Chronic Pain members - Welcome, please introduce yourself

Hi, mojoearle. I, too, grew up in Idaho, and I also go to Mayo AZ when I need to. But you and many of the others remind me to put in another note about amyloidosis. (amyloidosisfoundation.org or Mayo.com) It is a broad group of diseases coming out of screw-ups of the protein pieces in our bodies. They die, then some are kicked out of the body, and other pieces are deposited by the blood in different places around the body, anywhere from the toes to the brain. They form little tubes (fibrils) filled with water between existing cells, and create havoc with whatever tissue they get into, and they can get into any. So the diseases are all forms of amyloidosis, and include: Alzheimers, Crohns, Multiple Myeloma, other dementias, lots of pain, bone pain, eye pain and disfigurement, urology pain, heart arrythmia, multiple organ failure (rheumatoid or psoriatic arthritis, lupus, crohns, tongue, larynx, heart, lung, brain, esophagus, stomach, spleen, pancreas, liver, intestine, kidney, prostate, and assorted other and glands and tissues). It is, in most types, always fatal. The point is this: if you have multiple tissue failure, or unknown pain, get yourself tested. Do a 24-hour urine/protein assay, a serum FreeLite chain protein assay, some simple biopsies, and other tests. You may save yourself and the insurance people lots of money and pain. The biopsy is required for Medicare or other insurance, It is not a true diagnosis, as it produces some false negatives. But it is something of an indication of how long you may live, if it does show up. There are a hundred markers, plus symptoms and signs. So if you have any of these things, find a good hematologist/oncologist, and look up the web site. DO NOT LET THE DOC SAY "THIS DISEASE IS SO RARE I AM SURE YOU DO NOT HAVE IT." If they do, find another doc. Call Mayo or Sloan or Brigham, Stanford, MD Anderson, City of Hope, etc., and ask for a reference.

A few months ago, a friend gave me a square of his cannachocolate to try. He had a medical card for it. The little piece I ate really did help my neuropathy pain for a few hours. Here in Oregon, Marijuana is legal, both medicinally, and recreationally. Of course, you're supposed to buy it from a licensed dispensary, not on the street corner. Theoretically, the weed is correctly labeled, as to purity and potency. I had to make the difficult decision not to apply for a medical permit. The dispensary brings in a doctor once a month to write prescriptions, at a cost to me of around $200, something that is required annually. The fee for a medical card is also around $200, also annually. Then, the product is certainly not cheap.

Recently, I bought an ounce of Marijuana trim - for $50. Today and yesterday, I made cannabutter, to use in baking and cooking. This is my first try, and I used more butter than the recipe calls for,so it wouldn't be too potent for a first timer. I think I'll make a batch of cookies to see if it's strong enough to ease the pain. I'll either need half of one, or 3 or 4 at a time, not good for the diet. I sautéed an original recipe, with cannabutter, olive oil, garlic, celery, celery salt, mushrooms, some soft canned peach, and a TBSP of a squeeze tube of Italian herb, then cooked a pork cutlet in all of that. No recipe for it. It tasted good. All of the herbs I added covered the cannabis taste.

I never EVER had considered pot until nothing else has touched the pain. I'm a retired minister, with a very conservative church, and pot is probably a bad word. But if it works...and, hey, it's natural. I bet there was a nice patch of it in the Garden of Eden.

Some significant changes need to happen in our health system, so that those of us who know chronic pain will be able to get the medications we need at the necessary dosage. There needs to be a separation of pharmacology and state. It's not something that should be politicized in any way. Maybe we can even begin to accept some of the alternative medications, and alternative treatments. For all of our progress, all of our intelligence, I don't think we've begun to understand all that God created. And we've sure blown the taking care of it part.

I figure that if my battery is getting low, it's time to get off my smartphone. Otherwise, I just keep talking.

Jim

I agree with you. We all experience pain differently. Perhaps having a short description of pains and letting you choose which one feels like what you have. People who talk about their pain to family and friends are seen as negative and self centered. It is so wonderful to have a group you can talk to about your pain without feeling over overbearing; without feeling judged.

I totally agree with you judy ..... I've had a total knee replacement 4 years ago, and then had to have a "revision" (meaning they redo the whole thing but with longer posts), and my kids seemed to think that Mom was invincible .....at times it hurt like crazy and I wouldn't take the Vicodin the Dr. gave me (too much family history), so I'd take 4 Advil. They could not understand why I was tired and needed rest, nor why I had such pain in my knee. That makes it really hard on the person experiencing the pain. It negates it and makes us sound like we're just using it to complain. They have no idea.
abby

Hi, my name is Janie. I have Fibro and severe degenative osteoarthritis with multiple joint replacements. I generally do well on my medication regime but there are times when the pain still limits my ability to do things. I have thouggt about adding essential oils but I am concerened about interactions with my current meds.

Hello @janies and welcome to Connect. Thank you for introducing yourself to the other members of the Chronic Pain group. You will find it is a very active and welcoming group with a lot of collective patient knowledge!

Here are a few other discussions taking place on Connect that you may want to check out based on the diagnoses you mentioned:

- Fibromyalgia Pain, http://mayocl.in/2hgUGcv
- Osteoarthritis at 32, http://mayocl.in/2mPCBoe (brand new discussion I think would be great for you to Connect with who started it)

@janies, I look forward to seeing more posts from you on Connect. Don't hesitate to ask any questions about how to use Connect if they should arise.

@amberpep

Abby, you're absolutely right. People have weird ideas about chronic pain. I think my wife and I pretty well share empathy. She has pain in her knees and hip and shoulder, so she doesn't minimize my pain. Brain pain is harder for her to handle. She's never been depressed, and certainly never suicidal. She doesn't like that my depression pulls her down, or at least it used to. She decided that she wasn't going to let me do that to her anymore. I know that, understandably, it's hard to live with someone who thinks about dying every day. I rarely say anything about it because it would upset her.

Those who have supportive spouses are specially blessed. I know people who have chronic pain and chronic mental health issues, whose lives are hell because of the way they're seen and perceived and treated by the very people who are supposed to love and care for them.

Jim, not a hypochondriac.

hi Jimhd & Amberpep - This is so true about our children and actually even my husband. They all think we are invincible! Most of the time, between having back and leg pain from a bulging disk, degenative disc and arthritis I even wonder how we all do it. I think they are so use of us doing it- I know they care but when we don't cook or do laundry, they just don't understand. Sometimes, I just come home and say I'm going to bed -I get so tired. Thank you for sharing!

Is there a way to post without it being a reply?

Hi - My name is Patti and i am newer to the Mayo Clinic Connect. I find this very informational - Thank you!