Interesting debate on Fibromyalgia

Found this surfing through one of my websites this morning. (I think all of my patients are snowed in, hope they don’t shovel their way out!) :slight_smile:

It gets a little argumentative, but points up kind of nicely the debate that goes on about this disorder and our lack of fundamental knowledge about it. :sigh:

Hope the link works, if not I could email it to anyone who was interested.

http://www.medscape.com/viewarticle/735369?src=emailthis

I have been saying the “chicken and the Egg” thing for years…Diagnosed 20 years ago and sufferer for many, many, many, more. I fall into ALL the other symptom profiles of the study… so now what? wish they could find out something I don’t know. Glad to know they are still working on it though! Personally I have found food restricitons and only moderate excercise to work the best for me for some of the symptoms, but the sleep disorder, I was up till 5 this am, which is just wrong in soo many ways!!!

Could you email it to me. Wants me to log in. No sleep issues here either. Lol. Posted at 2:51am from iPhone in bed. Already raked two HOT bathes, all my meds, and a hydrocodone. I don’t dare throw a sleep med on there for fear of doing myself in. This flare is annoying the hell out of me though while I wait for all the new meds to do their thing and the time off work to help too. Almost forgot my email Addie. Kervaski52@aol.com

Great article …Thanks. But leaves me still confused…Do i have a mental problem …lol…Cause the sex abuse is not a factor. Between the Lyme and the Fibro it has send me in a tail spin…and I cant seem to get relief…Ugh…
I love all the articles I can get cause even thou my Rhum Dr said I have fibro …we cant test for it!!

Please email it to me as well!

I would appreciate it if someone could email me a copy also. Thank you :slight_smile:

I signed up so if anyone else would like the article emailed to them just send me a PM. BlueMoon I need your email addie to send it to you. I admit I only made it part of the way thru the article, but my brain is mush today. I will have to read it later when I can actually concentrate.

[QUOTE=spook1;5363623]
Great article …Thanks. But leaves me still confused…Do i have a mental problem …lol…Cause the sex abuse is not a factor. Between the Lyme and the Fibro it has send me in a tail spin…and I cant seem to get relief…Ugh…
I love all the articles I can get cause even thou my Rhum Dr said I have fibro …we cant test for it!![/QUOTE]

Are you being treated adequately for Lyme? Adequate treatment should get rid of the fibro symptoms.

Could I also get a link to the article? I didn’t think it would get any worse, but I feel the bad days are becoming more frequent. Thanks, Peg

It is hard for me to take seriously any doctor who insists on writing “fibromyalgia” in quotes. It makes me feel that he is so frustrated in dealing with these patients that it must somehow be their fault in some inexplicable way.

Me personally? I think in the long run it will turn out that what we call fibromyalgia today will end up being a couple of different disorders, and I suspect that at least one will be infectious.

But the “debate” (I use the quotes to belittle it :slight_smile: ) seemed pretty pointless to me. Not much information in it. Not much to help any patients.

I was discussing something I saw online with my best friend who has lupus and has had it since she was 13 (now 38). She was reading up on fibro in the waiting room for her last rheumy appointment. We got to talking about how some John Hopkins study showed that the pain fibro patients feels is real. I got ticked off and started going off. She stopped me me and was telling me how “no, it was thought that the brain was misinterpreting signals and that there was no real pain there.” Well, excuse the hell out of me. I live in this body and I can sure as hell tell you that when I am flaring it is REAL pain. So glad they had to do MRI’s and spend who knows how much money to figure that out. Of course with doctors out there who still don’t believe it’s real of course they do. Unreal. I think I need to go lay down on my fainting couch now and have a rest. I feel a bit unwell. Grrrrrrrrrr.

(Cause I just love my live with my horses 14 hours away at my best friends house and giving up my lucrative career that was going to make me very well off before my brain quit working. I also am so happy that I bought a season pass for the ski hill I live near and now have to watch the best season of skiing go on without me as I spend the whole year flaring. I will get to spend it going to doctors appointments. I now have a FMS diagnosis so I can’t just say I’m not feeling well. Now I get to wonder if I have EDS too and will pursue that with the neuro when I see him in 2 weeks too. Ok rant over. Back to my fainting couch I was going to rest on.)

I didn’t make it past the first page of the article either because my brain just isn’t focusing right now. I go all Charlie Brown “whhhaaa waaah waaa wha whaa whaaa whaa whaaaa”.

