Tailbone pain and burning buttocks for 2 yrs plus other symptoms
Desperate for help. Over 2 years of being shuffled around the Canadian health system and it just seems everyone has finished their testing on me and walked away. Im still in pain with no help. I have been trying for 2 years to figure it out on my own. If I could just narrow it down to nerves or whatever.. then I could try things to help. But its got contradictory symptoms.
- started on a vacation. 4 hour plane ride on a hard seat. Got to the resort and noticed tailbone pain. Couldn't sit on hard seats or barely soft seats. 2 days later I had what felt like a heart attack. Ambulance.. hospital.. nitro.. beta blockers. They allowed me to go home with an on board dr and a fit to fly paper.
- home.. ekg, stress tests with and without dye, and many other things... heart is perfect. No heart attack ever happened nor is there anything wrong with my heart. I do continue to get odd heart pain more often than id like but just assume it is muscles. I actually thought I was having a heart attack 2 more times since and Ambulance to hospital... cleared.. nothing wrong. This whole situation mag have nothing to do with the tailbone pain but I mention it because the first incident followed the first tailbone pain. Who knows.
- tailbone persisted daily. Deep in the tailbone. Radiating burning across buttocks. Pins and needles like hornets stinging happened very often for dome time. That spread across my whole body sometimes. It feels like the tailbone pain now wraps around my very low abdomen when it flares every few days. The tailbone and burning buttocks is always there. But it has good days and bad days. Bad days have taken me by Ambulance only to be sent home with no help once it settles.
- I get nausea very often. Almost daily.
- other symptoms are hot flashes and facial red patches for no reason. Bouts of frequent normal bowel movements. Bouts of frequent urination. Bouts of severe abdominal pain.
- other health conditions.. Severe COPD from alpha one antitrypsin deficiency. High blood pressure but under meds. High cholesterol but under meds.
- meds taken. Copd puffers- symbicort, salbutamol, spireva. Perindopril and ezetimibe. Gabapentin supposedly for this pain but it still hits me hard in flares. I take about 2400mg of Gabapentin a day. Amitriptyline I take once or twice a day for anxiety that I think I have to lack of being able to breathe well.
I should be living my life trying to take care of my lungs and body strength given my Alpha one diagnoses. But I find it hard to keep going. This pain has taken over my life and consumed me in a way that I cant take care of the copd. Im turning 65 and desperately need to turn this around before it completely takes me under... which is getting closer.
- every blood test and lab test known to mankind.. all decently ok.
- ive been checked for bone cancer, bone scan. Prostate is good. MRI of spine and sacrum. Shows minor narrowing. Apparently not concerning. Treated for prostatitis without any clear diagnosis. Antibiotics. CT scans and xrays. Apparently all clear.
- referral to neurology was declined.
- pain clinic.. waited a year to get in then they said the province was discontinuing its nerve blocks there so id have to get a new referral to a different pain clinic. However they were able to try one nerve block that I feel was put in the wrong place and it didn't help.
- referral to spine clinic... finally a month ago. They take 18 months to get into.
- tried acupuncture, chiropractic, tens machine, sitz bath sometimes helps a bit. Tried spinal decompression.. no help.
Running out of everything. Depression is getting deep set. I can barely leave the house to go get a tea and get fresh air. Its too much. I cant get anyone to help me. I went to a walk in clinic once and my Dr found out and discontinued my care calling it a lack of trust. She wasn't helping anyway. I've been getting more help from walk in clinics.
Can anybody give their opinion on if I should continue researching nerve solutions or muscles or something else. Im hoping a fresh set of eyes will think of something.
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