Chronic Pain members - Welcome, please introduce yourself

Hi Everyone. Im Kitty and I’m new here. Searching for answers and support! I was diagnosed with Degenerative Disc Disease. I had the Anterior Cervical Disection and Fusion. I have been in constant pain for over a year with Occipital Neuralgia. So far nothing works well

Have you tried one of the diagnostic clinics such as Mayo, Cleveland Clinic or even one in Houston?

Hi @kitty70 -- I can't solve your issue, but I can tell you I had occipital neuralgia for two years non-stop about 15 years ago. It was intense. I went to see a neurologist because I was beginning to think I had a brain tumor. He told me it was occipital neuralgia and that that typically stems from neck issues. I did have some neck issues so it made sense. The only good news I can share with you is it suddenly went away at some point. It was so long ago and I've had so many disorders that I don't remember any specifics about what I may have done differently. Every now and then I have a brief flare up for a day or two, but that is rare even though I still have neck issues. I hope yours goes away too!!! There is hope!

Hi, no I have not. I recently, found out about the genome sequencing by certain mayo clinics, however I would have to travel and that all, would be costly in my position. I was hoping there was possibly one that I could either send my blood or saliva to, I do not know? I am pretty much at this point , without adequate pain meds & all my so many health issues ....live in unbearable chronic pain to degree pain is forcing me to be in bed because movement is impossible creating pain to worsen & it is pure torture. When it starts getting worse the pinky side palm of my hands turn dark pink.

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.?

Hi @cinderali -- It sounds like you're really suffering. My heart goes out to you.

When my son and I had genetic testing for a couple rare neuro disorders, a local neurologist ordered the tests and they were sent off to a specialty lab in another state that did the test. So the lab doesn't have to be local. In one case, the doctor had the lab contact me, they sent me a kit with a swab and I sent it back to them. Do you have a local neurologist that could order the appropriate test for neurofibromitosis or any other suspected disorder? The insurance company will likely only cover it with a doctor's prescription. If paying out of pocket, your doctor may be able to tell you which companies are reputable and will cover everything you're looking for. My son and I also had testing for cancer mutations, drug enzymes, and cardio mutations, but the testing "Color Genomics" offered did not include the neuro tests we specifically had previously. The neuro tests were pricey when we had them and only one lab in the US that performed them at that time. Ambry Genetics is the lab my oncologist used for my genetic cancer testing, but I see on their website ambrygen.com that they also test for neurodevelopmental disorders and rare diseases. Athena Diagnostics was the company for a neuro genetic test my son had 20 years ago. Looks like they are still in business. I hope this is helpful. Hoping the best for you.

Hello,
I cannot express how happy I was to find these support groups and to realize there is a good place to share. Thank you for being there for everyone.

I lived overseas in Eastern Europe for 21 years where I taught at an American university. Since COVID helped encourage me to come back to the US, I have come to realize how much I need peer and professional support. I am afflicted w severe osteoarthritis and have a lot of metal in my knees and in my spine. I have not been lucky getting the pain under control despite using a well-respected local pain clinic and having regular and varied treatments, blocks and steroids.
I just began my retirement but I still teach on line now and it is what “saves” me. As I age (now 72), I realize how vulnerable age makes us feel and how we get dismissed with “old person” statements. If another doctor says to me “You know you are at that age” and pats my hand, I will jump across the desk at him (and yes, mainly male docs say this).

Anyway, I look forward to getting to know some of you soon.
Lucia

Hi, Thank you so very much. I hope you & your son are well. I have a neurologist but hes almost 2 hours from me & very booked so Im waiting to see him in July . Do you know if that test was called a full panel genome sequencing? Hope it all worked out well for you both. Thank you for giving me the info. Its greatly appreciated! Will try to contact that lab as well as discuss it with my neurologist. God Bless. Best regards.