[Jane E Harmon]

Like others have reported, I, too, am on both prescription and OTC medications for several types of pain.

Joint Pain
The treatment of MS with steroids has left me with devastating side effects; possibly the worst among them is avascular necrosis (AVN), also known as osteonecrosis (ON). Steroids have the unique ability to cause what amounts to a stroke in bones, especially where they form a joint with one or more bones, when fat globules cut off the blood supply to the bone. I first lost both hips, and later my knees, with fractures in all four joints. The really devastating part of this disease is that once one joint is affected you are at risk of losing others for the rest of your life. If surgical procedures early on are not effective, the standard treatment is joint replacement.

There are several opioids I cannot take; finally, we settled on Fentanyl patches and either hydromorphone or hydrocodone. They allowed me to be out in the community a good deal of the time until my body adapted. When the pain got worse despite increased dosages I slowly decreased the dosages, then stayed off of all narcotics for a year. And essentially stayed in bed all during those nearly 3 years.

Chronic Regional Pain Syndrome, Type 1 (CRPS)
As my hip joints remodeled, the left leg rotated out to the point that my ankle rested on the bed all of the time except when lying on my right side. That bony prominence, the left lateral malleolus, became very painful. I tried many ways to keep it from touching the bedding, finally settling on a sleeve designed for hockey players to pad both malleoli with a silicon pad. In the meantime, both Achilles’ tendons began to burn where they were in contact with the bed, the soles of both feet began to burn, and finally, I hope, both feet and ankles burn in the pattern of anklet socks. (I am concerned that CRPS may be developing in the area where the hooks from the leisure bras I was wearing in bed pressed on the bed; it continued after I stopped wearing the offending garment.)

This has all been helped with certain narcotics and several supplements.
Narcotics which address both types of pain:
1. Nucynta
2. Methadone
Other prescription meds:
1. Gabapentin entacarbil (Horizant) has been a game-changer for me. Normally, gabapentin is only absorbed in a short area from the end of the stomach to the beginning of the gut. One form, Gralise, works better by keeping the drug in that area longer. Horizant works so well because the gabapentin molecule is bonded to a molecule the body recognizes as food, so it becomes available for absorption for the entire length of the gut (small intestine)!
2. Nortriptyline, an antidepressant.
Supplements which can help, especially neuropathic pain; all have been ordered by my pain specialists:
Magnesium, 250 mg. twice a day. It also helps relieve the pain in my hips resulting from spastic muscles pulling on the dead and fractured bones. Ask your doc which forms might work best for you, or try different oral forms. I’m currently using magnesium orotate with very good results.
Benfotiamine
DIM
turmeric/curcumin complex
fresh broccoli sprouts, which we grow
DLPA

Currently, methadone is helping me be up and around in the community more, although bumps, whether on the road or wherever I might go in my chair, are still mighty painful. And the CRPS is not as well-controlled as it was on Nucynta, so I will be asking if we might try combining the two.

I hope some will find this helpful.