Hi everyone. Well I was shocked today after reading about the blood test that can be done in America. It also said that Fibro is a Degenerative Autoimmune Disease! So if thats what we have why oh why do we all have to go through all these medical and fending and proving all the time?
Shocked!: Hi everyone. Well I was... - Fibromyalgia Acti...
Shocked!
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sadoldred
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Wow how interesting! Where did you find the article? Any chance you can post it on here.
Probably because we don't live in the US and it's not accepted here yet. Be good to know for sure though, maybe there is a way we can get it recognised over here x
May wait a bit before I get excited
chronicfatigue.about.com/b/...
• in reply tobodeia
Yes I am afraid it is too early to get too excited... A lot more reaserch needs to be done .... And a blood test you have to do yourself... Not available at the drs....
My consultant diagnosed me with fibro..and all information about it...so how can it not be recognised? Xx
Fibro is one of those conditions some medical professionals still don't accept as a genuine condition.
I too was diagnosed by my consultant but when seen by one of his colleagues while he was on holiday this other consultant more or less undermined his diagnosis and said my symptoms could well be explain by my other conditions and fibro was all in the head.
I was very happy when my own consultant returned and reassured me I wasn't crazy.
Unfortunately even in the medical profession they still have a long way to go before it's truly accepted and with that being the case is it any wonder lay people like ourselves have a hard time getting our friend and colleagues to accept our condition.
Up until 2 years ago I was working as a HCA on a busy surgical ward I just happened to walk in on a conversation in the staff room when a young RMO was berating fibromyalgia as not a real condition, something all in the head. I gave him a piece of my mind there and then and encouraged him to consider doing his research on Fibro. I don't know if he has but it's the young ones coming through the ranks who we need convincing as they are the medics of the future.
At 20 yrs old (after having baby) I developed discoid lupus and was told it was 'nerves' until I was in my 30s when it was properly diagnosed (note auto immune condition!) My son developed Crones which is also auto immune and he died unfortunately, a few years after I got sarcoidosis (auto immune) and on recovering from that I developed Fibro which is now approx 11 years ago so I would not be at all surprised if fibro is auto immune too!!
I am 69 now and still going, maybe not exactly strongly, but try to enjoy the positive times, few though they may be. lots of encourgement and hugs.
What a wonderful strong person you are ((((hugs)))
Is this it?
"FM/a® – The Fibromyalgia Test
Lessens the Burden of a Lengthy, Costly, and Painful Diagnostic Journey
Finally the source code that uncovers the medical disease called fibromyalgia is available via an objective, multiple biomarker-based diagnostic test that has documented the altered immunology of the fibromyalgia patient.
Two separate medical studies were conducted at the University of Illinois College of Medicine at Chicago which investigated the uniqueness of the fibromyalgia patient. Via the University of Illinois College of Medicine at Chicago, Department of Pathology, a CLIA certified laboratory, a rigorous analysis of fibromyalgia patients versus matched healthy control individuals revealed a distinct set of immunologic markers in those who have fibromyalgia. This test proves that there are no boundaries when it comes to age, gender or ethnicity in reference to the development of fibromyalgia.
Fibromyalgia can now be documented as a real world affliction and not the speculative, non-quantifiable collection of miscellaneous complaints composed primarily of a subjective syndrome of symptoms. Fibromyalgia ceases to be a “wastebasket diagnosis ®.” . . "
I recently took part in a DNA study on Fibro run by Dr Frances Williams, Senior Lecturer and Hon Consultant Rheumatologist at King’s College London (St Thomas’ Hospital).
You need to fill in a pain questionnaire about you and your symptoms & donate a blood sample at your GP surgery (they send you out the blood sampling kit) - you have 3 vials of blood taken and then post it back to them in the special prepaid box. I don't know it they're still looking for volunteers or not but they have a contact form here: dtrsurvey.co.uk/Fibrogene/
Hi Lima, I've just filled in the form online so hoping that they still need volunteers. Thanks for posting 
• in reply toLima6MCT
I also took part in this survey , I will do anything to help find a cure for Fibro
• in reply toLima6MCT
Sadly they are no longer looking for volunteers
this does make sense I have a vit D deficiency too so I take it is part of fibro ??
