if you or a loved one deals with fibromyalgia

[snickerplum]

How were you diagnosed? What symptoms led you to seek medical advice?

[Only me]

I have fibromyalgia. I was diagnosed about 3 years ago. I had been seeing my doctor for severe chronic low back pain but then started having all over pain and extreme fatigue. She sent me to a rheumatologist who diagnosed me with fibromyalgia. I still think that I may have something completely separate wrong with my back since that pain is 24/7. My fibro pain is almost always there but different parts of my body hurt worse on different days and will intensify from time to time as well as fatigue.

 

If you go to a rheumatologist they will see how many tender points you have as well as discuss fatigue. The best way to describe my symptoms is that I constantly feel like I have the aches and pains like the flu as well as constant fatigue and low stamina.

 

I'm actually hoping to go to a hospital like Mayo soon since no one can figure out my back pain. We feel it is separate from the fibro. I also possibly have an autoimmune disease such as Lupus but have not been diagnosed yet. I have a family history and have symptoms such as rashes and joint pain that don't happen with fibro. I had some tests that indicate a possible autoimmune disorder but further testing hasn't been able to pinpoint which one. So actually I may be dealing with 3 different things.

 

What symptoms do you have? I would suggest going to a rheumatologist as they deal with fibromyalgia. Please feel free to ask more questions or PM me. I also know that others on this board also have fibromyalgia.

[Ravin]

DD has been diagnosed with fibromyalgia. She'd been complaining for years of aches and pains that seemed like more than just "growing pains" and we were finally after repeatedly bringing it up with multiple PCP's referred to a pediatric rheumatologist. She found plenty of tender points, eliminated arthritis because even though DD's main pain complaints are centered on joints, there's no swelling. Turns out DD's frequent stomach complaints, fatigue/low stamina all tie in as well. She prescribed physical therapy and an OT eval, and said the most important thing we can do is keep her moving and active.

[ElaineJ]

I was also sent to the rheumatologist. This is helpful because they not only deal with the fibromyalgia but can also help you eliminate other possible diagnoses, such as various autoimmune diseases that involve similar symptoms. I initially went to the doctor because of chronic exhaustion, joint and muscle pain, and other strange "issues" such as lymph nodes that were swollen for 6 months. It took me several years to finally get referred to the rheumatologist and diagnosed. This is unfortunately common, so I hope you get the help you need without such a lengthy and difficult process! :grouphug:

Elaine

[Carrie12345]

My GP dx'ed me a few years ago. Honestly, I question the dx, but I question absolutely everything, so there's that, lol.

I went in for vague, unexplainable, wide-spread pain that had been nagging me for years.  GP squished the standard spots and declared Fibro. The waiting list for a rheumatologist wa 8 months.  A friend of mine had seen multiple specialists in a 100 mile radius and never got much help, so I pretty much threw up my hands.

My pain, though very real, was never as extreme as the stories I've read in my research, though.  SInce changing my diet and exercising, I rarely get any mysterious pains anymore.  It usually shows up just as I'm getting confident that the dx was wrong. :tongue_smilie:

[Lizzie in Ma]

Just putting this out there.  The rheumatologist told us our eldest had fibromyalgia at 16!  Average age on onset for fibro is 45!!!

Again, if I can help one person, then I will be happy.  What have you got to lose by looking into it?

 

http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease

 

http://www.psychologytoday.com/blog/why-can-t-i-get-better/201312/are-your-fibromyalgia-symptoms-due-lyme-disease

 

http://www.fibromyalgia-symptoms.org/fibromyalgia_lyme.html

 

http://lymemd.blogspot.com/2008/06/fibromyalgia.html

 

 

[Spryte]

Just putting this out there.  The rheumatologist told us our eldest had fibromyalgia at 16!  Average age on onset for fibro is 45!!!

Again, if I can help one person, then I will be happy.  What have you got to lose by looking into it?

 

http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease

 

http://www.psychologytoday.com/blog/why-can-t-i-get-better/201312/are-your-fibromyalgia-symptoms-due-lyme-disease

 

http://www.fibromyalgia-symptoms.org/fibromyalgia_lyme.html

 

http://lymemd.blogspot.com/2008/06/fibromyalgia.html

 

Voice of wisdom.

 

When I got my Picc line put in for Lyme, the doc and I were talking about all my prior (mis)diagnoses and when we got to fibromyalgia and chronic fatigue syndrome, he mimed wadding them up and throwing them in the trash.  He called them wastebasket diagnoses.  