[QUOTE=poltroon;5377877]
It is hard for me to take seriously any doctor who insists on writing “fibromyalgia” in quotes. It makes me feel that he is so frustrated in dealing with these patients that it must somehow be their fault in some inexplicable way.

Me personally? I think in the long run it will turn out that what we call fibromyalgia today will end up being a couple of different disorders, and I suspect that at least one will be infectious.

But the “debate” (I use the quotes to belittle it :slight_smile: ) seemed pretty pointless to me. Not much information in it. Not much to help any patients.[/QUOTE]

As usual, Poltroon neatly sums it up…

She needs to hear my pain lecture! “Pain” is the brain’s perception of (to put it simply) noxious stimuli. So even if the brain is “misinterprating”, it’s still pain and its still real!

That was my thought. It my brain says it hurts, then it hurts. I guess science needs “data” and gotta have MRI’s to prove the pain centers light up and all that crap. Alright, back to cooking my back with this little heating pad and hoping the infrared pad I ordered almost a month ago shows up today.

Out of curiosity where did you order your infrared pad from? I got one (I am a PT that treats FM, do not have it personally) and mine was certainly a slow ship…but it did come recently. Hubby does not have FM but the day it came he had overdone some construction work on the farm I had him test out the thing. He thought little glowy light bulbs were nuts for pain relief but he used it to humor me. On ONE side. Then he got antsy and wandered off. The next morning he got up. He said the side he used my sillly lightbulbs on felt better. The other side was still sore. So…my home “guinea pig” is now a convert!
I didn’t read the article yet…will do…but in my years of dealings with FM it is not just about the muscle pain. Or pain perception…that is only one part of a whole syndrome of health issues associated with it…so the pain is (while the most well known part) certainly is not the only problem that FM folks deal with. And it is not all in the head (literally and figurtively)…it is in the vagus nerve (which is NOT associated with the central nervous system) and the digestive systmes among others.

Ah yes, the vagus nerve connection… I did not realize that one until after my fall surgery. Playing connect the dots is tricky…

Well, the infrared pad has NOT showed up. I was given the run around by Balkowitsch Enterprises Inc on Amazon.com. The pad I paid for but never received was the Venture Heat KB-2436 Therapy Infrared Heating Pad which is a 24" by 36" pad for $129.

After a month long wait and two false tracking numbers the company claims the manufacturer gave them false information and they have promised to ship me a free unit if I removed my 1 out of 5 rating for them on Amazon. I have in writing from their CEO an email stating that and am waiting to see if my unit shows up because I do want the freaking thing. My back is the worst right between my shoulder blades. My lower back is also bad at times as well, but lately the thoracic area is feeling “crushed” and needs attention. I am going to make a point to ask my neuro about it this week when I see him.

I’m all for helping myself as much as I can. If the pad doesn’t show up from this guy I will raise hell as I promised him in my return email and then I will order it from someone who can ship it NOW. I ordered the thing December 30th and still don’t have one. It’s not like I needed it or anything. eye roll

“no, it was thought that the brain was misinterpreting signals and that there was no real pain there.”

Ummmm…No, the brain is getting signals that there IS real pain there, yet there is no ‘real’ cause for the pain signals getting sent. In other words, it HURTS but it should not…therefore, there is a ‘problem’. If you don’t want to call it fibromyalgia, ok, but something is wrong. The fact that nobody has, as yet, figured out just exactly what is going on, or how to fix it, doesn’t mean there isn’t a problem…after all, male doctors used to think PMS was just overreactive, bored/rich/hypochondriac women. Doesn’t mean menstrual cramps don’t actually hurt.

My dad was so sweet, he went to a fibro informational talk after I was diagnosed…pretty much apologized for thinking I should have always been in school when I was younger. My sister had perfect attendance, but I missed a lot of school because I was fatigued and felt icky…doctors couldn’t find anything ‘wrong’…I still felt icky,

A few people have PM’d me requesting the link to be emailed, and I shall do that. But if you haven’t checked out Medscape because of their requirement for a log-in, it’s a pretty darned good resource, NOT spammy, minimal advertisements, a robust search feature and lots of good information in many formats on FM and of course thousands of other topics. I recommend it, with no ulterior motive except my own selfish desire to steer my own patients to GOOD and REPUTABLE websites. Makes my life infinitely easier! :lol:

Thanks, delta, I don’t like just signing up for everything I come across on the internet.
Turns out that I already was a member, hadn’t accessed anything since 2003!!