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.

formerpaa70 | @formerpaa70 | May 26 12:45pm

In reply to @trish70 "Hi Rachel, Thank-You! For reaching out to me. I have no friends. I cry a lot...." + (show)

Lonliness is v debilitating as you must know. Please stay connected here and reach out. Do your best to deal w this as it makes the journey more difficult.
Life is so hard. We are here for you

Rachel, Volunteer Mentor | @rwinney | May 26 12:51pm

In reply to @catartist "Oh how kind Rachel! And helpful. I do still need to take 5 prednisone daily -..." + (show)

I'm so sorry, not knowing what to expect must be scary. Not being familiar with your diagnosis I'm kind of winging it but that's why I love mentoring - keeps the brain sharp and learning new things.

Allow me to introduce you to my fellow mentor, John @johnbishop, who had been involved with the following discussion -

PMR or Steroid Myopathy:
https://connect.mayoclinic.org/discussion/pmr-or-steroid-myopathy/
Have you had a chance to browse our Digestive Health Support Group?
https://connect.mayoclinic.org/group/digestive-gastrointestinal-problems/
Cachexis or Cahexia is mentioned in various discussions but I'm not sure which applies to your situation. You can use the search bar at top to search the term you are looking for and hopefully connect with others.

Hoping this helps. Have a wonderful Memorial weekend.

vicscats | @vicscats | May 26 1:50pm

In reply to @trish70 "Hi Rachel, Thank-You! For reaching out to me. I have no friends. I cry a lot...." + (show)

Imm sorry for your situation. I have similar. But I won’t be homeless.
Living with mom has turned out to be my worst pain agravater what are your physical issues?
I have so many I feel like a kook lol
Always nice to connect

John, Volunteer Mentor | @johnbishop | May 26 2:53pm

In reply to @rwinney "I'm so sorry, not knowing what to expect must be scary. Not being familiar with your..." + (show)

Thanks for the tag Rachel @rwinney. Hi @catartist, I'm not familiar with Cachexia either but I did see some information that sounds like it might be what your doctor mentioned.

"Rheumatoid cachexia refers to the loss of muscle mass and strength due to rheumatoid arthritis (RA). It’s often called muscle wasting. About two thirds of people with RA experience this complication if they don’t control their RA."
--- Rheumatoid Cachexia: Symptoms, Causes, and Treatment: https://www.healthline.com/health/rheumatoid-cachexia.

Like Rachel mentioned there are a few discussions and members who have shared their experience with Cachexia but it's related to cancer and not RA. Here's a search link if you want to scan through the discussions and comments - https://connect.mayoclinic.org/search/discussions/?search=cachexia

@slkanowitz mentioned RA and muscle atrophy in another discussion and may have some thoughts to share with you on managing symptoms.

catartist | @catartist | May 26 3:35pm

My cache is is from RA but also the daily ( 40 yrs ) of prednisone- steroid muscle atrophy. I am looking for anyone else who has had this response - and any hints. Am doing PT, protein stuffing(!) calorie boosting. (97 now - down from 110 in a couple months. ) Quite thin but still little round belly ! lol. Very low energy but force myself to move - try to walk ( cane or walker) since it’s so important. But with loss of muscles ( 2of 3 gluts in not sides) I worry about further injury. Both rotator cuffs too . Thanks and bless you all!!

myggle1950 | @myggle1950 | May 26 3:47pm

In reply to @cb3 "Hi. My name is CB VIAU (pronounced VIEW). I live in a small community in the..." + (show)

@cb3

Hi. My name is CB VIAU (pronounced VIEW). I live in a small community in the USA with limited health care, and therefore, I practically live on Google and Amazon for utilizing research methodologies pertaining to healthcare. I've been at my wits end with chronic pain and decided to look for free online pain forums, and voila, through the grace of God, I found Mayo.

Ten years ago, I was treated for anal cancer, and unfortunately, the nerve damage has grown unbearable over the past 5 years, but especially these past several months. The foot neuropathy started about two years ago and that's when I was diagnosed with lumbar radiculopathy (referred pain from my back to my feet). I suffer with radiation proctitis, lumbar multilevel degenerative disc disease and a fractured sacrum, all brought on by chemo and radiation. I am not diabetic, but I could stand losing 25 pounds. Before treatment for cancer, I was very active both mentally and physically. But in the past several months I feel like I am losing myself. I can't fix me anymore and that is my worst fear. My energy has taken a nosedive, too, and I can't pull myself out of it. I'm angry because I'm not ready to give in and allow the many stages of pain to control me. I need a strong pain killer but good luck in getting it.

