Anyone originally misdiagnosed with Fibromyalgia??

I was diagnosed with Fibro three years ago. I'm 23 now. It began with Brachial Plexitis and went downhill from there. None of the doctors I've seen have checked my tender points which I'm pretty sure by now is the standard way to diagnose Fibromyalgia, in addition to all the other symptoms of course. My recent MRI was clean for Ankylosing Spondylitis. And all bloodwork has also been negative for Rheumatoid Arthritis, Lupus, etc.
I feel the only reason I was told I have Fibro is coz they all just assumed I'm depressed and because the tests didn't show anything. i say this because they barely heard me when I talked about my joints and declared that i just "feel" that its in my joints (since the tests were normal) whereas its actually in my muscles.

It's been three years and the condition of my joints has been getting worse which leads me to believe that I may have been misdiagnosed.
My muscles are not as much of a problem as my joints are although i do have chronic pain (presumably coz they get overstressed). Joints are very unstable because i which I fall a lot. My physiotherapist cum Yoga instructor tells me that my joints (ankles, knees, hips, shoulders, elbows) are too loose and in fact move way beyond the normal range of motion making me super flexible. Yet no doctor has ever checked me for joint hypermobility. My joints pop out and back in (I don't know how to explain it but it's not the way other people dislocate their joints. It happens spontaneously and they go back in with relative ease). Even so, the chronic pain is unrelated to the joint "dislocations". And since starting Yoga my joints have become even more loose leading to more instability.

Fibromyalgia sucks but from what I'v read, it doesn't progressively get worse. And unstable (that sounds like an understatement now) joints feature nowhere in the diagnostic criteria. My condition on the other hand is definitely getting worse. Last night my left hip came out simply because I bent a little to pick up something from the floor.
Does any of this sound familiar to anyone? And also I do have very soft, stretchy skin which i previously thought was a good thing but apparently it isn't! Get bruised a lot but I'm not anemic. And stretch mark like white scars everywhere even though I've never gained weight. By everywhere i mean even in places like top of the thighs where even heavy people don't have them. I'll never be caught in a bikini for sure!
If anyone likes I could provide more symptoms..Got lots where these came from!

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Yes my rheumatoid doctor diagnosed me with fibromyalgia and ran all of the tests you have had. I finally made an appt with a geneticist who then confirmed the diagnosis of EDS. Good luck.

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I was diagnosed with fibro at age 20 and then saw a new doc at 24 and was finally diagnosed. This was when there was very little on EDS. There was no internet and no support groups. We are so lucky now that we have all the info and support. I had at least 10 joint surgeries before I was diagnosed. I too fall alot and that has caused me to tear both shoulders. The only thing on the Breighten scale that I can't do is touch to ground. All of my joints are hypermobile. I have had chronic joint pain since I was 6 and have very soft skin which stretches. That is good that you now have the correct diagnoses.

Luckily now I have a wonderful set of docs who are willing to help with pain control and who understand the things we can/can't do. They let me have a say in decisions that are made. They don't dismiss the pain I have having and if I think something is wrong we get the scans that are needed. I guess it helps that I work for a Medical college which also does a lot of research so they know that things aren't always what they seem.

I would guess that most of the people on here have had some of the same experiences that you have had. This is a wonderful place to get info and get some emotional support. Everyone on here has been wonderful and I have received a lot of info that I didn't know.



Hugs (gentle) from one zebra to another

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Thank you for your replies! This really does seem like a great community and I'm sure I'll get a lot of answers. Thanks Jmbens4, I appreciate your reply.
Actually, tamarafk, I haven't yet been diagnosed with EDS. But it feels good to know that there are others out there who can understand all these strange things.
I've never had joint surgeries although I have hypermobility in all my joints. Ankles are especially prone to twisting. And knees keep getting locked or giving away if i'm not careful.
Both Fibro and EDS share a lot of common symptoms and both don't have a cure so do you think it makes any difference in the treatment if i'm diagnosed with one or the other? On the other hand, I really do get frustrated when I think about a possible misdiagnosis especially because the reason they think I have Fibro is all wrong.
I'm not technically a Zebra yet but a gentle hug to you too!

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Fibromyalgia can be a symptom of EDS. I originally was told fibro and then told that it wasn't a perfect fit for my problems. IN the meantime I started studying about fibromyalgia and natural health and even went back to school to try to figure out how to get well since the doctors couldn't seem to help. So I now have a whole website centered around fibromyalgia. When I have time and energy to work on it again. I will update it by adding all the EDS and mast cell information I've learned in the last year. I need to update the About page too. I have over 130 pages, mostly about fibro. It's at www.debdrake.com if you want to look over it. Many of the solutions that help with fibro may help but will not be a cure for those that have fibro symptoms caused by EDS or mast cells. But I've tried almost everything there. I still take high amounts of magnesium and a few of the other things on the site.

