Chronic Pain members - Welcome, please introduce yourself

Posted by Kelsey Mohring @kelseydm, Apr 27, 2016

Welcome to the new Chronic Pain group.

I’m Kelsey and I’m the moderator of the group. I look forwarding to welcoming you and introducing you to other members. Feel free to browse the topics or start a new one.

Why not take a minute and introduce yourself.

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

@misseddie

Hello! My name is Eddie. I have been dealing with fibromyalgia since about 2013. I always have pain... some days with less some days with more. Even though the pain is terrible, I feel like the memory loss is the worst part of fibromyalgia!!!!

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Me to memory loss is hard.

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Hello, my name is Penni, I have Severe Small Fiber Neuropathy Pain, Sojgren's Syndrome, Hip Surgery that made my Neuropathy WORSE. I have a Pain Pump for FAILED Laminectomy removed, S-1 L-2 L-3 L-4 L-5
Fusion 4 years later, that failed. I went to the wrong SURGEON'S!!! NIEVE at that time!!!!!!!

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Hello, my name is Penni, I have Severe Small Fiber Neuropathy Pain, Sojgren's Syndrome, Hip Surgery that made my Neuropathy WORSE. I have a Pain Pump for FAILED Laminectomy removed, S-1 L-2 L-3 L-4 L-5
Fusion 4 years later, that failed. I went to the wrong SURGEON'S!!! NIEVE at that time!!!!!!! Just had a lot of scar tissue removed Lumbar but! I have not been able to sleep on my stomach or side since 2008 do to pain. For this procedure they had me on my stomach OH!!!!! so much pain!!! I finally feel asleep, came home and now my hip and groin is so much worse. DR. found a Percutaneous Cyst!! He said has to be removed, OMG! Anyone familiar with it and the procedure?

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@penn

Hello, my name is Penni, I have Severe Small Fiber Neuropathy Pain, Sojgren's Syndrome, Hip Surgery that made my Neuropathy WORSE. I have a Pain Pump for FAILED Laminectomy removed, S-1 L-2 L-3 L-4 L-5
Fusion 4 years later, that failed. I went to the wrong SURGEON'S!!! NIEVE at that time!!!!!!! Just had a lot of scar tissue removed Lumbar but! I have not been able to sleep on my stomach or side since 2008 do to pain. For this procedure they had me on my stomach OH!!!!! so much pain!!! I finally feel asleep, came home and now my hip and groin is so much worse. DR. found a Percutaneous Cyst!! He said has to be removed, OMG! Anyone familiar with it and the procedure?

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I wish you best of luck with what you are facing.

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Hi, I'm James. I've had several lifting injuries over the years (former EMT/RN...occupational hazard), and I've taken lots of different pain meds over the years. Some successfully, some not so. Usually they'd give me Vicodin and Motrin (generics, of course) and they helped as much as anything could. Now my PCP's group won't give Vicodin and I was sent for a lumbar MRI. Turns out I have several misplaced vertebrae and bulging discs with encroachment on the spinal nerve. Plan is to have spinal surgery probably later this summer. I can't sleep flat so I have to sleep in a recliner since it takes the load off my spine. I'm scared, but hopeful about the surgery.

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@johnjustice42

My name is John, I had back surgery 25 years ago and came out worse than I went in. After 2 more attempts I gave up on the condition improving. I have tried numerous attempts to ease my pain, from PT, to acupuncture, acupressure, even voodoo but nothing worked. I had to continue to take opioids as this was the only way to get any type of relief. I have been to various pain clinics throughout the years, the latest placed a spinal cord stimulator that gives me absolutely no relief. I told the doctor that I had gone to the Pain clinic at Duke University and was told that I wasn't a candidate for this since pain didn't run down my legs, he explained that things had changed. so I went ahead with the stimulator. I have been on methadone for 23 years now, I like it because it doesn't give me brain fog. And for full disclosure I was prescribed high doses of Oxycontin, and Oxy IR for a couple of years, I was very tolerant of these, I didn't realize that you would build a tolerance as quick as I did and was told by the doctors that Oxycontin wasn't addictive. Now we know better, but I sometimes was taking as much as 12-14 80mg tablets a day but was prescribed 8-80mg tabs per day. needless to say I had no idea what withdrawals were but soon found out, unfortunately this led me to try and add to some of my scripts and I ended up in a methadone clinic for a few years, but they didn't want to treat me since I was in chronic pain so I was able to find a Pain clinic to help. Eventually I got down to 30mg of methadone per day and have been doing this for the past 23 years with no problems until a month ago when I had an appointment with the PA and I took my bottle. I had been putting my daily pills in a pillbox for ease, but that day I inadvertently got some of my BP meds (witch look just alike) and they said I was trying to deceive them, I assure I was not, so so weaned me off the methadone and said they wouldn't prescribe any more oral medication, but I could look at putting in a pain pump. This was nearly a month ago now, I can't sleep, I can barely get out of my easy chair. So I was to see if anyone had any suggestions, I can't get in with another clinic because of the doctors note. I can't believe I should be made to suffer because of a mistake. I know doctors have harsh penalties but in 23 years I never asked for a prescription early or had any other problem. So this is my story thanks for any suggestions.

