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Chronic Pain Not Diagnosed

Allan51AAllan51 Posts: 1
edited 03/16/2015 - 7:33 AM in Chronic Pain
In 2009 I had a Prostate Exam. Right after the exam I got a very, very uncomfortable pins and needles sensation in the Pernea area, which took pain meds to mask the feeling. Well. They gave me antibiotics several times to no avail. The Pins and Needles sensation turned into a feeling like I was sitting a golf ball. Then it tuned into a groin ache. Then it eventually went down the backs of both legs. This is where I am at now. 24/7 deep aching pain from the lower buttocks, into the backs of both thighs, with a little bit of a groin ache. Sometimes it goes all the down to both calves. It never goes away. I have had numerous MRIs, Cat Scans, Xrays and Nerve Tests. Nothing was ever found. My Nerologist says it is a nerve issue. So I am now on Pain Management, where I am on maximum dosages of Lyrica and Neurontin, but the constant pain is still there, so I also take Tramadol and Lortab. I want off of these meds and the pain gone. Has anyone ever experienced or is experiencing this?. Lor


  • LizLiz Posts: 7,832
    edited 03/16/2015 - 7:34 AM
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    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • itsautonomicitsautonomic LouisianaPosts: 1,820
    edited 03/16/2015 - 9:57 AM
    The only way to properly treat something is to know what it is. Other than that it's just trial and error. what does the neuro suspect caused it?
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • disaster after microdisectomy/ practically disabled after 6 months.... I feel the pain literally...my last hope was this nerve test and I'm feeling they'll come back at me with thats fine too! I can't take it anymore. The constant pain I'm hitting a breaking point. and I to have no "CLEAR" diagnosis.... Have you had any injections? surgeries on your lumbar? I've been told so many things and then they retract that...I was also tested for all arthritic and lymes and RA and Lupus and Fibromyalgia....I'm so healthy!!! But never below and 8 in pain...
    This can't be happening
  • itsautonomicitsautonomic LouisianaPosts: 1,820
    How did I get here, did you ask about small fiber nerve damage? If they think it involves the nerves but EMG is negative may be worth looking into. EMG only tests large fiber nerves, your small and pain sensory nerves will not show up on that test as its only for large fiber nerves. Do they think it could be failed back surgury syndrome ? This can result in a central sensitization of the nervous system in many of those cases.
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
  • about small fiber nerve damage. not sure that will ever be something someone would admit to. see my situation stems from what I'm guessing is not that actual surgery but the spinal epidural that followed 2 months after due to pain coming back with some scar tissue on the nerve...but now all pain has transferred to right sided pain, I had a very bad reaction to med as well as a wet tap and was bed ridden for 5 days...the only time since last feb of 2014, when this "injury " gave me a herniated disc left side ....and as time goes by though I am starting to have the pain back on the left side which has really got me concerned because we are going backwards here not forwards. I just need a straight diagnosis so i can try to get my quality of life back ...as i mentioned i've lost so much over this, no exercise, no long trips no long walks, lost my job, I've pulled away from family because I can't sit , stand walk, ect...and I don't want the constant are you ok at these family events besides im barely getting out of the car by the time I get anywhere. I've done so much research on my own, maybe piriformis syndrome , maybe something to do with the crural nerves, maybe FBS, maybe femoral, as my PT said I test positive for that, but drs keep dismissing these diagnose theres a muscle too I think I'm spelling wrong psoas which , they've (drs) said systemic, all negative, SIJ, w siatica, nerve pain is not down back of leg, my pain is lumbar mid buttocks round crease in leg to thigh down thigh muscle and sometimes numbness and tingling in foot, but as I said all brought on with activity PT, aqua, traction, exercise, nothing helps it. I can't even lay comfortable...maybe if this sounds familiar to anyone they can help I figure if I keep posting with latest test updated maybe someone will say hey thats me. I even posted under neck pain or chronic pain my c spine results, not even sure how that would tie into all this but my necks always been a mess...that was ordered because i'm getting some numbness and pain when I lay on it sleeping other wise all day its doesnt bother me. I think thats secondary. Thank you itsautonomic any input or suggestions that you want to PM me or anyone else for that matter I'll take anything...
    This can't be happening
  • itsautonomicitsautonomic LouisianaPosts: 1,820
    A bad reaction to an epidural can cause some adverse things to occur in human body. I have came across people who it triggered neurological issues , autonomic issues, CRPS and many other things. I always say trust your body if you feel that is when all this began pursue this angle also. My doctors spent 3 years going around a neck injury that I always felt started all my issues, had the injury and then was never right and that's all I could ever say definitively but scans were ok. 3 years and now my doctors now are absolutly in no disagreement the neck injury triggered all this. Literally I could have told them that from the start, now what it triggered I had no idea at the time. But their diagnostic process took 3 years and many doctors to return to the beginning . Sometimes it really is obvious to the patient but not the doctor.. I know what loss all this can bring in your life. You just hve to leave no stone unturned and people involved in working out and health tend to know and understand their body best as they are so high functioning physically so even the smallest change can be noticed and changes that functioning. This is a great advantage for you, now complete the circle by absorbing as much information on things that match your symptoms and put yourself in the best doctors hands possible . My only regret is continuing to follow doctors down paths I did not think matched my synptoms or totally ignored the cervical injury that I knew started this. I should have went to the teaching hospital a year or more earlier. Put a time limit on how long you are going to look and at that time you have to say I gave them a chance and the issue still not found I have to take another route. If they are spitting out tons of diagnosises and nothing to definitively prove then this tends to mean they have no idea right now and may not be close to finding anything. You always hope it can be easily diagnosed but when it can't be you often have to take things in your own hands
    PS the reasearch can be exhausting and make you crazy at times but you have to look at it as an investment . Don't look at it as I have that cause symptoms similar , look at it as this may be a possibility and catalog it because you may hear this diagnosis from a doc but no proof found yet and this way you are either more prepared or you hve to knowledge to question it if it doesn't fit with your symptoms. It's not easy but for me all control or my life was in doctors hands and it made me feel helpless when nothing was being found so this gave me a part in the fight. But just use common sense and be objective so you don't go crazy :)
    Do your due dilegence, trust you know your body and question everything if it does not fit. Advocate for yourself and you will be suprised what will be revealed trusting your body and instinct.
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