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Coco,

You really should get an appointment with a genetics doctor and see what they have to say. There are certain things that can help with the pain for EDS that wouldn't pertain to Fibro. My hands were really hurting and just putting on splints to stop the hyperextending has made all the difference. I too have ankles that are very loose. When I sprain my ankle, most times it takes a cast to let it rest to finally get rid of the problems. Knee braces (which I have worn) help with the knee hyperextending. You really need to get a correct diagnosis. I was told all my life I was just clumsy and was made fun of by my peers. From what you are telling us, it sounds like you might have EDS. There is a scale called the Breighton scale. I would take a look at it and see which parts you relate to.

I know I am rambling. English was never my strong point. Do you have a GP that is helping you deal with these issues? If not, you really need to get one that will work with you instead of against you. If it takes you 3 or 4 or more, you need to keep searching. I have been really lucky in that aspect.

hugs

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Hello Coco...and Welcome!

There was a study taking a large number of of patients with Fibromyalgia and assessing them for EDS. They found about 50% were misdiagnosed...they had EDS. So the answer to your question is, "Yes", many people with EDS were erroneously diagnosed with Fibromyalgia before being diagnosed with EDS. You can read some of their stories in the Incredible SmileMommy's thread about Misdiagnoses: http://www.inspire.com/groups/ehlers-danlos-national-foundation/discussion/ what-were-your-misdiagnoses/

And, yes, it is very important that you be diagnosed correctly. Why? Because 1) Medications to address your pain- the medications directed toward Fibromyalgia pain often do not take care of EDS, but by having a misdiagnosis of Fibromyalgia then you would not be given access to other medications that could better control your pain, and 2) Physical Therapy-Physical Therapy for Fibromyalgia can cause a lot of damage in a person with EDS as the types of therapy needed for each condition are vastly different. So having the correct diagnosis will allow for better suited pain control and help you receive therapy and other resources appropriate for you.

I am in the camp that says you can't have both EDS and Fibromyalgia. It's a controversial topic with proponents making cogent arguments on both sides of the discussion. In the diagnosing critiera for Fibromyalgia, it states that all conditions that produce similar symptoms must be ruled out first as Fibrolmyalgia is a diagnosis of exclusion. As you stated, the symptoms of Fibromyalgia and EDS are similar. So if an individual is diagnosed with EDS, then they could not have Fibromyalgia. That is my position which others will disagree. But in the end, it is about getting you the care you need to have the best life possible.

Gentle hugs...

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First of all I wanna say, I'm really very thrilled to get so many replies from people who know what I'm talking about! Especially since they're coming from people older and more experienced than me.
I checked out the Beighton scale. I can touch the floor, make both my thumbs touch my arms and my knees definitely hyperextend, the left one even more than the right one. In fact, both my knees automatically bend backwards when i'm standing (it's called genu recurvatum i think). I'm not sure about the elbows. They do hyperextend noticeably but I can't be sure if it's over 10 degrees like the knees. Other than I'm overtly bendy with my hip joint and shoulders (I can make my arm rotate almost fully from the shoulder). I can even bend my toes inwards make my ankles 180 degrees with the legs. My hips move excessively when I'm climbing or going down stairs. Wheww..I almost started to feel great about myself till I remembered I'm in constant pain coz of all this. Sitting, standing and walking for over 10-15 mins at a go is painful.
Climbing and going down stairs is quite a challenge especially in front of other people coz I look like an old, arthritis-ridden lady! Sometimes I don't get to know if my foot is sideways or back is crooked unless someone tells or i look.

The last doctor I saw (a Rheumy) did say I have Fibromyalgia but didn't give me any pain medication. He only suggested Yoga and Meditation and said I probably have Chondromalacia Patella in the knees. I have also been diagnosed with Costochondritis in the past.
Do any of you also experience severe pain and swelling in the breasts for 15-20 days in the month (beginning with Ovulation and ending by the end of the period) coz that absolutely sucks! They say i have Fibroadenosis but maybe it's related to EDS.
I don't want to read too much into all this and diagnose myself till a doctor confirms it but I definitely want to know as much as I can. I'm planning to see a new Rheumy soon.
Any suggestions on how to convince Rheumy to think beyond Fibro!?

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HI Coco,

Yep, sounds like you are one of us! (I hate stairs too!)

Talking to a doctor...I went with, "So, have you heard of Ehlers-Danlos Syndrome? [if the answer is "yes"...] Do you think it is possible I have it [whilst handing him or her the diagnosing criteria]. If the doctor has not heard of it, you will need to see a different doctor. It may be helpful to call ahead to learn if a doctor in the practice knows about EDS and other Connective Tissue Disorders to save yourself the trip.

