I'm a 39 year old single mother of 2 boys who are 9 and 7. I work full time in an office, casually in a pharmacy and take 2 courses each semester online. 19 months ago, I thought that I injured myself while shoveling snow. It's been a long 19 months. Initially, EMG studies in May 2011 showed bilateral ulnar neuropathy which seemed right because I had intense tingling down both arms, ending in the last two fingers. It felt like I had hit my funny bone 24/7.
I've been in physio weekly since June 2011. My physiotherapist felt that it was a problem with my neck. My doctor sent me for an MRI of my back which showed several hemangiomas and lesions that could not be ruled out as romanus lesions so she sent me to a rheumatologist to determine if it was Ankylosing Spondylitis. In June 2012, the rheumatologist poked and prodded and said it was fibromyalgia and now she's sending me for an MRI of each elbow and some strange blood test (I've already had the ESR and CRP done which were normal) to determine if there's an inflammatory condition.
While waiting 7 months for my rheumatologist appointment, my friend (who is a pharmacist), was able to get me in to see a colleague and friend of hers who is a chronic pain doctor in February 2012. He prescribed Cymbalta 60 mg, tramadol (up to 400 mg/day but I try to stick to 50 to 100 mg at bedtime only) as well as high doses of Mg, Vit D and Omega 3. He was at a loss as to what it might be and said the dx of exclusion was fibromyalgia and that it definitely wasn't Ankylosing Spondylitis. I just wanted the pain to stop, that's all that I knew. I'm not accepting a dx of fibromyalgia, I don't think that it fits but whatever. I think any area might be sensitive if a doctor pokes at it hard enough. The chronic pain doctor said that I had 18/18 trigger points, the rheumatologist said that I had 15/18...whatever.
I had a fair bit of improvement after starting the Cymbalta. In June 2012, after seeing the rheumatologist, the tingling in my elbows and hands started again so the chronic pain doctor prescribed Lyrica which settled it down but also ordered a c-spine MRI which showed moderate foraminal narrowing from C5 to C7, bone spurs at C6-7 and mild hypertrophic changes at multiple facet levels. The chronic pain doctor said that I have the MRI of a 60 year old.
I just want my life back. Everything that I do causes my arms to flare up...lifting groceries, riding my bike causes my hands to go numb, running (I used to run half marathons, now I'm down to 10k runs) causes intense, sharp, shooting pains from my elbows to my hands everytime I have a heel strike, etc. I'm still at physio once weekly and massage. This is becoming very expensive but he does IMS which gives me some brief relief.
Now I'm having 2 new problems.....it's like a spasticity when I'm laying down...muscle twitches, enough to cause a limb to move, mostly lower body. It's making sleeping hard. The other...and this is mortifying....urge incontinence....bladder only. I'll be sitting somewhere and all of a sudden, need to urinate intensely. Where I've been in the middle of a meeting and had to rapidly excuse myself. At times, I can't make it to the bathroom without a lot of leaking. I'm scared that it's only a matter of time before I lose complete control of it. I work in a big office and I'm scared to death of this occurring. Are these 2 things related to my medications or my condition?
Is this it? Is this my new life? Is this as good as it gets because if it is, I'm really disheartened for what the future looks like.
Yes, it can be. I'm aware of the potential and symptoms of serotonin syndrome, as is the chronic pain physician (who's specialty is anesthesiology) and my friend who is a pharmacist. But yes, it's definitely not a combination to be taken lightly.
I'm glad because believe it or not, there's Doctors and patients alike that have no idea.
As far as your initial post, I think you're doing the right thing by not accepting the fibro diagnosis. I do acknowledge that Fibromyalgia exists, and I know people that have it, but it's often used as a diagnosis when they can't figure out whats wrong with you.
I've had pretty serious neck problems for years and subsequent surgeries, so I understand and sympathize with what you're going through. I've had Emgs, and I was under the impression that an Emg was able to differentiate between Cervical radiculopathy and things like Carpal tunnel and ulnar neuropathy? I know that some people have bilaterial pain related to neck problems, but I never have, and as far as I know its not that common. Take it from me, you really don't want your neck to be the source of your pain. Do certain neck motions make your pain worse, do you have a lot of tension type headaches?
An EMG can differentiate between ulnar neuropathy and carpal tunnel but I don't know if it can do cervical radiculopathy, maybe it can? My physio guy has said that the reason that a lot of carpal tunnel surgeries fail because it's actually a problem that starts in the neck and the pain in the wrist is more of a referred pain. My chronic pain dr is not a pro-surgery guy either unless it's absolutely necessary so he wants me to watch for signs of imbalance or clumsiness but I'm a bit concerned because I've been reading that bladder and bowel issues can be a part of foraminal narrowing. The failure rate for neck and back surgeries don't make me jump at wanting anything done either. Can I ask what kind of neck surgeries you've had? Are they similar to what I may eventually need? Were they successful for you?
The neck motions don't bother me too much but I am restricted in my neck movements...hypo mobility I think is what the physical rehab dr called it. And then I guess my body has just compensated over the years as it worsened. I'm lucky in that I don't get headaches often, when I do they are in the front, behind the eyes and I just pass it off as stress at work.
Well if and EMG can differentiate between carpal tunnel and ulnar neuropathy it should be able to tell you whether or not your arm pain originates in your neck, because that’s my result was "Chronic C6 radiculopathy". My MRI showed problems at multiple cervical levels and my Neurologist wanted to make sure they operated on the right level.
As far as the failed Carpal Tunnel releases, I’ve never heard that and that sounds like whoever’s doing the diagnosing doesn’t know what their doing. I know several people that have really been pleased with their outcomes. Personally, I think I’d try that before I had neck surgery, CT release is a really simple procedure.
My 1st neck surgery was an ACDF, where they go in and remove the disc, put in a bone graft or spacer and then screw a plate over the top of it. In addition to a really bad herniation at C6/7 I had a numerous bone spurs causing foraminal stenosis (narrowing) and some cord compression. I had back surgery about 12-13 years ago, but this was scarier.
The pain I had prior to this was unbearable, burning in the neck, sharp electrical pain following the nerve from my neck, through my upper back, shoulder into my arm and hand. Intense electrical pain and tingling in my hand, it felt like someone had a piece of barb wire and was moving it around inside my arm, it was horrible.
The surgery got rid of the arm symptoms right away, I’ll give it that. It didn’t get rid of most of my other symptoms, but the Doctors told me I’d get better in time. Did months of physical therapy, osteopaths, pain management etc, etc, pretty much for nothing. Couple years later pain started getting really bad again, they wanted to do another level, said it’d help. It did a little, but I’m still dealing with pain daily. I’ve pretty well accepted this and learned to live with it.
I'm done, No more surgeries, or Doctors, except one. I have a life, a family, a career, I just don’t have time to search for answers anymore, it takes a lot out of you.
I don’t know if your MRI said anything about canal stenosis or cord compression, but that’s what causes bowel and balance problems. Foraminal stenosis or narrowing causes nerve pinching which in turn causes the kind of pain I was describing above. The foramina are little holes that the spinal nerves travel through from the spinal canal. Sometimes a herniation or bone spur gets in there and cause narrowing and the nerves get pinched.
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