1. < Chronic Pain

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.

woogie | @woogie | Nov 5, 2020
In reply to @frank1 "Hi, my name is Warren. I have dry eye disease, whose cause has yet to be..." + (show)
@frank1

Hi, my name is Warren. I have dry eye disease, whose cause has yet to be determined (after 6 years). I don't have pain in the sense of "hurt", but I do have it in the sense of irritation that is constant any time I have my eyes open. For that reason it seems I am more similar and sympathetic to people who have chronic pain than other types of disorders. People do not understand how it feels to constantly have sand in your eyes, or large foreign objects, and burning, and when one looks--there's nothing there! When I leave home or go outdoors, I find that wearing a snug-fitting pair of high-school chemistry lab goggles help keep my eyes from drying out so fast helps, but it is humiliating, and you should hear the comments some people make! I've said enough for now, but I am so glad to be part of this group. I hope I can help some of you. Thanks. Warren

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Hi Warren, My name is Woogie. I am an old lady now but haven't always been. When I was in high school, my eyes started itching, hurting, they felt exactly like they had sandpaper in them. My mother took me to the doctor and we found out I had conjunctivitis. I got a prescription for it and thank God, that cleared it up. Have you been to the doctor? Now, I have severely dry eyes and rub them constantly. My doctor said to use otc eye drops. He said you can do it frequently during the day. I forget to do it and now my neck hurts so bad I am in pain from multiple places. I have fibromyalgia which I was diagnosed with in 1980. I have severe spinal stenosis which causes immense pain in back and legs. I take pain pills from the pain clinic but they are not enough. In fact, he recently took one away from me because I asked him for muscle relaxor. Two weeks ago, I took a flying trip and hit the top of my head so hard, I was knocked almost unconscious. I had a cat scan and learned my neck C4 continous has been fractured. I have an appointment next week with a surgeon and pray to God that I do not have to have surgery. I also have a huge bulge in my esophagus and need surgery on hernia. I am praying for better health for everyone and that we all believe.

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1 reply
txsmo | @txamo | Nov 5, 2020
In reply to @jesfactsmon "@txsmo Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin,..." + (show)
@jesfactsmon

@txsmo
Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin, but here you say you are taking opioids. I am confused as gabapentin is not an opioid.

I remember you talking about your pain before when we chatted and I can't believe how much hell you are going through with all of this. I know you said you were on bisphosphonates for your osteoporosis. Does that add to your other pain or do you tolerate it okay? I'm sorry your stimulator is not helping you. It seems I am hearing more and more people say that about their stimulators. My wife has pretty much decided not to get one at this point, having heard so many failure stories.

I hope you can find someone good to help you with getting a pain pump put in. Sound like a much better way to get your pain dealt with in a much more methodical manner. I wonder if you ever found out what you wanted to know about ketamine? Your whole story really saddens me. You said you were diagnosed with CIDP 6 years ago. I wonder whether it come on you all at once or was it was gradual. I know when I found out I had MS it was about as sudden as it could have been, literally hit me all at once on the 4th of July one year. Best to you, Hank

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Hi Hank, I am still taking gabapentin for neuropathy that is a residual of the CIDP. I know gabapentin is not an opiod. I take opiods three times a day. The pain relief only seem to last 2 to 3 hours. I am probably going to have C-4,5,6 fusion. When I see the orthopedic surgeon in a few weeks I am going to ask him about a pain pump. Another member of this group wrote me yesterday and told me about her pump and I was pleased to hear about it. I am at the point where I should be enjoying life but I dread getting out of bed every day.

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txsmo | @txamo | Nov 5, 2020
In reply to @gingerw "@txamo It sounds like you have been through a lot of medical issues, and probably, like..." + (show)
@gingerw

@txamo It sounds like you have been through a lot of medical issues, and probably, like so many of us feel, just one would be enough!

Within this discussion group on chronic pain, if you go back to the index of conversation, please scroll down to one that is titled "I have a pain pump..." Right now I am on my tablet and cannot paste the address in here for you to go right there.

May I ask what opioid you are on, and for how long? Has your pain management team been able to assist you on a pain pump, and how to titrate off your current pain meds?
Ginger

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I do not see the index you refer to.

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2 replies
Hank | @jesfactsmon | Nov 5, 2020
In reply to @txamo "I do not see the index you refer to." + (show)
@txamo

I do not see the index you refer to.

Jump to this post

@txsmo
Hi Susan, I think Ginger means here:
https://connect.mayoclinic.org/group/pain/?pg=4
This is the index of all of the chronic pain discussions. The one she refers to is way down the list. Best, Hank

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1 reply
Mentor
Ginger, Volunteer Mentor | @gingerw | Nov 5, 2020
In reply to @txamo "I do not see the index you refer to." + (show)
@txamo

I do not see the index you refer to.