EDS is a collection of genetic collagen defects. Each type of EDS is defined as a distinct problem in making or using one of the types of collagen. Collagen is also the most abundant protein in the body, so effects can be wide-ranging in both location and severity. Collagen is what the body uses to provide strength and elasticity to tissue; normal collagen is a strong protein that allows tissue to be stretched but not beyond its limit, and then safely returns to normal. With badly built or processed collagen, some of the tissue in your body can be pulled beyond normal limits, causing damage. Collagen is the most abundant protein in the body and can be found almost anywhere, in skin, muscles, tendons and ligaments, blood vessels, organs, gums, eyes, and so on. EDS is really pretty "invisible". Some of the effects can be seen, but not all. Pain, for instance, can be widespread—it's amazing how many places collagen is used in your body, including the fascia, the "Saran Wrap" that holds everything together and wraps around your entire body—but the pain isn't going to show up in MRIs or X-rays, and will be probably be out-of-proportion to anything they can find.

You can find the genetic tests off the NIH's main page for EDS genetics, http://ghr.nlm.nih.gov/condition/ehlers-danlos-syndrome — the tests are identified in links at the bottom of the page.

For more information on specific types from NIH, also check out

• Ehlers-Danlos Syndrome, Classic Type http://www.ncbi.nlm.nih.gov/books/NBK1244/

• Ehlers-Danlos Syndrome, Hypermobility Type http://www.ncbi.nlm.nih.gov/books/NBK1279/

• Ehlers-Danlos Syndrome Type IV Vascular http://www.ncbi.nlm.nih.gov/books/NBK1494/ and http://www.ncbi.nlm.nih.gov/pmc/articles/PMC1971255/

• Ehlers-Danlos Syndrome, Kyphoscoliotic Form http://www.ncbi.nlm.nih.gov/books/NBK1462/

• COL3A1 haploinsufficiency results in a variety of Ehlers-Danlos syndrome type IV with delayed onset of complications and longer life expectancy http://www.ncbi.nlm.nih.gov/pubmed/21637106

Here are a couple of EDNF publications that might help:

What is EDS? http://www.facebook.com/note.php?note_id=10151543135885657

Pain, Physical Therapy, and Pain Management 2012 http://bit.ly/J9vZ8W

"So You Think You Might Have EDS?" http://www.ednf.org/index.php?option=com_content&task=view&id=1777&Itemid=8 8889242

An over-view of EDS which points out a lot of the problems is Dr. Clair Francomano's "Ehlers-Danlos Syndrome Update 2011: What We Know—And What We Don't Know" presentation at the 2011 EDNF conference, http://www.ednf.org/images/2011conference/Handouts/Francomano_EDS2011_What_ We_Know_2slides.pdf

The Prevalence of Non-Surgical Complications in the Ehlers-Danlos Syndrome http://www.ednf.org/index.php?option=com_content&task=view&id=1256&Itemid=8 8889208

What is EDS? http://bit.ly/II6QDW

Ehlers-Danlos Syndrome http://www.ednf.org/index.php?option=com_content&task=view&id=1650&Itemid=8 8889208

What are the types of EDS? http://www.ednf.org/index.php?option=com_content&task=view&id=1348&Itemid=8 8888969

The "EDS Guides" menu (on the left at http://www.ednf.org/index.php?option=com_frontpage and throughout the EDNF site) includes:
EDS in Practice: Pediatric and Adult Clinical Checklists
EDS Medical Resource Guide 2007
EDS Medical Resource Guide 2010
Dentistry Medical Resource Guide
Emergency Room/Surgery Booklet
Guide to EDS Child
Ophthalmology Medical Resource Guide
Pain Mgmt Medical Resource Guide
Pain & Pain Management 2012
Physicians Directory
Ritter Rules
Sports Poster
Vascular Medical Resource Guide
Vascular Primer
VEDS Clinical Reference Manual

I hope you can get properly diagnosed without delay.

Gentle hugs....

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Coco,

I would suggest seeing a genetics doc. That seems to be the best at getting diagnosed. They also seem to know more about EDS. The Rheumy doc can help manage the pain and other issues once you get a dx or you can use your regular GP for that. My GP has been a great advocate for me and has helped in so many ways.

Snap has a lot of good articles about the EDS. The EDNF website is great for information. It was a wonderful reference. She always knows the article to get you the info you need.

I hate stairs also but have made myself use them if I am having a not so bad day. My knees both need to be replaced and have for the last 20 some years. Have just been putting it off because I know that will take care of all of my pain. I try to stay as active as possible since staying in one position too long is not good. As I tell everyone, God used spare parts when he created me but they just don't quite fit together.

