Chronic Pain members - Welcome, please introduce yourself

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Thanks
Colleen

I went through their Pain Rehab program last year. it helped me a lot in "managing" my pain and I would heartily recommend it for all dealing with chronic pain. It was a three weeks, 8 hrs. per day. It taught me ways to avoid painful activities/ situations and to change my ways to avoid more pain. It also got me off Opioids which I would recommend for all who suffer. They present a real "slippery slope" in your life. I was technically driving under the influence for about 10 years. Thankfully I never got caught.

Hi, Sue. It's been 10 days since you wrote this. I'm wondering how you're doing. You sounded pretty discouraged, and I can surely relate to that. Do you have someone to talk to about how you're feeling? Talk therapy has been a help to me. I don't know if I would have been able to climb out of the dark hole of depression without the help of counselors. I'm still not the same person I was pre-depression, and maybe 6 is my new 10. I have learned one thing, which is redirecting my thoughts. When suicide comes up, I recognize the thought and move my focus to something else. Sometimes I pray at times like that, and I find that when I do, the negative thoughts become much less obtrusive.

It's time to get to sleep, so I have to stop writing. I'll pray that you will find encouragement that will offset some of the discouragement.

I am glad the Mayo Rehab worked for you. I was hoing to do a 3 week<br>inpatient headache clinic in Chicago, until I realized I am already doing<br>everything they offer. I called Mayo, but they want me off opiates for 2<br>months before seeing me. I won't do it. I only get 2 doses per week, I have<br>never nor would I ever drive while taking them (even though I do not feel<br>high or impaired in any way while taking them. It is just common sense not<br>to drive while on narcotics.) The few hours a week of pain de-escalation I<br>get from percocet give me the will to live, to keep fighting. It allows me<br>to pay bills online, take a shower, do a load of laundry. I have simple,<br>low-expectation goals. Someday a better cure may come along for migraine. I<br>have taken percocet for 15 years or more without incident, addiction, or a<br>slippery slope. Everyone is different. We also must recognize that pain<br>medication decisions are often being made by legislators, insurance<br>companies, and health care providers trying to protect their licenses.<br>Politics is driving medicine's attitude regarding opiates as much as<br>anything else.<br>

I see there hasn't been any activity in this discussion group for a while so I'll look for another one.

Welcome to Connect @cahnny. On the contrary, there is steady activity in the Chronic Pain group https://connect.mayoclinic.org/group/pain/ So glad that chose to post a message. We'd like to get to know a bit more about you. What brings you to Connect and in particular to the pain group?

Your ( our ) best bet is to notify our state representatives and/ or our congressman and ask them what the best way to get our voices heard. There is a site you can go to called Change.com. It is a site that anyone for any reason can start a petition online. I have seen some that have been very successful. Try these 3 ideas and I am encouraging others as well to do the same. Maybe at least it can be a starting place. I will see if I can find anything else that may help. Good luck to us.

Tell us about yourself and what brings you to the group? The members will come out once they've been summoned.

Hi Colleen: I'm sorry I haven't replied before this. To be honest, I'm starting to feel like a hypochondriac, don't know what to say or where to begin because there is so much going on for so long. I'm 70 years old. I'm living solely on SS and medicare. I have a long history of degenerative/auto immune issues starting with Juvenile RA at age 3 effecting my left knee. I was in a hospital in New England that's no longer there. They put a cast on my leg and told my mother I'd never walk again. My parents split...we moved in with my grandparents in Florida. My grandmother, who was an RN, said hell no..took the cast off and my grandfather started sitting on the counter every night and slowly but painfully exercised my leg. Hahaha...I remember him giving me a tiny jigger of red port wine to sip and told me it would build strong blood. Started walking around age 5. RA went into remission off and on until it came back with a vengeance after the birth of my second child. Got a formal diagnosis of RA. Then started the steroids back when doctors didn't know too much for too long was not a good thing. Finally my body was covered with sores, I had a moon face, and I developed chronic uveitis and glaucoma. Then came surgery to remove tissue that was producing the constant fluid and clean up damage. After that a year of physical therapy. Things worked out pretty well after that. The left eye was another story. Steroids had done their damage. It's been years of treatment, laser surgeries, and medications. I'm now totally blind in my left eye and it's just a matter of keeping it comfortable as it slowly atrophies. There's nothing else they can do. When I can no longer take the pain, the eye has to come out.

