hi everyone i hope you remember me i'm the kiwi.I have a question,i read somewhere that fibro can be picked up in a brain scan,but for the life of me i can't remember where.i have sadly met up with 3 little girls near to our home with fibro and as you can imagine we are all treated like we are a couple of sandwhiches short of a picnic.i even tried contacting our local member of parliment..but no good she managed to tell me fibro has a new name and that she wasn't prepared to put her name to anything with fibro in it as she would be laughed out of the building,so if i could come up with something a bit more concrete i might have a better chance at getting someone to take me seriously....hope to get a reply...jpk
long time. good to see you again. gee, i am not sure what you are asking for. i have not heard anything about a brain scan here in the u.s. i will ask my mom to research it. she is a whiz on the computer. if it is out there she can find it.
would this gift us with proof and thus treatment fitting a sane person? maybe. it takes a good bit of time for an illness once thought of as in the mind to be recognized as a condition of the body. in the meantime we all pay the price. me, i could care less who thinks i am loopy, just treat me.
it is good for us old hats to be gifted with meeting our young ones. we can guide them so they will not be so afraid.
I haven't heard about a definitive test for fibro w/MRI or CAT brain scan. However, tests like that are sometimes done to rule out other diseases, like MS & who knows what else, prior to giving a fibro dx.
The diagnosis of fibro is made largely on the basis of excluding other diseases, plus consideration of symptoms of fatigue, pain, & tender points, typically in all 4 body quadrants.
I have heard that there's a common brainwave (EEG signature) pattern in fibromyalgia, esp. during sleep. But whether the brainwave pattern is a "cause," or whether is it an adaptive pattern as a result of living w/chronic pain, is not really understood.
If you have run across research or other info that suggests specific abnormalities in a certain part of the brain, could you describe that for us? Posting websites is tricky (read the rules) ... and the mods are strict, so it's usually better to summarize info.
Sorry you're having trouble getting taken seriously. Here in the USA, fibro is a recognized rheumatological disease, but people still have to perservere to get adequate treatment (and testing for contributing causes, like hormonal). There are many of us who just don't get adequate treatment & lead lives that entail a lot of suffering & reduced functioning.
IMO, the efforts of Big Pharma to "psychologize" fibro do a disservice to us all. Yes, there are psych aspects, but those occur in most every disease. Treatment with psych meds alone is "the cure" for only about 1/4 of fibro sufferers.
AS you say, if we could get researchers to find a physical cause, even a definitive test for fibro, we would ALL get more respect.
Thanks for the replies to my query.I knew it was a long shot.
I asked my husband if he knew what i was talking about and he said yes!So now we have to track down the article we read.what i read wasn't so much a cause but proof of it being a physical illness(if you know what i mean)
To answere the question from the lovely person who replied....i live in auckland New Zealand and everyone who hears the word fibromyalgia says "what!"If you say tapanui flu some of the older ones know what you are talking about.The name came from an area in NZ where a bad flu epidemic left a lot of people with sore joints and fatigue,anyway thanks for trying to help i hope to get lots more...jpk
hi jpk i also have fibro and am also a ex kiwi now living in oz...i understand what you are saying about tapanui flu i think it may be fibro ....
in aust i was dxd with fibro so they know here what it is i also have ms and have found most doctors here are sympathetic and listen to you
good luck to you
I must agree with the others on this. I have done lot and lots of research for personal use and for use for our fibro family here, but this is something I have never come across - the brain scan being used to diagnose/determine if a patient has fibro I mean.
The only thing I can think of is perhaps there is a scan that is used to determine the amount of pain the body goes through, and then treatment is given and then a further scan is done to determine the effect of the treatment. Not only for fibro of course, but for all medical conditions that put us through so much pain. It seems as thought this is somehting that could be done nowadays with the advances in medical science and treatments. It would have to be done patient to patient as we all have different painthresholds. Just my thoughts on this.
Thing is though we have to try so many different treatment for any illness and determine ourselves what works best for us. Going back to fibro though the only way I know personally for diagnosis is based on the location of the pain as well as the presence of tender points. Doctors firmly press designated areas of the body to determine whether the person feels pain in one spot (a tender point) or whether the pain seems to travel (refer) to another area (a trigger point). Diagnosis requires tenderness at 11 or more of 18 designated tender points.
Maybe calling fibro something different (????), as was said to you, it might be that she was thinking of CFS - chronic fatigue syndrome or any of these types of interconnected problems that are to do with fibro type symptoms. Whatever she thinks, she is wrong to dismiss it out of hand, it is definitely discrimination on her part anyway as this can be a disabling condition for some people and if it affects anyone who goes to her for help, she is supposed to be fair and not judge before she knows the full story. Sorry it just gets me so mad when people do this.
Hope this helps.
I am not a medical doctor, I only speak from my own experience of the illnesses I discuss here.
Last edited by goldenwings; 06-04-2006 at 07:47 AM.
I had a brain scan to rule out everything else that might go wrong. Once that was determined in tact they said the only thing else it could be was fibro since I had every possible symptom there is listed (well maybe minus one or two). ~
Hello to everyone: The subject of brain scans is something I have a great interest in. Before I was actually dxd with Fibro, my brain scans were at question by my doctors. They all wanted to say I had MS or had mini strokes, but none of them would know what to call it. I just went thru a series of brain scans including 2 MRI's and 1 MRA which is suppose to show even more than an MRI. I am told I have an abnormality in the White Matter of my brain. Again my drs. are confused. They just don't know what it can be. I'm wondering if this is connected to Fibro at all.