• in reply toDonna17
It can be some people with fibro have no vit D definiency some do... I don't .... But others do that's why fibro is so complex no two people have exactly the same symptoms although share many ...
VG x
A vitamin D deficiency and Fibro have similar symptoms, so 2 things can happen. Sometimes Fibro is mis-diagnosed when it's actually a vitamin D deficiency. And sometimes Fibro masks the symptoms of a vitamin D deficiency so that this isn't picked up on and it seems that the Fibro won't respond to treatment because part of the symptoms are from the deficiency,
Am I right in saying that Vit D deficiency is the new medical "Fad"? I have had fibro most of my life, and only found out about the "Sunshine Vitamin" deficiency symptoms recently through a news article. I have had the test (I actually asked the GP for it and she was pleased to do it - no arguments as normal) and am "in the red" according to the GP and am now on Vit D "Bombs" as I call them to get me back up to level. After I have recovered fro a chest infection, I hope to soon feel better, and the GP told me that a lot of my symptoms could clear. Howevr, I have not had this test before as standard for the symptoms, and it is glaringly obvious that they are similar. That made me wonder if this was another Drug company led situation, where GPs are getting an incentive to give out the supplements??
My daughter went to see the consultant he has diagnosed her with fibro then said he wouldn't see her anymore..She has had pshio and as from today she is having sessions in hydro pool but then that's it.It doesn't help that she wont except it but she is slowly coming round she hates water but we are going today and she has asked me about this site so its starting to look promising .Its really helped reading all your thoughts on fibro its helped me understand her pain .Thanks .hugs & Kisses xx
I`m trying to find the link I saw yesterday, there were three i found, but the one with the autoimmune cant find it. Will keep looking and as soon as I find it will post it. Have found a coule of them but not on the auto one! will post it
Good morning friends. I have just read about the diagnosis as an auto immune disorder. I took part in the london diagnostic blood tests but I haven't heard anything from them. Has anyone else? Keep fighting the cause people. Have a day full of love and upliftment. Gentle hugs pinot.xxx
I took part in the test too. I didn't think we would hear anything back, I haven't anyway. I just thought it was going to be a blood test to see if it was in my 'gene pool'. But we did have to give names and addresses, so maybe we will hear in time. XX
I believe that the KCL study is a DNA study rather than a diagnostic one.
On the FMA UK site it says:
"We aim to publish the results and will post a summary of the research in the FMA UK newsletter. If you provide an email we can provide feedback from your questionnaire."
It wont let me copy en paste the other one, but will keep trying
Got it! Will try to find the other one which is the interesting one
I wouldn't get too hooked up with the vit D thing......we live in a climate where we don't get enough sunshine so there are a lot of Brits with low Vit D levels. Boosting them is a good idea for all and it may help with fibro a tiny bit, but then again it may have no impact at all.
Five hundred pounds for the blood test? Seems to me that someone has cottoned on to the fact that there many many sufferers of fibro desparate to find a cause and is willing to charge this exoritant rate to vulnerable people. Also, there are many gene research organisations which 'trawl' for blood samples in order to find unique gene markers which they will then patent, thus denying the blood doner the right to his/her own genetic make up. Not sure if I made sense but I am off to research a bit more.
• in reply tospidey
I don't understand how you think it costs £500 for the test. Basically it may cost £15 for the blood tests to be done, but my doctor didn't charge me anything . We are so desperate to find something that helps, something that medically proves we are not going mad that we can lose our way in a mass of articles that also contradict each other . I know from personal experience that i have tried most things from alternative therapies to acupuncture to... hypnotherapy next . If doctors believe our condition is all in the head , then why are they spending ££££££££££££££££££££ on these therapies for us.
