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.

@mojoearle

Hello group! I’m almost 34 years old and suffer from Chronic pain. I have had 16 surgeries and have been a patient at the Mayo Clinic in Scottsdale for almost 3 years now but I live in Idaho and have to travel down to Arizona every three months for a month or so of treatment and testing and Doctor appointments and just even thinking of packing and flying down makes me hurt even more. But in all seriousness I do struggle with the long trip down to Scottsdale and then making it to all of my appointments and giving hundreds of vials of blood and doing all the test and my existence is just painful all the time 24/7! I have a pain Doctor in Boise but they make everyone at their clinic only take extremely low doses of pain medication a day and DONT GET ME WRONG I WOULD KILL TO NEVER HAVE TO EVEN LOOK AT A NARCOTIC PAINKILLER AGAIN BUT I DONT EVEN GET TO A 5-6 ON THE PAIN SCALE!

Jump to this post

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.

REPLY
@briansr

Hi 19lin. I’m to the point that I can’t take this much pain. Surgery or
pills are a waste of time. I’ve always said , no offense to people that are
suffering with cancer, but after 33 yrs of this I’m backing in to a corner
with no way out. This is like cancer but no dr can tell me how long I have.
I’m now looking into marijuana use in my state. The govener is
decriminalized as of Jan. 2017 and there is a large push to make it legal
for medical use. I want to try it but if my dr tested me I will lose him,
we’ve had that discussion. I just don’t know if it would help, so I’ll wait
and see what happens in November when the people in this state will be
given a chance to vote for or against medical use. Both bills won’t make it
until Jan. The federal government. has all the the Drs scared because of
the misuse of narcotics. To many people pretend to be in pain just to sell
there medicine, I’ve seen it add 4 to 500 to there monthly income. This
puts narcotics in the wrong hands. Excuse me for rambling I’m just lost and
don’t know which way to turn. briansr

Jump to this post

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

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

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.

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

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

REPLY

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.

REPLY
@janies

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.

Jump to this post

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.

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

@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.

REPLY

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!

REPLY

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

REPLY

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

REPLY
@pkindron

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!

Jump to this post

Hi pkindron ………Oh wow, you sure said a mouthful! You are 100% right! No matter what ever happened to me, from pnemococcal pneumonia (my Dr. wanted me to go to the hospital, but I said “I’d be taken care of at home” …. HAHAHA), to torn ligaments in my ankle which he watched closely and kept cast in case I needed surgery, to flu, intestinal flu ……. you name it ….. my now X always went to work saying …..
“oh, you’ll be OK, the kids will help.” Now this was during the school year and they were gone, plus they were 8, 7, and one was not even born yet! Invincible? I don’t think so. You are right on.
abby

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

@amberpep, your post interests me because of your knee replacement. I had my right one done about five years and am way overdo to have my left one done. My right one hurts very frequently and it really has poor flexibility. My ortho (a different one than the last one who botched it) is hoping that after the left one is done it will take some pressure off my right and help it. I’m not so sure but I will give it a try.
What do you mean when you say they put in longer posts, is that what they generally do for a revision? I think that would make my knee even worse. I am very interested in your experience.
I agree, people downplay your pain. Because right now, thanks to lots of exercise strengthening my supporting muscles, I am not visibly limping, but it still does hurt frequently, yet people say I’m walking fine, why would I do a knee replacement? I am scared of a second one since the first one has not been great but I rushed into that one since i was in pain 24/7. This time the doctor who I am seeing is very highly thought of, a top-notch doctor. Having had a liver replacement I cannot have a lot of medications, and Advil is out of the question. Of the non-prescriptions pain killers I can only have a limited amount of tylenol.

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

Hi there ….. you’ve had a rough go of it …. I’m sorry. After the first TKR, it never felt right, even after several rounds of PT, TENS therapy,
something called Integrative Manual Therapy, some fluid withdrawals, and then I took a spill on my kitchen floor. After 2 years of non-stop “stuff” he said the only other thing we could do was do it all over again … a total revision. When they do that, they take the entire implant out and then when they put the new pieces in the long metal posts that go up the femur and down the tibia are considerably longer than they were before. I don’t know exactly how much longer, maybe an inch or two, but that’s a guess. Anyhow, after that and after PT, my knee feels like nothing has ever been done to it! It’s wonderful. But, I am absolutely sure I am a better weather forecaster than the guys on TV. I can tell a day or even 2 ahead when we’re going to have bad weather by that knee … it hurts. I asked my Ortho. Surgeon about that and he said that when the barometric pressure drops the tissues swell and put pressure on the appliance. The two together are what causes the pain. Like, right now here, we are to get a big dumping of snow tonight and tomorrow, and I knew that 2 days ago without hearing the weather. I’ve done a lot of research on-line about revisions, and you probably can find more information there too.
Take care and feel better.
abby

REPLY
@colleenyoung

Hi all,
I’m Colleen, Community Director and part of Connect’s moderator team along with Kelsey. I want to say a special thank you to @leh09 @19lin @seanbeck @suebreen54 @mlemieux @ladyjane85 @lolomarie @zjandre @briansr @salena54 @sharonmay7 for all your contributions and making new members feel welcome.

Cheers to continued connecting on Connect.

Jump to this post

I’m so sorry you are having problems with your TKR. I have had 1 replacement on my right and 1 TKR on the other knee. If you can’t take many meds for pain, I can’t imagine what you are going through. I have included a photo of an original and my revised TKR to help you visualize the revision. They have been making so many improvements that it is amazing. While even the best TKR will not be quite as good as the original knee, I have much less pain now after 3 knees! Hope the pictures give you a better idea of what a revision might look like. Be sure to get the very best doctor who specializes in knees and get several referrals about that doctor. Good luck and keep up PT, even on your own. Joan.

REPLY
@pkindron

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!

Jump to this post

@pkindrom, thanks for the info and photos. I presume your response was to my message. This whole thing, despite having a renowned ortho surgeon, is scary because if it ends up as bad as the first is, from a different ortho, then I will be miserable. Plus, as I said right now I am not ready for yet another recuperation after the two months of recuperation from my transplant. I try to be very active doing pool exercises and my recumbent bike and I know those will have to go by the wayside for a while.
JK

REPLY
Please login or register to post a reply.