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Chronic pain and debilitating spasms. Help! What do I do next?

Help! What do I do next?

I have been suffering from back pain for over 3 years now, I had a 3 slips/falls on hard ice when I was living in Sweden 3 years ago. Although it never caused much pain at the time, my back pain gradually worsened from this time frame onwards.

Since June 2011 I have suffered from constant chronic pain 24hrs a day, and to add to that I have severe muscular spasms. These spasms force me to the floor where the pain shoots up my spinal column from the coccyx and my muscles from my hips upwards go into severe painful spasms that thrash me around the floor. My legs also shake as though I am having an epileptic fit, although the pain is only from the waist up with the odd shooting sensation generally down my right leg.

This has happened over 30 times now each resulting in ambulance services to stop the pain as this is something my medication cannot stop. I am on a cocktail of Tramadol 300mg, Lyrica 600 mg and Endone and Valium when needed – every day now! I have tried managed exercise under a physiologist with a tailored program as well, however after a certain point my muscle tension flared back up and the spasms have started again.

My symptoms include my pain becoming excruciatingly worse when sitting, localised pain to the tailbone area (cannot be touched), uncomfortable when moving from sitting to standing, constipation and bowel movement increasing pain, constant urge to urinate however unable to or uncomfortable…..and now after three 3 years after a series of 3 spasms within one week, there is now severe bruising on my lower back and buttocks, pain during sexual intercourse and tearing of the muscle during the spasms.

I have seen specialists all over the place, and there is no structural damage to my spine. They have conducted MRI’s, X-ray, CT, injections of cortisone into my SIJ joints and previously into trigger points in my back. So my questions is how do I get my life back? I am 22 and just gave up a graduate program after studying for 4 years! I am absolutely devastated with this situation and cannot even look after myself, I have lost my independence, let alone my financial situation has now fallen into the responsibility of my parents. This cannot be my life….

Is this coccydenia or pudenal neuralgia? I feel like the symptoms fit, but it hasn’t been explored by doctors on the trail of excluding everything else. And which specialists can I go to that will understand both my daily coccyx pain and my severe spasms?

Does anyone else suffer from such severe spasms that hospitalise (A & E) you each time? How do you cope mentally, socially and physically?

Sorry for all the questions…I just need help, from doctors that I can trust! I feel like I have tried everything, but there has to be something more out there for me to gain more quality of life.
Rachel_In Pain


  • edited 04/15/2014 - 5:53 PM
    This almost won't sound true because we literally have so much in common but if you look at my past posts you'll see it's for real..
    I'm 23, have been struggling with a worsening and undiagnosed chest injury for 3 years and have recently(since 2/24) been debilitated with extreme muscle spasms..

    My pain stemmed from a backpacking trip and I've also been through the ringer with X-rays, MRI's, injections etc all showing nothing wrong visually and I am also at a loss atm on how to get my life back.

    Granted my spasms are a little different then yours, mine are an extreme tightening of my right pec muscle, not the thrashing violent kind. Regardless, because of this spasm flare up(which occurred after trying massage therapy) I've been in extreme pain and on the bad nights, considered many times going to the ER, though I've been to the hospital enough times to know they aren't going to help me much for my condition so I've always held off and have gone to my PCP's Urgent Care instead, also helps that I have both a Pain patch and breakthrough meds for as needed.

    I've also have had to take leave from work, drop out of school and miss a huge career opportunity. I've lost a lot of my independence, currently can't clean my room, do laundry, or drive for periods longer than 15 minutes and also am dumping loads of medical bills onto my parents. It truly is a nightmare..

    Before the spasms I was pretty functional and was working up to 60 hours a week and now I pretty much lay in bed 18 hours of the day and I made a post just like yours just a few weeks ago..

    So unfortunately, I can't tell you how you can get your life back as I am literally wondering the same thing about myself right now but I can at least tell you you're not alone.
    As for you're medical issues I can maybe offer a little help.

    Perhaps you should see a Rheumatologist? I saw one recently and she thought I had Ankylosing Spondylitis, which among other things, effects your sacrum(which is close to you coccyx), it also produces extreme tenderness like your experiencing, it's something worth looking into considering your symptoms.

    Maybe a pain patch could help you? I know it won't stop the spasms but my Butrans patch pretty much gave me my life back after my injury, without it I wouldn't have done half the stuff I've done the past few years. Also since the spasms are violent maybe an anti-seizure med might be beneficial?(admittedly that's a shot in the dark there)

    And lastly, I had Steriod injections into my muscle that provided almost complete relief(until my Dr. made me stretch and flared me up again). It seems you've may have already tried that, if so I've heard Botox injections can help for intense and unresponsive spasms as Botox literally will paralyze the injected muscle. I am being considered for them right now from my Pain Dr. so I don't know for sure but it seems promising to me.

    Would you like to maybe talk more in PM or Email? It would be nice to have a sort of 'pen pal' for all this
  • LizLiz Posts: 7,832
    edited 04/15/2014 - 7:58 PM

    Liz, Spine-health Moderator

    Spinal stenosis since 1995
    Lumber decompression surgery S1 L5-L3[1996]
    Cervical stenosis, so far avoided surgery
  • What type of doctors have you seen? Your primary doctor? A physical therapist? Any neuro or board certified spine surgeons?
    If you have not seen a board certified spine surgeon, you may want to start there......
    The symptoms that you describe are concerning, especially since they started after a fall.....http://www.spine-health.com/conditions/lower-back-pain/cauda-equina-syndrome
    I am not telling you that it is this, but some of your symptoms are alarmingly similar.......
    However, the only way to know for sure is to see the correct doctor for the correct condition.....and be brutally honest with them about all of the symptoms you are having.

    If, after you have done that, and there is still not an answer, then it might be wise to seek out a gyn at a large medical center and be evaluated for anything that might be connected to the pudenal nerve......and a urologist to see about the bladder issues.

  • I've seen neuro/osteo before, however with nothing showing on scans they haven't offered anything more than a cortisone shot into a trigger point, which didn't give much help.

    However following up on your comment about the cauda equine syndrome, I got scans done immediately after bringing it up with my GP. And after 3 long years the scans have finally shown something!

    I have early narrowing of the L4/5 disc height with broadbeach annular bulge of disc at level protruding slightly into neural exit foramen on the left abutting the exit left side L4 nerve root with compression.No annular tear is seen and no spinal stenosis.

    There is developmental narrowing of the L5/S1 disc. No lesion of the sacrum is seen, but there is some soft tissue oedema overlying the coccyx on its dorsal margin.

    He also ruled out : the cord, conus, and cauda equina appear normal. Which I'm assuming is good news after reading up about it.

    As it's Easter time I can't get into my specialist as he's on holiday but will be back after Anzac day, so I will know more then and hopefully will be treated with injections to the swelling in my sacrum, but as to long term solutions, let's hope there is something viable.

    I'm feeling a lot more positive now that something has shown up on an MRI for the first time, so getting back to reality of the working force looks a lot more realistic and that much closer.

    What do you think these results are indicative of?
    Rachel_In Pain
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