Has anyone else heard of this? I will stay in touch.
NEURO S.P.E.C.T. - it's kinda new, they have used it to help diagnose autism and OCD in children succesfully and even in adults. I really wish I could post all my reasearch links up but hopefully this one artile will shed some light...
The possible effect of clinical recovery on regional cerebral blood flow deficits in Fibromyalgia: a prospective study with semi quantitative Brain SPECT Scan.
Adiguzel O, Kaptanoglu E, Turgut B, Nacitarhan V.
Department of Rheumatology, Cumhuriyet University, Sivas, Turkey.
OBJECTIVES: Regional deficits in cerebral blood flow have been reported in a few studies of Fibromyalgia; however, there is no information on the effects of treatment and clinical recovery on these abnormalities. We evaluated the effects of amitriptyline treatment and consequent clinical recovery on cerebral blood flow changes in Fibromyalgia. METHODS: We assessed cerebral blood flow with a semi quantitative functional brain mapping technique of single-photon emission computed tomography (aka S.P.E.C.T) in 14 patients with primary Fibromyalgia before and after 3 months of amitriptyline treatment. Patients were followed by visual analog scale, tender point count, and Beck Depression Inventory for clinical improvement. RESULTS: There was statistically significant improvement in visual analog scale and tender point count after treatment. Beck Depression Inventory did not change significantly. Statistically significant blood flow increase in bilateral hemithalami and basal ganglia and decrease in bilateral temporal, left temporo-occipital, and right occipital lobes were observed on single-photon emission computed tomography after treatment. CONCLUSIONS: We speculate that these findings could indicate that deficits in cerebral blood flow in Fibromyalgia improve parallel to clinical recovery.
dunno how old this 0ne is though. But I have oodles more research on Neuophysiology research that also indicates that oxygen delivery is a big deal also.
interesting. the one line that jumped out at me is the one about oxygen delivery. more confirmation for me that our breath is so vital to our pain levels. this is something we can "cure" by remembering to breath slowly and deeply when we are in pain. please know i am being just a tiny bit "bratty" when i use the term "cure".
i just had an mri done. i had a stroke this past march. i will ask about the scan when i see laura the end of this month. she stays on top of new stuff for us fibrokids.
thanks again girlfriend!
Hello again: Iam responding to the post regarding oxygen delivery to the brain of those with Fibro. Along with the series of MRI's and MRA, I was put on oxygen for about 4 weeks. My husband and I realized that I was doing much better as far as thinking and less pain. Also some GOOD sleeping habits. Drs. took the oxygen away because of insurance costs...my husband and I are still fighting it out with our insurance and Drs. to have access to oxygen in the pm. I also wanted to let you know that I take Niacin as a supplement...which helps to open the small blood vessels and allows more blood flow and oxygen to the brain. I DO feel a difference with it.
All this new stuff coming to the surface regarding Fibro is getting interesting. There just has to be more to it to cause this much pain. Let's all keep up with research and pass it along.
Good Luck and Good Health
I have had a couple of MRIs on my brain also. They concluded that the 1" X 1.5" x 1" dark place was a stroke--not the mini kind. I can remember one day sitting on the sofa putting on my tennies and the whole world kind of "shifted". VERY hard to explain. I have had trouble off and on with walking since--I "lose" my legs. They just disappear. That is also very hard to explain. The location of the stroke is in the motor area.
Anyway, all this is to say that at first blush it was MS, but then "no" since I had only one dark place (only?). However I have had the DX of Fm for about 8 years and symptoms for over 25 years. The oxygen angle I think may be a really good explanation for FM and seems that would show up in a specialized MRI--someone above mentioned it.
Kiwi, I wish there was "proof" like you do. I would run with my proof to everyone who thinks I am just lazy and maybe even dance around!! Oh boy...I am getting tired just thinking about it....har, har.........
something I'm trying with the oxygen delivery is a product called cellfood sold a health food stores. about 28 a bottle. It's a liquid you put in your water. Also I hear there are Oxygen Bars around here in Chicago so I'm gonna check it out. Oxygen delivery is interesting. You have to do major research on the blood. The Mitochondia. It has been known to swell up when you smoke. But, there is a test available during sleep study or maybe by itself where they monitor oxygen delivery in the blood. But most importantly we need to examine the blood flow in the brain. I feel so very solidly that Pituitary and adrenal function is a big deal. Once I do more research, calling a hemotologist At Rush Presbyterian (which has the most comprehensive Sleep and testing lab existing as I know) Gotta love those liberal states!
I'll post more findings this next week. (one about pain and stress and sleep relief through COX TECHNIQUE (very important as most of us have a curvature in our lower backs) and also acupuncture with electrical stym connected to needles. Much pain relief that way guys... I have witness 3 patients in my circle get relief that way. Look for chines chiropractors, that's the trick, cos they most likely do accupuncture too, and will bill your accu as "physical therapy" too fool ins companies who don't cover...