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.

@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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@wsh66

I wholeheartedly agree with you. A stigma seems to be building around the use of opioids. Not just the abuse, but the legitimate use of them. It's hard enough to live in a culture that stigmatizes depression, anxiety disorder, bipolar disorder and the numerous other mental health disorders. We really don't need to start being stigmatized for using pain medications. Many of us here have to deal with multiple diagnoses – chronic pain and depression being just one example – and have to juggle a mix of medications for any number of things.

I don't think I'm ready for a pump, but it sounds like a really good solution.

Jim

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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Peach, be careful. The person who watches the posts got on my case. I asked her if she had RA or FM. She said no. I said until you can walk in our shoes, don't get in the way of what I can say. I stopped the Methotrexate yesterday. I am also refusing the infusion. If they cannot give me something to give my life back to me, I see no reason to take their drugs which will never cure me. It may take me sooner, which we all know, is not a bad thing. God is in charge and He knows our suffering. But none of us have suffered as bad as He did on the Cross. That is what keeps me going. I was told they referred me to a Pain Management, but I have heard nothing.

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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The meds they had me on until I quit yesterday are poison. I have black circles under my eyes and I look like I am about ready to go. I don't want to look like that. I want to feel good again.

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@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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The heads of our Country will never be turned down for pain meds

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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Have you gone to a pain clinic yet?

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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In the Upper Peninsula Saunas are a common thing. I miss them. Also, you discussed Light and I feel EXTREMELY
Positive about the Need for Supplemental
Sunlight Source All year,but especially during winter. It has been 7 years since I stopped Tanning regularly and I have Never felt WORSE! It was a slow & steady decline,from the fungus on my feet/ toenails, to my aching joints and the color of skin.the Artificial light in tanning beds
may not be totally healthy,but just as with medications, the right dose is Beneficial.

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

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You will feel good. By being proactive in trying the right help you will get some relief from pain. Call back the pain center if they haven’t called you. Don’t wait around for help to come, go get it. That’ll make you feel like you are doing something productive and mentally feel better. Good luck @marield65

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@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

Jump to this post

Be nice.

REPLY
@tbeckys

Hi, my name is Terry and I was diagnosed when I turned 38 although I think I’ve had it longer. I’m 66 now and had to give up a job I loved which was being a nurse! The pain is 24/7/365 with no good days in between. It has always been excruciating since I’ve had it! I’ve never had even 1 day of the pain letting up…. none!
I would be interested to know what people do for their pain. Currently I’m using a heating pad, electric blanket and ice packs along with compression gloves for my R.A.and creams to rub on. My husband even rigged our SUV so I can have my heating pad and blanket in the vehicle!
I have several different autoimmune diseases and Fibromyalgia is another along with Diabetes and Heart Disease. I’m just a mess or my body is for sure.
I will continue to read your texts and answer when I can!
Best of luck to all!

Jump to this post

Who is they? Yes, meds sometime we get reactions but no one is forcing you to take it. You have to keep trying them to find what works.

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wsh66.. Thanks for trying to clarify, about pain injections, pain pump. I may contact a neurosurgeon, who has seen
me earlier. I guess that I am not taking serious treatment procedures, due to my CAD (Heart Problem) on meds., that cause bleeding (even dental problems are left alone, being superficial, are asymptomatic).I am trying to stick to conservative measures, few simple, measures like yoga, meditation, PT, occasional pain relievers, more
topical use, seems to be preferred than pills. Chronic pain is something you get used to, if not severe.

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Ramakambhtla…I also have a heart condition. This was one of the reasons I stopped taking Methotrexate. For some reason it was adding to my pain. I was so severely in pain that I was concerned I was having a heart attack. I never did get it checked, but I do have a call into my Cartiologist. My granddaughter is a nurse and she was very upset that I was taking Methotrexate. It is poison to my system. This is my third day without it and my legs feel so much better. I started using Ibprophren yesterday. I am so afraid to let my doctor know as I bet she cancels me as her patient. Well maybe that best. I mean it, I was becoming a vegetable. I could not stay awake and I could hardly walk. Bags under my eyes turning blue. I thought my body was preparing to die. It was terrible. For those of you who take it and can handle it, great…but not me.

