# in 2 years, and I kept getting sicker. We got an appointment at Mayo and have undergone 15 to 18 visits and tests this past year . We finally got to 2 doctors who had seen my condition CSS, and discovered a few things this past year.

Pain was horrific in my left hip for some reason. CSS can do that like CRPS. In Feb, we found that I had a hernia and had that repaired. Still worse. A year ago, I did the Cologuard test, and it came back positive for cancer. Had a Colonostrophy and they found nothing. My Mayo doctor ordered an endoscope to get a good look around my stomach. They found that I have an advanced case of Gastroparesis. We will have surgery to correct that. While they are in there, they will remove a 25mm mass, yes cancer from my stomach. The point in all of this, is that good things can come from the bad.

Keep looking, and don't give up. I have an Iowa Medical marajuana card and the Vap pens keep me going. I am sick constantly, sleep maybe 30 minutes a day. It keeps me going. When I was on all that morphine, I knew that I was dying. That's behind me. I'm going to live until I die, not die because I quite living. Moving /walking hurts like crazy, but once I stop moving, I will be done. As I laughingly say "you can't solve movement disorders without movement."

I wish you the very best journey possible. If I can help answer any questions you have, please let me know.

God bless your journey.

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@philipsnowdon

Hello to all of the fello pain suffers out there living with Chronic Fatigue Syndrome, Fibromyalgia, Chiari Malformation, Neuropathy and other Pain Sensitivity Disorders etc. I’ve dealt with and managed very severe pain for over 30 years from the above disease states. I’ve successfully managed opioids during that period of time and had too because they’ve been the only effective medications I’ve found to provide any kind of measurable relief and efficaciousness from. Living with debilitating pain is challenging enough. Trying to find physicians to work with you on this is even more difficult and challenging. The bottom line for all of us is to find whatever medication(s), treatment protocols or therapies etc that actually provide any successful
reduction in pain or qualify as efficacious. Unfortunately, the “war on drugs” that morphed into the “war on opioids” has been severely mismanaged and overflowing with too much disinformation, misunderstandings and ineffective management to effectively serve the patients who desperately need opioids to exist day to day and the doctors they rely upon to prescribe what’s proven to work and be most effective for them. Firstly and most importantly, counting the deaths that occur from people taking poisonous FENTANYL in the same category and statistics as legally prescribed opioids like OXYCODONE is both horribly misleading and bogus information that only complicates the situation and does not serve anybody’s best interests and has created extremely adverse effects on the legitimate pain patients who require them to survive day to day. It also unnecessarily threatens the licensing and well-being of legitimate physicians trying to assist and treat their patients with the only things available that provides the only meaningful and measurable amount of effective pain management available. There’s a very good reason why patients use “OPIOIDS,” they work when everything else does not!
There’s no factual evidence that supports the notion that legitimate long term opioid users eventually turn into people who overdose and die from their legally prescribed opioids. I’ve used them safely for 32 years along with other, stronger medications without any problems what so ever. Except when they’ve been difficult to get because one of my prescribing physicians has moved, retired, passed away or become disabled and is no longer able to practice. This is really a problem that was “invented” by various drug agencies in America and used as a deeply flawed and failed attempt to address all of the overdoses resulting from illegally purchased opioids and drugs which physicians rarely, if ever prescribe. They have been procured by illegal means and or sold on the street combined with Heroin, Fentanyl and other very dangerous narcotics which contain poison
and then taken by unsuspecting people seeking drugs.
Leave the legitimate Pain Patients and their responsible physicians alone and go after the people who are causing all of the real problems and killing the people in our society!!!!

Jump to this post

Amen.
I am a 65 year old woman who has had undiagnosed pain for the last 3 years. After multiple docs, lots of PT, injections, etc., I have given up on fixing the problem - I just want my life back. Luckily I have a PCP that prescribes me Vicodin and Gabapentin and works with me to try to manage my pain. I am so sick of hearing about the opioid crisis! I would love to read some statistics about how many of the opioid overdoses are people who legitimately started taking medication for pain.

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@ldb

Darn nerves anyway, but we can't live without them.

I am so sorry to hear of your challenges. It can wear you down, but keep pushing and looking for answers. Don't overlook the little things on your journey.

I experienced a spinal cord injury in 2006. At one time, I was on 300 mg of morphine and 100mcg of fentanly a day, in an attempt to control pain. We have tried all the drugs, had an SCS, and looked under all the rocks. 2 years ago, I really began to fail. I lost 90# in 2 years, and I kept getting sicker. We got an appointment at Mayo and have undergone 15 to 18 visits and tests this past year . We finally got to 2 doctors who had seen my condition CSS, and discovered a few things this past year.

Pain was horrific in my left hip for some reason. CSS can do that like CRPS. In Feb, we found that I had a hernia and had that repaired. Still worse. A year ago, I did the Cologuard test, and it came back positive for cancer. Had a Colonostrophy and they found nothing. My Mayo doctor ordered an endoscope to get a good look around my stomach. They found that I have an advanced case of Gastroparesis. We will have surgery to correct that. While they are in there, they will remove a 25mm mass, yes cancer from my stomach. The point in all of this, is that good things can come from the bad.

Keep looking, and don't give up. I have an Iowa Medical marajuana card and the Vap pens keep me going. I am sick constantly, sleep maybe 30 minutes a day. It keeps me going. When I was on all that morphine, I knew that I was dying. That's behind me. I'm going to live until I die, not die because I quite living. Moving /walking hurts like crazy, but once I stop moving, I will be done. As I laughingly say "you can't solve movement disorders without movement."

I wish you the very best journey possible. If I can help answer any questions you have, please let me know.

God bless your journey.