Hello Everyone,
Here is another article about this research that MAY have found some evidence to suggest that people living with Fibromyalgia MAY have lower cytokine levels compared to healthy subjects.
Here's the link;
chronicfatigue.about.com/b/...
As, with all research many studies will be conducted to examine the results before they can conclude that the evidence from these collective studies are sufficient to say whether this can be confirmed. I'm afraid it is a breakthrough that will encourage more research in this area but that could possibly be a considerable time before they have any definite conclusion.
As per the last passage of the link above ' Before a diagnostic test becomes common practice, it has to be proven effective in repeated tests. IF this test holds up to scientific scrutiny, it would make a huge difference in how Fibromyalgia is not only diagnosed, but viewed by the medical community'
It is exciting news !, however we need to await any subsequent information about further studies which confirm the same findings. Sorry guys, great news but may be a long wait yet.
Interesting thread Sadoldred, Thank You for posting
Emma
It's a possible breakthrough, this blood test, but we'll have to be patient and hope light dawns. It's happened with other diseases, so hopefully it'll happen with fibro!
I'm pretty sure that fibro is an auto immune disorder. It's significant that people with RA, thyroid problems and Crohns Disease all seem to have a high incidence of fibromyalgia and/or CFS, and even in those of us with sub-clinical symptoms, blood tests often show a mildly raised inflammatory factor. We must watch and wait!
A great many people who live in the UK are deficient in Vit D because of our low levels of sunlight. I see nowt wrong with a good quality multivitamin and mineral tablet each day to make sure we're having all that we should, but popping vast quantities of supplements without proper supervision is always a bad idea.
Anyways - it looks as though slowly and surely there is progress - I can't wait!
I think you're right moffy about fibro being an autoimmune disorder. I have Crohn's and thyroid problems too.
'Health Rising' is an American website run by Cort Johnson who is a journalist and has CFS and Fibro. Cort reports on all the latest medical breakthroughs, new studies and attends most of the CFS/Fibro conventions in the states. His reports are written for the layman, everything is explained clearly and he is a mine of info. If you make comments he will leave you an answer. I thoroughly recommend him and his site and it might be worth taking a look.
fyrefly
Very interesting x we shouldn't have to pay for this validation. If GPS can't test for it they still aren't going to accept this result.
LindseyMid• in reply to
The $500 test is not reputable. Yes, interesting research has come out but it is far too soon to say whether this will lead to a reliable diagnostic test for Fibro.
The Kings College study is at the research stage. They are collecting lots of blood samples from people with Fibro to see if they can find a genetic link. Any results from that will be years away.
I was very relieved when I was diagnosed with FM. At last! A reason for feeling as I do. I would hate to do a test which has not been through proper clinical trials and be told that I don't have it! It would be like starting all over again.
I do think it is an autoimmune disease, there is a lot of evidence for that.
Hope you are all having a good , I nearly said day, hour.
This person seems to have done some good research on the subject.
myfibromyalgia.co.uk/tag/ep...
I have just spent an hour or so looking at various sites of studies trials atc and these make very interesting, if a little technical, reading.
It would seem that two areas of research come up. One studying a link to silicone in the system making an immune system failure in people with silicone implants or shunts ect which cause fms type symptoms so they studied folk with fms and came up with similar markers.
A test for the cytokenes was conducted by a Dr Willis who came up with the genetic marker for FMS and he went on to form the company , Epicgenetics which now charges 744 dollars for the test kits.
His test was based on a study of just 200 FMS sufferers. Less, as the person on the above site evinces, than some shampoo sample studies.
The test will only show if yo have the genetic marker and apparently was only good for 80% of the study.
Confused, I am but it still seems like someone is making money off the back of a relatively small study.
It's all pointing that way, but like you say, there isn't a disease on earth that someone isn't making a good few bucks from!
Moffy x
I am shocked it would be classed as degenerative as I have had it 23 years and in the last 18 months I have actually been getting sleep and getting to a manageable point with it so I actually feel better than I did years ago don't tell me its just another remission and I am going to go into a decline again
Sulks 
VG x
Epigenetics have so far made three quarters of a million dollars out of it!!!
