Hi!

I was tested for Rheumatoid arthritis a few weeks ago and when the tests came back it was positive. I made an appt to see a RA doc...After seeing two docs they both came back with a diagnosis of Fibromyralgia...so I am now in the process of reading about the disease...

Where should I start and what should I know? I am not convinced this is what I have since I have so much pain from my fusions and spinal pain...but am willing to read and learn..

Anything you can share...Where do I start?

Thanks...

Hi and welcome.
To make things clear you have RA and FM. There are no blood tests to test for FM yet but from the sounds of it, it may be coming within the next few years.
A great book, which I call the "FM Bible" is Fibromyalgia and Chronic Myofascial Pain: A Survival Manual by Devin J. Starlanyl and Mary Ellen Copeland does a great job in explaining the illness and breaks things down by chapter for you. It is in its second edition finally and I am sure there are newer things in that one than I have in my first edition. I haven't seen it yet. The book is available in any bookstore or at amazon.com or barnes and noble (bn.com).
If you have any questions, feel free to ask. It is the only way to find out anything.

Actually, the test for the RA came back a low positive so the Rheumatoid doc I saw told me they will run the test again in six months..She does not think I have RA, just Fibromyralgia....

Hello GJZH

I agree with the book the Wendy suggested. It is the "fibromyalgia bible" for anyone with a diagnosis of fibromyalgia. The book is helpful as a tool to learn about fibro, learn how to treat it and live well despite it - and the book is also great at helping patients to discover whether their diagnosis of fibromyalgia is accurate or not.

Unfortunately, many doctors use the term "fibromyalgia" anytime they have a patient with muscle pain or anytime a patient has symptoms that can't be easily explained (especially if the patient is a woman).

Yes, fibro is a real diagnosis and a real problem - but because so many doctors have mis-used the term and because so many doctors use the diagnosis improperly - it is important for any patient who is diagnosed with fibromyalgia to do a bit of their own detective work to make sure the diagnosis is accurate.

Another thing to consider is the fact that fibromyalgia rarely just happens on it's own.... it usually occurs as a result of something else (car accident, autoimmune disease, spinal problem, etc...). I saw a statistic once that said that 90% of all fibromylagia is caused by something else - so it's important for you and your doctors to investigate to make sure you know what the "something else" is.

Many fibro patients get symptom relief from their fibro by treating the "something else"... so as you search out treatments and methods of relief, keep in mind that treating the "something else" (the primary condition, the probable cause of the fibro) is a big part of treating the fibro symptoms.

I hope that helps - if you have any questions just ask. This fibro forum seems slow sometimes, but that is often because all of us are aching and not typing - but when someone asks a question we all come out of the woodwork to type

The best advice I can give you though is to get the book that Wendy suggested. It's the best fibro book ever, and in my opinion it is the only fibro book that is accurate.

take care,
liz

Have you found some good Fybro websites to get the basic info ?
here are a few- well more than a few
I should have checked your stickys first- some might be there too.

Fybro & CMPS & RSD
http://www2.rpa.net/~lrandall/fmslog.html
http://www.geocities.com/barmellin/myo.html
http://members.aol.com/fibroworld/mps.htm
http://thyroid.about.com/od/fibromy...instarlanyl.htm
http://www.triggerpointbook.com/index.html
http://www.triggerpoint.fcpages.com/_sgt/f10000.htm
http://www.triggerpointbook.com/triggerp.htm
http://www.medicineau.net.au/clinic...Myofascial.html
http://www.emedicine.com/pmr/topic84.htm


the Devin S site link-
http://www.sover.net/~devstar/
Fibromyalgia links-
http://www2.rpa.net/~lrandall/index.html
http://www2.muhealth.org/~fibro/fm-md.html
http://www.nfra.net/Diagnost.htm
http://www.fibrohugs.com/
http://www.fmnetnews.com/pages/basics.html
http://hometown.aol.com/fibroworld/index.htm
http://members.aol.com/fibroworld/FMfact.htm
http://home.mn.rr.com/apbiii/fibro-links.html
http://www3.sympatico.ca/jfroache/fms2.html
http://www.sciencedaily.com/release...20607073056.htm
http://fmaware.org/
http://www.mwilliamson.com/info.htm
http://www.emedicine.com/med/topic790.htm
http://www.emedicine.com/pmr/topic47.htm
http://www.rsdinfo.com/
http://www.rsdhope.org/ShowPage.asp?PAGE_ID=4
http://www.rsds.org/2/what_is_rsd_crps/index.html

i already had put them in the stickys - plus some triggerpoint links

I guess the basics as I know it are - {it's been awhile since I've studied/read on it}
{I don't have it but have read about it since some of my TOS/CMP sx overlap with sx of Fybro}

Fatigue - with unrefreshing sleep
touch sensitive skin- all over achiness
specific tender points - at certain places on the body
I think having 11 out of 18 of these points suggest FM ??
{the websites usually have a pic showing where those are located}

Devins page on defining FM & CMP more clearly
http://www.sover.net/~devstar/define.htm

I guess I should explain how I was diagnosed...and in truth do not know much about Fibromyralgia or know that I believe I have it.....I think the first Rheumatoid doc I saw was looking to diagnose me with something and get rid of me so he decided on Fibro....