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@oregongirl

Ramakambhtla…I also have a heart condition. This was one of the reasons I stopped taking Methotrexate. For some reason it was adding to my pain. I was so severely in pain that I was concerned I was having a heart attack. I never did get it checked, but I do have a call into my Cartiologist. My granddaughter is a nurse and she was very upset that I was taking Methotrexate. It is poison to my system. This is my third day without it and my legs feel so much better. I started using Ibprophren yesterday. I am so afraid to let my doctor know as I bet she cancels me as her patient. Well maybe that best. I mean it, I was becoming a vegetable. I could not stay awake and I could hardly walk. Bags under my eyes turning blue. I thought my body was preparing to die. It was terrible. For those of you who take it and can handle it, great…but not me.

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Oregongirl you made the right decision for you ,sounds like your body was trying to tell you ,this is wrong med.listen to your body about meds if it doesn't feel right stop it also listen to your granddaughter on e nurse to another. Glad you feel better.If your cardiologist let's you go she isn't thinking of your best interest ,you can find another.

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@oregongirl

Ramakambhtla…I also have a heart condition. This was one of the reasons I stopped taking Methotrexate. For some reason it was adding to my pain. I was so severely in pain that I was concerned I was having a heart attack. I never did get it checked, but I do have a call into my Cartiologist. My granddaughter is a nurse and she was very upset that I was taking Methotrexate. It is poison to my system. This is my third day without it and my legs feel so much better. I started using Ibprophren yesterday. I am so afraid to let my doctor know as I bet she cancels me as her patient. Well maybe that best. I mean it, I was becoming a vegetable. I could not stay awake and I could hardly walk. Bags under my eyes turning blue. I thought my body was preparing to die. It was terrible. For those of you who take it and can handle it, great…but not me.

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Ramakambhtla, Hi, I used to take Methotrexate. After a few years of taking it, (methotrexate), I contracted a very, very rare cancer. I was also on hormone replacement therapy for low testosterone. I was told to give up both as both were suspects for having caused the rare cancer. I don't remember why you were taking Methotrexate, I was taking it for Psoriatic Arthritis which is also an immune disorder. I was diagnosed as having PS by two different Rumatologist and my GP. I later began to practice Spring Forest Qigong. After a few years of Qigong and many healing sessions with my teacher, a third Rumatologist said I no longer had Psoriatic Arthritis. Never underestimate the ability of your body to heal itself. I had radiation and huge doses of Chemo for cancer and not only did I live but my tumor was no longer malignant when it was removed. That is even rarer than the cancer itself. I wouldn't try to fight a serious disease with just Qigong but I wouldn't try to fight a disease without it. You can get Qigong practitioners to work on you from long distances away, you don't have to be present. Yea, I sound crazy and maybe I am but I've also seen two miracles in my own life that can be credited to Qigong.

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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.

Jump to this post

WSH… Very well said. The best intentions of some people can cut deep. I just finished an entire week of a very painful episode. I have RA. I was diagnosed with Fibro but about three years ago, the blood tests were changing. My pain this past week was as though my body was trying to shut down. I can't get into my Pain Mgt doctor as I am still waiting for the doctor to send the referral. My Insurance does not require the referral, but the Pain Doctor requires it. I think most doctors want to stay as far away as they can from the "drugs". Nevermind the med I am given for RA is poison. I give myself a shot once a week of Methotrexate. Then two infusions in a month. I was so sick for over a week that I stopped the Methotrexate. I actually started to improve. I agree until you have had to walk in our shoes with our own particular pain please do not judge. Obviously, the person doing the judging has not suffered the pain I have. And, many of you.

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@oregongirl

Ramakambhtla…I also have a heart condition. This was one of the reasons I stopped taking Methotrexate. For some reason it was adding to my pain. I was so severely in pain that I was concerned I was having a heart attack. I never did get it checked, but I do have a call into my Cartiologist. My granddaughter is a nurse and she was very upset that I was taking Methotrexate. It is poison to my system. This is my third day without it and my legs feel so much better. I started using Ibprophren yesterday. I am so afraid to let my doctor know as I bet she cancels me as her patient. Well maybe that best. I mean it, I was becoming a vegetable. I could not stay awake and I could hardly walk. Bags under my eyes turning blue. I thought my body was preparing to die. It was terrible. For those of you who take it and can handle it, great…but not me.

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I am being seen by the University of Texas medical center. She is not what I was used to. I sent a text again today asking for an appointment. Tomorrow I will call my Primary and her get on this. I believe that the Methotrexate was damaging my heart. I feel so much better

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