Jump to this post

@txsmo Here is the discussion I was referring to last night, when I was on my tablet. @erikas was nice enough to link it in her response earlier.
https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/
And here is a link to the discussions index within the "Chronic Pain" group https://connect.mayoclinic.org/group/pain/
Ginger

REPLY
txsmo | @txamo | Nov 5, 2020
In reply to @jesfactsmon "@txsmo Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin,..." + (show)
@jesfactsmon

@txsmo
Hi Susan, back on 9/28 you mentioned that you were only being treated with gabapentin, but here you say you are taking opioids. I am confused as gabapentin is not an opioid.

I remember you talking about your pain before when we chatted and I can't believe how much hell you are going through with all of this. I know you said you were on bisphosphonates for your osteoporosis. Does that add to your other pain or do you tolerate it okay? I'm sorry your stimulator is not helping you. It seems I am hearing more and more people say that about their stimulators. My wife has pretty much decided not to get one at this point, having heard so many failure stories.

I hope you can find someone good to help you with getting a pain pump put in. Sound like a much better way to get your pain dealt with in a much more methodical manner. I wonder if you ever found out what you wanted to know about ketamine? Your whole story really saddens me. You said you were diagnosed with CIDP 6 years ago. I wonder whether it come on you all at once or was it was gradual. I know when I found out I had MS it was about as sudden as it could have been, literally hit me all at once on the 4th of July one year. Best to you, Hank

Jump to this post

Hand, I get an infusion of Reclast once a year. I've had four infusions so far and skipped last year as you cannot get them forever since there is a risk of jaw or hip fracture. It strengthened my bones but does not correct the damage already there. I could not find out any information about ketamine infusions for pain. I live in a suburb of Dallas/Ft. Worth so if it could get done I am sure I could have found out someone who was doing it for pain. It took me four hospital admissions over 13 months to be diagnosed with CIDP. It is a vwry rare disease. I'm sorry about your MS. I hope you have found neurologist with a good treatment plan. Regards, Susan

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txsmo | @txamo | Nov 5, 2020
In reply to @erikas "@txamo Below is the discussion link @gingerw mentioned. - Pain pump, I have one, how about..." + (show)
@erikas

@txamo Below is the discussion link @gingerw mentioned.

- Pain pump, I have one, how about one for you? https://connect.mayoclinic.org/discussion/pain-pump-i-have-one-how-about-one-for-you/

Like Ginger, I too am curious what your pain management team has done to inform you about pain pumps?

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i really have not spoken to my pain specialist about pain pumps other than mention it to him. He stated that he usually uses it for cancer patients. I am going to speak with him further about it.

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txsmo | @txamo | Nov 5, 2020
In reply to @jesfactsmon "@txsmo Hi Susan, I think Ginger means here: https://connect.mayoclinic.org/group/pain/?pg=4 This is the index of all of..." + (show)
@jesfactsmon

@txsmo
Hi Susan, I think Ginger means here:
https://connect.mayoclinic.org/group/pain/?pg=4
This is the index of all of the chronic pain discussions. The one she refers to is way down the list. Best, Hank

Jump to this post

Thank you!

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txsmo | @txamo | Nov 5, 2020

Hi everyone! My name is Susan and I have lived with chronic pain for a number of years now. I have been paralyzed by an autoimmune disorder (CIDP). CIDP is a rare neuromuscular disorder. It took doctors 13 months to diagnosis it. I also have RA. My neurologist thinks that I possibly developed CIDP from using the drug Enbrel for my arthritis. I was on that for about 13 years. Right now I am taking nothing for my CIDP or
RA. I hope you are living your best life possible. Thank you for accepting me into this group.

REPLY
Erika | @erikas | Nov 9, 2020
In reply to @woogie "Hi Warren, My name is Woogie. I am an old lady now but haven't always been...." + (show)
@woogie

Hi Warren, My name is Woogie. I am an old lady now but haven't always been. When I was in high school, my eyes started itching, hurting, they felt exactly like they had sandpaper in them. My mother took me to the doctor and we found out I had conjunctivitis. I got a prescription for it and thank God, that cleared it up. Have you been to the doctor? Now, I have severely dry eyes and rub them constantly. My doctor said to use otc eye drops. He said you can do it frequently during the day. I forget to do it and now my neck hurts so bad I am in pain from multiple places. I have fibromyalgia which I was diagnosed with in 1980. I have severe spinal stenosis which causes immense pain in back and legs. I take pain pills from the pain clinic but they are not enough. In fact, he recently took one away from me because I asked him for muscle relaxor. Two weeks ago, I took a flying trip and hit the top of my head so hard, I was knocked almost unconscious. I had a cat scan and learned my neck C4 continous has been fractured. I have an appointment next week with a surgeon and pray to God that I do not have to have surgery. I also have a huge bulge in my esophagus and need surgery on hernia. I am praying for better health for everyone and that we all believe.

Jump to this post

@woogie I hope you had a good weekend. What day is your appointment this week with the surgeon?

REPLY
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