Oh, What a Pain!

Jill Price avatar

by Jill Price |

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pain management

I woke up and could barely get out of bed. My right hip was throbbing and the pain radiated through my sacroiliac joint (SI joint). The pain is caused by the bone graft that was done on my hip when I had a spinal fusion due to scoliosis (which could be related to my Charcot-Marie-Tooth) years ago. The pain was so bad that the mere thought of walking brought tears to my eyes. I managed to get out of bed and take a hot shower, hoping to ease the pain and inflammation, but it did not really help.

My CMT doctor sent me to a pain management clinic. The doctor there prescribed steroids to alleviate the inflammation and Vicodin (acetaminophen and hydrocodone) for the pain. Sadly, the Vicodin made me feel out of it and a little loopy, plus did absolutely nothing for the pain. The steroids helped with the inflammation, but this was only good for the short-term since you shouldn’t use steroids for long periods of time.

Once we got the inflammation under control and realized Vicodin was not the best choice for me, we tried Cymbalta (duloxetine). It is an antidepressant that can be used to treat chronic pain. It did help with the pain, but it also had a few unpleasant side effects for me, including:

  • A loss of appetite — I would eat maybe once a day.
  • Dry mouth — I could not drink enough to keep it moist.
  • Increased sweating.
  • A nasty rash.

After reviewing the side effects, we decided Cymbalta was probably not the right choice for my pain management.

Since traditional pain medicine was not alleviating the pain, we decided to try steroid injections directly into the SI joint. We planned for three shots a year, as each dose lasts three to four months. The first injection was incredibly painful! However, I woke up the next day pain-free. I did not know what to do! This joy was short-lived. The pain returned within two to three weeks, but I had to wait at least two more weeks to have another injection.

The second injection was even more painful. I was unable to walk for almost two days. At this point, I decided to go to another doctor, so I went to the Spine Center at Johns Hopkins. The doctor wanted to try a different pain injection. I did two injections of it but found no relief from the daily pain. At this point, the doctor recommended 600 mg of Advil daily and glucosamine. This seemed to make the pain tolerable, finally.

The pain is manageable most days now. I try to stretch the SI joint in the morning and at night, which helps somewhat. I also use moist heat to ease the inflammation at night. There are only a few times a year that the pain is so awful that I cannot walk. Those are the times I usually have to take steroids and muscle relaxers. Those are the rare occasions I take off from work and allow my hip to rest. I am learning to live with moderate pain, and do not even think about it most days. I try not to let it stop me from living my life.


Note: Charcot-Marie-Tooth News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Charcot-Marie-Tooth News or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to Charcot-Marie-Tooth.


Oliver De Battista avatar

Oliver De Battista

just want to say a big thank you for sharing your story, wow it's not easy

Jill Price avatar

Jill Price

Thank you! I hope I can help at least one person.

john avatar


Hi Jill thank you so much for all that you have been doing for CMT patients , I have family members that all have CMT , at this time I don't think I do. I became a DoTerra Wellness advocate to support the healing work that I do ( Reiki, Life Coaching along with some spiritual coaching ) and Im really interested in help those with CMT and of course my family members . Do you have anymore info you can share at this time that would help ? Thank you! sincerely John .


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