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Posted 11/21/2009 2:52 AM (GMT 0)
Hi everyone,

I am new to this forum. Just a little history, I was diagnosed with Fibro this year. In 2008 I was diagnosed with Sjogrens, and in 2007 with Pulmonary Hypertension (mild).

I have dizziness, shortness or breath, LOTS OF FATIGUE, and chest pains. All of my echos and other heart tests show that my heart is not causing these problems.

My Rhuematologist says that Fibro is probably the cause. If so, is there any treatment they can do for this? His attitude seems to be "deal with it". Even though my o2 levels drop significantly in the night.

I am so frustrated with the doctors not giving me any help. I am having to be proactive and do research myself.

Another question, has anyone been able to get disability based solely on Fibro?
Posted 11/21/2009 3:26 AM (GMT 0)
Maybe you should look into seeing a new doctor. If your concerns aren't being addressed in a way that satisfies you, you should seek out someone who you feel listens to you. Maybe at least try discussing the oxygen problem with your primary care physician. Good luck to you and God bless. I hope it works out, and I'm sorry I couldn't offer more, but I'm sure someone will come along to help. Welcome to the forum :)
Posted 11/21/2009 5:17 AM (GMT 0)
Hi Jenpro,

Welcome to the fibromyalgia forum. Yes you should be proactive. Stay on top of things and remember the doctor is working for you.

As Mrs. T said, maybe you should see a different doctor. You need to feel that you are being helped.

Since you are new to the forum, I want to direct you to fibro101. It is the first thread on the page. There is a wealth of information in that thread and I think you would enjoy reading it. We all suffer with pain and fatigue every day. We all know what you are going through.

One thing that you should do is stay as active as you can. The more that you are moving, the better that you will feel. Once you stop moving, everything seems to go down hill. And then you are apt to have a flare. So keep moving, keep posting and know that all of us are here for you.

Best wishes,
Hugs, Karen
Posted 11/21/2009 5:55 AM (GMT 0)
Hi Jenpro and Welcome!

You will find the people here truly care about you and how you are doing. It won't take long and lots of people will be by with offers of suggestions. It does sound like your medical team isn't doing you any favors and IMHO are not being respectful to you at all!! There IS help for the treatment of the symptoms of fibro, although there is no cure for fibro itself. I agree with others...time to fire the doc and find one who actually is up to date on fibromyalgia and how to treat it. Sad to say there are way to many doctors who would prefer to stick their heads in the sand or not bother with fibro since it can't be "fixed".

My suggestions is to get in touch with the nearest teaching/university hospital. In the Fibro 101 post at the top of the the topic list is a link to the major university hospitals around the world. This is where you will get hooked up with a doctor who can and will work with you and will also have the latest in help and scientific knowledge of fibro. Here's the link so it's easy to find. en.wikipedia.org/wiki/List_of_university_hospitals

Also there's a link to information on Costochondritis in there. It might be what's going on with your chest pain. Not sure because we're not medical professionals, but it's worth looking at the information. www.mayoclinic.com/health/costochondritis/DS00626

I do hope you can find some good help. Please keep us posted on how you're doing. We'll do all we can to make sure you get helpful and respectful care.
Chutz
Posted 11/21/2009 6:42 AM (GMT 0)
Thanks for your replies! I am a Kaiser patient. I feel that my Rhuematologist has put in my file that I have Fibro and to dismiss all and any complaints this patient has. Of course I do not know for sure, but every since he told me that I had Fibro, I have got negative feed back from my Pulmonologist, Cardiologist, and my General Practitioner. I am so sick of it. Unfortunately I cannot fire my doctors because there are only one in each specialty (besides Cardiology--there are several).

I am just trying to figure this all out and wondering if my symptoms are pulmonary hypertension, fibro or both?
Posted 11/21/2009 1:55 PM (GMT 0)
Hi Jenpro and welcome. In the fibro 101 thread there is a list of "what else could it be" did they bother to rule all those out before giving you a dx of fibro??? We have many on here that can't even get a doc to give them a dx of fibro, it's like their docs are afraid to say the word. Having fibro can be very frustrating cause of the controversy in the medical field and in society. I so wish I had magic powers and could make some feel what I feel everyday just to show them what living in a fibro body is like. devil That's why we are so close on this forum cause we all understand what each other is going through.

 

We all have our own little things to help us deal with the pain and fatigue of fibro. We know more about what helps with fibro than the docs do. I love my massaging showerhead, Jeannie just got a new massaging chair cushion and when we find something new that works we share it with everyone but what works for some doesn't work for others.

 

I was also dxd with Sjogren's while they were doing all the testing to find out what was wrong with me.

 

Stick with us and you will learn more about fibro than you ever wanted to know. smilewinkgrin

 

luv and hugs

Marlee

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