Old 10-06-2013, 09:55 AM #1
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Default Rare symptoms not commonly known

Fibromyaglia is known to have symptoms such as spams, sleep disturbance, weakness in the limbs, nerve pain, palpitations, multi twitching, inability to multi task these are just a few that i can think of.

My question is besides the common ones known by most of us, which other rare symptoms have you noticed on a person suffering from the disorder. At times even leading to doctors probably diagnosing the person incorrectly due to the symptom not being normally associated with Fibromyalgia. I know a few disorders that have similar symptoms to Fibromyalgia such as rheumatoid arthritis and systemic lupus erythematosus, are just a few and at present close to 30% people have a similar problem.

Please add any other ones you may know of that most of us are not aware of.
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Old 10-06-2013, 03:58 PM #2
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Default Re: Rare symptoms not commonly known

I myself have a really weird symptom that was hard to diagnose as being part of my Fibromyalgia. It is in my toes. At times after a very stressful day or if I somehow accidentally consume wheat, my toes do what is exactly like the Vulcan Live Long and Prosper greeting. My toes on their own, usually my big toe and the toe next to it, move away from each other and form a V shape. This hurts like hell when it happens and I had better not be standing. It has happened when standing and the first time I pretty much landed on my butt. Now if I am standing I immediately sit myself down or at least lift my foot off the ground and try to grab something. Luckily it only last about 15 to 30 seconds but believe me that is too long! Usually it only happens once or twice an evening, at times it can go on and off for a few hours at a time.
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Old 10-06-2013, 06:34 PM #3
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Default Re: Rare symptoms not commonly known

I don't know. Sometimes it's hard to say because I have a few different health issues, and one bleeds into the other. I get like hot flashes? I admit that I think I'm going thru peri-menopause, but I don't think that I would have hot flashes yet.

I also have jaw pain sometimes. I understand that TMJ and fibro go hand in hand. I haven't been diagnosed with TMJ, but it wouldn't be surprised if I had it.
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Old 10-06-2013, 10:25 PM #4
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Default Re: Rare symptoms not commonly known

I've heard another symptom of fibro is dry eyes and hair loss! I really they are wrong with the hair loss part, but I do need to use eye drops for my eyes. I've been so sick the last 2 years that I'd not be able to tell for sure what symptoms are which or what is causing them... it's so hard to find the source!
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Old 10-07-2013, 02:35 AM #5
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Default Re: Rare symptoms not commonly known

Toes, dry eyes, hot flashes, hair loss wow these are very interesting i must say. From all these how have you guys coped or dealt with them. I can just imagine getting symptoms not usually associated with the disorder can be very scary and sometimes leaving you feeling confused not knowing what is going on.

At times we do not even want to be going to doctors incase you find out that it is nothing but just something that could have been fixed with an over the counter medication such as maybe the case with the toes. But in instances where you are getting hot flashes then it could be a sign of stress and anxiety. Try to find out what could have caused a sudden pattern to hot flashes. The hair loss could also be due to stress or a lack of a certain vitamin or protein in your body and it can be very frustrating i know. Dry eyes though that one is a bit of a big worrying fact, and definitely needs the doctor.

Keep the responses coming guys, i really want to find out more.
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Old 10-07-2013, 08:57 AM #6
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Default Re: Rare symptoms not commonly known

You can buy artifical tears and other eye drops over the counter at the drug store. But it is aways a good idea to get it checked out to be sure whatever is causing the problem is not more serious. Don't assume it is just fibro, you can get other health related illnesses. Only your doctor can determine if the symptoms are serious or not.

Fibro can cause some really odd and freaky, and scary symptoms, but so can other more serious health problems. Don't ever get lolled into thinking "Ah! This is just my fibro acting up."
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Old 10-09-2013, 10:57 PM #7
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Default Re: Rare symptoms not commonly known

Personally, I think there are the standard symptoms: fatigue, sleeplessness, flair ups right before and during TOM, and the pain in certain areas and then there are individual symptoms that others may not have or a weird symptom.
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Old 10-10-2013, 08:37 PM #8
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Default Re: Rare symptoms not commonly known

I have dry eyes and hair loss. Good thing I have a lot of hair or I would be bald. I also lost my eye lashes. I had to stop using mascara because of the dryness and just no energy to get ready for work and one day I was feeling better and went to put on some mascara and all I had were these little stubs for eyelashes. After I was diagnosed I went on line and read one doctors opinion that people with fibro need to go on thyroid meds even if blood tests show the thyroid levels as "normal". I got put on .05 synthroid which is a low dose, but I have noticed less hair loss, my eyelashes are growing longer and my eyes are not dry - not more rubbing them or feeling like something is stuck on them. It seems to also helped my bowel movements - very little IBS now. Still feeling exhausted though and arm and leg pain still comes and goes. I don't get muscle cramps quite as often as I use to. Muscle cramps - especially in my ribs were my first symptom and I find them very painful.
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Old 10-11-2013, 06:27 AM #9
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Default Re: Rare symptoms not commonly known

