Thank you, Elizabeth. I am truly happy for you and encouraged that I’ll soon find more help.
I do have a ITC pain pump implant. The tube goes into my spine. It provides a micro dose of fentanyl, which scares the Hell out of me. After 3 years of no help, my doc has finally put in fentanyl which helps maybe 30%. She is still adjusting it, but still a scary road that I’m on. A very expensive road that won’t be available to many.
It was so much easier, cheaper, and probably safer for me to take an oxy 3 times a day. I had no negative side effects, and certainly no abuse or addiction. (I’m 69 yrs.) However, I was forced out of a med that was working and into this pump. My doc is making out like a bandit, lol.
I’ve tried the quite expensive cannabis lotion and a tincture. Neither worked. I’m still exploring this avenue, but refuse to buy it from my pain doc. It seems unethical for him to make money off cannabis while refusing to give me what does work. For ~10 yrs, I was a perfect patient while taking oxy. Perfect drug tests and zero side effects.
I’m very upset, I’m sure you can tell, lol. People in my age group had low abuse numbers, but now some are being pushed to street drugs. They either can’t get what they need legally or afford the treatment. I spent $7K plus out of pocket at my pain doc last year, WITH decent health ins. I’m lucky.
Continued good luck and vibes to you on this crazy journey we’re on.
@isaratex and all...
I'm so sorry you've had such a tough time. Is your pain from fibro or with other causes added? My son has a Diaudid pump that's saving his his life. Helping greatly reduce much of his pain, not all. He was taking oxycodone, oxycontin, fentanyl patches and more. Due to the horrid oxygen ban, he was forced into the pump, with a catheter to his cervical are and the point near his cause of pain. It's helping. But, he has acute and chronic pain for the rest of his life.
His option, go to using street drugs.
This is an unacceptable situation. His insurance paid 100% and pays for all his pain help. He was considered for deep brain surgery at Mayo. Denied docs didn't think it would be helpful.
He also takes cymbalta...helpful, muscle relaxant, MM, and oth r drugs. He's disabled since age 35. Now 55. Hell for sure!
I know fentanyl is scary,, but if used wisely overseen by an expert, it's a wonder drug for those who need it..
I hope it does help reduce your suffering.
Be blessed...elizabeth
I tried to try Cymbalta, because I thought it would help me after researching it. Gave it my all -- twice -- each time for a week. Unfortunately, it gave me headaches all day long, so severe that I couldn't lift my head off the pillow. Also had nausea, which I would have been willing to cope with, but I just didn't want more pain (the headaches) to add to what I already have.
A few months ago, my PCP told me that the antidepressant Remeron (generic mirtazapine) is a very bad antidepressant, but a very good sedative, and can alleviate pain. So I've been on that, can now sleep every night, at least for a few hours, and have had some alleviation of my pain. It does make my restless legs worse, but it's not so bad that I can't eventually sleep, and that is a blessing. I've found that if I can't sleep, or can only sleep an hour or two, my ability to cope with my pain is greatly diminished during the day.
I'm new to Mayo Connect. Hope I'm doing this right! I've been reading a lot in several forums, groups, and threads, and hope to start sharing more. Wishes for a better day today to all. Take care.
Hi there @cookierockwell, welcome to Connect. (BTW....that's an interesting name you have chosen). I wanted to say hello and welcome you to Connect. If you have been reading a lot....that is a good way to start. Have you noticed that by sharing our experiences, we help each other? That truly is our mission.
In response to your first post.....I notice that you haven't mentioned a diagnosis. Do you suffer from a form of neuropathy? Have you had a punch skin biopsy yet? That would help you identify SFN (small fiber neuropathy). There are other tests for PN (peripheral neuropathy).
I am sorry your attempts with Cymbalta have been unsuccessful. As you might imagine, everyone is different. What works for me might not work for you. And that is true about Duloxetine (Cymbalta). It is my "go-to" for SFN and has been for several years. I have migrated from 60 mg to 120 mg a day. You might ask, "what can it possibly be doing for you?" And you might be surprised that what it does for me is reduce my anxiety. I was caught in a round-a-bout. My pain caused anxiety which then created more pain which then............you've got the idea.