Jump to this post

Did you ever try other ways than vaping to use MM for pain? I'd like to apply for a MM card (located in MN).

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Yes, I have tried most methods. With Leaf, you can find specific types that are high in Caryophines. These work on the CB2 receptor in the brain and thus help reduce pain. The vap cartridges are convenient, and you use what you need. Iowa has a cartridge names "Comfort" which works very well for me. Start slow and low and build up your dosage. Sure beats morphine.

God bless your journey.

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@cincin3

Amen.
I am a 65 year old woman who has had undiagnosed pain for the last 3 years. After multiple docs, lots of PT, injections, etc., I have given up on fixing the problem - I just want my life back. Luckily I have a PCP that prescribes me Vicodin and Gabapentin and works with me to try to manage my pain. I am so sick of hearing about the opioid crisis! I would love to read some statistics about how many of the opioid overdoses are people who legitimately started taking medication for pain.

Jump to this post

The CATO center - Psychiatrist Jeffrey singer has written extensively (and I think even presented work on opioid crisis to Congress) and found that doctor specified opioid seldom if at all lead to addiction to opioids.

I.m in my 8th decade and rarely see doctors, no meds, and tests and thankfully still can walk up 14 floors in my bldg to get a quick exertion. I also eat whole nutritious food, and manage stress with playful activities. I seriously need a bunch of people who like to share 'stuff' about our lives. This I can't do myself despite daily efforts yet.

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@ldb

Yes, I have tried most methods. With Leaf, you can find specific types that are high in Caryophines. These work on the CB2 receptor in the brain and thus help reduce pain. The vap cartridges are convenient, and you use what you need. Iowa has a cartridge names "Comfort" which works very well for me. Start slow and low and build up your dosage. Sure beats morphine.

God bless your journey.

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What about ingesting through gummies?

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I have tried them, but for whatever reason, they don't work as well as the pens. Better control.

Everyone is different. Find what works best for you.

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@cincin3

Amen.
I am a 65 year old woman who has had undiagnosed pain for the last 3 years. After multiple docs, lots of PT, injections, etc., I have given up on fixing the problem - I just want my life back. Luckily I have a PCP that prescribes me Vicodin and Gabapentin and works with me to try to manage my pain. I am so sick of hearing about the opioid crisis! I would love to read some statistics about how many of the opioid overdoses are people who legitimately started taking medication for pain.

Jump to this post

You won’t find many. Our government doesn’t keep those very important statistics. Instead, they choose to muddy the water and contribute to give “OPIOIDS” a bad name a reputation they do not deserve. If there were actual statistics taken fro doctors who legally prescribe opiates to legitimate, authentic patients who require them to adequately manage long term moderate to severe pain, (unrelenting, debilitating pain). They would actually find a very small percentage of these patients who actually die from an overdose or become addicted to
Opioids. Unfortunately, the story is so long and prorated that it can’t be told here. However, first and foremost, opioids are prescribed by legitimate physicians to their patients who need them because after a vet point in time they are the only medication that works or provides any efficacy at all. Unfortunately, the worse thing happening is that you have people evaluating the efficacy of opioids who have never needed to use them at and don’t understand the relief they can bring legitimate, authentic patients dealing with chronic pain or even worse, chronic accuse pain! It they did, then they would have a much more empathetic understanding and objective ability to assess their safety and efficacy!
Unfortunately, this is not the case. However, even worse, much much worse, is that the government counts the people who overdose and or die from illegal street drugs, “opioids” that include heroin and poisonous fentanyl. Illegal Heroin and Fentanyl are never prescribed by physicians to their patients. However, they are counted into the statistics as though they are. This is totally unacceptable, misleading, dishonest and doesn’t sever any US Agency trying to get a handle on understanding and managing the drug crisis in the UNITED STATES. I could go on and on and there are plenty of books available to read on the subject. Unfortunately, it casts a dark light on the physicians and patients who need and deserve them to lead a life of decency and respect without being called or associated with the criminal elements of street drug opioids!
After being on this trail for almost 3 years, the level of misunderstanding, mismanagement and almost a complete failure to properly evaluate and understand the issues of this problem borderlines on extreme incompetence at best!

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I am suffering from chronic pain since I was diagnosed with Conn syndrome. I am based in the UK.
The pain is mostly in my tummy and much much worse after meals,so forcing me to restrict food and I am very slim anyway.
It also radiates to my right shoulder blade and in between my shoulders, also I am often very lightheaded although my bp is now low at 98/68. Prior to my diagnosis my bp was extremely high. It was a very long time until Conns was diagnosed despite my insistence that something was very wrong!!
Numerous scans show nothing amiss.Blood tests say I am healthy but I feel so weak,tired and hardly able to do much without pain and dizziness. I sleep 12 hours straight am so exhausted.
Does this sound like a vascular / blood flow issue? My oxygen saturation is 96/97 I am a never smoker.
Or is it a form of neuropathy?
Neither of these would show on the scans I've had, just organs.
My kidneys seem un affected which is strange as high bp affects kidneys early I am told.
Any suggestions?
I am only 65 but sat around like a 95 year old! I used to be so fit before I got Conns!!

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@ldb

I have tried them, but for whatever reason, they don't work as well as the pens. Better control.

Everyone is different. Find what works best for you.

Jump to this post

I know that there is still a certain level of stigma surrounding THC'S use. Believe me, it beats morphine hands down. 13 years ago, I was taking 300mg of morphine a day, and that wasn't working. I have been using thc & cbd for 4 years. It takes maybe 20% off the top for pain and nausha. I know it's hard to switch pain management methods. I was scared to death, but it worked for me. Now I hope that more medical personnel accept it as a valid treatment method. Look for little improvements. They add up.

God bless your journe
y

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