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Posted 6/25/2015 12:58 PM (GMT 0)
Hi, I have a list of symptoms that have me under the care of many specialists. I met with a Rheumatologist who was a terrible person and she said: I'm going to tell you what not one else wants to, you have fibromyalgia. Now the problem with that is that I have neuropathy that a neuro can see. I have inflammation in my blood work. And everything else has not been ruled out. I haven't even been tested for Celiac.

I have been reading about fibro and I keep seeing that sleep difficulties is a huge symtom. I sleep great. I fall asleep in minutes. I stay asleep. I don't have a huge problem with fatigue. I don't need to nap. Is anyone out there who has fibromyalgia with out sleep issues?

Amanda
Posted 6/25/2015 1:37 PM (GMT 0)
I sleep well...now. For years I didn't until I started avoiding caffeine after early afternoon and put myself on a sleep schedule. I also started a muscle relaxer and that helped too. I fall asleep in minutes and am not fatigued, usually.

You do need to get things like lupus and Lyme disease ruled out. You also need to find a good rheumy. Diagnosing you before ruling out other illnesses that have many of the same symptoms is very unprofessional and lazy, in my humble opinion. These other illnesses have different treatments than what they do for Fibro.

Have you read Fibro 101...the first thread on the forum? Good starting links would be Symptoms, What Else Could It Be, and A Thorough Explanation of Fibromyalgia. This will give you and even better idea of what could be going on with you.m all of Fibro 101 is good so do read it.

Do let us know what you do find out because we care about you.

Sherrine
Posted 6/25/2015 1:50 PM (GMT 0)
Thank you :)

This was her way of ruling Lupus out. My gp thought Crohn's and then Lupus. A neuro thought MS years ago.

I did look at Fibro 101 and I have many of the symptoms. If I do have Fibromyalgia, great! I will accept that. I just feel like that Rheumatologist jumped the gun and hasn't cleared the other potentials before stamping me with a fibro diagnosis. She couldn't explain the raised CRP and the weight loss.
Posted 6/25/2015 2:35 PM (GMT 0)
We are certainly used to having sleep issues.. But there are mulitiple Variations of the same disease and many have other issues hand in hand with fibromyalgia....

Hope you can find all your answer
Posted 6/25/2015 4:13 PM (GMT 0)
I too don't have sleep issues, I sleep 9-12 hours a night, unless I'm in alot of pain. I rarely have fatigue either unless I'm in the middle of a flair, and even then it isn't too bad.
Posted 6/25/2015 4:37 PM (GMT 0)
Hi Amanda: I've had fibro since around 2003 (and likely before, as I had symptoms since the 1980s).

Up until a year or two ago, I had no sleep issues at all. Now I often struggle to sleep or wake up overnight and am instantly wide awake. I'm also a very light sleeper, but have always been.

I do think some of my sleep issues are age related (menopausal), so I can't rule that out. But I surely know where you're coming from when you say you sleep well. I miss those days! Maybe it shows fibro changes our sleep or maybe it's just that as we age, sleep is often (but not always) changed.

I have neuro issues, too. Have you seen a neurologist? I found out a lot once I saw one and he ran some tests. It was also a good way to rule out other conditions.

It sounds like you want further testing, and/or maybe a rheumy who listens better and is willing to work with you. I hope you find what you need and good for you for not settling for what she said! We really do have to be our own advocates in this journey.

Best wishes!
Posted 6/25/2015 7:09 PM (GMT 0)
I have seen a neuro. He diagnosed me with transverse m.......I can't remember if it's myopathy or what the word is. And he diagnosed me with trigeminal neuralgia. I also have a weird spine and he doesn't know what is wrong with it. My subarachnoid space in the sacral spine is atrophied with a widened csf. He consulted a neuro surgeon and that doctor also doesn't know. So they give me yearly MRIs to monitor it. Back then, I had neuro symptoms. Measurable by the doctors. I don't anymore.