At this time, after being diagnosed 10 years ago, I take my Cymbalta dosage as soon as I get up in the morning. It ensures that I begin the morning with mental and physical control.
I hope there is another medication that can do the same for you. And just so you know, the rest of my pain control is accomplished with medical cannabis......another 10-year treatment for me.
Do you feel ready to share a little more about your symptoms and the diagnosis you have received? As a mentor, I can then help you be introduced to others experiencing the same symptoms or conditions.
Are you seeing a specialist clinician in addition to your PCP?
May you be free of suffering and the causes of suffering.
Chris
I've used Cymbalta for years for fibromyalgia and it has helped some. I'm at the max dose. I know if I miss a few days my pain does intensify some. I've read others using it for different types of pain. Does not seem to affect my abdominal pain.
I am taking cymbalta & not sure if it helps with fibromyalgia or not- had a major flare up yesterday with the cold damp weather & wondering if weather change flares are common for fibro folks-
I also have flares with weather changes and if the Cymbalta does work maybe the flare would be worse? Just a thought. My flares are bad, keeping me in bed 2-3 days out of 5-6 days. Don't know if this helps. I'm new to this group.
I tried to try Cymbalta, because I thought it would help me after researching it. Gave it my all -- twice -- each time for a week. Unfortunately, it gave me headaches all day long, so severe that I couldn't lift my head off the pillow. Also had nausea, which I would have been willing to cope with, but I just didn't want more pain (the headaches) to add to what I already have.
A few months ago, my PCP told me that the antidepressant Remeron (generic mirtazapine) is a very bad antidepressant, but a very good sedative, and can alleviate pain. So I've been on that, can now sleep every night, at least for a few hours, and have had some alleviation of my pain. It does make my restless legs worse, but it's not so bad that I can't eventually sleep, and that is a blessing. I've found that if I can't sleep, or can only sleep an hour or two, my ability to cope with my pain is greatly diminished during the day.
I'm new to Mayo Connect. Hope I'm doing this right! I've been reading a lot in several forums, groups, and threads, and hope to start sharing more. Wishes for a better day today to all. Take care.
@cookierockwell, @colleenyoung, @artscaping, @johnbishop, and all...
Cymbalta has been a lifesaver for me over the years past. I count it as one of my most important and helpful drugs. 120 mg is perfect for me. I take these meds thankfully!
You mentioned RLS and sleep issues. That's another topic that requires a bunch of input from some of us here. I have serious obstructive sleep apnea, use a BiPAP nightly and get good help from that. I use a heated hose and distilled water, with daily auto cleaning with a SoClean 2.
I was in the hospital last week for a couple of days and was given oxygen added to the BiPAP each night. Best sleep I've had in years. I may need oxygen added at night. We'll see.
I was diagnosed with RLS several years ago during sleep testing at Mayo. It's pretty bad and has bothered me for years w/o any diagnosis. The sleep doctor had my ferrous levels tested 2 years ago and found extremely low levels, 15. She added Vitron-C, an OTC iron+C
supplement, as docs found low ferrous often affects RLS. My level increased to 25 after a year of supplementation. So, as I was having serious fatigue still, shortness of breath, etc., I had 2 iron infusions. The docs think the ferrous level needs to be at least 100 to relieve RLS. Wow!
I had great RLS improvement almost immediately. Actually, it took a week or 2 to feel the good effects throughout and get some bounce back in my step, missing for decades. I had energy, a change in attitude, and thinking ability, my personality improved and I began to see the real me. Less depression. Less anxiety. Better sleep. I was also given Requip at night to help with dopamine levels, which helped the RLS and daily balance and walking.
Now, for the last several weeks, fatigue has increased, balance and dizziness worsened, RLS has been getting much worse, neuropathy is much worse and more pain/burning, and my iron ferrous level is 88, the best it's ever been as an adult. Additional tests showed the absorption of the ferrous by my cells is quite low. Since my grandfather died of pernicious anemia, I'm concerned about this series of events and poor absorption. Could also be behind the low oxygen levels in the hospital during the day and night.
