Chronic Pain members - Welcome, please introduce yourself

Hi. My name is Jolene, I'm almost 65, and have had Tourettes since the age of 10. I was recently diagnosed with Tardive Dyskenesia due to 45 years of Tourette meds, a necessary evil. My tics suddenly got worse, and worse, and worse. Then the daily headaches began - different areas of the head affected, different kinds of pain, different degrees of pain - always constant, always right there. The Doctors are unsure as to whether the tics and headaches are related. I just learned today on here of a disease called New Daily Persistent Headaches or NDPH. I have numerous serious health conditions and take a lot of meds. I was given 30 Vicodin with the Dr's warning to "make it last, that's all I'm giving you." I hope to find something better than Tylenol and cbd cream soon, especially now that my headaches might have a name. Thank you for welcoming me and I feel blessed to be here.

Oh KJ. I just finished my comment, then saw yours. I'm thinking you might be an optimist by nature? I saw myself in your story and thought something or someone has held him up. Something gets you out of bed, then later out of your chair. I know I'm thankful.

Hi, Im a 67 year old female suffering from extreme chronic pain that began at age 48. Almost 20 years in & my life being stollen by what was diagnosed as extremely rare case of fibro. Although have all symptoms of MS even lesions on my brain, optic neuritis, periphreal neuropathy, had emergency gallbladder surgery that I live in so much pain didnt realize I had it until I threw up bile went to er and they took tests & told me my gallbladder was gangrenous & in 24 hours I would have died from sepsis if I hadn't gone to er when I did. Surgeon could not understand how I did not know how ill I was due to fact this was over a long time period to e gangrenous as well as would have caused unbarable pain! He was perplexed literally! At 66 I had a heart attack, I have gastrointestinal issues, osteopenia, ulcers, colitis, hernia, just found out I have cataracts on n on ... I come from a family of seven children. I am the only one that has all these health issues out of the long list I do, the others do not have any !? Drs because of drug addicted kids as you all know have been threatened by the cdc & dea to stop kids from overdosing & with that drs stopped treating chronic pain med patients! Since then I have been suffering beyond imagination, I have no ability to live or semblance of normal life. At 48 I went from cant stop me to almost 20 years of If I want to shower I have to be afraid what pain my body will cause me for any & all physical movements. I am a prisoner in my own body. Ive seen a multitude of every specialist & beyond testing of every sort. I have grand babies now that I hardly see my illness & suffering has grown worse over time. I want to have a full genome sequencing , to check for rare diseases because my body is killing me organ by organ. I need help from Drs I know I cannot afford but I also believe those Drs would correctly diagnose me as well as most probably save my life so I can live whats left of it now at soon to be 68. I read about a rare disease that made my jaw drop because it was as if it was describing me & my ill health in every way. Hence wanting the full genome testing. Its called, Neurofibromitosis it has three types the name of the one I think may be my actual health issue is Schwannomattosis . When I read about it it was as if I was describing my issues 100%. Its a very rare disease of genetic defect cause & inheritance. It was a fluke thing that I even stumbled upon it. Anyone know of a reputable, Full genome sequencing lab in south Pa.?

Hello everyone - just stopping by with a dose of uplift and positivity. If you are posting in this discussion, chances are you are a survivor. The struggle is real, but no quitters here.

I can’t scream agreement louder. Never, ever in my wildest dreams did I imagine I personally would be judged a “drug addict” or “drug-seeker” at 61 years of age!
Tell me how I can contribute to Turning the Lights ON, I am all in!

Unfortunately most of us are judged that way. I’ve always considered it the invisible disability. When I first joined this forum, I brought that up as our disability that rarely gets attention. No walks, no runs for the cause,not enough research, etc..etc…Yes Chronic pain can suck the life out of you. Is there a honest answer? It all depends on who you ask. Surgeons still continue their surgeries knowing what life holds for that patient following the surgery. Most of us finally learn to just ignore it as it becomes a norm. Relationships are affected, friendships disappear. We become a shell of what we used to be. Can you tell I worked in the yard all day yesterday? Yes my body is screaming this morning but I know I still have 20 pieces of sod to lay as my neighbors 3 large dogs dug under my fence knowing my grass was greener lol. My 80# Golden Retriever was there to cheer them on! But I try and look at the bright side. I notice the smaller things which are beautiful and take my time to enjoy those rare moments. I wouldn’t have noticed them before I was injured. I put on my fake smile and greet strangers who will never know how bad I’m really feeling. But what can I do about it? Not a thing but put one foot in front of the other and keep going. Last month my wife and I went to the funeral home and had all our final wishes taken care of. I actually felt comfort as I know one day this pain will finally end. Until then, it’s one foot in front of the other. I’ve lost all hope in our medical system and put 100% of my faith in God. Wishing everyone here a pain free day and a great weekend……David

I am a 77 year old male who, on most days, feels 87 because of peripheral neuropathy and lower back surgery. I’m retired from 27 years in banking and 20 years in the non-profit world and a 4 year stint in the US Air Force in between. Until recently, I’ve e been a touring motorcyclist since leaving the Air Force having traveled in all of the lower 48 states with my bride of 40 years. My surgeries and neuropathy forced me to hang up my motorcycle keys and return to the madness of four wheels.

We are a blended family with my wife and I each bringing two children to our union. We have eight grandchildren and four great grandchildren.

We live in Sandy Springs Georgia, a suburb of Atlanta, where my wife and I were both born. I look forward to learning from my participation in this group and, perhaps, sharing what I have learned about living with chronic pain with other members here.

Hello @mayodoug, Welcome to Connect. I don't have chronic pain but do have some unrelenting numbness and tingling that helps me relate to your being 77 and feeling like 87 most days. I'm closing in on 80. I love motorcycles but never graduated to the big guys. I had a friend that raced cycles who convinced me to buy a dirt bike which I loved but had to give it up in my 50s.

While we wait for others to welcome you to group, I thought I would share links to other discussions in the Chronic Pain and Neuropathy Support Groups that you might find helpful:
--- Chronic Pain Support Group: https://connect.mayoclinic.org/group/pain/
--- Neuropathy Support Group: https://connect.mayoclinic.org/group/neuropathy/

Do you mind sharing which of your chronic pain symptoms gives you the most problems?

Great point. I actually think I'm having more good days than bad now. I know probably most folks here don't experience that. The worst pain I have comes from a car accident 60 years ago, so it's been a while. My poor wife had to take a break from her breast cancer surgeries to have back surgery the other day. Bt I even have it together enough to support her pretty well. I'm sure thankful for that!

Amazing to hear, Tim, thanks for sharing. Maybe it's a little luck with having good days, mixed with positive attitude and mindset. There is generally no one component that makes things "good", but never giving up helps and giving of ourselves helps - like you are doing for your wife. Keep up the great work! Best of luck to your wife with her surgeries.