Connect
Chronic Pain members - Welcome, please introduce yourself
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.
Like
Helpful
HugInterested in more discussions like this? Go to the Chronic Pain Support Group.
Connect
Testing is unreliable. Many who were tested in the past received negative results only to find their symptoms progress until they do test positive! Sometimes they find that receiving antibiotics for another issue causes symptoms to resolve-a good clue in determining whether a bacterial infection (borrelia) has caused your problems. Also of note, there are a host of other bacterial infections that are Lyme sidekicks and can be present even if your Lyme test hasn't turned positive. Babesia is one of them.
Some Dr.s still prescribe narcotics for pain. Try finding one that is part of a hospital clinical staff and sees patience. It appears they may not be as reluctant to prescribe, at least, limited quantities of narcotics to help you tolerate the pain.
Hey! I am Jenn. I am from Louisiana.
I've been married for 34 yrs. We have 4 children, our 2 oldest daughters are married. We have 4 precious grandchildren. They are my heartbeat!! My grandbabies do more for me than I do for them. They give me drive and so much sunshine in my heart!!! They are MY WHY.
I have RSD/chronic Regional Pain Syndrome or CRPS in my lower left leg and foot. I am a 5yr "Warrior"
However 3yrs ago I developed foot drop unfortunately I haven't recovered from. I wear a AFO brace. Which helps tremendously.
I have had several nerve blocks in back
I also have a Spinal Cord Stimulator (SCS)
I am currently receiving injections/nerve blocks in the back of my knee. This has helped me so much with controlling my pain
I have tried countless drugs. I understand this disease is different for everyone so it isn't an easy fix!!!!
I am scheduled to do the PAIN REHAB CLINIC (PRC program) at Mayo Clinic in Jacksonville Florida in February. I am so anxious to get there and get this new life started!!!
I use to be a very vibrant and busy lady. I owned a store and a restaurant. I sat on 5 different boards for my parish. Which I am currently sitting on 2. Unfortunately I had to sell mu businesses due to this leg and the unrelenting pain. I miss working and I miss being involved in my surrounding communities.
I once was active in church , but I have fell back from that for a bit. Personal reason
My husband and I love to cook!! Go figure right. Being from Louisiana we have some amazing food. With that being said I have developed using food as my drug of choice. As crazy as it may sound I have gained 100 that's right 100#s in 5 yrs. In turn this has almost home bound me and I'm certain I have a touch of depression. My kids are great about trying to keep me active. Back in the good days I use to work out with crossfit 5 days a week and on every other day I would swim a mile. I'm doing great to get 10 maybe 12 laps in. And absolutely not even going to a gym!!!
Well that's just a tad bit about me.
I hope yall keep fighting the fight! Ilook forward to talking and making friends on this site. Godspeed friends
Jenn
-
Like -
Helpful -
Hug
2 ReactionsWow, you are a warrior! I love your positive attitude and motivation in the face of all this adversity, Jenn. And despite all that you’re going through, from just reading your story today, you are still a very vibrant woman! You’ve not lost that, m’ dear. Thank you for sharing your personal journey with pain and how you’ve been coping. You found a great, supportive group here with Connect.
Congratulations on your upcoming Pain Rehab Clinic admission in February! We have several members in the forum who have been through the sessions and it’s really left an impact on their lives…giving them control back. I know you’ll do great in this program!
One of my fellow mentors, Rachel, @rwinney has completed the program and started a discussion in this group.
https://connect.mayoclinic.org/discussion/mayo-pain-rehabilitation-program/?pg=3#comment-324354
A little bit about Rachel in her Member Spotlight of Sept 2020. October 5, 2020 she began her PRC journey. https://connect.mayoclinic.org/blog/about-connect/newsfeed-post/where-theres-a-winney-theres-a-way-meet-rwinney/
With your legs being so painful are you able to walk around very much? Can you sit use a stationary bike to get some exercise?
-
Like -
Helpful -
Hug
3 Reactions@jennmc I empathize with your having to cut down on the number of things you enjoy. I had to retire from the ministry when I was 55. I went from having an overfilled schedule to having no responsibilities aside from taking care of our new home.
I also have an scs, for small fiber peripheral polyneuropathy, with burning pain in my feet and ankles. Mine was implanted in 2017, and it was wonderful! For a year. Then the stimulator needed to be adjusted every few months for a year. Then it stopped working for me. I still have it on, and it's possible that it helps a little. I had a Dorsal root ganglion stimulator trial, and it did nothing. I'm thankful that I don't have foot drop. I just have to be careful, especially going up stairs, to lift my feet enough so I don't trip.
I've tried so many medications that I can't remember them all. Morphine sulfate contin is the only medication that's helped long term. I'm going to switch to buprenorphine soon because of the hassle of trying to get a therapeutic dose of mscontin.
Good for you, doing the laps in the pool. I've heard a lot of positive things said about water exercise. Unfortunately, it's not an option for me. Have you ever been in a pool exercise class? I'm generally a hermit by nature, but support groups have been helpful.
We will celebrate our 50th anniversary next June. We've always wanted to go on an inside passage Alaskan cruise, and we hope that Covid19 won't prevent that from happening next summer. Our daughter is a Coast Guard wife, with 2 girls, 2 and 4, and our son has a daughter in the 3rd grade. We don't get to see them often, as our son lives in Indianapolis and our daughter is in Alameda, CA. We live in central Oregon, so it's only a 12 hour drive to Alameda. At least we can do video chatting with them.
I suppose you've been to a PT, and have exercises you can do at home. My wife does a nightly stretching routine that she's found helpful. I count my yard work as my exercise routine. We live in the country on ten acres, with a lot of landscaping I've been developing for 15 years. Now I'm trying to make it lower maintenance. Fall is a busy time of the year, pruning, planting, transplanting, getting things ready for winter. The more I do in the fall, the less there is to do in the spring.
As usual, I've rambled on way too long, and I should have been asleep an hour ago.
It's good to meet you.
Blessings.
Jim
-
Like -
Helpful -
Hug
3 ReactionsHi Jenn, so sorry to hear about the massive reduction of your quality of life. You mentioned that you have a spinal cord stimulator. Can you tell us what type, when it was implanted and if it has reduced any of your pain? Thanks, Marty
-
Like -
Helpful -
Hug
1 ReactionPain has removed many of us from the public spectrum.
-
Like -
Helpful -
Hug
1 ReactionI'm Roy and have lived with constant pain in my left thigh/hip for 6 years. I've been to Mayo Clinic and had one week of MRI's, etc. testing and then I had the femoral nerve leading to my left hip/thigh area cut. It did little good and has made the top of my leg numb.
I have been to about 7 different pain doctors before and after this visit with little help. A BS spinla column stimulator was implanted and has given about 60 % relief. I am just about at the end of what to do as the pain is still with me day and night! I take both Gabapentan and Hydrocodone for pain and use the stimulator to help. I would like to hear from someone who has been to the 3 week pain management treatment in Florida as to how it works and what they experienced in terms of help with the pain, etc. Thanks for your help.
Can you give me a few details as to how it is done and what you do each day, etc. Thank you. Roy
-
Like -
Helpful -
Hug
2 Reactionspain started in hips about 4 months ago. now seems to mostly affect shoulders, and neck and radiates down lengths of arms with muscle weakness