Thanks again,

John M. Justice

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i have great compassion for you. i have a hard time trusting any doctors now except for my rheumatologist who is wonderful She told me that doctors just throw out suggestions at you and you have to make a decision which ones to believe. I believe that there are doctors who keep up with new research and others who think they know everything from their med school. I had a doctor (now retired) who spent his evening catching up on all the new research. He was wonderful and I really miss him. He also believed what I told him. His replacement just prescribes the meds the old doctor gave me. This one had told me to try a new Fibromyalgia med, I told him I had a reaction to a similar drug he said this one was new and insisted I try it. My vision immediately went blurry and I was a couch potato (depressed and no energy) so I told him my reaction and stopped the drug. He then has not done anything. I don't have much trust in doctors now either. God bless you.

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@misseddie

Hello! My name is Eddie. I have been dealing with fibromyalgia since about 2013. I always have pain... some days with less some days with more. Even though the pain is terrible, I feel like the memory loss is the worst part of fibromyalgia!!!!

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hi eddie, i was diagnosed with fibromyalgia and polymyalgia rheumatica almost 20 years ago and i still have chronic pain - some days worse than the others....i have been to a zillion doctors and taken a zillions pills....finally, Thank God 5 years ago my pain management doctor put together a cocktail that works for me....i take lyrica, hydrocodone (vicadin because percoset doesn't do a thing for me) and a long acting very strong pain med......i don't believe that we have to live in pain with all the chemicals that are out there unless you choose not to take anything (your prerogative)....i have been living in bed for all these years only getting out of bed to use the bathroom.......i only leave the house to go to my doctors appointments because it is still painful and it drains my energy just to get dressed and the trip there and back causes me to sleep for 1 to 2 days of sleeping to recover from going out for 2 hours....it just kills me when people say how lucky i am not to worry about going out, etc...........are they really so stupid?.....who would condemn themselves to living in there bed, not being able to cook or clean or do anything at all....people should really learn to watch what they say because they are very hurtful words.........the brain fog and memory loss is horrible, but i have come to live with that as well because i don't have any other choices as this point....i wish you well eddie and hope you can find a good pain mgmt doctor who will listen and help you. good luck!

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@dream1649

Me to memory loss is hard.

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The memory loss is a big part of why I had to quit working. I couldn't remember HOW to do my job! And I was missing so much work because I couldn't get out of bed due to the pain!

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Pearlmarie here. I have severe OA and chronic pain since 1995. I have had 2 TKR, and a plate and pin in my ankle due to a serious break. I also have degenerative disc disease. Over the years my pain has become more severe which affects my activity level. The docs here in MA will not prescribe pain meds of any kind. They expect tylenol will do the job. Sorry, but that doesn't work for severe pain. I just want some relief so I can at least walk with some degree of comfort.

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@pearlmarie51

Pearlmarie here. I have severe OA and chronic pain since 1995. I have had 2 TKR, and a plate and pin in my ankle due to a serious break. I also have degenerative disc disease. Over the years my pain has become more severe which affects my activity level. The docs here in MA will not prescribe pain meds of any kind. They expect tylenol will do the job. Sorry, but that doesn't work for severe pain. I just want some relief so I can at least walk with some degree of comfort.

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Tylenol is a joke when your pain level is sky high.
I wonder how many doctors when in extreme pain just take Tylenol, very few is my guess.
Its getting harder and harder to get the opioid pain meds a lot of us absolutely need just to get by, thank you all you junkies for doing this to us people who actually need and don’t abuse narcotics.
I should stop rambling on now.

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