HealingWell
Search Close Search
☰

Do you ever feel like you have something else....

Support Forums
>
Fibromyalgia
✚ New Topic ✚ Reply
❬ ❬ Previous Thread |Next Thread ❭ ❭
Posted 6/19/2011 11:25 PM (GMT 0)
Hey all, I am new here. I have been just recently diagnosed with fibro. I am 29 and was diagnosed a couple months after my baby girl was born. My PC said it sounded like fibro. all tests came back normal. He sent me to the local rheumatologist who did a little more blood work which came back normal. He also diagnosed me with fibro. I am breastfeeding my daughter so I don't have much of an option for meds, besides am totally against taking to many meds. My PC didn't know what else to do but send me to the fibro clinic at a bigger hospital. I am currently waiting for my appointment there. It is in September, I do exercise every SINGLE day and it does help with the pain factor. If I don't exercise for a few days I feel horrible...like I have been run over by a mac truck. So here is my question, does anyone ever feel like you have been mis diagnosed. That you have something that the dr's havent found yet. I know since my labs came back fine that this probaly is not the case but I can't help but think this. Also any advice would be helpful for what to tell the dr at the fibro clinic when I go in September. I know that I want to really push for some other tests like vitamen levels to be done and am hoping that they don't have a problem with doing it. I really don't want to be thrown into a fibro basket and be looked at just like any other person that has fibro. I am trying to take a no medication approach, I have so many questions and not enough answers.....
Posted 6/20/2011 12:57 AM (GMT 0)
Dear forever

Almost all autoimmune disorders have very similar symptoms and diagnosis is "by exclusion" (in other words, you don't conclusively have X disease so it's fibro). Some docs just don't want to say they don't know and in you go to fibro basket!!

You did not mention too many symptoms except pain. Please list other problems.

I was dxd in 2004 with fibro, just saw a neuro/sleep doc who says I don't have enuf trigger points and is looking at myalgias or epstein Barr, chronic fatigue Lyme Lupus etc

Welcome to our forum and congrats on the baby girl. Give us a little more info to work with

Maggie
Posted 6/20/2011 1:20 AM (GMT 0)
Hello and welcome to the fibro forum. You will find that there is a thread called "fibro101". It is a stickie thread at the top of the page. Second thread. When you get a chance, please look it over. There is a lot of information that I think you will find helpful, including information on a malic acid/magnesium approach.

You will probably find that you are low in vitamin D3. Mosst fibromites are. I am sorry you have been thrown in the basket with us. But I think you will find that this forum really helps and that you are not alone in this. It isn't the worst place to be. In the basket I mean.

Many gentle hugs,

Karen
Posted 6/20/2011 1:29 AM (GMT 0)
foreverblessed - Congratulations on the birth of your daughter!

What you are feeling is perfectly normal. Afterall, no one wants to be diagnosed with a chronic illness, particularly at such a young age. Trauma such as a car accident, and childbirth can trigger Fibromyalgia (FMS). The mechanism that causes it is not understood.

I understand your reluctance to take medication. However, the longer a chronic pain cycle continues, the harder it becomes to manage or stop. I would encourage you to rethink your position on that point. Fibromyalgia (FMS) has a huge impact on not only the patient but the family unit as well. Anything that you can do to minimize the impact is important. And, by not using something to manage your symptoms, your immune system is on permanent overdrive.

I use a mix of conventional and holistic medicine. It takes time and a lot of tinkering to find the right combination for each FMS patient. It may take a couple of weeks or even longer before you begin to notice any change.

You are perfectly right to see another specialist and verify once and for all that nothing else is going on. I assume that your vitamin D levels have been checked. You should also be tested for a gluten senstitivty or intolerance. Any of these items will also cause widespread pain. Incidentally, a bloodtest for gluten is less than 90% accurate. A biopsy may miss the villi in the small intestine that are damaged by gluten. The best and most accurate test is done using a stool sample.

Good luck to you and take care.
Posted 6/20/2011 3:45 PM (GMT 0)
Thank you so much for all the support, you guys are great. I totally wasnt trying to be harsh when I said "thrown into a basket" I just don't want the rhuematologist to assume that I just have fibro and not listen to my concerns. As far as the pain goes I have the typical fibro pain, tender points, tiredness. There were a couple things that stumped me that I never heard of being a fibro symptom. Which was all of a sudden bruising easily, I have never been a bruiser or had sensitive skin. I am happy to see it is on the list of fibro symptoms. The other thing was I ALWAYS have a horrible taste in my mouth. It seems like it is comming from the back of my throught. It is so bad that I can taste it everytime I swallow food or drink.
Besides the fibro I have always been a pretty healthy person an ocassional sickness here and there. However I have delt with anxiety my whole life. I used to have anxiety attacks (about 6 yearls ago) I don't have them any more but am still a very anxious person. I have tried to take celexa for this and I didn't feel like my self. I have a very hard time with taking medication. I get every side effect listed and more...and I guess I shouldn't have said I don't take any meds I do take a couple just not on a daily basis. Flexaril, norco, vitament D (my levels were low but are no longer I take 2000 IU a day) and a multi vitamen. I am defianetly going to try the malic acid/magnesium. Thanks again for everyones support. I am so thankful I found this forum!
Posted 6/20/2011 4:23 PM (GMT 0)
hello forever and welcome to the forum! i am also a fairly new member, and also young. I am 25, diagnosed this year in February. Prior to my diagnosis, I was sick for 2 years. I had multiple tests, MRI's, blood tests, neuro consults, GI consults, rhuematologist consults.. endoscopy, colonoscopy, ultra sounds, you name it! I understand how frustrating it can be to not really have a diagnosis. I spent 5 days in the hospital last October and didnt even leave with a dianosis. I also bruise easily and often now. I dont know what, if any, medications you are taking specifically for Fibro but I am on Lyrica. Your post jumped out at me because you sound just like me, anti-pills! I also have some issues with anxiety. I am on Lyrica, Xanax and Prilosec for the heartburn issues. Its all encompassing. I have began using stretch bands for my muscles, and drink an Ensure nutrition shake daily, I have also found these to be very helpful! I know popping a bunch of pills is no fun, but I know that as long as I keep up with my medications, Ensure shakes and making sure I do stretching and light workouts everyday, I feel much better! Hang in there and keep the faith..!
Posted 6/20/2011 4:29 PM (GMT 0)
You sound just like I did! I was first diagnosed with lupus, then nonconnective tissue disease and then fibromyalgia. I was given medications that would have an adverse effect or stop working so they would just give me more pills. Finally I went to see a naturopathic doctor to try to get to the bottom of everything. I have been seeing her for about 3 months now and I LOVE her!! They check out so many different things that could be wrong. So far I've been tested for food sensitivites and have cut those foods out of my diet and so much of my aches and pains are GONE!! She has also done things with certain vitamins, supplements and I am currently getting some other things checked out. I know that this route isn't for everyone, but it has sure helped me. I always felt like there was something else going on and wasn't going to live with the pain!! Good luck to you all!!
✚ New Topic ✚ Reply