 

Fibromyalgia is a syndrome, which is the name for a set of symptoms.

 

Please look for the root cause of those symptoms.

[Only me]

Spryte I wish the doctors would look in further for me. I truly believe I have something else going on. They tested me for Lyme but it was negative. My ANA was positive on 3 occasions. I know that doesn't necessarily mean autoimmune disease but I don't believe I could have 3 false positives. I've had other symptoms too that they don't have a explanation for: rashes, intolerance to heat, extreme joint pain that comes and goes, and several more. It's frustrating when they say it's fibro and to basically throw meds at me that don't work and cause bad side effects.

[ElaineJ]

Voice of wisdom.

 

When I got my Picc line put in for Lyme, the doc and I were talking about all my prior (mis)diagnoses and when we got to fibromyalgia and chronic fatigue syndrome, he mimed wadding them up and throwing them in the trash.  He called them wastebasket diagnoses.  

 

Fibromyalgia is a syndrome, which is the name for a set of symptoms.

 

Please look for the root cause of those symptoms.

 

This is so hard, because so many of us have been to innumerable doctors and been subjected to uncounted, expensive tests looking for root causes to no avail. I've almost cried in doctor's offices as they have looked at me in obvious frustration. Having Lyme, I know you have been through the wringer, too. :grouphug: It is hard to be open to more possibilities after awhile, though.

Elaine

 

[Spryte]

I know it's hard. ((Hugs)) I went 20 years misdiagnosed. DSS made a video game of doctors throwing diagnoses at me. :) I mostly lived with diagnoses of fibro, CFS, and MPS, and MS, but there were lots more. Enough meds to kill an elephant.

 

If you're like me, you'll go through cycles of looking for answers intensely, then settle into a diagnosis and not want to look further. That's ok. Live with it when you need to. Cycle repeats. So... When/if you are in the looking for answers phase sometime... Use Lizzie's links and find an LLMD to properly rule out Lyme and coinfections.

 

FWIW, I was accidentally diagnosed by a vet friend of a friend. Yep. She heard my symptoms and just knew. Then I found an LLMD, and dumped my rheumie and the two neuros who had been treating me. I had 13 undiagnosed chronic infections! Ouch.

 

I feel very well now, but it was a hard, long road.

[kewb]

Just putting this out there.  The rheumatologist told us our eldest had fibromyalgia at 16!  Average age on onset for fibro is 45!!!

Again, if I can help one person, then I will be happy.  What have you got to lose by looking into it?

 

http://www.envita.com/lyme-disease/the-surprising-link-between-fibromyalgia-and-lyme-disease

 

http://www.psychologytoday.com/blog/why-can-t-i-get-better/201312/are-your-fibromyalgia-symptoms-due-lyme-disease

 

http://www.fibromyalgia-symptoms.org/fibromyalgia_lyme.html

 

http://lymemd.blogspot.com/2008/06/fibromyalgia.html

 

I feel like I am always shouting "Lyme! Get tested for Lyme!  Find a Lyme literate doctor! Make sure you get the blood test done at Igenx. Oh, and the test is somewhat unreliable so even if it is negative it can still be lyme. Get tested for the common coinfections of bartonella and babesia."  

 

Going through all of dh's incorrect diagnosis I see lyme everywhere but I think a lot of the time it is lyme.

[Supertechmom]

I feel I am always shouting CELIAC!!! Suffered for 15 years with fibro, felt like dirt and barely could manage to do anything, 8 months of a strict gluten free diet and the pain /fatigue/ old feeling was gone. I could move and not think I was going to die later. Seems like fibro people with IBS may actually be misdiagnosed and have Celiac instead. Anytime I fall off the gluten free wagon, the joint pain/fatigue starts up.

[Lizzie in Ma]

Spryte I wish the doctors would look in further for me. I truly believe I have something else going on. They tested me for Lyme but it was negative. My ANA was positive on 3 occasions. I know that doesn't necessarily mean autoimmune disease but I don't believe I could have 3 false positives. I've had other symptoms too that they don't have a explanation for: rashes, intolerance to heat, extreme joint pain that comes and goes, and several more. It's frustrating when they say it's fibro and to basically throw meds at me that don't work and cause bad side effects.

Oh dear, that so sounds like Lyme and company.  I would bet anything and everything that you do NOT have fibro with those symptoms.  DD has had 4 positive ANAs.

The "crap lab" tests are often negative.  Sometimes bands will show up on a crap lab western blot but if it isn't CDC positive it gets stamped negative and not knowing any better, it gets ignored.

