@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?

@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/

@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

@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.

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.

There is one problem with HIPAA. There is not one red Cent in any government budget at any level from the federal to the city to enforce the HIPAA laws. This was exposed in a TV special several years ago. Any action you take is going to have to be in civil court at your expense or perhaps you can bring about the firing of the offending party by the organization that they work for. I personally, was appalled when I learned that this was the truth.

@wsh66

One thing I forgot to mention about the pain pump. Drugs delivered into the spine by the pain pump, are 300 times more effective than drugs that you eat. That's what my doc says I'm not sure it's true but I would certainly buy into the idea that it's a hundred to 200 times more effective maybe three hundred times when you first start. Something to think about.

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most of an oral Med is absorbed by your digestive system and never gets around to treating your pain. This is why drug addicts want to crush up there pills and snort them or dissolve them in water and inject them. Having the drugs leak directly onto your spine by the pain pump is even more effective than an intravenous injection and according to my doctor is 300 times more effective. I don't know if the number should really be as high as 300 I don't feel like I'm getting a thousand mg of Dilaudid every day but it is definitely way more effective than eating pills even if it's the same Med. There are other medications delivered by pain pumps such as methadone and morphine. my doc says they sometimes have to experiment and see which Med is right for which person, Dilaudid just seems to be the right one for me.

For anyone who wants to know more about HIPAA enforcement, etc. Here are the HIPAA Enforcement Results as of December 31, 2017:
— https://www.hhs.gov/hipaa/for-professionals/compliance-enforcement/data/enforcement-highlights/index.html

Any questions, look around on the site. Lots of information available on the site if you want to find out specifics.

John

@wsh66

There is one problem with HIPAA. There is not one red Cent in any government budget at any level from the federal to the city to enforce the HIPAA laws. This was exposed in a TV special several years ago. Any action you take is going to have to be in civil court at your expense or perhaps you can bring about the firing of the offending party by the organization that they work for. I personally, was appalled when I learned that this was the truth.

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@wsh66, I am @marield65 and I agree with you about the government. They are spending all the time and money on opioids addiction and I go from month to month hoping the pain clinic will refill my prescription and now there’s a shortage.
I wish the government would stay out of my business.

@lioness

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

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Lioness, I am tired of disappointing my family and also me. When do I get to do something fun again. We are under a microscope for WHAT? I stopped my Methotrexate today. I bet I feel better in a few days. I am so done taking this by injection and Infusion. Let talk Pain meds then I will talk your Methotrexarte again. I cannot handle the pain. PERIOD It is getting to the point I am going to ask my grandson to get me some Marijuana. What choice do I have. Dying from this is not worth it. My heart is working overtime.

@wsh66

There is one problem with HIPAA. There is not one red Cent in any government budget at any level from the federal to the city to enforce the HIPAA laws. This was exposed in a TV special several years ago. Any action you take is going to have to be in civil court at your expense or perhaps you can bring about the firing of the offending party by the organization that they work for. I personally, was appalled when I learned that this was the truth.

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Try some meditation for relaxation therapy. The anxiety you are experiencing is going to make your experience of pain more acute and even worse than it is.

@wsh66

One thing I forgot to mention about the pain pump. Drugs delivered into the spine by the pain pump, are 300 times more effective than drugs that you eat. That's what my doc says I'm not sure it's true but I would certainly buy into the idea that it's a hundred to 200 times more effective maybe three hundred times when you first start. Something to think about.

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Not necessarily but I would start with a different drug just to be safe. if your bad reaction was the first time you tried the drug that's pretty normal for most narcotics. Especially if you're bad reaction was stomach discomfort or vomiting. that's a side effect that usually doesn't repeat itself although it can.

@wsh66

There is one problem with HIPAA. There is not one red Cent in any government budget at any level from the federal to the city to enforce the HIPAA laws. This was exposed in a TV special several years ago. Any action you take is going to have to be in civil court at your expense or perhaps you can bring about the firing of the offending party by the organization that they work for. I personally, was appalled when I learned that this was the truth.

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So true I let my emotions get the. best of me but I paid for it with excruciating pain

As a retired nurse I can tell you when this law was enacted Dr.@nurses where so upset at this ,we felt it was wrong

@wsh66

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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WSH66, I agree with you 100%. Most people are not looking to be a drug Addict. They are looking to STOP the pain. People can only deal with the pain just so long. As for myself, I have stopped all my RA drugs today. For those of you who are worried about me quitting all at one time, I did my research. Why should I take the poison medication if I don't have some relief from the pain. Illegal drugs will shoot thru the sky. Drug dealers will make more money than they ever thought they could. And, seniors instead of living off their retirement will be using the retirement money to over pay for drugs that should be given through a doctor. The poison drug is to counter any infections I could get due to my disease. But the discomfort and giving myself a shot and taking Infusions is not a way of life I choose to live.