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37 yr old w/Chronic Pain, Head pressure, 3 autistic kids, No answers, need help

Hi everyone. I am a 37 year old mother of 4, 3 diagnosed with ASD and another awaits evaluation. My life is a busy one. I am constantly on my feet, bending over to change pull ups and clothing, and participating in poor posture. With the sudden onset of pain, head pressure, and spasms, life has been extraordinary to say the least. Some days i just go go go while holding back tears and the grimace that is going to become permanent if answers are not found. Has anyone had similar problems and a doctor who actually cared to seek the truth?  
Quick note: I see a neurologist April 3rd, a Chiropractor March 27th, and I had received some trigger injections and a couple physical therapy visits over the past few months. Lately it has been impossible to make it to therapy and I need to res
If they let me, after 3 weeks cancelled. I also just told my primary care that I no longer will need his services as he was careless and thought that I was too young for spinal issues.
In July I fell. I went running through my dark apartment and didnt realize the ottoman was pushed back against a wall as I went to pass it. I went airborne and landed on my side. I think it was my left side but I can not even remember at this point. I am quite clumsy and have fallen many times over the years but this time I actually cried. I got up, realized that I was perfectly okay, and walked slowly to turn on the light and do what I originally meant to do. Three days later I woke up with an odd feeling on the right thoracic side of my back. It felt as if something was growing in my muscles. It was not a spasm in the typical means. It felt like a big ball that was pulsating in my back. It seemed to contract up and down without the tightness of a spasm. The next day it was also on the left side. It now traveled (but seperated at the spine) from shoulder blade to shoulder blade. Within hours I had numbness where these weird feelings were which spread to my arms, near my lumbar back, and also in my abdomen. I also felt as if my head was bobbling as i stood upright, as if it was not being supported correct. I was terrified as conditions became worse, walking was hard, the pain unbearable. I would alternate pain and numbness and the spasms started in the thoracic spine, from mid shoulder blade to mud shoulder blade. The spasms were intense (and still are even though they are also in my calves) and they travelled down to my lower thoracic area. An xray at the ER uncovered no breaks or anything so I figured it would go away. Within a week and 2 ER visits later, the ability to walk balanced became unusual, the pain increased, and a severe head pressure came on. It still gets me often. It is the feeling of going up in an airplane. Popping my ears helped. Cat scan showed nothing but my doctor said that it was likely inflammation. (I wish i stayed with her instead of her colleague who offered trigger injections after the hospital did some with some success) I begged for an MRI but she said to wait because of inflammation. That wait took 6 months because of my circumstances. 
Since then I still have the intense back spasms, spasms in my calves, head pressure, pain in my shoulder under the blades which is made worse by stretching as they pop ridiculously with every movement just like me knees do. They burn. Before the fall I knew of some issues from years ago like bad arthritis, degeneration in a couple spots in my lumbar spibe, sciatica, and my tail bone curves up at an angle differently than the typical spine.
An MRI in December uncovered other things and problems have gotten worse since then as the other doctor just started sending me to therapy last month. I have non specific straightening of the cervical spine, bone spurs at c4 c5, c6 c7, degeneration in the neck and a protrusion in the neck along with two protrusions in the thoracic spine. Also, flattening of the left ventral cord in t2 or somewhere around there? The other doctor that i saw told me that my MRI was completely normal when i asked for a referral to a spine doctor for a possible cortisone shot. (I was supposed to get one years ago for lumbar issues but had lost a job and insurance) The doctor told me that the head pressure is middle ear issues or fluid and to keep popping my ears. I did this for 3 months with no improvement. He said no spine doctor, they will not do anything for me, my issues are small, and he doubts the cat clawish feeling in my neck is because of a pinched nerve where the spurs are. This is after he finally admitted to my MRI and then said that, oh, its tiny though, or its small though, it wouldnt get worse in 3 or 4 months, your fine, just stretch!!!! He told me that he has had spine surgery and that he did not have as many complaints as me. I was speechless, literally, then i cursed him and told him that he has caused me more pain with his lies and that the human body is complex. He thought that i was too young. I don't think age is a requirement for health issues though. I told him that i will find a new doctor and left immediately. He did the same thing while giving my 5 year old a referral for autism. He has severe autism yet the doctor still just said that he is "mechanical". Luckily he was not the one qualified to diagnose and evaluate him. 
So anyways,  I am now stuck w/no PC although I have an appt. w/a new sports medicine doctor in a couple weeks. Nuerology April 3rd suggested by the first doctor. 2nd doctor rolled his eyes about this. Chiropractor next week, etc. I hate complaining because I just have too much going on to take care of myself but this has gotten so bad. I spasm every day from the second that i wake up and stand up until shortly after i lay flat. I Use lidocaine patches, heat patches, menthol rub, motrin, benzos for anxiety that i noticed helped with spasms as well. Any suggestions for medicine, herbal or not, anything at all will help!! No opiates though. Also, does anyone have a similar experience and how quickly did it worsen or resolve? If the spine can heal in 6 months then I am quite sure that it can deteriorate even more at an even faster rate. What should i do about the doctor? I  feel shame about talking about this now, I feel like nobody will care to help. 
Im literally willing to do almost anything to end this torture. Im so tired of hurting like this. My children communicate by pulling  me to and from what they need and want and they do not understand that mommy needs a minute, or that I hurt so badly. I am happy that i finally looked into a community of people for suggestions, but I still feel unhelpable. My life is psychologically draining as i constantly grieve and blame myself for my children's autism. The physical part has added so much more intensity to that. I must advocate for myself at this point, just as I do for my babies every day. I absolutely HAVE to be okay and healthy to care for them. I am all that they have and that is why I need help or advice so critically. 
Ps...knee issue was runners knee...shoulder blades do the same popping so is it the same type of problem? They aren't related to this injury though.
Thank you so much
P.S. I have hashimotos disease, Adhd, anxiety, and sometimes depression. Prior surgery in 2008 to remove an ovary and fallopian tube from a cyst or tumor. Arthritis and lumbar plus knee pain since my early 20s. Was overweight after 3rd and 4th pregnancy thanks to my thyroid and lack of motivation. :) Now at 138. 5'4". Unsure what role weight had played to any issues prior to the fall. Lost 16 pounds since the fall. 

