Chronic Pain members - Welcome, please introduce yourself

Hi Rachel, Thank-You! For reaching out to me.
I have no friends. I cry a lot. Just about every day. I’m on disability so I don’t work. The only time I go out is to go to the grocery store. I’m terribly lonely. I can’t afford to live on my own so I live with my mom. When she dies I’ll be homeless. That scares me very much. I take a lot of medication.
I guess I don’t really have any coping skills.
I have a lot of hobbies.. I make beaded jewelry, soap, I work with resin and Simply Earth oils. I journal sometimes. With insomnia I’m up about 20 hours a day. It gets very boring. All my life I’ve just wanted people to like me. But I am always putting my foot in my mouth.. it’s very hard for me to keep any relationship. I’m just so lonely…

Oh how kind Rachel! And helpful. I do still need to take 5 prednisone daily - can’t get off due to pain - take lots more for pain too (Orencia, tramadol, Tylenol) but never free of it. I make myself keep moving and trying- little energy but moving does help. (pT once a week. Other at home) Always ate well and now trying to eat more - stopped weight loss at 97 ish. Would love to hear from others trying to manage Cachexis etc. it‘s not knowing what to expect that is so hard. Must keep moving

Hi Rachel, Thank-You! For reaching out to me.
I have no friends. I cry a lot. Just about every day. I’m on disability so I don’t work. The only time I go out is to go to the grocery store. I’m terribly lonely. I can’t afford to live on my own so I live with my mom. When she dies I’ll be homeless. That scares me very much. I take a lot of medication.
I guess I don’t really have any coping skills.
I have a lot of hobbies.. I make beaded jewelry, soap, I work with resin and Simply Earth oils. I journal sometimes. With insomnia I’m up about 20 hours a day. It gets very boring. All my life I’ve just wanted people to like me. But I am always putting my foot in my mouth.. it’s very hard for me to keep any relationship. I’m just so lonely…

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.

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

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.

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.

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.