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.

@19lin

How to get attention of higher ups? They want their money saved, so follow the money. I just sent email to my Congressional Representative about HR4063 which will be a law to stop opioids in VA medical facilities except for cancer and short term use. There is a vote coming on this bill so I am doing all I can to oppose it. Also write to the letters to the editor of your newspaper especially if you see an article that is negative toward opioids and pain.<br />
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I usually agree opioids are not good, but it is all we have that works right now. I usually push for funding for an objective method of measuring an individuals pain and for something to replace opioids that works. Also write to state officials. Check on web internet to find out about new laws or regulations being proposed. Any new federal regulation is suppose to have a period for comment from interested parties which is your chance to give your views.<br />
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Remember you are an expert at pain and you have knowledge that doctors and others do not have usually. Good luck and get involved. 19lin<br />
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Sent from Windows Mail

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@sharonmay7 too - If I did not have opioids for my small fiber neuropathy, I would not be able to get out of bed everyday and go to work. I would not be able to do laundry for my family and tidy my house the little bit that I do. Without that work and little bit of life, I would probably give up. So, please do not try to get opioids taken away. They should be on a case by case basis. I have been told I will be in pain for the rest of my life. My disease picks and chooses days, picks and chooses parts of my body that will be in pain. . . mostly my arms, legs, hands and feet. However, my right flank never stops hurting, EVER since my two emergency surgeries in 2011 for blocked bowel and then to remove part of my colon 3 months later. I'm only 56 years old and I want the little bit of life I have. I pray they stop the abuse, but let the people that need it, get it.

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Hello, I have Peripheral Neuropathy that came on within a week of getting the second COVID booster. I took Gabapentin first, but it made my ankle pain (OA from an old injury) much worse. I am now on Cymbalta 30mg which does get rid of the Neuropathy symptoms. However, lately my ankle is extremely painful again. Thinking I may have PRP or a STAR ankle put in. At any rate, I need to find a better way to manage my pain. So thought I’d follow this group.
Dee

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Hi Kelsey,
I am new to the group and hope to learn a lot from the group.

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@suz123

Hi Kelsey,
I am new to the group and hope to learn a lot from the group.

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Welcome! I’m somewhat new also, and I have learned so much, as well as beginning to feel a sense of community- of purpose, and running with the in-crowd!

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So thankful to find this group. I had scoliosis surgery 15 months ago to correct a 70 degree curve in my spine. Praying I will not have severe pain the rest of my life. Have been on Hydrocodone and am trying to wean off and learn of other ways to manage chronic pain.

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@linamend

Pain reprocessing is very popular way to treat chronic pain right now. There are some books out in it. My therapist is trying to use it with me. It's basically accepting and acknowledging the pain and reprocessing it as "there", but not owning it. Very hard to do.

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I am starting PRT next week. I'm excited and hopeful.

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I'm seeking info from members dealing with Morton's toe (neuromas). I'm dealing with three of those painful areas in left foot, including a hammer toe which has existed for over 15 yrs and becomes hot and painful also.

I've been told that a metatarsal support would help to alleviate the pain.
I've searched online and became frustrated with all the various choices/brands, and quite a few negative reviews.

Is this something that is best to have "prescribed" by a podiatrist, or are there any available at surgical supply centers, or stores like CVS, Walmart, where I can get support for those painful areas? Right now my hammertoe is somewhat stiff and encased in burning sensation, along with the other toes minus the pinkie. That little toe is just kinda tingly, nerve pain. Over the course of the last five hours, burning pain has now involved the entire foot (ankle is always burning due to trauma) and has traveled up the lower leg. Yes, I've seen several doctors, but I want to help myself if at all possible with support for the front part of foot.

Please share what has worked for you, and name/brand of any front-foot support.

Also, if you've had scrambler treatment for CRPS of foot/ankle, I'd love to read about your experience.

