I could use some advice re: my situation:
I'm 26 years old, Canadian, male, in otherwise good health. Tall and skinny: 6'6, 175lb.
In Feb 2010, after a day of work (persistent but not intense physical labour) I began experiencing a very significant burning/stinging sensation on my inner thighs (from my pelvis to my knees); a pain that was most uncomfortable when my thighs touched/rubbed against each other. For a few years before this incident I had experienced the same kind of pain but on a much less intense level every once in a while when I worked-out at home (pushups, situps, pullups, etc.) and walked back-and-forth between sets: I remember keeping my legs separated while pacing back-and-forth to reduce the pain. The pain ALWAYS went away an hour or two after working out. But this time, in Feb 2010, the pain only got worse with time and by the third day of working it was so intense that I had to switch jobs and do something less physically intense. In the following months the stinging/burning sensation spread to other parts of my body, including my arms (insides of arms and underarms), my lower back, my stomach, and all throughout my genital region. I still have this pain -- what I believe is most appropriately termed 'allodynia' -- in all these parts today. In addition, I began experiencing endless rectal discomfort -- a combination of burning/stinging and 'pressure' -- some time around spring 2011. The pain is typically worse after sitting for long periods of time and after bowel movements. The pain is usually around the 12 o'clock position of my rectum, and I experience a similar discomfort in the skin of the perineum immediately around that area. At present, I am still experiencing these same kinds of pain.
For about a year before this pain started I was working-out at the gym doing heavy weight-lifting trying to put on muscle; I weighed 200lb at the time.
I've had lower back pain for as long as I can remember, i.e., since I had my growth spurt in high-school.
I am incredibly sensitive to changes in temperature. I shiver very intensely when I get cold. And my allodynia gets much worse when my body temperature rises. My body HATES the heat.
I've seen numerous neurologists, dermatologists, public health nurses, and for the past 8 months or so, a pelvic health specialist/physiotherapist.
Blood-work for STIs/STDs, vitamin B levels, thyroid, hepatitis, etc. have all come back normal. My liver results were 'off' a few times but nothing that alarmed my doctors. I've had MRIs of my brain, neck, and spine (although an MRI of the lowest part of my spine has not been done): there are no signs of Fibro, MS, etc. My spine is 'curved' but this is 'normal' says Dr. Peng (at Mount Sinai) given how tall I am. An x-ray from many years ago and the very recent diagnosis by an osteopath have both confirmed that I have scoliosis of the spine (although the osteopath says it 'goes away' when I sit (vs. when I stand)). An EKG of my heart produced totally normal results, as did an ultrasound of my bladder.
My physiotherapist has treated my internally and externally for the last 8 months and says, after a lot of work at her clinic and on my own at home, that my tissues/muscles are nearly back to normal and seem quite healthy. She believes my nervous system is certainly sensitized, which she believes explains the allodynia throughout most of my body. About 4 and 5 years ago, respectively, I had two major lung surgeries where my lungs were 'fused' to my ribcage so as to prevent further lung collapses as I had experienced a number of spontaneous and extremely painful lung collapses in the past. My lungs have been fine since the surgeries. But my physiotherapist believes the surgery likely served to sensitize my nervous system (the left side of my chest was essentially 'frozen' to the touch for a solid year after surgery). The osteopath is interested in seeing exactly what the surgeries entailed as he found that my chest/lungs/etc. are very tight and restricted in movement. I've seen him only once but will be seeing him another 4 or 5 times every two weeks henceforth.
I've tried Lyrica, Amitriptyline, Cymbalta, Percocet, Oxycontin, Tylenol 3s, and marijuana for pain relief - none of these medications have worked (and re: the anti-depressants/anti-convulsants, I was on very high doses for months so I doubt I hadn't taken 'enough' of them for them to work). 5% Lidocaine in emollient cream helps tremendously, although temporarily, to reduce my rectal pain; but it does nothing for my allodynia.
I'm now nearly 6 weeks into a fully vegan diet. I also take the following supplements according to their 'nerve pain' or 'megadose' recommended dosages: calcium, magnesium, vitamin B complex, niacin, methyl B12, raw organic honey, aloe vera juice, pharmaceutical grade fish oil, alpha lipoic acid, inositol powder, 5-HTP, vitamin D, vitamin C, and GABA. I'll start taking Benfotiamine (highly absorbent B1) as soon as the product arrives (online order).
I'm a patient of Dr. Allan Gordon at Mount Sinai's Wasser Pain Clinic. I've been seen by the anesthesiologist, Dr. Peng, and he feels a nerve block is unnecessary. He feels that I likely hurt a muscle or ligament around the groin (he gave it a specific name, can't recall it) while working-out which is to blame for my issues. I don't see how that explanation accounts for my nearly wide-spread and sudden onset of allodynia. Neither Gordon or Peng believes I have PNE, although Gordon concedes I may have PN (as does my physiotherapist).
I'm set to see Dr. Gordon again in early April as my physiotherapist has requested that I be sent for an MRV of my pelvis: she believes I may have a case of varicose veins in my pelvis.
My questions are these:
1. Considering that I still feel that I haven't found the cause of my pain, which medical tests should I insist that Dr. Gordon schedule me for? I don't care how many days I have to miss from work, how far I have to travel for the tests, how much blood I have to give, etc. I want to be absolutely sure that I've been tested for as many conditions/diseases as possible. Which tests should I have done next?
2. Are there any medications or combinations of medications that I should try re: reducing/eliminating my allodynia? Is it worth trying, for example, Cymbalta and Lyrica together? What about something like Toramax? Ketamine? Anything???
Honestly, I'm severely depressed these days. I'm not willing to 'accept' that this will be my life. I'm tired of all the 'positive thinking' junk. I've changed nearly every aspect of my lifestyle (diet, exercise, medications, etc.) but I'm still in pain each day. I just want to live my life as I see EVERY other person around me doing: doing whatever they want whenever they want without worrying about being restricted by chronic pain.
Any advice would be tremendously appreciated.
THANK YOU!