I have an area on my lower leg / ankle that is completely numb to the touch. I can cut myself and I wouldn't feel it. The rheumatologist says that's normal. I also have a swelling in my LRQ that my gp though was IBD bc it hurts to touch. Mixed with IBS, it looked like Crohn's. My colon was perfect. Nothing was seen on the CT. But this lump can be felt by the docs, but not seen. So I'm wondering if it's a swollen ligament or something. But the rheumatologist said we don't have ligaments ot tendons right there........she must not have paid attention in class bc we absolutely do.

I'm going in circles and no one knows. I have inflammation in my blood work but we can't seem to find out why.

I have mild finger swelling, it's my entire fingers that are swollen like sausages. I have some swelling at the bottom of my leg, above my ankle.

I had chronic hives for months. Diagnosed as histamine intolerance by a specialist.

I was diagnosed with dry eye syndrome 16 years ago. My eyes are so dry that my lids don't open in the am - they feel paralyzed for the first few attempts at blinking.

I have lost a ton of weight and continue to do so.

I have sun sensitivity. Heat too.

Red dots on my lower lip.

I'm a mess. And my kids need their mom back.
Posted 6/25/2015 7:13 PM (GMT 0)
And there really is so much more. But it doesn't matter. It doesn't matter if there 20 symptoms or 2. I just want answers.

The rheumatologist asked me what meds I'm on. I said Vimovo. And she actually laughed when I said that is it. She thinks I'm seeking drugs. I'm a breastfeeding mom, I don't even take the Vimovo even though I have a bottle of it. I'm not after painkillers.
Posted 6/25/2015 7:17 PM (GMT 0)
I'm mostly just venting now. I'm so mad that she treated me like that. It was a really awful experience. She said to call her if I have any real symtoms bc she doesn't treat fibro. She is running the celiac test bc she acknowledged that fibro doesn't cause inflammation.
Posted 6/25/2015 7:55 PM (GMT 0)
Wow , she sounds awful..find a real dr.. My primary takes care of my symptoms..there is no cure, but we sure can use some help with the symptoms

Some rheumatologists do not understand or treat fibro, but you need a dr who will
Posted 6/25/2015 7:57 PM (GMT 0)
I developed severe back pain and raw nerve pain that ran down my groin to my calves. My inflammation markers were all high, too, so I knew this wasn't caused by Fibro. It turned out to be ankylosing spondylitis and sacroiliitis causing these symptoms. I was put on ibuprofen with food and a muscle relaxer. (I didn't want to take Remacade infusions so I went this route.) I'm so much better now so this might be one thing you might want to check out.

Do you have a teaching hospital near you? If so, I would head there for a complete work up. When you said your leg is completely numb in an area and the doc said that was normal is totally unbelievable!

I am praying that you get some good doctors and get to the bottom of this. You can have Fibro plus other illnesses. We have members with Fibro and lupus and I have Crohns and Fibro and we have several member that have these, too. There are answers out there. You just have to find doctors who believe in Fibro and will listen to you. That's why I think a teaching hospital would be a good choice. It's a learning environment.

Sherrine
Posted 6/25/2015 8:02 PM (GMT 0)
No teaching hospitals here. I'm taking a break and will book an appointment with my gp soon. I'm at a loss for what I can take that is safe with breastfeeding. But I'd like to test the waters with nerve blockers or something to see if fibro treatment helps me.

If it's Celiac, that answers many of my symptoms.
Posted 6/25/2015 8:02 PM (GMT 0)
I agree that you need to change rheumatologist. She sounds like one who looks only at blood work and not at the symptoms.
Posted 6/26/2015 3:42 AM (GMT 0)
Hi Amanda
I agree with the moderators and other Peers, seek a new rheumy and get tests to rule in or out other possibilities. Taking nerve blockers as a test should not be how fibro is diagnosed! It sounds like you are in overwhelm land. I am so sorry for that. We have all been there and go back at times. It sounds to my unprofessional eyes ;) like fibro may be a syndrome developed due to another, primary health issue. Take a break, love that baby and then start looking for reasonable answers from a reasonable dr.
Blessings
Posted 6/26/2015 4:00 PM (GMT 0)
Thanks, everyone :)

I am overwhelmed. I am frustrated. And I feel like no one believes me or even cares. I went to my gp with abdominal pain one year ago and gave her all of my history. It was only a colleague of hers who did blood work for ANA a few weeks ago. Which was negative. But I was labelled before all the appropriate testing has even been done.
Posted 6/30/2015 1:45 PM (GMT 0)
Manda, I am sorry that you've been feeling so bad and had such awful treatment from that rheumatologist. Are you in a small town? Any chance of getting to a larger town to see a rheumy?

