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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.

tbeckys | @tbeckys | Mar 4, 2018

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!
REPLY
18 replies
Texas Freedom | @oregongirl | Mar 4, 2018
In reply to @oregongirl "@wsh I would rather not think about something I cannot have.. j stopped my injections today...." + (show)
@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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WSH66 well I might be able to have one. IF I AN get in to see the Pain doctor.

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Texas Freedom | @oregongirl | Mar 4, 2018
In reply to @tbeckys "Hi, my name is Terry and I was diagnosed when I turned 38 although I think..." + (show)
@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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Looks like you are doing some great things to help you. I can only speak for myself. My doctor has me on Methotrexate and Infusions. I QUIT today. I have had it with feeling bad day and night every day. No fun times, no church nothing with the kids. I am hopeful I will see a Pain doctor soon.

REPLY
Texas Freedom | @oregongirl | Mar 4, 2018
In reply to @wsh66 "There is one problem with HIPAA. There is not one red Cent in any government budget..." + (show)
@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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Wsh, Marie I agree with you. There will be a shortage. I have no idea how this will be resolved. But, you better believe any of the Congressmen and women who have pain get the pain pills like it or not. Remember, they need to control us, or so they think.

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Gary, Alumni Mentor | @gman007 | Mar 4, 2018
In reply to @lilgrizz "Hello Kelsey, thank you for this group. I don't know where to start describing my pain...." + (show)
@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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In the upstate of SC, mimij is correct. I don't know anyone who is receiving opiates from the primary care physician. I am sure there are a few older docs who believe their first priority is to care for their patients and if pain meds are a part of that, they do what is necessary. I seriously doubt they are advertising that practice and have likely requested that their patients not go around town advertising for them. I can especially see this in very rural areas where it is difficult to find a Pain Management Clinic. My Pain Mgmt. office dots every "i" and crosses every "t" in terms of regulations, but I am certainly OK with that if that keeps them in business and able to give me some relief for my pain.

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Mentor
John, Volunteer Mentor | @johnbishop | Mar 4, 2018
In reply to @tbeckys "Hi, my name is Terry and I was diagnosed when I turned 38 although I think..." + (show)
@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

Hi @tbeckys, I have been looking into near infrared light to help with my neuropathy but haven't purchased anything yet. I saw the owner of the SaunaSpace Company interviewed on a YouTube video by Dr. Terry Wahls and found it pretty compelling. I was looking at buy a single light unit but their main product is a small sauna to house the light units. The website has a lot of research articles and also videos that are pretty informative - https://saunaspace.com/articles/. The YouTube interview is worth watching.

Hope you find some relief.

John

REPLY
tbeckys | @tbeckys | Mar 4, 2018

Thanks, John as Much will definitely watch the link to the video you sent. I’ve also heard that Hyperbaric Oxygen can help immensely but the only place that I found that has it is U.T. Hospital in Knoxville, Tn. Close to where I live.
The town where I live doesn’t do much as far as if I lived close to a teaching hospital like Johns Hopkins or Duke!
Best of luck to you and let me know what more you find out about it!

REPLY
Texas Freedom | @oregongirl | Mar 4, 2018
In reply to @tbeckys "Hi, my name is Terry and I was diagnosed when I turned 38 although I think..." + (show)
@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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WHY are they giving us these medications. There is no cure. What are they meds doing except make us hurt and feel crappy all day everyday. Nap time is from after breakfast to lunch time, then again in the afternoon. I have no life. That must end.

REPLY
Texas Freedom | @oregongirl | Mar 4, 2018
In reply to @lioness "As a retired nurse I can tell you when this law was enacted Dr.@nurses where so..." + (show)
@lioness

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

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It is wrong to HARM your patients. The harm will cause even more issues. You wait, this is just the tip of the Iceburg.

REPLY
peach414144 | @peach414144 | Mar 4, 2018
In reply to @ramakambhatla "I have chronic pain in the right thigh, said to be due to, neurogenic claudication, with..." + (show)
@ramakambhatla

I have chronic pain in the right thigh, said to be due to, neurogenic claudication, with MRI showing DDD and no
specific therapy like, ESI is attempted, due to antiplatelet agents in the treatment of known CAD-LAD stent. I am not
able to walk for more than a minute or two, sit down for pain relief, and try to walk again. I need wheelchair for longer ambulation. This has been so. for nearly 2 years, spine surgery did not offer any help.(from India)

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@Dear Jim, thank you for caring and the information. it will give me more of this subject to consider. Again, thanks Peach

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