These test results were on my PCP portal last Wed. I haven't been able yet to get a response from my PCP's office other than a nurse suggesting I might need to start iron supplements. I'm taking the proper amount daily, and more iron supplements by mouth aren't always better, according to my PCP last year. She hadn't even read my file to know the history, so I relayed it by portal message. No response, even yet.
So, as this has been a multi-year issue getting in touch with and communicating with this office, I emailed my PCP whom I adore and have worked with for 20+ years, for a referral to a new PCP. I also contacted my Mayo rheumatologist's office to see what I should do or whom to contact for advice. You know, if all is ok, just tell me, and let's move on. If, as I think, I have an absorption issue, let's address it and move on.
As it happens, my rheumatologist is a blood specialist and this is right up his alley! God is so good! He got me to Mayo years ago and saved my sanity and my life.
All this is to say to you...Cookie...don't overlook your RLS. It's quite disruptive of your sleep which can lead to other physical and emotional issues. Address this as well as the pain and more pressing issues. My legs/feet are bothering me so much now, I'm using the magnesium lotion recommended by dear @johnbishop, MM lotion, and whatever. I'm not sleeping well. Cramping, burning, hurting, and painful feet and legs can be tough, so don't wait to get that help.
Now, I've shared my most recent issues. Still in process of addressing this, but I know I'll get the answers and treatment if any to take care of this, too. Guess I just needed to share.... haven't had anyone to vent to about all this mess. It was a serious cluster mess even getting the PCP office to send the correctly signed test requests to Mayo or to the local hospital so I could get the tests done. Anyway, I'm being proactive and staying on this until answers are available.
I love Mayo!!!!!!!!!!!!!!!!!!!!!!
Be your best advocate and find answers, without becoming overly obsessed with your individual health issues. It's a fine line many of us walk with pain, auto-immune illnesses, that can be challenging to diagnose. A line from advocating for ourselves to obsession.
Be better, and be blessed....Elizabeth
@zinniagal weather definitely affects me and the fibro of one of my friends, as well. Spring and autumn aren't always the funnest times of years for us living in western NY.
Texas weather is the same for me in the fall and spring. We can have weather from 90-32F in one week, several times. My roommate gets tired of my symptoms, but she doesn't have to
live with the painpa the
P the.
Texas weather is the same for me in the fall and spring. We can have weather from 90-32F in one week, several times. My roommate gets tired of my symptoms, but she doesn't have to
live with the painpa the
P the.
She doesn't have to live with the pain like I do. She gets it tho with my worst flares, because I sleep constantly, am in pain, and only eat jello or soups. She says I look like death. I feel like I need to find out about polymorphism testing cause I'm on 120mg a day and still in constant pain. Just don't touch anywhere near my trigger point!!! Lol.
Yes and it does help me. I have fibromyalgia and have taken it for years. At one time I tried to stop taking but I could tell the difference so it does work for me.
About 10 months ago. My mom had an unexplained illness. Extreme pain. Dizziness and vertigo. Literally left her in the bed most days. Finally took her to a dr who specialized in pain. He prescribed cymbalta. Took her a few weeks to adjust, but after that it has been a lifesaver. She is better than her old self. She had a knee replacement a few years ago. Ever since then the pain started . My guess is she is having a reaction to the titanium. Since that knee is now double the size of her other one. Nothing else has worked. I would give it a try.
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@isaratex and all...
I'm so sorry you've had such a tough time. Is your pain from fibro or with other causes added? My son has a Diaudid pump that's saving his his life. Helping greatly reduce much of his pain, not all. He was taking oxycodone, oxycontin, fentanyl patches and more. Due to the horrid oxygen ban, he was forced into the pump, with a catheter to his cervical are and the point near his cause of pain. It's helping. But, he has acute and chronic pain for the rest of his life.
His option, go to using street drugs.