Snake oil and monkey glands form the travelling medicine show.
Personally I have found Himalayan bat-dung and hen's teeth an effective remedy!
Available at low price from Moffy's famous Health Spa 
I wish to complain you have sold out of your remedy I just checked your website to buy some.... Though I could supply you with snake dung at an exorbitant price 
Please send 5Kg under plain brown wrapper Will arrange consignment of bat-dung in return!
Moffy x
I hope the postman doesn't get it mixed up with the other items you buy in plain brown parcels... It could get rather embarrassing 
I've always known it was an auto immune condition since it is related to arthritis and rheumatoid arthritis which are. My Mum has RA as a follow on from having had pneumonia 13 years ago. As far as I know RA isn't hereditary if it starts because of something like that. Btw M.E is an auto immune condition too and fibro is a bit like that too as is Lupus.
RA isn't hereditary but you can have genes which pre-dispose you to get it.
My hubby's family have a history of RA and Psoriasis, his siblings seem to have one or the other, but hubby managed to end up with Psoriatic Arthritis which has become so bad it now means he has to self inject an immuno-suppressant every couple of weeks.
It definitely isn't clear yet whether Fibro is autoimmune, so don't bet the house on it. Yes, people with RA and Lupus are more likely to get Fibro, but so are people with hypermobility or painful periods. The most reputable hypothesis about Fibro at this time is that it is the end result of overstimulation of the Autonomic Nervous System. Chronic illness or chronic pain can cause this, as can cervical cord compression and other factors. The resulting changes to neurotransmitters, cytokines, etc can be explained as knock on effects from the ANS over-stimulation.
No way .....I am just selling his poo ... . That will kill or cure... Most likely kill for those fibromites who are sensitive to smell .... I know he's has done a poo almost before Leroy does it my nose is that sensitive ...
Though I could relabel cheap cooking oil ... Snake oil and sell that to moffy.... Hehehehe
Yours cashing in .....
Thanks midori
Glad ive got no sense of smell...xx
I was on holiday and was speaking to a lady who has fibro ahd she has been advised by her consultant NOT to eat certain foods, Tomatoes any root vegetables, cream and various other foods , she has now totally changed her diet and she swears that this helps with the pain. Even if she eats a packet of crisps now she says her pain is a lot worse.
I've cut out potatoes,tomatoes and peppers and that does help. They are from the nightshade family.
i thought fybro WAS an auto immune disease as my specialist who diagnosed me said it fitted with my allergies, brain tumour b12 and other things i already have>
Fibromyalgia is a syndrome, not an illness. It is something that is diagnosed when they don't know what else it is. I was diagnosed with fibro. 2 years ago by several different doctors who prodded me in several different places. The fact of the matter was that I ached so much I would have said ow wherever they touched me. My vit d levels were low, now rectified. I have given up wheat/gluten - symptoms of gluten intolerance are aching and fatigue. I've had my mercury fillings removed. symptoms of mercury poisoning are aching and fatigue. Have given up eating members of the nightshade family which cause aching and fatigue. After much research and skipping the doctors, an endocrinologist diagnosed me with Hashimotos Thyroiditis, an auto immune disorder ( even though my thyroid had been tested on many occasions and declared 'Normal' by any doctors. I now have my energy back, still ache a little and am searching for the answer to that. I walk for an hour every day and feel so much better.
I'm not saying the above is the answer for all our symptoms. But only one doctor has tested me for gluten intolerance, the same doctor who is balancing my hormones - symptoms of progesterone deficiency is aching and fatigue.
My belief is that there has to be a reason why the body shuts down, find the reason and you can treat the cause. Good luck in your journeys
Hi All
Very very interesting - but I should have stopped reading earlier. Brainfog not good today so result is my head has exploded!
If anyone detects strange meteor objects landing this evening with Gardaqueen written on the fragments, don't panic - it's my brain (what's left of it).
xxx
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