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new here - how long for your DX?

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Posted 4/2/2009 12:42 PM (GMT 0)
Hi,

I'm fairly new around here and would love to get to know you all. I've responded in a few threads, but haven't started one of my own. (Til now :)

From the time I went to the doctor - to the time of my diagnosis was 6 months. Although I just didn't complain about my pain for years. When my first major fibro flare hit, I went crying to my new GP wondering what could possibly be wrong with me. She immediately suggested fibro, because I had all 18 tender points. I was then sent to a rheumy who did many tests on me and was the most understanding doctor ever. He took 6 months to diagnose me. Which I'm glad about - it means he did his job.

Although I suffer each day, I've learned to handle things fairly well. Oh, I complain to hubby - but have learned I need to live with this. I can no longer work, and sometimes feel useless in the world. These are my really bad days. Losing weight is a goal of mine right now.

I am married to a great guy. We have 2 children who are married also.

Anyway....my question is - How long for each of your DX for fibro, and are some of you still waiting for that DX?

I look forward to meeting new friends here. :-)
Posted 4/2/2009 1:26 PM (GMT 0)
Hi myjoy.  I had fibro for several years before I actually began seeking a diagnosis.  I had had two previous back surgeries and initially thought all of my pain was caused by them, but when my whole body started hurting pretty much all of the time, I knew there was something else wrong.

 

When I saw my PCP, he kind of threw fibro out there as a possiblity but never really pursued it.  I was also pretty anemic at the time, and he thought that might be causing some of my pain and exhaustion, but when I got my iron levels up, the pain  and fatigue were still there.

 

I took it upon myself to see a rheumy, and he diagnosed me in a couple of weeks (after several blood tests and physical exams).  I've had the diagnosis confirmed by 2 additional rheumies ( I didn't like the first one, and the second one was two hours away, so I found another closer).

 

I know what you mean about feeling useless; I've been struggling with that a bit myself lately.  As for the losing weight, that seems to be a problem many of us here are dealing with.  Not only does fibro bring pain, it also seems to bring pounds! 

 

I'm glad you are here, and welcome.

 

Hugs - Austen

 

 

Posted 4/2/2009 2:40 PM (GMT 0)

Hi and welcome

It took me almost two years, 3 trips to ER, before they finally diagnosed me with Fibro. My PCP was the one who dx me.  The last time I went to ER I thought I was having a heart attack.  The drs in ER were useless and sent me home, telling me to see my PCP the next day.  It was not my heart, but was costocondritis.  I went the next day to my PCP and alls he had to do was touch a few tender points and I flew off the table.  I never really thought about Fibro, until I couldnt stand the pain anymore in my legs, back, thighs, chest, and neck.  I am pretty sure mine started after major surgery in Jan of 2005.  Hope you start to feel better soon.  Some days it is normal to feel useless, but that is ok.  Be kind to your body and it will thank you for that.

Hugs

Sue 

Posted 4/2/2009 2:42 PM (GMT 0)
I don't know how long I had fibro before I was dxd cause my problems started with horrible anxiety, tiredness and some aches and pains but I was going through peri-menopause and my doc and I both explained away a lot of the problems for quite awhile til the tiredness turned to down right fatigue and then he started testing for everything it could be but it took an all out flare for everything to fall into place and he did the tender point test. It was probably about 4 yrs from when the anxiety started til dx.

 

My 32 yr old future DIL goes to rheumy Tues to see if she has fibro and she has had problems for 4 yrs but her's has progessively gotten worse since a really bad pneumonia in Dec. So maybe for some of us we have to get to a certain point before it is obvious that there is something really wrong.

 

luv and hugs

Marlee

Posted 4/2/2009 3:03 PM (GMT 0)
Hi Joy,

Welcome!!

It took me about 4 years to get a diagnosis. After several years and just about every test under the sun and several trips to a Neurologist (they thought I had M.S. for a long time), I finally got a diagnosed by a G.P. I had just started seeing. She looked over my history, saw that I had tested negative for everything else, then checked me for the tender points (I have all of them) and told me it was Fibro. In the same breath, she also told me there was nothing she could do for me. Unfortunately, right before I was diagnosed, I lost my health insurance, so I've never been able to go see a rheumy or get on any meds. Then a few months ago, my GP closed up her practice and moved, so I was stuck without any kind of Dr. at all. Luckily, a new clinic for the uninsured just opened up in my area and I have my first appointment with them on the 23rd. I don't really want to go the Lyrica route, but it would be nice if I could get some meds for some of my symptoms.

