Posts Tagged ‘Fibromyalgia’

Updates on Pain


Hi Everyone,

I have had a lot going on and I wasn’t able to post last month but I am back and hope to write three posts this week.  Most of you don’t know I like to visit second life now and again, lately it has been again and again lol.  Right now, I am in a virtual world at a writer’s camp out site. Nothing like writing in the woods.  Today they are having an all day writer’s marathon.  I don’t think I will be able to stay for eight hours but I hope to use the time to get out these posts.  Anyone who is on Second Life, my avatar’s name is Eppie Shoreman.  Any of you who are on SL or plan to be on SL, there is a support group for chronic pain at “The Centering Place” on Second Life.  Contact me for details.

Now I am going to give you some updates on pain.  I’ve been meeting many people in the last few months who have other illnesses and also have developed chronic pain disorders.  Many of them are suffering greatly because their doctors do not know how to treat their pain.  I encourage all of them to see a pain management specialist.  Unfortunately, as many of us know, even seeing a specialist is no guarantee that your pain will be controlled.

There is some new information in the American Pain Foundation’s Spring Newsletter.  For those of you who are interested in Occupational Therapy there is an article written by an Occupational Therapist.

In “Health Decision Putting Your Best Foot Forward,” the author talks about challenging the decision that the doctor knows best.  Most of us who have chronic pain disorders have found ourselves in the difficult position, should I listen to this doctor and go quietly out of his or her office without adequate support for pain control or should I speak up for ourselves and try to get the medication and therapies I deserve?

Getting adequate pain relief unfortunately often  means seeing several doctors until you find one that will really listen to you and agree to be part of your team in helping you achieve good pain control.

I have found that bringing Selch to my appointments has been a really big help.  Having someone go with you to your doctor’s appointment who is knowledgable about your condition and is willing to stand up for your rights goes along way in helping you to find  health care professionals that will help you with your pain.

If you don’t have a friend or a relative who can fill this role, I suggest that you check out local pain support groups in your area and see if you can find someone in the group who is willing to be a “patient advocate” for you.  If you can’t find someone locally search for support services available in pain foundations and also visit different pain support groups on the Internet.  Post that you are in need of someone in your are to act as a “pain advocate” for you.  You may not find someone right away but I’ve found that when I am looking for support, persistance matters.  If you are in too much pain, ask a relative or friend to do this for you.

I cannot stress how important it is for anyone with a chronic pain disorder to get the help they need to achieve good pain control.  Any of you that have other ideas and experience to share regarding finding help for pain control, feel free to reply to this blog post.

Karen Richards writes some interesting articles on pain.  See “Growing Pains, a Predictor of Fibromyalgia,” She refers to an article in Reuters and talks about misconceptions about growing pains and how growing pains may be an early indicator of fibromyalgia.

Another very interesting article by Karen is “War on Drugs Has Ended – What Does This Mean for Pain Patients?” If you have read my blog, you know that I have posted more than once about the “War on Drugs.” Karen writes, ” In May 2009, nearly four decades later, Gil Kerlikowske, the new director of the White House Office of National Drug Control Policy (ONDCP), declared the war on drugs to be over.”  This guy must not be living on the same planet as those of us with chronic pain disorders.

Health care providers and even pain management specialists in growing numbers are refusing to give people who have chronic pain the narcotics they need to function day-to-day in their lives because of past DEA actions, pending regulations and the constant media exposure of the continuing War on Drugs.  Totemism regarding narcotics is still prevalent.  There are still so many people saying that we need to get rid of these evil narcotics that are destroying so many lives.  Eliminating prescription narcotics will do nothing to stop people from recreationally using narcotics.  They will just go to another readily available source to get their drugs.  Pain patients are left without adequate pain control.  When will the media and the government start caring about the millions of people in the world who are suffering from chronic pain?

About the ONDCP’s educational efforts regarding the needs of chronic pain patients, I am afraid it is too little too late.

The Pain Monitor from the APF has some interesting info for people with chronic pain. It has news information about different pain topics as well as resources for chronic pain patients.

These are some pain updates for April.  As always, I hope to be your faithful correspondent.

Fibromyalgia, latest news


I don’t have Fibromyalgia  but I do have FM symptoms.  I just read the following articles and I thought they might be helpful to some of you:

See the following information from the American Pain Foundation about a webinar on  Fibro Treatment and Management.

Also see, Fibromyalgia:  Five things you need to know and Spotlight on Fibromyalgia.

Take care,


Flupirtine: New Help for Fibromyalgia, FTD?


As I mentioned in an earlier post, I bought a small quantity of flupirtine tablets from Germany. I wanted to see if it would help some of my pain that my usual opiates (fentanyl, methadone, hydromorphone) do not touch.  One type of intractable pain resembles Fibromyalgia (FM), an all-over achy pain, particularly deep in the joints, that comes and goes.  When it comes, it stays for hours or sometimes days.  It never just starts and then goes away.  I don’t know if it’s actually FM, or just another facet of my RSD.

Flupirtine maleate is a centrally acting, non-opioid analgesic that has been available in Europe for years.  It was used for lower back pain and post-surgical pain, and then for pain, generally.

Here’s the really important thing.  It also has CNS neuroprotective properties.   This is leading to its possible use for treating CNS neurodegenerative syndromes such as Alzheimer’s Disease, Multiple Sclerosis, Parkinson’s, Huntington’s and Creutzfeldt-Jakob disease, including cognition in CJD.  It might be useful for FTD treatment, too.  Flupirtine is currently undergoing FDA trials for treating Fibromyalgia.  It is also known in Europe as Katadolon and Trancolong.  It is not available in the USA, as it is not FDA approved.

Typical dosage for adults is 100mg three or four times a day, half that for children.  I’m not sure about long-term use or side-effects, yet.  Most of the information is hidden behind registration walls, and I haven’t had time to do all the registrations.

Here is what happened with my first dose:

  • 3:00 pm — fibromyalgia-like pain starts
  • 3:25 pm — took 100mg flupirtine by mouth
  • 4:45 pm — I realize the fibromyalgia-like pain is gone
  • 4:55 pm — bad headache in upper right forehead
  • 5:30 pm — took 1500mg acetaminophen and a short nap, and the headache’s gone

I think the headache is a side-effect of the flupirtine.  The location is exactly where I get a headache and feel electric sensations when I have flare-ups of FTD symptoms.  I doubt that’s a coincidence.  And headaches were reported as side-effects in a good article on flupirtine’s half-life for young, elderly, and renally-impaired patients.


I got the flupirtine from, an internet pharmacy in Germany.  You have to fill out a brief medical history for a doctor to review to get the prescription.  The process was very fast, it only took a few minutes from submitting the history to get the prescription, and they shipped it the next day.  We got it in about a week.  The flupirtine came in 400mg tablets, so Selchietracker got a pill cutter, cut the tablets in half and then cut those halves in half to get the 100mg individual doses.  He thought it was kind of neat that the box of “Trancolong” also had the name in braille.  Geek.