Fibromyalgia since mid 90s now something new or is it still the FM?

I am also posting in the Lyme forum and MS forum. I do have flares that come and go but this one has been a 2 month long one. Is it FM? Am I infected with lyme????? Do others get these symptoms??



Years of pain with a"half hearted" dx of Fibromyalgia, I now suspect it could be Lyme Here are my symptoms which have been consistent for at least a month but intermittent for years (come and go, I feel good for a time then I have new or strange pains/symptoms). I have dealt with it thinking it was all contributed to the FMS dx but I am second guessing that.....

Blurry vision
Brain fog
Burning sensation under skin
Itchy skin not due to bites which sometimes is worse at night or laying in bed
Rib soreness
Sore skin as with a sunburn various places and intermittent
Sore skin in areas such as lymph node tenderness in neck, throat, collar bones, arm pits, breasts, chest
Chilling sensations in legs
Left arm from elbow to wrist flashing sensation of pins and needles and feeling like the circulation is being cut off for a second then allowed to flow again (uncomfortable but not really painful)
Difficulty reading (I have to read things several times before it “clicks”)
Have trouble hearing and have to ask people “what?” sometimes I will just try to process it in my head before I asked them to repeat their selves…I hear it but it doesn’t always compute???
Sharp ear pain which comes and goes ringing in ears which also is here and there
Floaters and flashes of light in eyes mostly left side (sometimes this is worse when I move my head quickly) and have experienced light flash when there is a loud noise
Occasionally when walking one foot will “catch” of the floor and I will stumble but not fall (if this happens once then that day I will do it multiple times)
I tend to topple a little to the left side while standing or as I begin to walk until I get going
Fatigue and exhaustion not relieved by sleep
Heavy feeling arms and legs like they are made of concrete
Shoulder pain continually on left side and to the bottom of ribs to my spine
Feeling like my spine is too short for my body and pulling sensations in spine when I turn my head or bend
Same feeling in my eyes-like the optic nerve is too short and have eye pain when I turn my eyes
Rice crispies popping and cracking, gurgling feeling in neck when I turn head
Fever sometimes daily 99*
Joint pain almost continually in fingers and toes
Inside of knees joints continually hurt
Finger joints on left hand index finger swollen and painful now moving to the right hand, very end of my fingers hurt and first joint pain is constant
Left knee upon waking with feel hot from the inside out and there is some fluid on knee, odd feeling in that leg from knee down
Intermittent ankle pain
Bottoms of feet feel like fluid retention and painful when walking especially upon waking or from sitting
Tingly feeling in lips, fingers and toes
Numbness in left shoulder/back area
Light headed especially upon standing
Bladder spasms and sometimes painful urination which causes me to wince
A couple of times felt like the room flip flopped upside down
Depression (on and off for years)
Anxious feeling
Insomnia
Short term memory problems (sometimes I can’t recall something I did yesterday)
Sinus issues, stuffiness, constant clearing throat, excess mucus
Stabbing pains or shooting pains and sensations (may be down arm or legs)
Restless Leg especially if I take any medication with a sedative affect such as benedryl
Restless Leg sensations in chest and arms
Waking up to clinched arms and teeth
Muscles feel like they lock when I stretch
Tearful, weepy feeling
Twitching eyes/lids
Unable to find words I am looking for
Brain fog
Cold hands and feet sometimes even when the weather is warm
Unusual pain in various places which may last a week or 2 then be completely gone
Gurgling in stomach, bloating feeling, bowel urgency but unproductive
Ovarian pain (cysts)
Break through bleeding between periods (which seem to be regular now but I have had frequent periods coming 2 weeks apart)
Frequently find myself sitting or laying in uncomfortable positions and not realizing it until it has become very painful
Low back pain
Facial swelling and fluid retention in lips and eyelids (not sure if it is noticeable to others) also in hands and feet
Feeling like my speech is slurring and hearing this but not noticeable to others
Skin sensitivity to touch
Forget what I am about to say and inability to recall words or events
Occasional fever blisters and gum sores
Possible light sensitivity in eyes
Ear sensitivity to loud or sudden noise
Burning pain in various spots sometimes relieved by moving
Heart fluttering especially when laying on my left side
Left side of body feeling like it is “weaker”
Pain that starts on one side of body, lasting a week or so then slowly subsiding migrating to opposite side of body (mirror image pain)
Easy bruising or mystery bruising
Joint pain that sometimes has itching or burning sensation
I feel like my brain is overloaded with stimuli such as noises, people talking to me, crowds, trying to make decisions, etc and it puts me into a panic mode making me anxious, irritated and ready to snap




