Chronic Pain members - Welcome, please introduce yourself

Hello @sweetkaroline, I would like to add my welcome to Jim's. Here are a few discussions, and the Mental Health group, you may find worth your time to check out. Just click on the links to check out the discussions in their entirety:

- Mental Health, https://connect.mayoclinic.org/group/mental-health/tab/discussions/
- Anxiety and Depression, https://connect.mayoclinic.org/discussion/anxiety-and-depression-1/
- Morning anxiety, https://connect.mayoclinic.org/discussion/morning-anxiety/
- Has anyone used PRP or Stem Cell therapy to fix cervical discs? https://connect.mayoclinic.org/discussion/has-anyone-used-prp-or-stem-cell-therapy-to-fix-cervical-discs/
- Surgical solutions to chronic cervical/back pain, https://connect.mayoclinic.org/discussion/surgical-solutions-to-chronic-cervicalback-pain/

Sweetkaroline, if you are replying by email, I suggest regularly clicking on the VIEW & REPLY button at the bottom of your notifications so that you will be brought to the website where you can more easily read through the conversations in order. I look forward to seeing more posts from you.

@peach414144 Peachy, one very difficult problem we all share on this site is to have patience. I learned the very hard way that two things overweigh everything else. First, that our disorders are very, very tricky issues. I laugh that I have been diagnosed with over two hundred different disorders and diseases, and most of there were accurate! I have well over 200 elements in my dX work, and learn some new stuff almost every day. Just yesterday I learned that Chronic Bronchiectasis, which I was diagnosed with several years ago, is a Sign of Amyloidosis, hATTRwt and some other Amyloidoses. Then, also, I had to remember that most of the doctors we see at Mayo, although they may have practiced medicine for decades, are just advanced med students, who we must train accordingly. They are mostly looking at new stuff, at least new to them, so patience is necessary. The word "expert" is a very relative and subjective term. When the group at Phoenix told me they had no indication that I had Amy, it was simply because they did not recognize that nearly everything they looked at was a sign of Amy. They were too new at the Amy business. After all, they might see only one AL or hATTRwt patient in a lifetime of practice, and most of them could not even spell the word.

@sweetkaroline I shall try to be brief. Just this once. I have found that writing up my own Amyloidosis Dossier has been very, very helpful. Symptoms, treatments, conversations, reading notes, questions. I have posted mine at https://bit.Ly/1w7j4j8 It is free, and Dropbox is very good about guarding against viruses, etc. There are several formats of the same Amyloidosis Dossier V16-4, and other stuff as well. It might help you figure out how to write down your stuff. I stumbled around a lot until I found a pattern that was easy for me. Anyway, welcome.

Hi my name is Roz I have dealth with chronic pain for over,30 years now. It started with a schwannoma of the L 4/5nerve root. In 84. 15 surgies in ten years left me with Arachnoiditis adhesive spinal. The pain was,manageable up till I turned 60 after a fall, the pain has become unbearable again and getting doctors to understand is nearly impossible .,,my hubby and I are empty Nestor except for he granddaughtmwho we see occasionally ...she is pre med..... Always at the library. We are blessed with a grown daughter and a grandson inFlorida. I know from years of being in pain that people cannot get it. So I love groups where I can talk to those who are on the same page.

@missroz Well, you have found us, all right. We are all hurting somehow. Go ahead and let loose. We can take it. Peace to you for the new year. Karl

dear oldkarl. you are so right. we the patients must be the patient ones and teach the new doctors. i think there should be some sort of setup where the older more experienced doctors should bring the younger doctors up to par. DEAR OLDER DOCTORS; WHY ARE WE NOT PROGRESSING IN THE MEDICAL FIELD? (at least in this area? sincerely a patient.

@oldkarl @parus @peach414144 et al.

I may be one of the lucky ones who have a good doctor who knows his limits, actually listens, and refers me to the right specialist. At my last appointment, I told him that it's a big deal for me that before he walks out of the exam room, he asks if there's anything else I want to talk about. The specialists I've seen have, for the most part, been attentive and proactive. I'm afraid that when my pcp retires, I'll have a hard time finding one as good as he is.

Jim

@jimhd Jim, I also have some good doctors who treat me well and listen - it is a blessing, isn't it?