I have been a naturopath for years. If something in my body seemed out of whack, I would find a resolve using supplements, exercise and research. You could say I'm a “health-fad nut”. I'm always looking for something natural to help me carry on as a centenarian in training. (not a joke). Recently my PA mentioned Alpha Lipoic Acid to me. She also mentioned non-dairy and plant-based foods to help with inflammation in my body and to control cholesterol levels. I'm adhering to all three modalities. And next week I will have blood work done again. Hope it’s good.

Naturally I did my research on Alpha Lipoic Acid and my question is, how many mg of R-ALA stabilized should I take daily? For seven days I've been taking 100mg. But yesterday, I started taking 300mg daily. I'm not sure if I should go with 300 or 600mg. One of my PT’s takes 240mg. MY PA takes ALA, too, but I didn’t think to ask her how much. But I will ask her next week.

Once again, I am using myself as a human guinea pig. And I've been doing that for years. I don't know how long it takes for this product to ease the nerve pain. I just know that I am not feeling an improvement yet. My greatest desire is to be able to walk without pain. My hip joints lock up on me. My back hurts so bad I feel the need to sit. Shopping is becoming a real problem. I find myself pulling out my roll-on pain gel stick and rolling in over my back and parts of my leg, in public (with discretion). Walking to the dumpster where I live, pulling a light basket, is a problem. It's just a few doors from me, but I feel the need to sit because of the pain in my right hip joint area and sacrum. I have no life and it's really getting to me. I know this is a long-winded message, but I need to talk. I need to vent. Thank you to those who are listening and feeling my pain. I reciprocate and feel yours, too. Always. Hugs for relief and personal freedom. CB

Jump to this post

Hello, CB Viau, I wanted to respond to your inquiries about R-Lipoic Acid. I found out about it on this forum. For 2 years I have had chronic back pain and have scoliosis in all 3 areas of the spine . I have degenerative disc disease and arthritis with nerve damage to L3 and S1. I started taking the R-Lipoic Acid almost 3 months ago. I take 600mg 3 x a day. I started having pain relief at the end of 2 months. The pain isn’t completely gone, but it doesn’t seem as bad. Like you, I look for alternatives to prescription medications as I am so sensitive . My doctor approved the use of it . From what I gather I can take it as long as I want. I hope this helps you some!!

19yasala | @19yasala | May 26 4:06pm

Hi all. My name is Yvonne and I’ve been in constant pain for over 4 years now. I have Degenerative disc disease my entire spine, four herniated disc in lower back. Also spinal synopsis with pain in my pelvis and both hips and legs. My pain is just one of my issues I deal with daily. For the first three years it was Practically impossible to get any type of pain medication.
I would cry daily. Not just from the pain, but for how my life was changing because of it. It’s been a long & hard journey thus far.
I’m glad I found this group. I look forward to learning and sharing.

Jim, Volunteer Mentor | @jimhd | May 27 2:14am

In reply to @19yasala "Hi all. My name is Yvonne and I’ve been in constant pain for over 4 years..." + (show)

Welcome, Yvonne. I certainly concur with you that living with non-stop pain is a life changer. I spent a couple of hours today weeding a flower bed. It's strange to me that I don't notice the pain when I'm out working in the yard, but it hits when I stop. For me, yard work is therapeutic. Walking, not so much! Walking just makes my pain worse. Have you found a particular activity to be good for your mind and spirit?

My experience with pain has been that it can easily deepen depression and anxiety, and in turn, depression and anxiety can make pain worse. It's a cyclical progression. It's helped me to understand that. I've seen that the cycle is less vicious because I recognize what's going on.

Finding a support system is a big deal, and there's a good one right here. Welcome.

Jim

Scott R L | @scottrl | May 27 12:18pm

In reply to @19yasala "Hi all. My name is Yvonne and I’ve been in constant pain for over 4 years..." + (show)

Hi, Yvonne.

I've been in constant pain since having a stroke on Christmas Eve, 2018.

The pain isn't as severe as it was, but it's relentless. I haven't found a doctor who'll help -- one said, "You've put up with it this far, so there's no hurry now" -- so I just take it one hellish day at a time and hope for the best.

I try not to think about how much I have lost. I focus instead on what I can do.
Please check out my YouTube channel, "From Recovery to Discovery":
https://www.youtube.com/@srlucado/videos
I look forward to your feedback.
Best of luck to you!

ellie80 | @ellie80 | May 27 11:02pm

In reply to @19yasala "Hi all. My name is Yvonne and I’ve been in constant pain for over 4 years..." + (show)

I’m so sorry that you are dealing with so much.
I’m here trying to find help and relatability. Maybe like most others…?
I think as you read others experiences you begin to learn and heal to some extent. At least for me. I don’t feel so alone and that helps.
I pray you have good healthcare and wonderful pain management doctors. And if you don’t then start shopping for one. Good luck with everything and God Bless you.

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