This is an unacceptable situation. His insurance paid 100% and pays for all his pain help. He was considered for deep brain surgery at Mayo. Denied docs didn't think it would be helpful.
He also takes cymbalta...helpful, muscle relaxant, MM, and oth r drugs. He's disabled since age 35. Now 55. Hell for sure!
I know fentanyl is scary,, but if used wisely overseen by an expert, it's a wonder drug for those who need it..
I hope it does help reduce your suffering.
Be blessed...elizabeth
-
Like -
Helpful -
Hug
6 ReactionsHi there @cookierockwell, welcome to Connect. (BTW....that's an interesting name you have chosen). I wanted to say hello and welcome you to Connect. If you have been reading a lot....that is a good way to start. Have you noticed that by sharing our experiences, we help each other? That truly is our mission.
In response to your first post.....I notice that you haven't mentioned a diagnosis. Do you suffer from a form of neuropathy? Have you had a punch skin biopsy yet? That would help you identify SFN (small fiber neuropathy). There are other tests for PN (peripheral neuropathy).
I am sorry your attempts with Cymbalta have been unsuccessful. As you might imagine, everyone is different. What works for me might not work for you. And that is true about Duloxetine (Cymbalta). It is my "go-to" for SFN and has been for several years. I have migrated from 60 mg to 120 mg a day. You might ask, "what can it possibly be doing for you?" And you might be surprised that what it does for me is reduce my anxiety. I was caught in a round-a-bout. My pain caused anxiety which then created more pain which then............you've got the idea.
At this time, after being diagnosed 10 years ago, I take my Cymbalta dosage as soon as I get up in the morning. It ensures that I begin the morning with mental and physical control.
I hope there is another medication that can do the same for you. And just so you know, the rest of my pain control is accomplished with medical cannabis......another 10-year treatment for me.
Do you feel ready to share a little more about your symptoms and the diagnosis you have received? As a mentor, I can then help you be introduced to others experiencing the same symptoms or conditions.
Are you seeing a specialist clinician in addition to your PCP?
May you be free of suffering and the causes of suffering.
Chris
-
Like -
Helpful -
Hug
3 ReactionsI've used Cymbalta for years for fibromyalgia and it has helped some. I'm at the max dose. I know if I miss a few days my pain does intensify some. I've read others using it for different types of pain. Does not seem to affect my abdominal pain.
-
Like -
Helpful -
Hug
3 ReactionsI also have flares with weather changes and if the Cymbalta does work maybe the flare would be worse? Just a thought. My flares are bad, keeping me in bed 2-3 days out of 5-6 days. Don't know if this helps. I'm new to this group.
-
Like -
Helpful -
Hug
1 Reaction@cookierockwell, @colleenyoung, @artscaping, @johnbishop, and all...
Cymbalta has been a lifesaver for me over the years past. I count it as one of my most important and helpful drugs. 120 mg is perfect for me. I take these meds thankfully!
You mentioned RLS and sleep issues. That's another topic that requires a bunch of input from some of us here. I have serious obstructive sleep apnea, use a BiPAP nightly and get good help from that. I use a heated hose and distilled water, with daily auto cleaning with a SoClean 2.
I was in the hospital last week for a couple of days and was given oxygen added to the BiPAP each night. Best sleep I've had in years. I may need oxygen added at night. We'll see.
I was diagnosed with RLS several years ago during sleep testing at Mayo. It's pretty bad and has bothered me for years w/o any diagnosis. The sleep doctor had my ferrous levels tested 2 years ago and found extremely low levels, 15. She added Vitron-C, an OTC iron+C
supplement, as docs found low ferrous often affects RLS. My level increased to 25 after a year of supplementation. So, as I was having serious fatigue still, shortness of breath, etc., I had 2 iron infusions. The docs think the ferrous level needs to be at least 100 to relieve RLS. Wow!
I had great RLS improvement almost immediately. Actually, it took a week or 2 to feel the good effects throughout and get some bounce back in my step, missing for decades. I had energy, a change in attitude, and thinking ability, my personality improved and I began to see the real me. Less depression. Less anxiety. Better sleep. I was also given Requip at night to help with dopamine levels, which helped the RLS and daily balance and walking.
