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    Scared, in pain, no diagnosis, and frustrated with doctors.

    Hi and thanks for having me on this forum, good to be around people (virtually) that are experiencing the same things. I am in extreme pain almost all over and no doctor (I've seen 2 neurosurgeons, 2 neurologists, 2 rheumatologists, 1 orthopedic surgeon, and more) has been able to diagnose what these symptoms mean. I am scared and depressed and of course frustrated. Please dont be scared off by my long post - I would appreciate any answers even if its not THE answer Here is my story so far.

    I?ve been in a series of car accidents and skateboarding accidents, but never experienced any long term pain from them. In March of 2013 I had a weight lifting injury by bending over and pulling up way to much weight (345 lbs) and this caused moderate pain in my back. I had trouble sitting and bending over. It hurt, but only probably a 3 on the pain scale. I got an MRI and the drs found 2 herniated discs in my lumbar, but they were not impinging on nerves.

    As time went on, my mid to upper back started to hurt as well (burning and aching). I asked for an MRI of my entire back, and they found 3 herniated discs in my thoracic. The MRI mentioned possible myelomelacia as well as cord compression. Of the doctors I saw, none of them thought anything of it.

    On September 25, 2013 I had a caudal epidural steroid injection into my lumbar spine. Not only did the injection not help, but I felt something was off. My ankle started burning and my knee joints hurt. I continued physical therapy, and things seemed to start doing better.

    I traveled to California shortly after that, and after a long plane ride there and back (in which I had to sit in a fixed position for a long time) my butt, entire back, and legs started to burn and tingle. In addition, my right arm started burning intensely. I went to specialists at University of Florida to get an MRI of my leg and arm, but they were absolutely fine.

    I interned at Lockheed Martin in summer of 2014 and the pain in my legs, wrists, and back were aggravated so much by sitting that they allowed me to stand at work. They bought me specialty equipment (standing desk, ergonomic mouse, etc). I was even visited by Lockheed?s back therapist every week at work.

    On May 8, I had a nerve ablation in my lumbar. The pain in my lower back was helped a little, but the pain in the rest of my body remained.

    I was playing volleyball with friends one day, and my right leg started burning so bad and knees tingling so much that I began limping as I walked. I got through the summer and began the fall semester of school.

    At this point, both legs, my lower and mid back, and right arm burned and seared with pain. It also hurt in my joints, as if fire ants were inside my elbows and wrists. It took much effort just to go to school and sit through classes

    The neurosurgeon then sent me to the neurologist to do Nerve Conduction studies. The study showed that my nerves were not damaged. With this information, the orthopedic surgeon decided my herniated discs were not responsible for my pain. I saw neurosurgeons at Shands, the Florida Hospital in Orlando, and the Mayo Clinic (the one in Florida) who all told me the same thing - the herniated discs are not responsible for the pain and they didn?t know why I was experiencing the pain.

    I received a thoracic nerve ablation on December , 20141. The anesthesiologist was hesitant to perform the operation because of the possible myelomalacia that the radiologist wrote on the report, but we decided to go ahead with it anyways. I went back home and went to sleep after the procedure. When I awoke, my left arm, ribs, face, and neck were stiff and burning with pain. I asked the Dr if this was common and he said no. I searched the internet and it seems he was right. It was not a known side effect.

    I stopped going to class because I could not sit in a chair. The pain from sitting was too unbearable I started having difficulty concentrating due to the pain. I was prescribed Neurontin, and it helped a bit.

    I hadn?t had sex in a while at this point, so I did. The next day, the pain in my entire body was terrible. Not just my back, everywhere. In all the joints, everywhere. My pain was now at the point it was before I took the medication. Medications were added and doses upped. This time, I went to Pennsylvania. Because of all the sitting in the plane, the pain again got worse and my meds were upped again. I was prescribed water physical therapy (the gentlest kind) and I could not even handle that. Any activity AT ALL worsens my symptoms. I was taking a class this summer but had to drop it because I cannot sit in the chairs in class. I moved back to West Palm for the summer to live with my parents because I feel I need moral support from them (in addition to funds by searching for answers).


    Symptoms:

    Achy joints. I can no longer do push-ups because my right wrist hurts so bad. Burning in knees, elbows, wrists. Burning in lower, mid, upper back. Tingling in legs and arms. Cannot sit. When I sit, I get pain that begins in lower back and shoots up to neck and top of skull. Feels like brain zaps. What is weird is that cervical MRI is fine, but my neck still aches. The pain is unbearable. Burning and tingling in groin and ribs and face. Neck stiff, body stiff.

