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.
Interested in more discussions like this? Go to the Chronic Pain Support Group.
Thanks, might try that!
Thanks. I had a hysterectomy quite a few years ago. I'm 67 and only started having migraines the last several years. We think it maybe due to neck issues and am having physio to see if we can correct it. They are very frequent at this point. I have tried many medications and use a preventative (every day) as well as acute meds when the headaches are really bad. The preventatives don't work that well, so hopefully can try something different until we find one that is more effective.
@kathyec I too was on a preventative for a while a very, very long time ago. It really did not help me. My migraines were definitely hormone related, as I think most women's migraines are. It took me a while to realize this, but then it was so obvious suddenly that I felt really stupid to not have recognized that sooner. I think my daughter's are also probably but she is not ready to accept that. Taking birth control pills exacerbate them.
JK
Hello, im Erika from Florida( kinda). I found this site hoping to connect with other Fibromyalgia, CSF leakers, MTBI survivors.
i have a saga but will try to spare you the long story, we all have long stories :-). in 2011 I had Transsphenoidal surgery to repmove macro adenomas, the tumors had breached the hypothalamus, so simple surgery turned into Brain surgery. i was in ICU for 8 days with uncontrolled Diabetes Insipidus and pain. I did not recover well and developed CSF leak near my lumbar drain site. 2 years latter this was finally reaired by Dr Schivink at Cedar Sinai in California. I still did not improve to normal and another smaller leak was suspected, after several Blood patches i was put on a med that lowered crainial pressure which allowed the leak ( wherever it was ) to heal. leak fixed itself after about four months of diamox.
So at this point i should be good to go and recover fully. But after a few months of PT i developed what i now know was fibromyalgia. Mayo in Jacksonville Dx this last December 2016.
my current symptoms are grouped into two. One i named Weezy and the other set of symptoms i named Bruce. weezy is more fibro and bruce is more brain centered from long term low cranial pressure, and fluctuations in ICP, possible ICH( intracranial hypertension).
anyways, looking forward to connect with folks.
Im going to attend the Jacksonville fibromyalgia 3 week program and hope to find others who may be going also.
thanks
Erika
My dear Erika,
You have a tale to tell. My chronic osteoarthritis is nothing compared to your problems. God bless you for your courage and strength to keep fighting to beat this. You are inspiring! I shall remember you in my prayers. Good luck and stay strong.
I completely understand. I had to wean myself from high dosages to only a few pain pills after moving from Maryland to South Carolina. Ten yrs. later im back to pain Mgmt. I got very sick last year from an infection and was post neck fusion as well.
Keep searching, try National institutes of Health, they may have Studies in your area that will help you get back in rhe system. l was an intern there and later received care from them.
I have faith you will find yourself getting help you need, keep advocating for yourself. Nothing totally makes us feel 100% but medicine makes it tolerable, you are in my prayers.
Hi Erika, welcome to Connect.
That is quite the story and I'm sure it is the super short version. We look forward to getting to know you more as you continue to take part in the community. I'd like to start by unraveling some of the short forms you used to make sure I got everything correct. CSF leak = cerebrospinal fluid leak, mTBI = mild traumatic brain injury, ICU - intensive care unit, PT = physical therapy, ICP = intracranial pressure and ICH = intracranial hypertension. (I think our resident acronym buster, @sandytoes14 would be proud of me.)
Secondly, I'd like to steer you to a few existing discussion groups where you can meet others talking fibromyalgia and brain issues:
- Fibromyalgia Pain http://mayocl.in/2hgUGcv
- Brain Tumor group http://mayocl.in/2i2TRoa
When do you start the 3-week fibromyalgia clinic at Mayo, Jacksonville?
@goodtime376, Do you know about the discussions taking place in the Bones, Joints & Muscles group about OA? You might wish to join them here:
- Osteoarthritis - what helps? http://mayocl.in/2nVJD7P
- Osteoarthritis at 32 female, http://mayocl.in/2mPCBoe
thanks for the welcome. i look forward to learning and helping here. i will definitely check out the links too, thanks.
Erika
thank you for your kind words and prayers.❤️