Multifaceted Advice From a Brilliant Rheumatologist

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I’ve been collecting info re: are ketamine infusions safe to continue on a regular basis? I reached out to a long distance, extremely experienced rheumatologist friend. He gave me permission to post his compassionate response. I hope his advice helps you as it did me. I went forward with two ideas I’d been muddling over: another round of PT and a meds switch up. Thank you, Dr., for being a diamond in the rough, topsy-turvy world of fibro.

“Dealing with fibromyalgia is difficult as every person with symptoms is different, and there is no one treatment that fits everyone. Many years ago, we used to use tricyclic anti-depressants like amitriptyline or doxepin, but, in the last ten or twelve years, these have been supplanted by gabapentin (Neurontin) and, more recently, Lyrica which I know you unfortunately are unable to tolerate. Also, duloxetine (Cymbalta) and Savella, which are quite similar to each other, are often quite helpful with or without Lyrica or gabapentin.

I have not used ketamine as this is something that anesthesiologists have much greater experience with and should be administered in an OR or procedure room because of potential complications, like respiratory depression or cardiac arrhythmias. I have seen one or two patients who have had ketamine with some success, and we had a visiting professor from Duke who spoke last Spring about pain management. He did not really cover ketamine in fibromyalgia, so I pulled him aside after the talk, and he told me that he had a number of patients who have had very good responses to ketamine. Unfortunately, I do not have any more information to give you about ketamine in fibromyalgia, but, at least at this point, it seems to be safe and effective for you.

Fibromyalgia is unlike many causes of pain, and there is no reason to think that the cause is the same in any two people. I have found the medications I mentioned above like Cymbalta and Lyrica to be much more effective than what was used before they were available. I have not had much success with biofeedback or acupuncture although some people appear to be somewhat better with these.

The most consistently effective modalities that I have seen are improvement in sleep, control of depression, and exercise. Getting into an exercise regimen improves endurance, and there seems to be some benefit to making the muscles active during the day so that they can more easily rest during the night. Rheumatologists often become the main physician to manage fibromyalgia, but the emergence of anesthesia pain specialists in the past few years has added another group of physicians who treat and manage pain from a slightly different point of view. {Note: My main fibro doctor is the latter.}

I can only imagine how frustrating this has been for you, but, from what you have told me, ketamine has made a substantial difference already. I would encourage you to get into some sort of exercise rehab program beginning very simply, but with regular exercises daily, if possible, ideally with a qualified personal trainer. Sleep hygiene including a quiet environment, no TV, phone, or music, and sometimes sleep medications if needed, can all be helpful in improving sleep which seems critical to control pain during the day. Have you had a formal sleep study done by a sleep specialist?

Somehow, I don’t think I have told you anything that you haven’t heard before, but that’s the way it is with a problem as difficult and often unique in each person as fibromyalgia is.”

💜

2 thoughts on “Multifaceted Advice From a Brilliant Rheumatologist

  1. It is useful to have a rheumatologist’s honest opinions, Jennifer! The gent I see, whilst being a very nice man, is really not very helpful and says I am managing my condition well myself…..oh and that naproxen has no real place in chronic pain, fibro or Ehlers Danlos joint pain. Hmmmm…..I am able to take pregabalin and have used the max dose for years, but I am pleased to hear it is still considered to be a good choice. I must get my exercise sorted though…..tough on those rough days though, eh? I hope that you continue to find some relief with the ketamine, Jennifer and thanks so much for sharing this! Claire x

    Liked by 1 person

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