I do not work right now either. I am currently in school full time and hope to be able to go back to work once I've gotten my degree, but I do have to admit that going back to work does scare me. Hubby and I have already talked about that, though, and we agree that finding part time work would probably be what's best for me. I know what you mean about feeling useless, though. I do go to school as I said (though I take all of my classes online) and I have 3 kids, so it's not like I don't do anything in a given day, but most of what I do is so repetitive that I don't feel like I've really accomplished anything. That feeling can get very depressing!

I am also working on weight loss and I know there are others here working on the same goal. We did have a "group weight loss" thread here, but I'm not sure where it went..

Anyway-enough of my rambling! I am so happy you've found us and I look forward to getting to know you better! :-)
Posted 4/2/2009 3:42 PM (GMT 0)
I started having symptoms 15 years ago, and after 5 years of going to my PCP trying to find out what was wrong he suggested fibromyalgia. Unfortunately at that time I also lost my insurance coverage and moved away. When I finally got insurance again I couldn't find a doctor to listen to me. Recently I finally found an excellent doctor who listened. After that it took about a month to confirm my dx. I had 17 of the 18 tender points, and so many of the other symptoms. He sent me to a rheumy to get her opinion and she agreed that it was Fibro. He also sent me in for MRIs, blood tests, CT scans, and x-rays. I still have to do a sleep study and carpal tunnel test, but regardless of those he is sure I have fibro. It was a relief to be validated after all these years, and at the same time it was crushing to realize that this was real and it's not just going to get better wihtout some serious action on my part.
Posted 4/2/2009 4:04 PM (GMT 0)
I understand how you feel. I have been having fibro symptoms for 6 months, and I still don't have a diagnosis. I have been told that I may have MS, but I don't have any brain lesions. But a lot of people with MS don't always have brain lesions. My Dr told me that I may possibly have Fibro. No Drs have even checked the tender points. But to touch them myself they don't hurt. It is frustrating and confusing.
Posted 4/2/2009 4:21 PM (GMT 0)
I'm with Marlee on this one. I don't know how long I had Fybro before I was Dxd. I had blood work done about 10 years ago for an un-related problem, and the test showed I had lupus. I almost had a nervous breakdown, ran to my GP, who told me I did NOT have lupus, and sent me to a rheumy who told me I had Fybro, and there was nothing I could do about it. Great, I said. So, I went on every pain med known to man, until Lyrica came out. While Lyrica helps a bit, I still have to take my other pain meds. And I too cannot work; I can barely get out of bed some mornings. And unfortunately, I DON'T have a sympathetic husband. He's like his mother; it's all in my head, and I'm a hypocon. Nice, huh? Glad I found this forum. I needed to share some of that with folks who understand. smilewinkgrin

 

Birdy scool

Posted 4/2/2009 4:38 PM (GMT 0)
Welcome Joy,

I was just officially diagnosed this week after a 5 year wait.  Five years ago, I came down with an aweful virus.  That's when it all began.  I felt like I must be dying from something because I had never been in so much pain.  The Dr. first suspected Lupus or RA, but the tests were negative.  They told me I had reactive arthritis and that I would feel better in a few months.  A year later, I went back still feeling achy all over and they said it was just a form of arthritis and to take Aleve.  The pain has gotten so much worse just in the last few months that I decided to go back and demand that they send me home with a diagnosis of something...anything!!!  The Dr. found tender points I never knew I had and some I already knew about.  His exam was very thorough.....finally I got the diagnosis I already assumed I had. It feels so good to have a dr. confirm your pain.  I still think people don't believe me, but having an official diagnosis just takes away some worry and confusion for me.

This site is great and I enjoy getting to know you all too.

Posted 4/2/2009 4:39 PM (GMT 0)
Oh, about 25 years. I noticed some pain and stiffness in my hands and legs during my first job right out of high school (17 or 18 yrs old). It was a few years until I first complained to a doctor (in my early 20s), and I was told (with no tests done) that I was starting with rheumatoid arthritis--which was eactly what I had expected. So that's what I thought it was all this time. I quit working full-time 15 years ago because my body just couldn't handle it. Even working part-time jobs left me completely drained and unable to keep up with the simplest household tasks. NSAIDS didn't help much but I kept taking them anyway because the doctor said so. My hands got really bad a couple of years ago and I asked my current doctor to refer me to a rheumatologist because I don't want to be completely crippled from RA like my mom was. This time, the doctors ran some actual TESTS and said there is no indication of inflamation in my body so it is NOT RA. That's when the rheumy did the trigger point thing and declared me a full-fledged fibromite. That was almost 2 years ago (age 42).
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