    I recently got my meds high enough that I was not in too much pain (if I didn?t sit, that is). I had very slow, controlled sex recently (I was being careful) and I am now in terrible pain again. How is it that having sex with my back would cause my leg, arms, elbows, and wrists to burn? I am suspecting a spinal cord injury, and when I sit or have sex the injury is aggravated or damaged more, causing more symptoms.

    Update 8/15/15
    I was diagnosed with rheumatoid arthritis. My rheumatoid factor, ETA protein, and CCP
    were strong positives, but there is no sign of swelling or hot-to-the-touch joints. I am skeptical of the diagnosis for these reasons and because I am a 29 year old male with no family history of rheumatoid arthritis.

    Medications:

    Amitriptyline ? 25 mg at night
    Guanfacine ? 3 mg at night
    Gabapentin ? 600 mg 4 times per day
    Chlorzoxazone ? 750 mg per day
    Carbamazepine ? 200 mg at night

    Also, for some reason diphenhydramine helps the pain as well.

    #2
    What a cotton-picking horrible experience! Sorry I can't help you except I'm paralyzed but pulled a muscle in my back from lifting something. Severe stabbing pain and now a week later it's starting to subside. Also have chronic shoulder pain, as is customary with long-time wheelchair pushers. No more lifting stuff for me!

    Just wondering, since you are an athlete, have you tried cutting out all physical sports, etc. for a while? Have you had a Physical Therapy evaluation? There are all kinds of physical therapy techniques that might help. Get on the internet and check out physical therapy pain treatment methods. It seems you might need ongoing treatment with this.

    Comment


      #3
      Originally posted by JohnnyUF View Post
      Hi and thanks for having me on this forum, good to be around people (virtually) that are experiencing the same things. I am in extreme pain almost all over and no doctor (I've seen 2 neurosurgeons, 2 neurologists, 2 rheumatologists, 1 orthopedic surgeon, and more) has been able to diagnose what these symptoms mean. I am scared and depressed and of course frustrated. Please dont be scared off by my long post - I would appreciate any answers even if its not THE answer Here is my story so far.

      I?ve been in a series of car accidents and skateboarding accidents, but never experienced any long term pain from them. In March of 2013 I had a weight lifting injury by bending over and pulling up way to much weight (345 lbs) and this caused moderate pain in my back. I had trouble sitting and bending over. It hurt, but only probably a 3 on the pain scale. I got an MRI and the drs found 2 herniated discs in my lumbar, but they were not impinging on nerves.

      As time went on, my mid to upper back started to hurt as well (burning and aching). I asked for an MRI of my entire back, and they found 3 herniated discs in my thoracic. The MRI mentioned possible myelomelacia as well as cord compression. Of the doctors I saw, none of them thought anything of it.

      On September 25, 2013 I had a caudal epidural steroid injection into my lumbar spine. Not only did the injection not help, but I felt something was off. My ankle started burning and my knee joints hurt. I continued physical therapy, and things seemed to start doing better.

      I traveled to California shortly after that, and after a long plane ride there and back (in which I had to sit in a fixed position for a long time) my butt, entire back, and legs started to burn and tingle. In addition, my right arm started burning intensely. I went to specialists at University of Florida to get an MRI of my leg and arm, but they were absolutely fine.

      I interned at Lockheed Martin in summer of 2014 and the pain in my legs, wrists, and back were aggravated so much by sitting that they allowed me to stand at work. They bought me specialty equipment (standing desk, ergonomic mouse, etc). I was even visited by Lockheed?s back therapist every week at work.

      On May 8, I had a nerve ablation in my lumbar. The pain in my lower back was helped a little, but the pain in the rest of my body remained.

      I was playing volleyball with friends one day, and my right leg started burning so bad and knees tingling so much that I began limping as I walked. I got through the summer and began the fall semester of school.

      At this point, both legs, my lower and mid back, and right arm burned and seared with pain. It also hurt in my joints, as if fire ants were inside my elbows and wrists. It took much effort just to go to school and sit through classes

      The neurosurgeon then sent me to the neurologist to do Nerve Conduction studies. The study showed that my nerves were not damaged. With this information, the orthopedic surgeon decided my herniated discs were not responsible for my pain. I saw neurosurgeons at Shands, the Florida Hospital in Orlando, and the Mayo Clinic (the one in Florida) who all told me the same thing - the herniated discs are not responsible for the pain and they didn?t know why I was experiencing the pain.

