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.

@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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Hi Fran – when you mention carcinoma – is that the same as carcinoid cancer?

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@foxylady

Hello, I am Fran Clark, my name is misspelled in my e mail address my error. left out the r. I have renal carcinoma, tumor went to spine L2, L3 and now they are completely destroyed. from there, I have bone cancer, about 10 fractures (small) cancer broke clavicle, humerius
tail bone, and now 2 lymph nodes show cancer in my abdomen( I don’t know what next will be. Little pissed off right now (sorry for the language).

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Hi Joanne, I’ll jump in to clarify here. Carcinoma and carcinoid are not the same thing.
Carcinoma is a cancer that begins in the skin or in tissues that line or cover body organs. Carcinoid tumor is a specific type of neuroendocrine tumor.

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Have suffered with burning tongue for 25 years everyday. Would like to connect with others with long time misery as me.

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I have Ehlers-Danlos Syndrome 3.I
I am in pain 24/7 of varying degrees. I have been prescribed Tapentadol (Palexia) which is this side of useless.
I attended the Pain Clinic in Norwich and because I missed the last class of Attitude Commitment Therapy (I called in to say I was in terrible pain and couldn’t make the journey) I was informed they could do nothing more for me which prevented me from getting hydrotherapy, physiotherapy, acupuncture and counseling.
So that’s my present situation.

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@tabitha I am sorry for your problem. I have said this before and I will say it again. As a group of chronic pain suffers we need to become more assertive and push for our rights to treatment. When your group refused to accept your reason for missing the group and dismissed you with out regard to your rights. I believe you should consider seeking out an attorney and sue them or at least threaten to sue.
Your reason for missing the group was valid in my opinion. I have missed doctors appointments and other events due to excessive pain on the day of the event. To me that is a valid reason, especially if you are driving yourself and would have endangered yourself and others if you drove in so much pain that you might have loss control of the car.
If you can not afford an attorney check with legal aid or any attorney groups that provides service to the poor or special groups for civil rights.
The medical-industrial complex is making a huge amount of money from chronic pain suffers and only if we threaten their funding source will they start to pay attention to our needs.
Good luck and I hope you will become pain free in the near future. 19lin

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@connielaine

Have suffered with burning tongue for 25 years everyday. Would like to connect with others with long time misery as me.

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Hello connielaine and welcome to Connect. Thank you for sharing your frustrations. 25 years is a very long time. I recommend checking out the existing conversation on burning mouth syndrome as other members are discussing symptoms similar to yours.

You can join that discussion here http://mayocl.in/2d5g7f5.

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@kelseydm
Hi, im new here so im not sure exactly what to do. I seen a post to introduce myself. My name is Joyce P. I just turned 51, around 2 weeks ago. I have 3 adult children and working on grandbaby #6. I have 2 dogs, 2 kittens, i live alone, i have numerous health issues and i live with chronic pain.

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Thanks for your response, Scott. So sorry for all your wife’s pains and struggles. What is MS Contin? I am on oxycontin ,lyrica, cymbalta, anaprox, and tylenol. I’ve tried acupuncture. I also had to have my metal removed from my back last year because it appeared to be causing lower back pain.

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Hi Cheryl-
Thanks for your response. It can’t hurt to hear what others with similar conditions are doing for their pain. I’m hoping that someday the medical community will come up with something to relieve the pain of CRPS.
Kathy

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@kathyv

Hi, I’m Kathy V.
I have had multiple spinal fusions, starting with one for scoliosis as a teenager in 1969. I had a laminectomy in 1990, and in 2006 and 2007 I had two major spinal surgeries with anterior and posterior placement of screws and plates at L4 through S1. Since then, I have suffered with chronic regional pain syndrome in my right foot and leg. Even though I am on multiple medications, the pain is constant and severe.
I’m hoping that by taking part in this group that I might find some suggestions for relieving this neurologic pain.

