Hello Lari, I am so sorry to hear about your pain. What is "tbis?" No matter what causes it friends don't always understand our pain and we don't want to be a burden. I can't take my grandchildren 100 miles up the highway to the butterfly exhibit because sitting in the car can be unbearable. Although my family is kind there are times I feel they don't believe me. I have neuropathy which is the result of Thoracic Outlet Syndrome which went untreated for years. Fortunately my husband has stuck with me "for better or worse, and in sickness and in health." I love him and he loves me and this is what gets us through the days. Have a heart to heart talk with your husband. If you can get him on your side things will be much better.
Additionally, if you have a good pain doctor he/she understands that fibromyalgia is the real thing. Nerve and muscle pain can take away your life. Good luck. I am sending positive thoughts your way!

Hello @larilea2006, and welcome to Connect. It sounds like you are dealing with some new diagnoses and are struggling with the new life adjustments. Thank you for taking the time to tell other members of Connect what you are experiencing.

You may want to read through and join the active discussion taking place on Connect called "Fibromyalgia Pain." You can find it here, https://connect.mayoclinic.org/discussion/fibromyalgia-pain-28e002/. Here you will meet other members who experience frustrations and symptoms very similar to yourself.

Hi, Lari. Along with others, I empathize with you on various levels. Many people don't understand what they've never experienced, such as chronic pain. I frequently hear from my wife comments about how she doesn't like me taking medications, even though she also deals with her own pain. Nor do people understand the effects pain has on our mental health. I've been treated for major depression and a couple of other mental issues for 13+ years, and I've heard some pretty inappropriate comments from people. I've been seeing a pain specialist, along with my primary doctor (and others), both of whom understand and take what I say seriously. They have worked for a few years, trying to find relief for me from peripheral neuropathy. It really helps to have doctors who listen and are proactive in their treatment, though nothing has yet worked to stop the burning pain. I asked the pain specialist about medical marijuana, and he was quite supportive of me trying it, though his group of doctors has a policy of not prescribing it - same with my primary care doctor. Seeing a prescribing doctor costs $175, and a medical card is $200, both of which are annual costs, and marijuana is far from cheap, so I'm still weighing the cost/benefit because I live on a not very large Social Security check. In the meantime, I purchased some at a local legal distributor (it's legal here in Oregon), and it's the first thing that has touched the pain. Recreational edible use is pretty low dose, so the relief is quite temporary. I've been using Lidocaine cream, which is incredibly expensive without insurance, and it numbs my feet so I can go to sleep. I think that in the fibro group that Justin referred you to, members will offer numerous suggestions of things that have helped them. I pray you find relief soon, and that you'll be able to get your husband on your side. That can make a huge difference. Sometimes, just knowing you have someone's support, even if they don't understand, can lower our stress level, which can have an effect on our symptoms.

Because of pain for many, many years, from spine, and fibromyalgia, etc. I finally moved into a continuing care facility where I am in Independent Living. One's meals, housekeeping, and social life are right here, with medical help.  Just a suggestion.....   @ladyjane85

You are so right!  I'm lucky to be able to live on 2nd floor of our monastery where all those services are provided and chapel is just down the hall.  I do realize how blessed I am, part of the hundredfold I think.  Thank you for taking time to answer me.  meggie

If it works I do hope you find a way it get an on-going supply at a reasonable cost.  It's not legal here in Idaho...God bless all our very conservative voters.  Thank you so much for taking time to write. meggie

Hi Lari ,
I'm sorry to hear of your troubles and can certainly relate.I found this website to be be very helpful(if not easy)-
http://treatcfsfm.org/
Experimentation with diet,exercise ,sleep,massage as well as medication can be very helpful-having a chronic disease is never easy.The social aspect can be one of the worst problems we face.Hang in there and try to find something to laugh about-movies jokes whatever you find amusing.Also,(although I haven't quite fiquired it out yet)try to learn to advocate for yourself to your family,friends and Doctors.If you haven't seen it yet the spoons theory can be a good starting point-
https://butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory/

Hello Meggie, did you send this message by replying via email? When you reply by email the message still goes to the active discussion on Mayo Clinic Connect. However, the best way to know exactly where your reply is going when reading messages in an email is to click on the blue "VIEW & REPLY" button at the bottom of the Connect email. When you click on this button, you will go directly to the discussion on Connect so that you can read all of posts and know exactly who you are responding to.

If you have any other questions you can personal message me by clicking on my name and then in my profile clicking on the blue envelope system. By doing this, you will be sending me a private message between just you and I.

It helps me when people say to whom they're responding, too.

Yes! I was just going to recommend this! My daughter got me a spoon ring for me after she read. Really explains us and reminds us.