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.

So sorry I have had to disappoint my grandson ,felt bad for days

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@ramakambhatla

I have noticed few having multiple surgeries. My pain is like 9, only when I walk and even with pain meds, in a minute or two, it is relieved by sitting. I am able to do routine activities and do not want, any further handicap than what I
already have.

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Thanks John

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@cleane1

Hi I am mike from Oregon 30 years logger broken back 20012 several surgery's latter chronic pain just went off veniflxene suffering horrindus withdraws glad to have found this sight

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@oregongirl

Perhaps @cleane1 is referring to Be venlaxafine (not sure of spelling), which is Effexor.

Jim

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@parus

Certainly have little good to say about health care in IN. Likely the same no matter where one lives. Even my x-rays show there is pain-take tylenol and aleve together...I do what I can to respect my liver, kidneys and other vital organs. Weather is warming soon so I will get out and walk on hard pavement which is hard on the body. Quit whining as it gets one nowhere. I became brave enough to ask for a small amount of hydrocodone (5 mg) and was told to get out and walk. Left feeling like the dregs of society for even asking.

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@parus

That may be their practice, but it doesn't make it legal. For privacy, HIPPA is in place so that this very thing doesn't happen. They're practicing unethical and illegal protocol.

Jim

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@parus

Certainly have little good to say about health care in IN. Likely the same no matter where one lives. Even my x-rays show there is pain-take tylenol and aleve together...I do what I can to respect my liver, kidneys and other vital organs. Weather is warming soon so I will get out and walk on hard pavement which is hard on the body. Quit whining as it gets one nowhere. I became brave enough to ask for a small amount of hydrocodone (5 mg) and was told to get out and walk. Left feeling like the dregs of society for even asking.

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@parus

I would suggest that the doctors are in direct violation of HIPPA regulations.

Jim

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@oregongirl

@wsh I would rather not think about something I cannot have.. j stopped my injections today. Why take something that makes me worse. There is no cure for RA so why the shots. They are not pain meds. I had to disappoint my daughter in law and not go shopping v with her today. So sad

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I@oregongirl I'm not sure what you're talking about that you can't have. Are you talking about the pain pump? Why would you not be able to have one?

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@lilgrizz

Hello Kelsey, thank you for this group. I don't know where to start describing my pain. My chronic pain runs about an 8 without meds. Don't know what I would do if I didn't have them to help me function. Yes I'm just a lil upset and Trump and the DEA about taking away our meds. I have degenerative scoliosis which I just have had my third surgery for. In April of last year I had two rods screwed into my spine starting at about the top of my shoulder blades down to my tailbone. A month later they went in from the front and fused the bottom part of my spine. Just a month ago I fell in the middle of the night and cracked both rods and had to have surgery again. I have dealt with the pain of scoliosis all my life. I started wearing a brace in the second grade until the 6th grade 24/7 except getting out each day long enough to take a bath. In 2012 I learned I also had multiple sclerosis, lupus and in 1999 I was diagnosed as Bipolar. But between the pain from my back, the lupus, and especially the MS I suffer tremendously. Don't know how I will survive trying to deal with the pain completely by will. I must say I'm very scared.

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@lilgrizz I thought you might like to know about these two discussion groups on Connect where members are talking about scoliosis and MS:

* Scoliosis - Introduce yourself and meet others https://connect.mayoclinic.org/discussion/scoliosis-introduce-yourself/
* Multiple Sclerosis (MS) - please introduce yourself https://connect.mayoclinic.org/discussion/multiple-sclerosis-ms-please-introduce-yourself/

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@ramakambhatla

Hardly I know, about ESI at a specific site for relief of pain, I am rather perplexed about using pain pump with 100-300 times the relief! Is this being done, at Mayo clinic? I have had an MRI, showing DDD with no information from the few spine surgeons, that I consulted, as to the procedure. Briefly,
a nerve block was mentioned. I am just trying to be happy with the routine
activities, that I am able to do. I would like to know as to how and who is
taking part in this procedure, like : Neurosurgeon, spine surgeon. Thanks for
a reply, in this reference.