      I received a thoracic nerve ablation on December , 20141. The anesthesiologist was hesitant to perform the operation because of the possible myelomalacia that the radiologist wrote on the report, but we decided to go ahead with it anyways. I went back home and went to sleep after the procedure. When I awoke, my left arm, ribs, face, and neck were stiff and burning with pain. I asked the Dr if this was common and he said no. I searched the internet and it seems he was right. It was not a known side effect.

      I stopped going to class because I could not sit in a chair. The pain from sitting was too unbearable I started having difficulty concentrating due to the pain. I was prescribed Neurontin, and it helped a bit.

      I hadn?t had sex in a while at this point, so I did. The next day, the pain in my entire body was terrible. Not just my back, everywhere. In all the joints, everywhere. My pain was now at the point it was before I took the medication. Medications were added and doses upped. This time, I went to Pennsylvania. Because of all the sitting in the plane, the pain again got worse and my meds were upped again. I was prescribed water physical therapy (the gentlest kind) and I could not even handle that. Any activity AT ALL worsens my symptoms. I was taking a class this summer but had to drop it because I cannot sit in the chairs in class. I moved back to West Palm for the summer to live with my parents because I feel I need moral support from them (in addition to funds by searching for answers).


      Symptoms:

      Achy joints. I can no longer do push-ups because my right wrist hurts so bad. Burning in knees, elbows, wrists. Burning in lower, mid, upper back. Tingling in legs and arms. Cannot sit. When I sit, I get pain that begins in lower back and shoots up to neck and top of skull. Feels like brain zaps. What is weird is that cervical MRI is fine, but my neck still aches. The pain is unbearable. Burning and tingling in groin and ribs and face. Neck stiff, body stiff.

      I recently got my meds high enough that I was not in too much pain (if I didn?t sit, that is). I had very slow, controlled sex recently (I was being careful) and I am now in terrible pain again. How is it that having sex with my back would cause my leg, arms, elbows, and wrists to burn? I am suspecting a spinal cord injury, and when I sit or have sex the injury is aggravated or damaged more, causing more symptoms.

      Update 8/15/15
      I was diagnosed with rheumatoid arthritis. My rheumatoid factor, ETA protein, and CCP
      were strong positives, but there is no sign of swelling or hot-to-the-touch joints. I am skeptical of the diagnosis for these reasons and because I am a 29 year old male with no family history of rheumatoid arthritis.

      Medications:

      Amitriptyline ? 25 mg at night
      Guanfacine ? 3 mg at night
      Gabapentin ? 600 mg 4 times per day
      Chlorzoxazone ? 750 mg per day
      Carbamazepine ? 200 mg at night

      Also, for some reason diphenhydramine helps the pain as well.
      Rheumatoid Arthritis will cause all of your problems, Indocin has been my best option for 35 years. Biologics like Enbrel and Humira are the new drugs. Find a good doctor and get aggresive with slowing it's progression before it causes permanent damage. I have heard many people complain about similar symptoms from Lymes disease too.

      Comment


        #4
        @triumph, I cut out everything. I havent lifted weights in a year. I can't have sex anymore. I do not swim. I can not take physical therapy. I can barely exist out of bed. I do not really drive. When the rare times come that I do drive, I have to lean my chair so far back that I can barely see over the wheel (I do this because I cannot sit in chairs that are straight up right, or I get an achy, shock-like sensation that shoots up from my tailbone to my neck, the bottom of my skull, and then to my head). Then, the rest of by body starts to hurt, including my wrists. My pain was being "somewhat controlled", and by somewhat I mean the pain was bearable if I didn't have sex, do any activity, sit, or strain my body, but then I had sex and went on a boat in a matter of a week, so now I'm basically bed-ridden with pain that affects my entire body. Literally, my entire body hurts. Its really weird - I feel like no doctor would believe my story based on my triggers.

        @nrf, I just started prednisone for a 3 week run and methotrexate 12.5 mg a week this week. Nothing has improved yet. Actually, I feel like I'm in even more pain since starting it. Is this common? Thats so odd that rheumatoid would cause all this. It would cause my legs to tingle and burn? Ok, I would buy that. But, what makes me think it may be the spinal cord is that when I got the nerve ablation of the thoracic, it made everything worse - it made my ribs, face, and now my groin to tingle? So confusing!!