I have severe spinal problems..I have a fusion at C4-5, 5-6 and 6-7. I had the cervical fusion in August of 2005. I am already showing signs of degeneration at C2 and C3 and T1-T4...I also have spinal problems in the lumbar and have a fusion of L1 to S1. I had this fusion in April 2006. I am recovering from this surgery now...

I am still having much of the same presurgery pain that I had before the lumbar fusion...I started to cry to my pain management doc one day in the office about how much pain I was having in the morning. I told him if I just do not move I do not have pain, but unfortunatley, I have to move so I am in agony. He decided to send me for blood tests...My hair was falling out at the time too...and my shoulders hurt so badly I could not raise my arm to do my hair or makeup...The blood test came back positive for RA, but it was a low positive.

I saw the head of RA doc ...He did the exam looking for RA...poked me all over the place and as I said ouch to them...He said I had Fibro...Well I also have OA in all those same places...so how do you decide one from the other? I decided he just wanted to get rid of me...and did not really look at my films...I wanted someone to help me with my OA that seems to be creeping into every joint....so I made an appt with a woman RA doc...Well it was still within the hospital system...I did not realize that she would just read his notes and go on his findings....so she is having me come back just to placate me, but in truth she thinks I am looking for a diagnosis of RA, when I really wanted someone to help with the OA...but she was so disagreeable ...I would not want her to help with anything...She was not anyone I would drive three hours to see again...She was supposedly a top doc in the Philadelphia area...but she would not get my vote....for certain...

So I thought I should read about Fibro...Oh and I thought she went on the other docs notes because she did not do the poking he did, but she did just about ruin my fusion for certain by raising my leg way up in the air..I think she wanted to hear me scream in agony...After she lifted the leg she twisted it and then the hip pain kicked in, but I have a four inch screw into that hip..so she should have looked at my films before she started ripping my legs around like that....I should have kicked her.....I have not been able to walk upright since the visit with her...She was such a witch...What is it with RA docs..? Are they all just a little touched in the head or what? I have yet to meet with a nice one and I have had appts with three...

To answer your question about RA docs....yes I think they are all touched in the head. My doc now, is the best one I have had and he has the personality of a rock. He also wears funky bowties. No idea on that one.
As for figuring out what is what....everyone is right knowledge is the best form of knowing. Familiarizing yourself with FM, CFS and CIDFS all of which are similar but not the same thing and have some of the same syptoms, which is as frustrating as all get out by the way.
Again I would take a look at the book I mentioned, if you can't afford the book, sit down with it at the bookstore and read it there.
I know its confusing and frustrating. We were all there at one point or another and some of us are still frustated eventhough we have had the diagnosis for years.
Please again, if you have any questions at all feel free to ask.

Definitely, as everyone one else has said, take the time to learn. You will not regret it, I promise you.

I've studied it for years now, and the most common hypothesis I keep encountering is that FMS is most likely caused by any prior condition that continuously interrupts stage IV sleep in a person for a long period of time. It (the triggering condition) can be physical or psychological. OA would definitely fit the category.

The most definitive symptom of FMS are the tender points that develop on very specific areas of the body. You can find "maps" of these tender point locations in the books that have been mentioned, or on one of several good websites on the internet. You can use these maps to explore your body for yourself. Using your fingertips, gently probe to find if and how many of these tender points you have. They generally feel like a small, very tender bruise just below the skin. Don't do like I did the first time and keep pressing them again and again to reassure yourself, though. You'll wake up the next morning hurting all over.

It is possible to have fibro-symptoms without having the condition itself, but the tender points are fairly indicative, if you have at least eleven of them. You can have fewer and still have FMS, but if you have that many...

Good luck with everything...
Idealist

I just wanted to say that I went to my third RA doc today and I think he is the keeper...It took three docs/ actually four if I count the one I went to years ago...but he was so wonderful...He sat and talked to me for about fifteen minutes...until he saw my eyes glazing over I think...My pain meds have a tendency to do that.... But he explained everything to me...

He never mentioned Fibromyalgia to me...I realized I was spelling the name of this disease wrong...I put an "r" in it ...anyway...He is doing more testing and is not ruling out the RA diagnosis just because I tested low...He said it may just be a low reading and I need to be on the drugs for a year to knock it out completely...He said we do not want to let it grab hold, so if we can knock it out with drugs now, we will do it...

He was so very, very nice...I mentioned it to the receptionist and she laughed. She said they hear that a lot...but honestly...He talked before the exam, did the exam and then talked to me after explaining the drugs...He gave me two scripts...One for hydroxychloroquine and another for prednisone...

He sent me for more blood work and they took nine vials of blood...He is looking for everything and told me to read about Ankylosing spondylitis as well. I think he is not willing to rule anything out until we get the blood test results...It was just so nice to have someone that was willing to investigate this further...If I test positive for nothing else...that is great too...at least I have the peace of mind of knowing he looked at everything...not knowing and guessing is the worst...I think the others jumped to Fibro just to get rid of me...