I have to add that 1 year ago I had been bitten by something in the calf of my leg, which made me sick with flu like symptoms. I did have a huge red circular rash which itched at first then burned and 8 hours later swelled, was hot and painful. It extended over the entire calf area and went to the doctor next day. Said it looked like a black widow bite. A round of antibiotics cured it I thought and within a week my symptoms were gone except for the bruising that the swelling caused. The pain was so intense at the bite area that I literally had trouble walking.

A month ago after being bitten by 30 or 40 mosquitoes when I was in CT visiting family I came home and one week later spent the night in the ER after I become acutely ill with 103* fever, muscle pain and cramps, numbness in lips, face and extremities, severe and sudden headache, chills, sweats, hands and arms along with toes and lips drawing like I was a stroke victim.

Now like I said I have had some of those symptoms on and off for years being dx'd with Fibromyalgia. At times, I never knew whether I was getting the flu or it was a FM flare. I have to add that I have worked the past 14 years as a dog grooming and come into contact on a daily basis with dogs that are loaded with fleas and ticks and I have found them on me many times....

yes recently had loads of bloodwork done. MRIs, scheduled appts with a rheumy and neurologist. i have "played" this game before but not to this extent-have had a constant "flare" for 2 months with the tingling, numbness being new. The lyme test is still out. MRI- "essentially normal", ANA neg, RA neg, SED normal...etc etc blah blah. Over the last 15 years I have been seen and poked and prodded by many a doctor......ugh, some days I just can't take it!!!!

Alot of your symptoms could be caused by fibro, but then there are so many other things that can mimic fibro. Did you check out fibro 101 there are lists of symptoms of other possible diseases that need to be ruled out. One thing that does concern me is you saying you got sick after being bitten by mosquito's just wondering if you have been tested for West Niles Disease which is carried by mosquito's. I that could explain why you got so sick when you got home. I will be praying for you to get answers soon.
Gentle Hugs
Shirley

Hi there.  As you know, fibro is a difficult disease to diagnosis as well as treat.  If you have had everything but Lyme ruled out of course it's good to have that test done.  There was no such test back when I was diagnosed with fibro and because I have been exposed to so many ticks in the past I plan to have that test done also...just to make sure.  I can say that I have had many of the symptoms on your list.  Some are from anxiety, some from medications and some from Fibro.  In your description you say 'feels like fluid retention...feels like my spine is too short etc.'  That certainly sounds like what happens with this disorder.  I 'feel' like my feet are the size of catcher's mits but they aren't.  I often get the sensation that there is water running down my legs...No.  I almost always 'feel' like my arm muscle are swollen but they are not.   I do not think fever is a sign of fibro but feeling like you have the flu is.  If you do have fibro, the overactive nerve endings in the skin and muscles will make you aware of sensations (and pain) that would otherwise go unnoticable.  Other disorders often go hand in hand with this disease, such as restless legs, TMJ and Raynaud's Syndrome to name just a few.  I might add that I also had horrific, painful periods as a teen and young adult and they started lasting 10 days to two weeks long with little break in between before starting alll over again.  I lost so much blood I became very anemic.  I finally had a hysterectomy at 24 years old because even with drugs the cycle could not be controlled.  Many years later I have learned that this too can be a sign of fibro.  It is a very insidious disease with so many faces...pain moves around and just when one symptoms goes away another one crops up.  I hope you get the answers you need so you can go on with your life.