        Thanks for the support guys, I appreciate it SO much!

        Comment


          #5
          Originally posted by JohnnyUF View Post
          @triumph, I cut out everything. I havent lifted weights in a year. I can't have sex anymore. I do not swim. I can not take physical therapy. I can barely exist out of bed. I do not really drive. When the rare times come that I do drive, I have to lean my chair so far back that I can barely see over the wheel (I do this because I cannot sit in chairs that are straight up right, or I get an achy, shock-like sensation that shoots up from my tailbone to my neck, the bottom of my skull, and then to my head). Then, the rest of by body starts to hurt, including my wrists. My pain was being "somewhat controlled", and by somewhat I mean the pain was bearable if I didn't have sex, do any activity, sit, or strain my body, but then I had sex and went on a boat in a matter of a week, so now I'm basically bed-ridden with pain that affects my entire body. Literally, my entire body hurts. Its really weird - I feel like no doctor would believe my story based on my triggers.

          @nrf, I just started prednisone for a 3 week run and methotrexate 12.5 mg a week this week. Nothing has improved yet. Actually, I feel like I'm in even more pain since starting it. Is this common? Thats so odd that rheumatoid would cause all this. It would cause my legs to tingle and burn? Ok, I would buy that. But, what makes me think it may be the spinal cord is that when I got the nerve ablation of the thoracic, it made everything worse - it made my ribs, face, and now my groin to tingle? So confusing!!

          Thanks for the support guys, I appreciate it SO much!
          Prednisone makes me feel better almost instantly, they usually start you on a medrol dose-pack which is way to small. Methotrexate did nothing but make me sick and give me ulsers in my mouth and on my pecker. Keep searching and good luck!

          Comment


            #6
            This might be worth looking at: http://www.arthritis-research.com/content/4/1/5
            and, in general, www.cpnhelp.org

            In my life, I've managed to do a lot of damage to my spine...nothing paralyzing, but perhaps just enough to open the door to an active C.Pnuemonia infection. Antibiotiics have stopped the progression.

            Comment


              #7
              That dose of Amytriptilene is very low.
              Myofascial syndrome or Fibromyalgia or? I would see a neurologist who specializes in pain and maybe a rheumatologist to figure this all out.
              Do you have spasticity/tightness of your extremities? Naproxen 500 mg twice a day doesn't help.?
              The MRIs should have shown something infectious.
              CWO
              The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

              Comment


                #8
                Originally posted by SCI-Nurse View Post
                That dose of Amytriptilene is very low.
                Myofascial syndrome or Fibromyalgia or? I would see a neurologist who specializes in pain and maybe a rheumatologist to figure this all out.
                Do you have spasticity/tightness of your extremities? Naproxen 500 mg twice a day doesn't help.?
                The MRIs should have shown something infectious.
                CWO
                The amitriptyline was increased to 50 mg. Helps a little, but not much. I do not experience spasticity/tightness of my extremities. I take ibuprofen, it doesnt help. The HUGE thing is this.... the nerve ablation of the thoracic should NOT have made everything worse, including tingling in the face, ribs, left arm, etc. Nerve ablations just dont do that unless it hit some kind of nerve incorrectly - which means, I think there is a spinal cord issue that is being missed, like myelomalacia.

                Plus, sitting causes a painful pressure at the base of my skull then makes the rest of my symptoms worse? Makes no sense. The drs I've seen cannot figure it out. Please, any advice??

                Comment


                  #9
                  http://www.nyp.org/news/hospital/abl...back-pain.html. This website is about nerve ablations

                  if the provider who performed the ablation feared for myelomalacia that could be a possibility. Myelomalacia is bruising to the spinal cord and can be detected on MRI. I agree with ckf above that a neurologist or a pain clinic team should assess and treat you. This has taken a toll on you physically and emotionally so a team approach would be to your advantage.

                  pbr
                  The SCI-Nurses are advanced practice nurses specializing in SCI/D care. They are available to answer questions, provide education, and make suggestions which you should always discuss with your physician/primary health care provider before implementing. Medical diagnosis is not provided, nor do the SCI-Nurses provide nursing or medical care through their responses on the CareCure forums.