Dry eyes can be one of the symptoms of Sjogrens. I would demand a test for that. It can also cause neuropathy, sun sensitivity and a whole host of other symptoms. I was sick for years and it took a lip biopsy for me to get a diagnosis. I was antibody negative but had inflammatory markers. A lot of sjoggies are also sensitive to wheat and some have celiac as well. I am also sun sensitive.

Get to another rheumatologist. Good luck to you and dont' give up until you have some answers.
Posted 6/30/2015 8:49 PM (GMT 0)
Also,

You can test celiac kinda on your own, cut out bread and wheat products, see if you notice any difference...

My physical therapist was working on a tender area lrq...yesterday.. He said it was a ligament..we can have trigger points there also..you may want to look on you tube for trigger points in that area and learn to try releasing them ..you can learn that easily on your own..

At times self help is 50 per cent of my relief..my doc other 50
Posted 7/1/2015 8:57 PM (GMT 0)
I've been through the same thing with doctors. So many doctors just look at the test results and treat you like it's all in your head. It's hard to find a good one that still cares about their patients and actually LISTENS. As far as your first question - I sleep just fine too and don't deal with the fatigue that many fibro sufferers do. I have mostly neurological symptoms and pain. Although even my pain isn't that bad anymore.... I just get flare ups now.
Posted 7/2/2015 7:52 PM (GMT 0)
Neuropathy is not uncommon with Fibro, but I don't like the dismissive attitude of your Neuro. If there are still things to rule out they need to be ruled out before declaring Fibro.

As far as the sleep issues (or lack thereof). Widespread Chronic Pain is THE hallmark of Fibro, sleep issues are just another symptom. Until the last few years sleep issues weren't even taken into account when dx'ing Fibro - it was all about the tender points. These days they take into account the tender points and combination of other symptoms.
Posted 7/6/2015 8:28 PM (GMT 0)
I'm not even sure that I for the qualifications for the widespread pain. When the Rheumatologist said that I have widespread pain in all four quadrants, she was counting pain that I haven't had in years. Pain that I reported 10+ years ago. I've rarely had it in all four quadrants, and it definately hasn't ever been chronic.

My pain is in my lower right abdomen all the time (upon palpation). And my knee usually hurts (most notable when the weather changes). Those are the only chronic pain areas. Any other pain I've had has not been in conjunction with widespread pain. I've never had pain in all four areas at once. With the only exception of flu type aches that only last a day or so.
Posted 7/7/2015 2:43 AM (GMT 0)
I am sorry to hear what you went through Manda. I think some people should not be doctors. Or there should be a place to go for normal people with chronic conditions.

My Rheumy also apparently does not treat Fibro. I found out when I was sent there for arthritis and possible R.A. After listening to my symptoms and poking at me once or twice, the NP excused herself, returned and intoned "you have fairly classic fibromyalgia". She handed me a script for Lyrica and told me basically to find someone else to take it over so I didnt come back. (I had showered, honest)

It felt like a cheap horror movie where a ringing voice says "GET OUT". The Lyrica helped significantly. What would have helped more was having someone help me make a plan for next steps so I knew what to think.

I have a great PCP who ran tests and helped me get to an even spot, but it seems pretty ridiculous that the Rheumy ran no tests and never looked at my fairly classic arthritis. I have a plan to find a new one once I get through some of the other issues I am dealing with. I am slowly finding my way, but the more I Learn, the more I realize that a good Rheumy could really have helped me find my way.

If you get a chance, check out healthgrades. It really helped me rate the Rheumys that were in my health plan. I have chosen one to go to when I am at that step.

Good luck. Let us know how it goes.
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