Strange things have happened over the years but doctors have died, offices and hospitals have closed, and medical records have been destroyed to prove claims to current doctors in a different state so many years later. Example: When I was in my early 30s the skin on the left side of my body from my buttocks down to my ankle turned to elephant hide. I went to a specialist who took a biopsy. I just remember she had a heck of a time cutting out a little round piece of skin. She said it was one of two things. One was a form or cancer and the other was something I don't remember. It was the latter. I remember her telling me the condition would follow the nerve endings from where it began down my body to my foot, which it did. It was kept from spreading across my stomach by an incision which had cut the nerve endings. Over the years it actually went away and now the skin is normal but I have pain all up and down my left leg. The left side of my body is a mystery to me. They say I've got neuropathy left foot and leg and Morton's Neuroma in my left foot. My two middle toes on my left foot are becoming deformed and painful. Personally I think the "neuropathy" is more than that. I think it's damage to my nervous system. My spine and back constantly itches and I've got pinched nerve pain everywhere from my jaw to my toes. Another, so called hypochondriac claim, weather effects me profoundly. There are days when there is a drastic weather change that the nerve pain is almost unbearable. My personal feeling is that it's inflammation caused by the weather changes which puts pressure on nerves. But I'm not a doctor so what the hell do I know. I'm just an old lady who has too many issues. My spine is a mess. Degenerative this and degenerative that. One doctor said the only solution was a rod down my spine. I've been told I need total knee replacements of both knees. My neck is in the same condition as the rest of my spine.

I guess I could be considered a bad patient. I won't take a chance on surgery because I have too many areas that are damaged and I don't like the odds I'm given for improvement. I've had 3 attempts at blood transfusions in my lifetime and all three had to be stopped because I started shaking uncontrollably. They literally had to hold me down, stop the transfusions, and pile warm blankets on me because I got so cold. Instead of transfusions my hospital stay was extended while they gave intravenous saline and injections to rebuild my blood count. I'm not sure but I think they were iron shots. Those records are gone so it's only my word about that. Doctors just look at me with skepticism when I tell them....lol

So what AM I doing? Well I take hydrocodone (as little as possible) and the daily max dose of acetaminophen. And yes, I count all mgs of acetaminophen from all sources and don't go over a total 4,000 mg a day. I've discovered a cannabis cream called Kush Cream which does a great job relieving the itching up and down my spine and also help relieve the pain from the cysts behind my left knee and other pain. I did develop digestive issues which is another long story but I've found a way to keep those under control through diet and a daily dose of generic MiraLAX. I've had colonoscopies and endoscopies.

Geezzz...I've written a book here. Guess I finally took the time to vent somewhere. Yes, I'm depressed and feeling sorry for myself sometimes. I'm in a wheelchair a lot of the time, always in some degree of pain, and terribly miss things like getting out in our garden where I used to spend my summers. Uneven soft ground and thin wheelchair wheels don't mix...lol. I have to stay on a firm surface. My husband has his own medical issues so I don't want to put strain on his back dealing with my wheelchair in and out of the truck of the car so I don't go anywhere any more except to doctor's appts. I'm bored and constantly uncomfortable or in pain.

I should just delete this whole mess I just wrote but it took too long to write it so I'm clicking post.

Just wrote a reply but don't see it. Just wanted to add that I also take ClonazaPAM for anxiety and spasms I get out of the blue anywhere from my side, to my abdomen, to my esophagus...just anywhere...any time.