Chronic nerve and abdominal pain for 3 years

I'm no doctor, but this sounds fairly serious. You are far too young to have to endure this. Have you considered a university hospital that offers a team of experts to examine you? Other than that, perhaps you should try the nearest ER the next time you encounter one of your bad episodes. Keep hanging on!

Hi. I am 72 years old and have struggled with spinal pain since my early 30's. My first surgery was for a herniated disc. I have had 2 lumbar fusions and a third and last fusion for the T12-L1 space. All other surgeries were successful until the last one 5 years ago. 10 years ago, I developed extreme ( levels 8 or 9) pain while trying to keep up with my son, emptying my cellar. It required intense effort, heavy lifting and rapidly moving for a non- stop 4 hours ( ahh, to be 30 again).

I thought it was a stomach muscle strain but I did have some wrap around pain to my back. Under the middle of my rib cage, I would have painful, hunger like pain with audible growling. I made an appointment with a gastrointestinal doctor at Mayo. I had an emg study, a scope and mri. Nothing. After another frustrating year, I once again saw a gastroenterologist locally and he suggested it could be a Spiglean hernia. This was not found.
My internist did his residency at Mayo and referred me to Baylor Medical in Dallas, (he said they were as good as Mayo) to once again see a gastroenterologist. Nothing. I had my gall bladder examined later. Nothing. I tend to be a mysterious patient, with nothing ever being obvious. I asked to have exploratory surgery and it was discovered my gall bladder was highly diseased and removed. My appendix was next and it checked out OK and again I asked for surgery and again it had to be removed. ( Let me just give one more example why you should listen to your body, when the Drs. can't find anything. I had elbow pain last December, an x-ray showed bursitis and the orthopedist injected my elbow with steroids. I thought it was more serious but he said everything would be fine. The pain never stopped. Four months later, I saw the orthopedist who had performed a complex shoulder surgery 5 years previously and he ordered a mri of both elbows at my request. I just had surgery to reattach my tricep tendon with only 10% left and it could have ruptured with any trauma. My other elbow has only 20% attached and both were old injuries. It will be repaired as soon as possible. ) I have other examples but I will not bore you any further. Please be pro active. As my Internist once told me, "even hypochondriacs get sick sometimes ".
Finally a neurosurgeon performed a fusion of L1-T12. It didn't work. I have the max Buprenorphine patch, 200mg pregabilin and get some relief, pain levels 4-8. I have always used a tens unit and ice packs for some temporary help. I have gotten good results from spinal Ablation every 6 months, the minimum period my insurance allows. My pain levels have been 2-4 since. I could live with that pretty easily. The problem is, it isn't effective for 6 weeks following the ablation and begins giving less relief the last 4-6 weeks. My last ablation didn't work for some reason. I am currently waiting to have a Medtronic spinal cord stimulator implanted August 18. It should have been June 9 but had to be delayed for my urgent elbow surgery. I hope I have given you alternatives to seeking relief. This is none of my business, but I would do whatever is necessary for your insurance choice, if you think that changing might be helpful to your situation. I have great respect for your tenacity and sense of responsibility to your family. Please keep fighting.

Have been to the ER multiple times and no answers. I am hoping in the fall to switch health insurance so that I can go to UCSF since they are a top neurology hospital. I have also put in a request at the Mayo Clinic hoping they take Kaiser insurance but I know the wait time is long. I’ll keep fighting but it’s tough. Thank you

By God’s grace, may you find some answers.

Hi,
I am sorry to hear you are going through this.

Have you being given a diagnosis of what the issue is?
May I ask why did you have Botox injections, was it related to your health condition?
Do you do any gentle stretches to help relax your muscles, have you been advised to do any movement exercises?

Nerve block injections every three months? I live in England, UK, I was only allowed it once a year in my spine due to the side effects. I have lumbarsacral and cervical radiculopathy and fibromyalgia, from a car crash 13 years ago I am self employed part time and am 58, it is challenging and painful with all the symptoms I have to manage, but I do breathe work, Qi Gong, Yin yoga, walking and meditation.