Teresa

@jimhd I agree Jim. I get inspired reading the stories about people who have contended with so much in their life.

Teresa

I am laying in bed this morning having an anxiety/panic attack and trying to not let it get out of control. My heart is racing and I feel shaky all over. I just want to curl up in the fetal position and be unconscious right now. I won't let myself do that though. I know I'm in withdrawal as I'm in the process of getting off Tramadol 50mg. I was taking it 4 times a day, got down to 2 times a day, then had a setback after a 6 hour plane flight and added 1 tablet back. Now, I'm going back to 2 a day and it's really hard. I just know I have to get off this medication. My pain now comes from the Tramadol withdrawal. I know i can do this as I've successfully gotten off Gabapentin and Baclofen already this year. I am now at 10 hours between Tramadol pills. At 12 hours it is completely out of my system. I'm not sure what to do after I'm at 12 hours between pills. I guess I'll play it by ear at that time. I've thought about taking 1/2 pill at that point and going as long as I can using 3 half pills a day. I'm not ready to go there yet as I'm still reacting to going 10 hours between pills. I wait until I'm no longer having withdrawal pains at each level down before I decide to cut back further. My next goal is 11 hours between pills.

One year ago I had a laminectomy on my L5-S1, with remaining degenerative disk disease and herniated L4 that was going to require major surgery with rods and pins to repair. I was put on my three medications, plus diazapam in November 2016 for the pain from my disk impinging on my spinal cord. I had my outpatient laminectomy surgery on December 22, 2016. I remained on the meds until I could no longer stand the side effects of the Gabapentin. My pain doctor wanted to increase the number of Gabapentin pills each day, but I was losing large amounts of memory already. I did the opposite and cut back. My doctor was not supportive of my getting off it and gave me no advice or help with it to my complete surprise. I called my pharmacist who gave me excellent advice to withdraw from the Gabapentin. I succeeded and also got off the Baclofen during the same time. My pain was better after I was off the Gabapentin, which I found interesting.

The reason I am getting off all the pain medications is because other than the usual arthritis pain, I'm pain free. I dropped out of physical therapy after 4 months of not getting better. I read about on Mayo Connect about a therapy called "Active Release Technique" (ART) that some people had used successfully for chronic back, hip, thigh, knee, ankle and foot pain. I couldn't go up steps or walk without great pain. I was suffering that pain on my right side and couldn't find any relief. My surgeon told me to try everything short of surgery to see if I could get relief as he really didn't want to do the major surgery. I researched the technique on line, and decided to find a practitioner in my area. I reseached on line again and found a Chiropractor who had multiple certifications in ART, at different levels of specialty. I asked a naturalist and masseuse I highly respected about Dr. Todd Andrews, and my friend said that he actually used Todd for his Chiropractic treatments. That did it for me, and I started getting ART therapy from Dr. Andrews. After 3 weeks of 2 treatments a week, I was nearly pain free on my right side! I made appointments for twice a month for a couple of more months, and now I have one "tweak" a month. I am without pain as far as I can tell since I'm still taking the Tramadol. I am blown away by the effectiveness of the ART treatments. It's saving me from surgery at this point. I'm also looking for a Yoga class for 2018 to keep me moving and help my joints.

I'm telling my story so people know there is hope for chronic pain. I have had my back pain and weeks spent in a wheelchair or in bed periodically for 20+ years. When I was young I just handled it nd kept going. I'm 69 years old now and it was too much to just handle in 2016. I want to travel now that I'm retired and I don't want to be defined by my illness and pain. I don't want to be an invalid. So, I was willing to do what it would take to make my back better and my pain less. It's not easy, and I understand the toll that pain takes on your/our lives. I feel like I have my life back right now.

In addition, I just started using CBD Living Water the last 2 days. We only bought one bottle of the water (2servings) to see if it worked on my arthritis pain. It really helped so I will be getting the Tincture (less expensive than the CBD infused water) to use as needed. I'm hoping it will also help my withdrawal symptoms too. It doesn't make me "high" as I don't like that about marijuana in general. I'll let you all know the effects of the CBD tincture once I've used it for awhile. I live in California where it is legal to use marijuana, and I had a Medical Marijuana prescription this year. Couldn't use it due to the Federal laws and restrictions on prescription drugs and marijuana.

I hope this informationis helpful. With love, Gailb