¡Gracias!🌺

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I have pain related to idiopathic neuropathy and severe Edema. It is nearly unbearable, I complain to my Drs but they don’t seem to have answers or care. Would like to get Mayo Drs opinions, but do not know how I would travel there.. I was recently told I have CHF, my Dear Lord, what else. I am getting depressed, feel alone. My children don’t live close, my wife divorced me 7 years ago, so I could not share in her parents estate. My family’s ranch supported her 42 years…. Just makes me sad…

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@bill5

I have pain related to idiopathic neuropathy and severe Edema. It is nearly unbearable, I complain to my Drs but they don’t seem to have answers or care. Would like to get Mayo Drs opinions, but do not know how I would travel there.. I was recently told I have CHF, my Dear Lord, what else. I am getting depressed, feel alone. My children don’t live close, my wife divorced me 7 years ago, so I could not share in her parents estate. My family’s ranch supported her 42 years…. Just makes me sad…

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I've tried replying but TWICE my long post does not get through, the "ball" just keeps twirling.
So I'll continue trying, but dividing my post to see if that will work.
Here goes the first section...

It's a heartbreaking experience when people whom you love(d) are no longer in your life. As human beings, we not only need but also crave the emotional and psychological support, particularly at our grayest moments. And the need for physical contact from embraces, holding hands, a kiss on the forehead/cheeks and yes, lips --- all are components of our humanity. I offer my empathy that you are in that situation that deprives you of this.

May I first of all suggest this: Focus on yourself, aim to release negative thoughts and feelings, allowing all of your energy toward self-healing. Negativity begets negativity. It's amazing how our emotional and psychological states impact on our physical being. I have suffered from clinical depression for nearly my entire life (in mid seventies now) and I am all too familiar with the grip that it can have on my daily wellbeing. Chronic, often very intense, physical pain is also my daily companion, and I feel worse on days that the guards for my mental wellbeing are lowest. I turn on the radio to what our adult children call The Old Fogey Station, and listen to both present and "old time" ballads. Or I’ll play CDs of oldies music, bringing me back to my pre-teen years and onward. Music has been shown to release endorphins, the "feel good" juices in the brain, and I savor the oftentimes warm, nostalgic memories that the music generates. So does exercise release endorphins, so do whatever (even limited) movements you can handle. MUSIC PLAYING WHILE I AM IN THE KITCHEN has made me break into dance moves from my younger years, making my body move to The Locomotion, The Twist, The Pony, etc., as well as some of the moves from when I used to lead dance-exercise and middle eastern dance classes for young girls. Needless to say, the body does not do what it used to do so effortlessly, but the point is that YES, I move and benefit from doing so.😁. It's uplifting, even if my moves have had to be "changed" a bit to accommodate my present body☺️.
ANOTHER IMPORTANT ASPECT: Engaging in even mild physical activity, even those done in-chair. There are TV programs in really early morning hours (5 to 6:30 am), even yoga and meditation. My insurance provides free membership in a program titled Silver Sneakers, with ability to go to an actual gym (designated), and also online Zoom classes of all kinds of physical programs. Sometimes there are hands-on activities, like learning skills and artistic offerings as well. All FREE. When possible, I’ll step outside (we are fortunate to own a home situated in a quiet, nature-enriched area of our town), and do walking on our ample sized deck, deep breathing and enjoying the rustle of the tree leaves, the sway of the tall trees that seem to brush the puffy clouds and blue sky. I can’t ambulate around the property due to ground areas being slightly uneven in places, thus presenting a danger to my unsteady, unbalanced gait. I’ll lean against the back rails of the deck, close my eyes and listen to the sounds of nature, absorbing he benefits of the sun. Get outside as often as you can; it’s refreshing and so beneficial. I used to do fast-walking at the town track but that had to be curtailed several years ago.
EXPLORE ARTISTIC OUTLETS. Hobby stores like Michael's offer FREE crafts classes and also art such as water painting, acrylic, charcoal, etc. Libraries have bulletin boards with posted info on activities especially meant for senior residents, and even prose and poetry writing. Lots of great things on youtube also! Help your brain form dendritic connections!