                  Comment


                    #10
                    Your symptoms and history are so complex that I doubt you'll be able to parse the causes (much less arrive at an effective treatment plan) unless - as SCI-Nurse says - a coordinated team of doctors examines your case. The operative word is "coordinated," because independent health care specialists, with separate offices, staff and facilities, seldom communicate effectively (or at all) with each other - the neurologist says this, the rheumatologist says that, the internist says the other, and the patient is left with a patchwork of possibilities and approaches.

                    Even when a team of doctors is on the same page, looking at identical data through specialized lenses, it is not always easy or possible to arrive at a diagnosis - but chances are much greater that you'll be helped with the team approach, than if you're seen by a variety of doctors over time, in different settings. I think it would be worthwhile for you to go to a diagnostic center of excellence like Mayo Clinic in Rochester MN, where on average it takes between 3-5 days for a patient to receive a comprehensive diagnosis and treatment plan (with followup).
                    MS with cervical and thoracic cord lesions

                    Comment


                      #11
                      I actually saw a neurosurgeon at Mayo Clinic (Jacksonville location, not as good) and he didn't think the MRI findings of my spine correlated with my back pain, and sent me off.

                      I requested an appointment with the neurology department of Mayo Clinic in Rochester MN, but they declined to take on my case. I recently saw my neurologist and his nurse put together referral packets and sent them to Mayo in MN, Cleveland Clinic, and John's Hopkins. Hopefully one of them will take me on as a patient.

                      In other news, I was recently in a roll-over car accident 2 weeks ago. They gave me a new entire-spine MRI, but things looked the same as before. The only thing new they found was, in the cervical part of my spine, and in their words, "an 8 mm T2 hyperintense region in the right paratracheal region, which is partially imaged and may represent an incidental bronchogenic cyst or lymph node."

                      I doubt this new finding explains my symptoms. My energy is low, depression and anxiety high. I am 1 year from graduating and do not care about finding a job. I have almost lost the will to live. I am seeing a psychiatrist, but there is no amount of medicine or counseling that can make me feel better when I can't sit in a seat or have sex because of the pain, or muster the motivation to work because the meds are making me too lazy.

                      Comment


                        #12
                        Wow, what an ongoing nightmare all of this is. I hope that your neurologist's referral packet will convince Mayo in Rochester to accept you as a patient - I've heard that's the best branch of Mayo for neurological issues. And, of course, Johns Hopkins and Cleveland clinic would be good, too. I understand what you mean about psychiatry being of no help when you can't even sit in a chair or think clearly due to meds. Just getting a diagnosis you can have confidence in - that makes sense of all your symptoms - would be a huge help in the mental health department!
                        MS with cervical and thoracic cord lesions

                        Comment


                          #13
                          Oh my you are right, this is a nightmare! What bugs me isn't the pain. Well... it is, but it's the fact that it gets worse and worse when I sit, have sex, or do anything physical. It doesn't just get worse during the activities, it STAYS worse. So even if I find the right medicine to relieve pain (which I have had in the past), I have to avoid all activity to keep pain away or the meds must be raised (cannot be done forever). This is no way to live

                          Comment


                            #14
                            Neuropathic pain is one of the least understood issues on earth - precious few in the medical community know what chronic nerve pain is like, let alone what to do for it. It has a wayward life of its own that seems to defy logic. Inability to engage in any activity without exacerbating the pain is something that's hard for able-bodied doctors to comprehend, even those who specialize in pain management - nerve pain is a whole different animal from the kinds of pain they typically deal with.

                            Getting an accurate diagnosis would allow you to have a point of focus and a way to organize your thoughts about the pain, and sometimes knowing that label can help a person to prioritize treatment options. Working to come to terms with all of this is an ordeal in and of itself. Sometimes one has the good fortune to encounter a doctor with genuine empathy and a willingness to think outside the box, who is open to accompanying the patient and reexamining strategies all along the way - I hope that you will meet one or more people like that in your quest for answers.
                            MS with cervical and thoracic cord lesions

                            Comment


                              #15
                              I am starting to doubt a diagnosis all-together. It's like every Dr I go to doubts my pain because my strength is normal and because nothing they do to me in the office can cause more pain (except me sitting, sex, laying, etc). No prodding by the Dr makes the pain worse. It is constant except for the aforementioned activities. It just makes no sense. Having been to upwards of 18 doctors now, I am starting to doubt that I will ever get the treatment I need. Because of the lack of official diagnosis, the drs I'm seeing have mostly ignored me and have not treated me with real concern (even though the pain is so bad I am considering suicide). I am starting to have no faith in medicine.

                              Comment

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