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Rama... about the pain pump. Narcotics dripped into your spine by the pump are, according to my doctor, 300 times more effective than those that you eat because of the amount that is absorbed by your stomach and other organs but don't deal directly with your pain. My pump running at 2.75 mg of Dilaudid for 24 hours is more effective than 200 mg of Oxycontin + 32 mg of hydromorphone plus 20 mg of Valium over the same 24 hour. It's a big Improvement pain wise and it removes that need for constantly getting prescriptions refilled and being looked at as some kind of Criminal by doctors and nurses and other assholes that have no idea what we're going through . I am not speaking about my general practitioner or my doctors at the pain clinic at M health. They all know how to deal with chronic pain and are very respectful but I have a long history with doctors and nurses of the other persuasion. Not perfect but one hell of an improvement. I don't know if they do them at Mayo they do do them at the University of Minnesota. Good luck

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@thomasesmom

Hi, Debra here. I'm long overdue for a right hip replacement. Fear has kept me away,then in 2016 the basement stairs broke my right ankle.an operation was performed & I now have 2 metal plates which are SO TIGHT it's all unbearable,hip/ankle combo.i was told operation was necessary,but I doubt it.i regret it
The operation,that is. I must mention that I ride a Bicycle daily,weather permitting,it is MUCH EASIER THAN WALKING,which at times is Excruciating & impossible. I also have wide,triple E feet which are great for Balance, but add one constantly recurring
Corn between my right baby toe and sometimes it's hard to determine which pain is Greater,Hip,Ankle or
Toe??? I take naproxen,no prescription medication and when I hear about prevalent opiod issues,i am glad that isn't me,but there are times when i wish I had something just so I am able to walk.
Lastly,my past orthopedic surgeon ( top 10 in Milwaukee) he referred to medical school of Wisconsin for fibromyalgia. I never followed up,too much to digest

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Thanks for sharing your experience with the fibromyalgia clinic at Mayo Clinic. There is a discussion about the clinic where people are sharing about their experiences if you would like to join in.
- Mayo Clinic's Fibromyalgia Clinic https://connect.mayoclinic.org/discussion/mayo-clinics-fibromyalgia-clinic/?pg=2

It must have been so helpful to have your partner also attend. It can be difficult to explain a chronic condition to others even those closest to us.

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When you're looking for a pain management clinic you must realize they fall into two categories. I have encountered both. The first one I went to which is no longer in existence thank God, was based around the idea that everyone's pain medication should be limited or be removed completely. That no one should be on pain medication on a permanent basis regardless of their situation. I went to that clinic and told them I had all the pills that I needed, I had doctors to take care of that but what could they tell me about other ways to deal with my pain. I told him the things that I was doing, Qigong , meditation. They told me that for them to instruct me and alternative therapies would be like taking me out of graduate school and sending me back to kindergarten. In other words, they had nothing to offer me but would recommend to my doctors that I be limited to no more than the equivalent of 100 mg of morphine a day. That was about half of what I was taking at that time. The last time I checked those guys were out of existence. the other kind of pain clinic is the one that I have go to at M Health at the University of Minnesota. They evaluated me both physically and mentally, they realized my need for medication was real and they understood that as time goes by your doses have to get larger to have the same effect. They continue to medicate me four more than a year until I was free of infections which I had encountered in the aftermath of cancer treatment. while I was continuing to get infections they could not risk the surgery of opening me up to put the pump in and thread the catheter up my spine. once I was able to have the surgery I got the pump. I came off my heavy doses of medication almost overnight and experience no withdrawal. No withdrawal because I wasn't an addict, I had never abused my drugs, I had never use them to get high. I had never triggered that response in my brain that goes along with getting high and leads to addiction. this is the piece of the puzzle that's so many doctors do not understand. I continue to go to my pain management clinic and get my oil changed every 3 months. They pump out what's left of the old drugs and they pump in fresh drugs. it's done with a needle in the doctor's office and it takes about 5 minutes. the only pain clinic that I know that operates the way that I described above is the one at M health which is part of the University of Minnesota and the Fairview system. I would hate to be just beginning this journey today with what's going on politically with pain medications.. I think we'll see an uptick in the number of people with chronic depression and chronic pain who unfortunately will take their own lives.

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