ATTEND A LOCAL SENIOR GROUP: Since you live alone, and alone due to familial circumstances, perhaps you could consider such a group (our town has one that meets regularly, for members to be socially involved via activities, invited speakers, or sharing tea/coffee/hot chocolate and baked goods, some which are made and brought in by members). They also arrange "field trips" to local places of interest. Our town offers free transport to the Senior Center, and there's a Lunch delivery program also. Do as little or as much as you wish. Social interaction will help with your loneliness and depression.

(more to come)

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bill5: Here's more of what I've tried posting/uploading....
JOURNALING is a great outlet as well. Since retiring back in 2010, I’ve enjoyed free time in which to explore my lifelong interest in writing. I engage in capturing experiences within memoir, essays, short stories, and have expanded into young adult and children's literature. Just be prepared that powerful emotions will be released when engaged in memoir writing. But for me, that's been a great enlightenment and catharsis.

AS FOR YOU SPECIFIC PAIN ISSUES: I sought and found (thank God!) a PODIATRIST who is independently employed, not associated with any medical groups. He has been so helpful with the podiatric problems that plague me, and is generous with his time. He addresses the arthritis that is also present. He created a prescription for a cream targeting the metatarsal pain, which a compounding pharmacy then filled and mailed to me. The cream DOES help. I apply it thinly (as instructed) on the affected toes, etc. He also incorporates ultrasound on the areas, as well as gently "binding" the foot. The "binding" is removed (by me) within 48 hours. Also gave me a specific brace for my ankle since he acknowledges the serious trauma that affects that area and made the joint unstable. Agrees that Complex Regional Pain Syndrome (diagnosed by incredible neurologist) is what is behind all the constantly burning pain. Emphasized that continued PT is essential since CRPS patients need that in order to help mitigate further intensity of symptoms. I strongly urge you to research podiatrists in your area, and select one covered via your insurance. One thing for sure: I will NOT have hammer toe surgery (which had been urged by former podiatrist of 30 years). I've read here on this site about members who had that surgery and it aggravated the neuralgia and neuropathy in the affected foot. Nor will I ever have the neuromas surgically addressed, since mayoconnect members have posted how that surgery augmented pain and other issues. I'll deal with the devil that I know🤔. I also have learned to appreciate wide toe-bed shoes (I've had to turn to wearing comfort/athletic shoes), and in up to a whole size larger, to prevent toes from being pushed up against front of shoe. Uh-uh! COMFORT is the key word. I'm fortunate to have TJMax nearby and have found wonderful Merrells for up to 70% less than retail, and also Skechers (but only specific styles). Kohl's has incredible sales (including outrageously low clearance) on Skechers. Try Zappos.com. Free shipping and free returns, no restocking fees (as of today Dec 7 '23). Always wear a comfortably protective shoe in the house. I have a pair that is my "indoor shoe" since being barefooted (even with cushy socks) makes walking excruciatingly painful. And in the past I broke two toes on different times. 😫

Just a few avenues that I use when pain strikes in the higher Pain Levels:
OTC MED: Can’t take pain meds so I take what my primary okayed: Aleve. I take it judiciously since I have GI disorders which I thankfully keep in check with my careful food choices, and Aleve can also affect my blood pressure (on meds for that). I will either lie down and rest legs against the wall, or sit down and place pillows on the ottoman to elevate them. DOES help!
HEAT: I have a heating pad that I apply to the affected areas, even the toes! Last night, I ordered a specially designed heating pad that permits the feet to be inserted for soothing heat. Washable. Was on sale, so very affordable. Can’t wait for it to arrive since it will also be wonderful when my feet are cold (even to the touch; I also have Raynaud's in hands and feet). Yes, I’ll share this item with hubby!
My husband uses VICK’S on his feet (has seriously painful neuropathy), and on his thumbs (has both osteo and rheumatoid arthritic conditions). I detest the smell, so I don’t use this product, but it helps him, and I’ve read online that others have found great comfort and release from pain using this decades-old ointment.
SELF-MASSAGE: I apply cream to both feet (extremely dry skin) and massage VERY GENTLY. Really feels good, and provides opportunity to examine any possible changes.

Hope these ideas can bring a few elements that you’ll find useful and do-able.
Please let me know.
I wish you well, and may you find peace during the upcoming holidays, whichever one you may embrace.🌺

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