Donna

ShelETN reading your post, I thought that you were possibly my twin. Sadly, that list is long and very similar to what I have gone through. I had many things going on at the same time. My DrK said that I am a pain in the butt. LOL

He has been so patient and kind to try and work out what is wrong with me. A good many of your symptoms sound like Thyroid problems. (I always came back as NORMAL, but on the Low side of Normal for the thyroid. I asked DrK if possibly my reading was not 'normal' for me since the scale was an average........we had been checking for over a year. I was falling, not being able to walk in a straight line, hands and feet freezing, teeth clenching and difficulty swallowing when stressed.) He put me on a low dose of Synthroid and it was like a miracle! Things got better. Jump forward a few years and things started going wonky again and DrK suggested that I also needed to add another thyroid medication for my functions. This has helped me, but we are still playing with it.

With Anemia being all the time, have you looked into the Pernicious Anemia? other than B12 shots? There are several diseases that can cause this. One is Celiac disease ..............you can have this without having the gut reactions. You can have what is known as 'silent celiac'. the only treatment for this is diet control of avoiding gluten (wheat, barley and rye.)
You might want to keep a food journal and see if there is any correlation to a food item with the onset of worsening symptoms. (this does not have to be gluten..........you could have a body reaction to another grain, milk or even something common that you can no longer tolerate.) (the mystery bruising and low B12 made me ? it.)

I hope you get some answers from your blood work.

Where in Alabama were you seeking help? I am in the Birmingham area.

cathyA, no i am not offended at all. in fact over the years that i have had FM i have taken antidepressants, zoloft, prozac, effexor, cymbalta, i am sure i am leaving out a few....i wish i could erase the last 14 years of symptoms and start fresh at one year ago. i think i overwhelm myself and my doctors with the time frame and overlapping symptoms. its so confusing and frustrating trying to explain my situation to doctor after doctor. i also had a psuedo tumor cerebri about 8 years ago slipped disk kidney stone, test after test, xray after xray....too much medical history that no one can or will connect the dots. i also took the depo provera birth control shot which possibly started or made worse some of my problems. i am trying to keep on track with the lyme disease thing and hope the tests come back conclusive. i do get worse FM flares when it is "that time of month"...the FM makes finding any other conditions nearly impossible. my doc told me any times "dont blame FM for everything", "there could be other things going on..."

no i have never been out of the country, ever....i have looked at mosquito born illnesses all over the internet. i rarely snore so i dont think it is sleep apnea. my periods last year were coming 2 weeks apart ut since have straightened out (pretty much 21 day cycle now). my gyno told me a year ago that if i was going to have a baby then it needed to be soon because "my eggs were getting old"......it sounds insensitive but i understood what he meant. there was nothing wrong with me gynocologically (sp?) speaking except that i was aging.

i am not angry at my symptoms and understand what you mean by comforting them. i have owned up to them and it does help with the coping. i guess i just need a real true diagnosis and a reason why i am in such a "flare". i have had to step down my manager position at work because i could no longer handle the pressure that came with it. even simple math sometimes stumps me now and its just too much to deal with along with the physical pain.

MrsP, i was dx'd with hyperthryoid years ago went on meds and it has "fixed" that. i am in the low normal range now. most healthcare professionals do not look "outside the box". what may be normal for most may not be normal for us.

b12 anemia is a possibility and i think do will pursue that especially if my levels dont improve with the injections. lyme, i have read, can also cause b12 absorption problems.

i can do the research for the symptoms i have but other than FM, lyme, MS, and lupus nothing else that i have found fits my symptoms list as a whole. unless i have 2 or more things going on. its no wonder docs cant come up with anything....too much to digest.