It sounds serious, I would advice you get a second opinion, as you should have a diagnosis of what is causing you all the symptoms you are experiencing. I would be concerned if the Chiropractor and massage therapists would not even attempt to help you. If you muscles are so contracted you need to know why this has happened?

I hope you find some answers.

I haven’t been given any diagnosis. I have been through a bunch of tests MRI cat scan colonoscopy and clean results. My hope is in the fall I can switch from Kaiser and go to UCSF care system since they r the #2 neurology hospital in the country and get some answers. Kaiser is great for normal care but these mystery illnesses they r not so good. At this point they r o ly trying to manage the pain with nerve block injections in my thoracic spine and Botox to loosen the muscles in the same area every 3 months. Right now I am thinking of making an appointment at UCSF or Mayo Clinic just to review my records. They charge about $1000 to review and one appointment in person. So hopefully that will maybe get me some info. Gotta keep fighting but when I’m in an episode like right now it’s horrible. Sharp pain in my back and front left rib cage and the worst side cramp from ribs to hip joint. My digestion gets thrown way off The muscles r so cramped it’s hard to urinate or pass anything. My whole body feels toxic like I have the flu Weakness and crappy feeling with no fever. I sweat a lot while I sleep It’s like the nerve has no sensation. It’s is so mentally taxing but I gotta keep fighting. Thank u

When you go or a review, go prepared with any questions you want to ask written down on a pad, and if you don't undersatnd anything get them to repeat and put in the report they will send out to you. You shouldn't have to fight for healthcare it is a human right!

Have they identified it is a musculoskeletal/ nerve issue which is impacting your body?
Did they investigate if it could be rib subluxation/costovertebral joint dysfunction, intercostal neuralgia, thoracic radiculopathy, muscle strain/spasm (intercostal, oblique, erector spinae), myofascial pain syndrome? I'm not medically trained I studied sports therapy degree over a decade ago.

I'm just trying to get my head around 3 years with no diagnosis, it must be really frustrating! I could understand in 2013 it took 3 years for a diagnosis for me, but medicine and science has come along way since then.

After 3 years your immune system has become over sensitised and that could be the cause of the pain you are still experiencing. That's what happened to me after my car crash, it's been 13 years and because of my immune system being over sensitised, I wake up and go to sleep every day with chronic pain.

But I hear you, I have had to advocate for myself, I've read up on my conditions lumbarsacral and cervical radiculopathy, and always question the GP and my consultant as they have advised treatments that were not benefical to me, as I had read up to date research on what they were offering me.

In England our health care is free, I pay for acupuncture, massage and cupping treatments and have had acupuncture on the NHS and am waiting for some more treatments. Also, I have had two lots of hydro therapy which is physio in warm water and it really helped, felt sore afterwards but generally my body felt better. I don't know how I would cope having to pay for all of my healthcare, but my son has started a new job and is going to put me onto his work healthcare insurance which he will pay for.

Have you tried Epsom salts bath? Cheap and cheerful £4 a bag and pour in a cup into my bath with some lavendar essential oil, great anti flammatory and muscle relaxant. Magnesium oil massaged into you muscles as long as you don'e have a fish allergy.

Also, I don't know how you feel about guided meditation (if you are using it already) to help with relaxation and breathing techniques, that's what gets me through my worst pain flare up and muscle spasms and gentle isometric stretches
https://www.nhsaaa.net/musculoskeletal-msk-service-patient-portal/shoulder-msk-patient-portal/shoulder-exercises-weak-and-painful-msk-patient-portal/
Take care

$1000?! That sounds like a ripoff. And, I am sure that it is not covered by insurance. I thought Mayo was concerned with helping people in pain not adding to their pain by deleting their bank account. Correct me if I am in error here.

The next time one of these episodes started, I'd call EMS and go to the hospital and maybe they can find it while it's actively going on.

This is out of left field but then so are your symptoms.....have you considered testing for heavy metal toxicity?