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Hi @kathyv It is one of the forms of oral morphine. You can read about it here http://www.mayoclinic.org/drugs-supplements/morphine-oral-route/description/drg-20074216. My wife used to carry one of her screws around with her just to remember 🙂

Peace and strength

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Hi my name is Anjou. I was involved a MVA where my two kids were in the car with me strapped and in their respective seats in the back. My son at that time was about three and a half and my daughter was seven and a half. Its been six years but to this day i still am in pain. It gets bad when i fall sick or am in stress. I am on a regular basis on naproxen, lyrica, concerta and tylenol. I have been able to take cymbalta out of my regular cocktail of meds and have replaced it with St. John’s wort. I do daily meditation, yoga stretches and taichi to function on a day to day basis. The thing is this new feeling of hands, knee and bottom of feet’s burning sensations and also the feeling of numbness and sometimes “bug crawling” sensation is now more predominant since i am home. I am more fatigued and am more prone to infections (colds , flu and coughs). I want to take off my meds and try new natural remedies like i have done with cymbalta. Please advise. I am very sensative on my left side and when in pain its the whole left side that hurts even more. I also have severe headaches along with the pains.

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@tabitha

I have Ehlers-Danlos Syndrome 3.I
I am in pain 24/7 of varying degrees. I have been prescribed Tapentadol (Palexia) which is this side of useless.
I attended the Pain Clinic in Norwich and because I missed the last class of Attitude Commitment Therapy (I called in to say I was in terrible pain and couldn’t make the journey) I was informed they could do nothing more for me which prevented me from getting hydrotherapy, physiotherapy, acupuncture and counseling.
So that’s my present situation.

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Hello tabitha and welcome to Connect. It sounds like the side effects of Ehlers-Danlos Syndrome can be very frustrating. I invite you to check out some of the following discussion threads where EDS has been discussed by other members:

– The Disorder You May Not Know You Have http://mayocl.in/2bnkbGt
– Searching for Adults living with scoliosis, thoracic stenosis http://mayocl.in/2eoGfT4
– Shoulder Dilocation and Hypermobility http://mayocl.in/2edL5Oa

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@anjou

Hi my name is Anjou. I was involved a MVA where my two kids were in the car with me strapped and in their respective seats in the back. My son at that time was about three and a half and my daughter was seven and a half. Its been six years but to this day i still am in pain. It gets bad when i fall sick or am in stress. I am on a regular basis on naproxen, lyrica, concerta and tylenol. I have been able to take cymbalta out of my regular cocktail of meds and have replaced it with St. John’s wort. I do daily meditation, yoga stretches and taichi to function on a day to day basis. The thing is this new feeling of hands, knee and bottom of feet’s burning sensations and also the feeling of numbness and sometimes “bug crawling” sensation is now more predominant since i am home. I am more fatigued and am more prone to infections (colds , flu and coughs). I want to take off my meds and try new natural remedies like i have done with cymbalta. Please advise. I am very sensative on my left side and when in pain its the whole left side that hurts even more. I also have severe headaches along with the pains.

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Hello Anjou and welcome to Connect. Other than your ongoing pain and issues with burning sensations, I hope that your family is doing well. Although the causes may be different between some of the members, you may find some answers from others in the following discussions:

– Neuropathy pain in my left foot and lower left legs http://mayocl.in/2dpfyLO
– New daily persistent headache http://mayocl.in/2dNTLL6

In these discussions, feel free to ask other members questions and explain a bit more about yourself to exchange information that may help others as well.

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Hello I have just joined this Mayo Clinic discussion group today I’m going by the name of virtuous and I would like to participate in discussions learn as much as I can about handling pain. I have all the back issues .I’d like to learn a lot of positive things be a positive member in the discussion but there are days where I feel I’d like to shed a tear or two. so I’m hoping to get involved and be a positive influence and have it be a help to me as well as the others thank you would love to hear a reply. I’ve had several spinal epidurals and I’m experiencing a lot of pain I haven’t had and that the door for ages so I was trying to find out the long life term effects of steroid and cortisone in your system love to hear some feedback.

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@boxermomma

@kelseydm
Hi, im new here so im not sure exactly what to do. I seen a post to introduce myself. My name is Joyce P. I just turned 51, around 2 weeks ago. I have 3 adult children and working on grandbaby #6. I have 2 dogs, 2 kittens, i live alone, i have numerous health issues and i live with chronic pain.

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Hello @boxermomma. Welcome to the group. What conditions do you have that are causing your pain? I have Fibromyalgia, arthritis of knee, hands and cervical spine. I also have bone spurs and disc degeneration c 5,6.

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