Hair loss is a big thing for me ...I have lost actual clumps of hair. Now I seem to just lose handfuls at a time..I had hair down to my butt but had to cut it off .i couldn't keep my arms up to brush it all.. My finger nails grow funny too...they curl down and I have a lot of ridges in them
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Old 10-14-2013, 11:28 AM #10
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Default Re: Rare symptoms not commonly known

i have alot of strange symptoms, like dry eyes, hair loss, ice cold feet and butt all the time, I hate the wind blowing on my skin, hot or cold water,showers are taken quick with luke warm water. bruising, migraines,passing out, nausea, vertigo, b 12 deficiency, sleep disorders, urinary incontinence, neurophy in feet hands arms and legs. and my feet do this twitching bouncy kind of thing that I can't control special when I sleep. My boyfriend has complained about to me. I think it could be part of the restless leg syndrome, but it will do it when I'm awake too. I also just had surgery for plantar fascias and tarsel tunnel syndrome. I also have a wart that hasn't gone away in 5 years with repeated treatments. I also get painful lumps in my wrists that don't go away either. My fingernails also have deep ridges on them and never gave it a thought until the above post mention them. And itchy skin that drives me nuts. I also have a baseball lump in my left arm that is painful and it comes and goes. Red, thick skin that will itch , crack and burns on my big toe, second toe, but skips the third,fourth toe, but have on my little toe, all on one foot. I also suffer from a sweat gland disorder.
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Old 10-14-2013, 01:21 PM #11
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Default Re: Rare symptoms not commonly known

My hair falls out, I'm sensitive to light/sound, jaw pain, can no longer judge distance. At times I stutter (i never did before), memory problems, pain everywhere including head, jaw, eyes. Pins and needles, sensitivity to cold/heat, constantly recurring boils, blurred vision inability to co-ordinate words and letters when writing/typing (they jumble and i spend ages fixing them), chest pain.
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Old 10-14-2013, 09:42 PM #12
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Default Re: Rare symptoms not commonly known

Well aren't we a mess! Lol. No wonder it takes so long to figure out what is wrong....my list of symptoms alone is staggering let alone add in everyone else's...I'm amazed drs actually came up with what this is....
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Old 11-13-2013, 04:17 PM #13
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Default Re: Rare symptoms not commonly known

Weird things I have are:

Nodules in stomach still that flare up, sore to touch, hurts to move. They were the size of marbles and sent me to the ER. I was crying in pain because they pinch when I move and they are all over my abdomen. I thought they were swollen lymph nodes. Rheumy called them nodules. Now they range from marble to pea sized. I've had swollen lymph nodes before and they do pinch when you move. I did read somewhere they are a symptom and I got them bad. If I move around too much during the day - instant flare up.

I have ringing in my ears.

I have dry mouth.

I do lose hair, but have been for quite some time. I think it was also a lack of vitamins from my Celiac, but lately it seems more to me like it breaks and doesn't fall out because I have half pieces sticking up everywhere.

I have tingling in my extremities. I have had this for awhile too - with Celiac. Lots of symptoms cross over.

Dizziness and vertigo.

Anxiety to point of feeling like going to black out and blurry vision. Not the worrying kind. I worry about nothing. I just walk into Walmart or get in the car and instantly can't breathe, feel hot, nose starts draining, eyes go blurry, going to faint, get scared - maybe panic attacks.

I am sensitive to noise and lights, but only during migraines which started as optical migraines, went to full migraines like I was going to explode, but after gluten free I went off the migraine meds and don't get them anymore. I only get headaches, but frequently. I'll deal with those. Migraines are the worst.

I have gotten disoriented a couple times. Lately, twice I was driving and asked my husband where we were. I just didn't recognize anything.

I have always had freezing cold ice hands and feet.

In the summer my hands and feet swell like balloons. You can push your finger in it and the finger indent stays. Yuck. This summer wasn't so bad so maybe I'm finally starting to get through that.

I also get stinging/itchy skin.

Plus the typical - can't sleep, tired, severe muscle cramping (my whole left side went down and I was stuck for days and I wake up with leg cramps almost every morning in tears), brain fog (I say brain fog instead of fibro fog because this too started with my Celiac), muscle spasms/twitching, the obvious tenderness everywhere (I'm so tender I can't even cross my legs or arms or rest my hand on my face without it hurting), my inside knee is real bad and I can't put weight on it sometimes and I limp around, bowel instability, frequent urination, recurrent yeast infections, thirsty, chills, notice I grind my teeth sometimes (usually when I'm having anxiety/panic attack), I'm at bit OCD (If it scratch one finger, I have to scratch them all), oh I know there is more, but my fog is preventing me from remembering... Geez Louise LOL
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Old 11-14-2013, 12:09 AM #14
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Default Re: Rare symptoms not commonly known

I've been wondering about lots of things being part of having Fibro. I gained about 30 pounds in a couple months without any change in lifestyle (I always eat organically and clean.) I managed to lose most of the weight, but my body has dimples, varicose veins, and other unsightly problems now. I look like I don't have any muscle on me, and even though I don't look overweight (I'm not round) my shape comes from fat and not muscle. I look weak. It's strange, because I was also really active when I started to balloon.

I also had an unexplained abscess the size of a golf ball. I had to end up getting it surgically drained in the ER because it grew too much over the weekend when my doctor wasn't working. That was hell... I won't share more details.

Sometimes after sleeping I'll wake up and my feet feel like they just worked an 8 hour shift on my feet the whole time while in high heels. The bottom of my feet feel like they've been flattened, and my heels feel bruised. It's just such intense pressure!

I also get spurts of really bad acne (like 6 zits all on my chin and blackheads all over my nose and bumpy cheeks) and not always related to the time of the month. The rest of the time I generally have fairly clear skin.

My finger nails peel off in layers, even the ones that are firm and strong. Chunks of the top layer tend to start curling up and I have to file it off.

My eyesight goes in and out. Sometimes I get dizzy for a while, other times I see vivid colors, and other times I can't focus because things stay blurry.

...and then there us all the normal pain, ugh.
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Old 11-23-2013, 11:29 AM #15
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Default Re: Rare symptoms not commonly known

This thread is really interesting (but also sad...I'm sorry you all suffer so much!). I have hair loss (almost no eyebrows), peeling nails, cold hands and feet, ringing in my ears, dizziness, vertigo. I never considered they might be related to fibro.
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