Fibromyalgia

[tjoan910canadian]

I came upon this site accidentally...and was reading some of the questions and answers. How can you offer medical advice if you are not in the medically field?

[j_s_w]

Hi DeeDee!

How are you doing on the new medication? We've not heard much from you since you posted about being put on it.

Regards,

Jamie

[deedee332]

I just would like to add a brief opinion about this website which I am fairly new to.  I feel that responses from other people who have been through the crazy problems that come along with fibromyalgia and understand what I am going through is not acting like he/she is a member of the medical profession.  This website has helped me and I feel that if you are going through something that someone else has insight on so be it.  I have told friends that I get more believable information from here than any doctor has ever known or divulged.

[scaredmom330]

apparently you havent read too many of the threads. I've not see anyone give medical advise. we share our experiences. there are quite a few people on here who seem to know more about fibromyalgia and CFS then most M.D. most people on here do not want "sugar coating" but  the truth and as sad as it is there are people with fibromyalgia and CFS that are in wheelchairs.. I have all 18 trigger  points and there are days where I have to use a cane to get around and pray that I won't end up in a wheelchair but it is always a possiblity and yes I do exercise when I can...I agree with PlateletGal and hope in the future you can contribute a positive outlook and become a member.

[PlateletGal]

I don't believe for a minute that anyones intentions here are to "scare" people. There are members here who are disabled and they know the truth. My intentions for this board is to share information, opinions, research and treatments. Sharing facts is not a negative outlook at all. Look..... fibromyalgia is a relatively new disease (I refer to it as a disease) and little is known about it. The same goes for Chronic Fatigue Syndrome. The name "Chronic Fatigue Syndrome" does not do this illness justice. Anyhow, from what I see.... our wonderful and valued members here are sharing information in hopes to let others know what they may face and what their treatment options are. I have read what fibro/CFS experts are saying on these conditions. There are some very promising treatments for fibromyalgia and CFS for that matter.

I think we have a very positive board here and I think that most members will agree with my opinion. I hope that you will contribute a positive outlook and join us in our mission to share our personal experiences.

[tjoan910canadian]

I never came here to upset the applecart at all....and I am a member.......and I have had fibro almost 30 years now plus Crohn's disease, and other stuff and I do suffer daily....I was not referring to the disease being positive...but referring to having a positive outlook and I am not pointing any fingers at all.....and if this is what your group is about and not listening to someone who has been there suffering for 30 years and what I have done to keep my self on the positive side of it then so be it......and I certainly do not Sugar Coat anything........I just had a friend who's doctor diagnosed her as having fibro and has not even sent her to a Neurologist or a Rheumatologist at all......when I was first diagnosed they did multiple testing to be absolutely positive that I did not have any other disease more debilitating than fibro.  Advice is excellent to others but we cannot definately blame every little symptom that we have on Fibro......and honestly sometimes you can get really caught up in it and feel really a lot more pain than you should.  I have 17 of the 18 pressure points and and I can be a very negative thinker and those who help keep me on a positive note is what helps me a whole lot....So please pardon me for my opinion...is this not a forum for discussions and am I not entitled to my opinion.  I have never ever belittled that some fibro sufferers are in a lot of pain....and I have met plenty of women who have been told that they have fibro without further testing only to find later that yes they have M.S.   But really what is the point in scaring someone out of their wits about saying "they can end up in a wheelchair".....some people will get that thought into their heads and completely head into the wheelchair direction....

[PlateletGal]

Which post is upsetting you so much ? You know peoples opinions don't bother me. There are facts and the fact is that some fibromyalgia patients are in wheelchairs. The truth never hurts... only our reaction to it does.

[tjoan910canadian]

I understand that but gees you cannot tell people that they can end up in a wheelchair....and I to have fibro amongst many other ailments.....but Gosh do not tell people that the medical profession says that fibro is NOT progressive but that you think it is..........get the facts straight.....and do not blame every little thing on Fibro....I have a group that I run....for women with fibro and/or related or other ailments....and I would never tell them that they could end up in a wheelchair....but would be more sympathetic.....and veer them to thinking more positive....etc......

[PlateletGal]

All of our members here are sharing their own personal experiences with physicians, treatments and education. Some of our members here have medical experience and of course, years of experience being a patient and being tossed around like a football. Since we have conditions that are relatively new and often misunderstood in the medical field, there are many members here who do their research and share that information with the other members.