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Posted 7/31/2014 2:41 PM (GMT 0)
Hi guys!

I just stumbled upon this forum and it seems like a great resource for anyone dealing with a chronic illness so I thought I would sign up!

My name is Lisa and I am 25 years old. I have been suffering from a myriad of symptoms for several years now and I keep getting diagnosed with different chronic illnesses and then I keep getting told I was misdiagnosed. So far I have been misdiagnosed with fibromyalgia, multiple sclerosis, lupus, and Parkinsons. I am being tested currently for Ehlers Danlos Syndrome but I was told the chances are high that I have fibromyalgia along with whatever else it is that's been brewing in this immune system.

Last year I had to go on short term disability from my job as a retail manager because of severe vertigo and muscle weakness and I got bored very quickly so I figured I would start documenting some of the ups and downs of life with a chronic illness on a blog. I started a blog called Damsel in a Dress atand I use that as an outlet to talk about what's been going on with my health but with more of a humourous flare (usually).

If any of you have blogs I would love to check them out because there isn't much better therapy than finding people who can relate to you when you are faced with these obstacles.

I look forward to reading your posts and learning more about the group and maybe getting some advice from you guys!

Take care!

Lisa

Post Edited By Moderator (Sherrine) : 7/31/2014 9:32:35 AM (GMT-6)

Posted 7/31/2014 3:43 PM (GMT 0)
Welcome to HW. Sorry, I don't blog, but you're welcome to come here for support.
Posted 7/31/2014 3:46 PM (GMT 0)
Hi, Lisa, and welcome! You have mentioned most illnesses that share the same symptoms as fibro...all except Lyme disease. Have you been checked for that? The treatment is entirely different than that of fibro and you can have fibro and Lyme disease. So you might want to check that out.

Do read our forum rules. I took out your blog address because it's not allowed in the body of the post...only in your signature or your profile. We don't want people coming here to promote their blog because that is spam to us so that's why I edited your post. The whole purpose of HealingWell is to support one another and learn about this illness.

Be sure to read Fibro 101...the first thread on the forum. There are links to good info about fibro and you will learn a lot there. Good starting links would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. This might help you see what is going on with you. All of Fibro 101 is good so do read it.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine
Posted 7/31/2014 3:52 PM (GMT 0)
Thanks Joy and Sherrine!

I understand about the blog url! I guess I could ask people to send me private messages if they have some cool blogs I could check out.

Regarding lyme disease - I am from Canada where most doctors will not treat for lyme disease and you have to send for your own tests to the United States. My mother is convinced that is what I have but it's so hard to even get a doctor to mention it around here so that has been left out of all conversations regarding a diagnosis.

I was diagnosed with fibromyalgia about five years back but since then I have had a lot of new symptoms that make doctors think it is something else, but they still seem dumb founded by what it could be because most tests are coming back negative.

It's a frustrating path to be on so I'm glad I found this board to share that and to read about other peoples journeys!
Posted 7/31/2014 5:56 PM (GMT 0)
Sherrine makes sense when she says it could be fibro plus something else. I hope you figure out what is going on. It is frustrating because sometimes it can take a long time to get a diagnosis. What were your new symptoms? The ones that made the doctor say it wasn't fibromyalgia?

I hope that you feel better soon. Welcome to the forum!

Hugs, Karen...

We also have a chronic pain forum you might want to check that out too...

I have been reading a book called "How To Be Sick". It is about a woman dealing with a chronic illness and the things that she does to ward the symptoms off. It is pretty interesting, you might want to get it. I got mine on Amazon...
Posted 7/31/2014 6:52 PM (GMT 0)
Lisa, listen to your Mom. If you want to really find out if you have Lyme or not, you should have your blood sent to IGenX Labs in Palo Alto, California. They are supposed to be the most accurate at diagnosing this.

Also, we have a wonderful Lyme forum here on HealingWell and I'm sure there are Canadians on this forum. We have quite a few Canadians as members. They can help you find a Lyme-Literate doctor if you find you need one. Remember, fibro isn't considered a progressive illness. If you find you are getting worse and worse, do continue searching. It's too easy to give the "fibromyalgia" label and then anything that happens they blame on fibro. That happens here too. So it's very important to be your own advocate when it comes to your health.

I had this happen to me a couple of years ago. I continued to get worse and worse, my back and hips were killing me, I had raw nerve pain running down my legs, and I needed two canes to walk and my strides were in inches. I was blaming it on fibro but then remembered that it isn't considered a progressive illness. Thankfully I have a wonderful Internist and he suggested I see a Rheumatologist and he gave me some names of excellent ones. I chose one, he ran sooo many tests, about 25 x-rays, 8 vials of blood work, and 2 MRI's. Turns out I also have a disease of the spine along with fibro. I was given the correct medication and my back is 90% better, I have no more raw nerve pain in my legs, and I walk with a totally normal stride with NO pain and NO canes! So it is very important to follow your gut instincts.

Do let us know what you find out because we do care about you. BTW, I love your user name. It gave me a good chuckle!

Sherrine
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