Chronic Pain members - Welcome, please introduce yourself

Hello @lightbender,

I would like to add my welcome to Jim and Teresa's. I would also like to share this link with you, https://connect.mayoclinic.org/discussion/any-adhesive-arachnoiditis-members-here/. If you click on this link you will be taken to a discussion with other members with adhesive arachnoiditis. I think the other members would really appreciate Connecting with someone who understands their situation. I look forward to seeing more posts from you lightbender.

I have chronic daily migraine headaches, some days worse than others. I get out when I can, but miss many activities due to the pain. I have tried so many different treatments, including alternative treatments. I see a headache specialist, and we keep searching for an answer. Is there a separate group for headaches? I am new to this site.

@ocogram I also have headaches almost every day, right behind the eyes and around the crown ring of my head. But I am figuring out what is causing them. I have ocular amyloidosis, systemic, primary, hereditary. The amyloid fibrils have invaded the corneas, and make my vision screwy. I spend a lot of time squinting or trying to overcome the double vision patterns in each eye. The vision looks like the macular skin on my arms, little plowed fields, with furrows going two ways. I am hoping that the new meds coming in a few months will relieve the pain. The meds are in pipeline now, and should go to the FDA by spring sometime.

Hello, just found the site while looking for others who are living with broken Harrington rods in there back. After looking I decided to join up. I fractured my l3 l4 in an auto accident in 2001. I had many other injuries that I have recovered from quite well. My back went 10 years without any major problems after my L5 thru S1 fusion. However now it appears I have fractured the rods in 3 places and have screws that are no longer attached. I started experiencing pain about 6 or 7 years ago, it has progressed to needing to take morophine every few hours now to cope. I still work full time 50+ hours a week. I found out the rods were fractured March of last year when my primary asked for a set of xrays after I started complaining my back was hurting more and more and I felt I needed more medication to help. That's when we found the rods were fractured in multiple places. I was told to stop working immediately, no lifting, no bending, twisting, reaching basically do nothing. I being stubborn have kept working and going as normal since. I feel now that my back is becoming worse every day and I don't know how much longer I will be able to get out of bed in the morning. I'm trying to get insurance currently so I can possibly get my rods removed, however I'm beyond scared to lose my job and not an able to support my wife and daughter while I recover, if it can be corrected. I'd love to know how other have delt with similar problems and how it has worked out for them. Every day seems to be harder and harder to get up and get going. I'm 36 and feel like I'm 86.

Hi @frankjr,

Welcome to Connect and thank you for introducing yourself to the members of the Chronic Pain group. While I don't have back issues, I can relate to having chronic joint issues at a young age and being stubborn about limitations. I have a rare genetic bleeding disorder where my blood doesn't clot on its own, which led to a lot of joint damage. I am 31, and I've had my ankle fused, right knee replaced, and have end-stage arthritis in my right ankle. Like I said, I do not know what back issues are like, but I do know what it's like to be young with chronic issues that force you to limit yourself.

There are a few discussions I think you may want to check out regarding Harrington Rods. I recommend clicking on the links below and reading through the discussions about harrington rods and jumping in where you feel comfortable:

- Harrington rod and lower back pain, https://connect.mayoclinic.org/discussion/harrington-rod-and-lower-back-pain/
- Scoliosis surgery: Harrington rod, https://connect.mayoclinic.org/discussion/i-had-surgery-for-scoliosis-in-1973-which-included-harrington-rod-placement/

@ocogram,

Thank you for introducing yourself to the Chronic Pain group. You asked if there is a specific group for headaches. While there is not a specific group for headaches, there are some specific discussions for headaches. If you click on the following links, you will be brought to a discussion about headaches where you can meet other members experiencing things similar to yourself. You can find them here:

- Chronic severe nocturnal headaches, https://connect.mayoclinic.org/discussion/chronic-severe-nocturnal-hypnic-headaches/
- New daily Persistent Headaches, https://connect.mayoclinic.org/discussion/new-daily-persistent-headache/

I can't answer your question about a group for headaches civically because I myself am new to this website but I also have daily migraines and have been looking for solutions for the pain and I found something to be very helpful on YouTube. I was on YouTube a few nights ago and typed in guided meditation for pain and accidentally found a self hypnosis video for pain management and it worked. https://youtu.be/s_SMIouQGps

, and not sure how exactly it works because I was asleep within 10 minutes of hitting play... LOL but I'm going to listen to it again tonight

Hello everyone. I just found this discussion group and look forward to following. My name is Naida and I am 71 years old living in Washington State. Have been retired for about 3 years and enjoying it fully. My hobbies are quilting, (only by machine) and reading. Love to listen to recorded books about history, suspense, drama and science fiction.
I have suffered from fibromyalgia for many years, but seems like the flairs are more frequent these days. Also have degenerative arthritis and siatica pain. Some days are good and some days are just for sleeping. I also have undiaginosed caused issue with shaking, balance and memory issues.
Have been looking for a group who is positive and upbeat while dealing with issues like mine. So many groups only want to complain and moan about all their pains and woe is me. People like that just drag me down while I daily struggle to not fall into the pit of depression myself. Thanks for this place to share with others with positive attitudes.

Hello @naidab, welcome to Mayo Connect! We are glad you found us. Connect is a great place to ask questions and learn what other Connect members with similar health concerns are doing for treatment. If you don't mind my asking, have you discussed your other new symptoms with your doctor? Also, are you taking any medications for your pain?

I am tagging a few other Connect members who have talked about fibromyalgia to see if they can offer any suggestions. @sandytoes14, and @kdubois, do you have any suggestions for @naidab?

You might like to read the following discussion started by Kelly (@kdubois):

Chronic Pain and Fibromyalgia - alternatives to medications?
https://connect.mayoclinic.org/discussion/chronic-pain-and-fibromyalgia-alternatives-to-medications/bookmark/?ajax_hook=action&_wpnonce=d9d320272d
John