Fibromyalgia Support Group
You're not alone in your pain. Fibromyalgia is a condition that can be difficult to diagnose and manage. If you're trying to cope with pain throughout your body, sleep problems, general fatigue, or other common fibromyalgia symptoms, you're in the right place. The community is here for you to talk about therapies and share your challenges.
Hi Fibromites,
I went to a pain clinic seminar yesterday (STEPS- in Perth WA for anyone in Oz). For me, it was kind of like a review of all the things I have learnt over the last 8 or so years while I have had fibro. Keep active (and ways to do this without causing pain flare ups), minimise stress or get help to deal with it, going over the meds available for chronic pain. They went through theories of pain like neural sensitivity as well. All good stuff but most long term sufferers of fibromyalgia would know most of the information.
The first part was presented by a psych- he was great. The second was from a physiotherapist. We all said a few words about our condition and all the other patients were accident victims but this physio- OMG she kept constantly referring to pain being in the mind- LIKE FIBRO- and we are talking somewhere between 8 and ten times this was mentioned in a space of two hours. I got what she was saying- she was actually trying to tell the accident victims that even if there is no damage you can feel pain therefore pain does not always equal damage.. blah blah but every time she said this kind of thing she looked or gestured at me so I left there feeling like some sort of leper.
Anybody else had any experiences like this?
Coralie :)
I went to a pain clinic seminar yesterday (STEPS- in Perth WA for anyone in Oz). For me, it was kind of like a review of all the things I have learnt over the last 8 or so years while I have had fibro. Keep active (and ways to do this without causing pain flare ups), minimise stress or get help to deal with it, going over the meds available for chronic pain. They went through theories of pain like neural sensitivity as well. All good stuff but most long term sufferers of fibromyalgia would know most of the information.
The first part was presented by a psych- he was great. The second was from a physiotherapist. We all said a few words about our condition and all the other patients were accident victims but this physio- OMG she kept constantly referring to pain being in the mind- LIKE FIBRO- and we are talking somewhere between 8 and ten times this was mentioned in a space of two hours. I got what she was saying- she was actually trying to tell the accident victims that even if there is no damage you can feel pain therefore pain does not always equal damage.. blah blah but every time she said this kind of thing she looked or gestured at me so I left there feeling like some sort of leper.
Anybody else had any experiences like this?
Coralie :)
Out of curiosity, what meds did they talk about?
I don't think I could have kept my mouth shut.
I would have been asking her to prove her theory with documented studies.
I would have asked her why she felt so strongly about this.
In my opinion, these seminars are often one sided. They toss out the clinics view points on pain and how people should manage it.
I would have left.
I'm sorry you felt that way. And I'm proud of you for seeking out some alternatives to helping you by going to this seminar.
Peace- They went through the whole range- I thought it was a really good overview. I will attempt to summarise.
(Please remember that I will do my best to not to use Aussie brand names but sometimes I don't know that you might call something different)
They grouped them into ... "Tablets that may help the "nerve" messages"
Amitryptaline (and other tricyclics)
Anti-Epilectics- Lyrica, Gabapentin, tegretol & Valproate.
Analgesics-
Big support for Tramadol (Tramal)
Opiates- Big support for BuTrans.
then a tiny bit about oxycontin etc. Big issues in Oz atm about opiate misuse- you have to sign a opiates contract to be in the clinic and be prescribed opiates.
Slow release panadol- I think you call that acetominaphen for arthritic pain.
Other Options-
NSAIDS voltaren, advil, celebrex etc
Fish Oil
Glucosamine
Then things like joint injections, epidurals and something called a rhizotomy
Effexor and Cymbalta were also mentioned.
I WILL note that there is nothing about muscle relaxants in here. In Oz you either have baclofen or valium for muscles. There is nothing approved in between. I WISH so badly that I could get my hands on some flexeril or something like that and at least try it. I guess its not meant to be :(
That was just a summary of the drug options they covered. There was a lot more. Some of it was useful to review the things I've learnt over the last decade.
Lets hope I don't get singled out on Friday.
Coralie X
So much better than those who just sent you off to PT or just tell you to exercise.
I really hope these people can help you. A multi discipline approach can be very useful if they don't have their heads up their asses.
Let us know how the next meeting goes!
I wish I was able to just relax upon command. Not happening do to Defective Mind Syndrome, along with Defective Body Syndrome. I'm on the transplant list to receive a new body. They tell me I must wait for some one to be out of mind before the transplant can be completed.