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Comments

  • SavageSavage United StatesPosts: 7,385
    Hello angellienalabelle!
    I am curious....if I read correctly, you are no longer with your primary doctor. Have you found a new primary doctor?
    Also, wondering if you have been regularly seeing a pain management doctor?....or other spine specialist?

    It seems very good that you are seeing neuroligist. My pain management doctor is also a neurologist and he did variety of tests on me that helped to find spinal issues.
    The EMG was also very revealing for me.

    My primary care doctor tried working with my pain two years before referring me to PM doctor. And that was best thing for me!
    My pain sent me to ER on more than couple of occasions as it was out of control ..out of my mind pain that needed the cycle to stop.
    I have not been to ER since working with PM!

    If you do not yet have, now seems like a good time for you to strengthen your support system.
    Friends, family...maybe other parents who also understand the uniqueness of your children's needs and their way of communicating....to help you out so you are not physically stressed.
    Ex..to help with laundry, dishes, childcare, etc....

    In my area, special needs children, starting as infants, receive guidance from the school district.
    This also includes respite for the parents. I don't know how many hours week/month....
    Many times it is an aide that they are familiar with already.

    It is obvious you have quite a bit on your plate!
    Feeling unnecessary guilt for your children's autism is one thing you can rid yourself of immediately.
    Guilt can be the gift that keeps in giving.
    It really is a waste of energy, as right now energy is needed to care for yourself as well as your children.

    I know the pain and feeling vulnerable can make it difficult to advocate for yourself, but as you said, you must.
    I just repeated my symptoms until someone was able to help me.
    And it is very surprising to hear a doctor was comparing your symptoms to his own....yikes! If I read that correctly.

    Stay strong! You are the only one who knows your pain.
    Many of us know the trial and try again of finding help to find cause of pain. And again for finding proper pain relief.
    ...if helps to say, you are not alone!

    While you are waiting for responses from members with shared experiences, search may be helpful to you for any of your concerns, upper right on page.
    You may be led to discussions. You may be led to medical side. The main site has all the formal medical articles and videos for you to research from on.

    Please click on link for helpful information!
    Sue
    Honorary Spine-Health Moderator
    -------------------------------------------------------------------------------------------------------------------------
    Please read my medical history at: Medical History

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