I would go to http://www.igenex.com/Website/

I would order a test kit and when it gets to you, have your Dr. sign off on it, then go get it drawn and send it back.

Yes, is is a little pricey, but the rep from Igenex told me insurance will often reimburse for it if not the first time you send it in, the the second.

This explains about the issues with laboratory testing and Lyme.

http://www.igenex.com/labtest.htm

Please pm me if you have any questions.

[Jean in Newcastle]

I've been diagnosed for 20 years.  I've been tested by rheumatologist, neurologists and sort of a catch all specialist in chronic illness (I don't know what his actual degrees were in).  No one has come up with an alternate diagnosis that fits.  Magnesium helps my muscles but doesn't cure it.  PT helps me but doesn't cure it.  Thyroid medicine (diagnosed hypothyroid separately) helps but doesn't cure everything.  Vitamin D (diagnosed with low levels of vitamin D which are regularly checked) helps but doesn't cure everything.  Keeping my bloodsugars steady (diagnosed with adrenal problems plus PCOS) helps but doesn't cure it.  Anti-parasitics helped but didn't cure it.  

[TianXiaXueXiao]

I have lived with chronic joint and muscle pain for my entire adult life. I've always been petty athletic until my last pregnancy. I was diagnosed with fibromyalgia when I was 22 and I was never really satisfied with the dx. A few months ago, when I was at a doctors appt with dd10, her pediatrician noticed that we both have sloping shoulders and hyper mobile joints. She asked if I had costochondritis, tmj, and other chronic joint pains and I told her that I did and had been dxed with fibromyalgia. She then emailed me a series of videos and websites that detail the various physical symptoms and descriptions of Ehlers Danlos syndrome. She believes that dd and I both have a mild form of hyper mobility eds which is frequently misdiagnosed as fibromyalgia. If you have hyperextending joints and chronic pain, I recommend you look into eds.

 

Updating with additional information just in case it resonates with anyone. http://boards.medscape.com/forums/?128@@.2a304a60!comment=1

 

 

Is It Fibromyalgia or Ehlers Danlos Hypermobility Syndrome? Bruce Buehler, MD, Pediatrics, General, 11:21AM Mar 19, 2012

Fibromyalgia remains an enigma for diagnosis and testing. No specific cause or gene has been isolated. Often it is the diagnosis of exclusion after an extensive medical workup. Recently, patients with Ehlers Danlos syndrome type 1 have been shown to have many of the physical complaints associated with fibromyalgia.

Ehlers Danlos type 1 has a specific gene test. The main clinical features are excessively soft, elastic skin that heals poorly after injury. There is looseness of all the joints with dislocation of the knees, elbows, and shoulders being common. The underlying cause is abnormal collagen causing loose ligaments and poor skin integrity.

Type 3 Ehlers Danlos, also known as hypermobilty type, has the same symptoms but there is no genetic test available yet. The clinical findings to determine type 3 include, ciigarette paper scars that are translucent, and a history of joint dislocation after minor lifting. Patients have weak ankles and often experience sprains just walking. Patients can easily push their thumbs back to touch their wrists and younger patients can place there feet behind their heads. Finally, patients can place their hands flat on the floor when bending from the waist. Many patients have mitral valve prolapse.

Patients with Ehlers Danlos hypermobility syndrome experience joint pain, especially after standing or lifting. They have a feeling of pain in their skin, which has not yet been explained. Due to joint mobility, they develop artritis in their late 20s. Many of these symptoms mimic fibromyalagia, but treatment is quite different. Specific medications are used for fibromyalagia, whereas for Ehlers Danlos the treatment is intensive physical therapy and analgesics. Physical therapy is focused on strengthening the muscles above the joints while not stretching the ligaments. Skin lacerations should include subcutaneous sutures, trying to avoid suturing the skin alone.

There is no cure for Ehlers Danlos, but lifestyle changes can help your patients. The best resource for patients is the Ehlers-Danlos National Foundation (EDNF). For many patients, the diagnosis helps them cope with this chronic condition.

 

[Kathryn]

I was diagnosed with fibromyalgia and CFS (and some other things) eighteen years ago. I honestly don't remember much about the process. I have huge gaping holes in my memory from that time period when I was very ill. I remember being poked in specific painful places. I spent about three years very sick until I finally started to climb out of it and have been pretty stable for the past twelve years or so. I know my limits and don't push them and have been mostly med-free for the past decade. I don't even remember to list those diagnoses on doctor checklists anymore. Though, I did get denied life insurance because of them. :/