Where are you from? Maybe someone on here can guide you to a doc in your area that they have had a great experience with.

hugs,

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Fibromyalgia is so commonly misdiagnosed. I work on people with this and we can usually relieve it in 1 session. This is because there is a link between fibromyalgia and faulty mechanics. When I correct the mechanics the pain goes away. there are some excercises one ca do and I also recommend using Pure Citrus Bioflavonoids because they stop swelling which causes much of the pain. Feel free to contact me.

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Ah..I doubt anyone would know any doctors where I live as that's far away in India! I don't know about what it's like in other countries but here doctors really begin to doubt your sanity if you know too much about your problem. Patients are supposed to be lost little creatures who better not know any big words! I'd love to go with the straightforward approach you suggested Snap (thanks for all the info by the way!) but it's just gonna make them think I know too much off the internet and that i want a disorder for attention or something..i donno..not just doctors but even people think like that.
Ok in the middle of writing this I began searching and found an excellent Medical Genetics department although I'll have to travel a lot as it's in the southern part of the country and I live up north. But i think I'll go for it.
Thanks sooo much everybody! I'm definite in my mind now that I should go to a geniticist and not a Rheumy at first.
Another thing..how much skin involvement do you have? Do you also have inexplicable stretch marks? I've never gained weight yet I have stretch marks on hips, butt, near armpits, ALL over thighs, above and behind knees, calves..and as far as i know that has to do with collagen. Even my veins are visible all over the body especially the chest where it looks like somebody has drawn something on the skin!

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Yes - diagnosed with Fibro. Wanted 2nd opinion which lead me to hypermobility syndrome diagnosis and then recently to EDS diagnosis.

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I was diagnosed with it years ago. My Dr. at the time was thrilled to finally have a diagnosis for me, as he believed Fibro is a "real" issue vs. a wastebasket thing. (He believed is a sleep disorder.) I saw 2 neurologists and 2 neurosurgeons after my Chiari diagnosis and none mentioned EDS, even with my weird medical history. My current PCP told me it was doubtful and she'd never had a patient with it (and she's one of the best I've ever known!) but to her credit said - something - was truly wrong and was very supportive.

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Hey lea1987, how come you were first diagnosed with hypermobility syndrome? Is it different from EDS?

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Hi Coco - A rheumatologist diagnosed the Hypermobility Syndrome and said that I needed to see a geneticist to see if it is EDS. Dr. Levy and Dr. Francamno (two awesome geneticists specializing in connective tissue disorders) are very close to where I live so I think she just deferred to the specialists in EDS. There are some discussions that hypermobility syndrome and EDS Hypermobile type are the same things. If it were not for my desire for a 2nd opinion and getting lucky picking a rheumatologist - I would still be floundering trying to figure out why I hurt so much. I am so grateful. I am also SOOO lucky to be so close to Dr. Francomano (she is the geneticist diagnosed me).

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yes - dx with fibro and benign hypermobility until a severe post-op bleed made that be reassessed. A geneticist got it correct. I mean first they can look at me (therein starts the mis-diagnosing), doctors don't really look at their patients. The whites of my eyes are blue.
It goes on from there. I am a 9/9 on beighton scale etc. etc.

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I, too, was diagnosed with Fibromyalgia about 10 years ago, but that never sounded right to me because it couldn't explain the various pains I'd had since childhood. Even after taking 3 years off work, my pain kept getting worse and worse as I aged and my joints became more and more problematic as well. This finally made me look into EDS, which a neurologist had suggested way back in 1997, but since I never had true dislocations (and the Internet hadn't made all the information on it available) I didn't think I had it.

By 2008, when I had to give up working again due to constant chronic pain plus increasingly frequent acute pain episodes, the EDS symptoms fit perfectly. It took me until this year to convince my doctors I had EDS and I did it by making a 3-page list of all the EDS symptoms I'd had in my life. Even I was shocked to see how clear the signs were if you knew what to look for. I'm still in the 6-month wait for my genetics appt at Stanford, but my Primary Care doc and a Rheumatologist were convinced by my painstaking documentation of my daily symptoms.

I've been keeping a detailed daily "Pain Diary" since 2001, with the severity, type, and location of every pain described, along with the meds I'm taking for it (opiates since 1995) and any activity I engage in. I think it's this vast store of documentation that convinced the doctors and got me SSDI as well (without a lawyer on 2nd try).

I can especially relate to "severe pain and swelling in the breasts for 15-20 days in the month", which doctors seem to think is no big deal, but it drives me nuts. Just being sore and uncomfortable most of our waking hours doesn't count for doctors :-) I never thought it was related to EDS, and you're the first person I've ever heard mention this.

What a great feeling: "It's not just ME!"

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I had the 15-20 day pain and swelling also. I thought it was normal???

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