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I need help for intense full body pain. Can anybody help me?
A little over 20 years ago I was hit by a cluster headache that lasted 18 months. Doctors could do nothing for me. When it finally left it took most of my short term memory with it. I have been working to restore my short term memory ever since and have had some success.
The pain returned only a week later but not as intense, more of a bad migraine. The pain prevented me from being able to hold a job. after many years (maybe 8 to 10) my neurologist asked if I wanted to try botox for migraine. It took away the pain immediately and should last for 3 months at which time I could have another treatment. It only lasted 3 weeks.
I have been in terrible pain ever since. In the last couple of months it has spread to cluster headache levels of pain throughout my whole body.
A number of years ago I came across a series of lectures by Dr. Barbara Bruce of the Mayo Clinic on The Mayo Clinic Pain Management Program where she mentioned Central Sensitization. I have been trying to find a neurologist who will test me for this, but none will and just tell me to go to the Diamond Pain Clinic, which I can't afford. If I could afford them I would just go to the Mayo Clinic where they are familiar with Central Sensitization and know how to treat it.
I don't know how much longer I can survive this pain.
I NEED HELP. PLEASE SOMEBODY HELP ME.
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@migraineman
Were you told what is causing your migraine headaches and the source of your widespread pain?
Have you had recent MRIs of brain and full spine (cervical, lumbar and thoracic)?
Have you had EMGs/nerve conduction studies of your upper and lower limbs? Have you had a skin punch biopsy of thigh and ankle to test for small fiber neuropathy?
Does your neurologist do extensive bloodwork for neuropathy and other neurological markers?
Have you had EEGs done and a functional MRI of your brain?
What medications are you currently taking? Are you getting any psychological or psychiatric support for your chronic pain? Do you have anxiety and depression?
Do you have a family/friend support system and do you have any connection with others who have similar struggles as you do?
1. https://www.mayoclinic.org/diseases-conditions/migraine-headache/symptoms-causes/syc-20360201
2. https://my.clevelandclinic.org/health/diseases/5005-migraine-headaches
3. https://www.health.harvard.edu/pain/coping-with-migraines
4. https://www.health.com/types-of-migraine-headaches-8774807
5. https://migraineatwork.org/infographics_migrain/migraine-is-a-whole-body-disease/
6. https://www.verywellhealth.com/seven-types-of-fibromyalgia-pain-716138
7. https://www.ninds.nih.gov/health-information/disorders/migraine
8. https://americanmigrainefoundation.org/migraine-signs-symptoms/
9. https://www.healthline.com/health/migraine-rare-and-extreme-types-of-migraines
10. https://www.sciencedirect.com/science/article/pii/S0736467913009062
11. https://www.medicalnewstoday.com/articles/headache-nausea-dizziness-fatigue-abdominal-pain
12. https://www.migraineagain.com/migraine-pain-area/
I don't have a neurologist. The last ones I had said "What do you expect me to do?" and dismissed me telling me to go to the Diamond Pain Clinic, which I can't afford.
My first neurologist couldn't find any cause for my migraines.
I have not had recent MRIs of brain and full spine (cervical, lumbar and thoracic).
I have had an EMG (almost 20 years ago), but no skin punch biopsies.
No extensive bloodwork for neuropathy and other neurological markers.
Last EEG about 15 years ago. No functional MRI of brain.
None of the medications I have been given in the past have helped. I'm not currently on any medication.
No psychological or psychiatric support for your chronic pain.
Only support from my wife and autistic son.
Thanks for asking.
Try scrambler therapy/calmare therapy. Join the Facebook group for calmare therapy. You will see the wonders it helps so many
I don't have an answer, but I can tell you CNS sensitization is very real & one of the toughest to treat. This happened to me bc of taking the drug cipro 10 years ago. I called the dr. 4 times, first call was day 4, during the 14 days w BB warnings, but he wouldn't change the med. The Diamond Pain Clinic & Mayo seem to be where to go, so I'm thinking about just taking out a personal loan to do it. How much is your quality of life worth, you know? If you do manage to find another MD or NP who understands sympathetic pain & actually cares, please let me know. I'm actually wanting to try a Spinal Cord Stimulator for it (PO meds no longer work), but like you, nobody seems to understand or know much about it, much less be affordable. I understand what you're enduring and have great empathy for your journey. May you find someone affordable to treat you.