Now, for the last several weeks, fatigue has increased, balance and dizziness worsened, RLS has been getting much worse, neuropathy is much worse and more pain/burning, and my iron ferrous level is 88, the best it's ever been as an adult. Additional tests showed the absorption of the ferrous by my cells is quite low. Since my grandfather died of pernicious anemia, I'm concerned about this series of events and poor absorption. Could also be behind the low oxygen levels in the hospital during the day and night.
These test results were on my PCP portal last Wed. I haven't been able yet to get a response from my PCP's office other than a nurse suggesting I might need to start iron supplements. I'm taking the proper amount daily, and more iron supplements by mouth aren't always better, according to my PCP last year. She hadn't even read my file to know the history, so I relayed it by portal message. No response, even yet.
So, as this has been a multi-year issue getting in touch with and communicating with this office, I emailed my PCP whom I adore and have worked with for 20+ years, for a referral to a new PCP. I also contacted my Mayo rheumatologist's office to see what I should do or whom to contact for advice. You know, if all is ok, just tell me, and let's move on. If, as I think, I have an absorption issue, let's address it and move on.
As it happens, my rheumatologist is a blood specialist and this is right up his alley! God is so good! He got me to Mayo years ago and saved my sanity and my life.
All this is to say to you...Cookie...don't overlook your RLS. It's quite disruptive of your sleep which can lead to other physical and emotional issues. Address this as well as the pain and more pressing issues. My legs/feet are bothering me so much now, I'm using the magnesium lotion recommended by dear @johnbishop, MM lotion, and whatever. I'm not sleeping well. Cramping, burning, hurting, and painful feet and legs can be tough, so don't wait to get that help.
Now, I've shared my most recent issues. Still in process of addressing this, but I know I'll get the answers and treatment if any to take care of this, too. Guess I just needed to share.... haven't had anyone to vent to about all this mess. It was a serious cluster mess even getting the PCP office to send the correctly signed test requests to Mayo or to the local hospital so I could get the tests done. Anyway, I'm being proactive and staying on this until answers are available.
I love Mayo!!!!!!!!!!!!!!!!!!!!!!
Be your best advocate and find answers, without becoming overly obsessed with your individual health issues. It's a fine line many of us walk with pain, auto-immune illnesses, that can be challenging to diagnose. A line from advocating for ourselves to obsession.
Be better, and be blessed....Elizabeth
-
Like -
Helpful -
Hug
8 ReactionsTexas weather is the same for me in the fall and spring. We can have weather from 90-32F in one week, several times. My roommate gets tired of my symptoms, but she doesn't have to
live with the painpa the
P the.
-
Like -
Helpful -
Hug
1 ReactionShe doesn't have to live with the pain like I do. She gets it tho with my worst flares, because I sleep constantly, am in pain, and only eat jello or soups. She says I look like death. I feel like I need to find out about polymorphism testing cause I'm on 120mg a day and still in constant pain. Just don't touch anywhere near my trigger point!!! Lol.
-
Like -
Helpful -
Hug
1 ReactionYes and it does help me. I have fibromyalgia and have taken it for years. At one time I tried to stop taking but I could tell the difference so it does work for me.
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Like -
Helpful -
Hug
2 ReactionsAbout 10 months ago. My mom had an unexplained illness. Extreme pain. Dizziness and vertigo. Literally left her in the bed most days. Finally took her to a dr who specialized in pain. He prescribed cymbalta. Took her a few weeks to adjust, but after that it has been a lifesaver. She is better than her old self. She had a knee replacement a few years ago. Ever since then the pain started . My guess is she is having a reaction to the titanium. Since that knee is now double the size of her other one. Nothing else has worked. I would give it a try.
-
Like -
Helpful -
Hug
2 ReactionsI use Cymbalta to control my fibromyalgia pain, it works very well.
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Helpful -
Hug
1 Reaction