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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.

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

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@txsmo
Hi Susan, I think Ginger means here:
https://connect.mayoclinic.org/group/pain/
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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Ginger, Volunteer Mentor | @gingerw | Nov 5, 2020
In reply to @txamo "I do not see the index you refer to." + (show)
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I do not see the index you refer to.

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@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

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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)
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@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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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)
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@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)
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@txsmo
Hi Susan, I think Ginger means here:
https://connect.mayoclinic.org/group/pain/
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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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.

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

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wishingtobepain | @wishingtobepain | Nov 15, 2020
In reply to @user_chc48c0aa "Hi, my name is Allan, I have been diagnosed with ilionguinal neuropathy from hernia surgery. I..." + (show)
Profile picture for user_chc48c0aa @user_chc48c0aa

Hi, my name is Allan, I have been diagnosed with ilionguinal neuropathy from hernia surgery. I am in constant pain, the only relief, is the medication which only reduces the level of pain. No one seems to understand what this pain is doing to my activities of daily living. If someone knows if there is any clinicle studies on this I would appreciate any information. I would also like some help in assessing the Ama guide to impairment in relation to this problem. <br />
Thank you<br />
<br />

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Hi Allan, my name is Carol and I believe we are living in the same world with nerve pain. Mine started in 1987 after my hysterectomy. After every abdominal surgery, pain just got worse and became unbearable. For 3 years I hardly left the house except for Dr appt. I did start getting shots in lower right abdomen and pelvis, which helped me to be able to walk.

Have they mentioned injections or burning nerve? What i was told 10 years ago was if they hit right nerve with injections, I would be out of pain. Even though they are shooting into illonguial nerve, and others, I am still in horrid pain. A lot of issues is there's so much scar tissue around my hysterectomy scar (cut hip to hip) and below that nerves are in trapped. I haven't worked in 13 years, pain changed my entire lifestyle.

Just wanted you to know that I definitely understand your pain and give you info on injections, etc.
Please let me know if you have any new information on what to try, clinical studies, etc.

Thanks and take care of yourself

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faithgirl30 | @faithgirl30 | Nov 22, 2020

Hi everyone! I just wanted to introduce myself and say Hi!

My name is Melanie and I’ve lived with chronic pain for last 5 years or so. I’ve undergone 5 spinal neck surgeries in the last 4 years, the last of which was October 2019. I am now fully fused between C2-T2. My first surgery involved 2 artificial discs which failed. I’ve had a spinal cord stimulator implanted, which didn’t help, so it was removed in my last surgery. I have a fantastic pain specialist and spinal surgeon who coordinate care together, but they agree that I will probably live with chronic pain the rest of my life. I lost a lot of neck motion in the last 2 surgeries and live with chronic daily headaches as a side effect of the added force being exerted at the base of my skull. We are planning on a transition from high dose dilaudid to suboxone in the next few months. Few people appreciate or understand how draining chronic pain can be and how it limits activities of daily living.

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