Many Symptoms. Possible Fibro????

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nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 12/10/2009 8:03 AM (GMT -7)   
For the last year i've been experiancing some bothersome symptoms. Started with heavy tiredness, i wake up ok, but give it 5 hours or so and would need to take a nap. My upper arms and legs started getting muscle spasms really bad, nothing helped, thought i would have to go to the er. All my bloodwork was negative. Not long after I was diagnosed with a very fast heart rate and medicated for such. I started falling and unable to keep my balance, as of now i fall a few times a week. The pain in my arms and legs is so bad sometimes i cant sleep. Sometimes i get numbness and tingling in my hands and feet and pins and needles. I have to pee all the time, right after i go, i feel like i havent even gone--workup for infection was negative. I've always had migraine headaches, but as of this year they have gotten worse and recently stared taking topomax . This seems to help somewhat with the feeling of "standing in an ice bucket" burning. I have developed a chronic ringing in my ears
24/7. Get flashes of light in my eyes. All the time heartburn, does not matter what i eat. My thought process is off, unfortunatly, im unsure if this is a symptom or a cause. I am not a depressed person, maybe slight anxiety over this, but lets face it, who wouldnt be. I've been worked up neurologically by 2 specialist. In the past had endometriosis and ovarian cyst removed x2. My pain/ symptoms seem to peak about 2-3 days before getting my period........I have an appt with a rhumatologist on the 7th of jan. I think the dr's think i am crazy!! Please help.

PS, im usually on the ms forum, that was what they originally thought this was............neg. test tho
 
I didn't edit the body of your post.  I just added a title in the subject line so you will get more responses.

Post Edited By Moderator (Sherrine) : 12/10/2009 12:08:44 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 12/10/2009 12:04 PM (GMT -7)   
Hi, Jenn!  I'm so sorry you are going through all of this.  A lot of what you described could be fibromyalgia.  The lights flashing in your eyes could be a migraine.  I get that but have no headache!  It's called a silent migraine.  I used to have the muscle spasms and cramping but I started taking more calcium and they went away.  It sure surprised me so I googled it and sure enough low calcium can cause muscle cramping.
 
Be sure to read the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia, including a list of symptoms.  You just might see yourself there.  There are links to pain descriptions and a pain journal.  You should print that out and start keeping a daily journal as to how you are feeling and what is going on.  This will help your doctor diagnose you better.  Reading that thread will inform you and you will be better able to discuss this with the doctor, too.
 
You are not crazy!  What you are feeling is very real and it can be frightening until you know what you are dealing with.  Try to stay calm and keep anxiety at bay.  You will do much better that way.  Don't hesitate to ask questions because we are here to help you.  So, please start reading and if you have any questions, please ask!
 
I'm glad you popped over here and joined in.  I'm hoping to hear more from  you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 12/10/2009 4:42 PM (GMT -7)   
I'm sorry you are going through all these pains and symptoms. I hope you can figure out what is troubling you soon. There is nothing worse than uncertainty. Please take care and let us know how your appointment goes.
fibromyalgia and possible trigeminal neuralgia
50 mgs amitriptyline daily, T3s for facial pain (really not appropriate med) and now tramacet


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 12/10/2009 5:48 PM (GMT -7)   
Thanks, i hope so too, the one neurologist looked at me like i completely made everything up, the other said my symptoms sound like fibromyalgia, i looked at the page of symptoms, and fit a great deal of them. I've had most all bloodowork that could cause these smptoms, mri's evoked potentials, emg studies. The only thing that was slightly off was vit d level, now i just take an over the counter supplement and lots of milk :). The drs ask me which side is worse for the pain and tingling, but no side is really. The last 2 days or so both of my lower legs feel as tho i have run a marothon. the muscles burn, cramp, feels like menstral cramping in my legs, the whole legs.

Thanks for the title Sherrine, as soon as i hit post i saw i had not put one :)
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/10/2009 10:37 PM (GMT -7)   
Have you been evaluated for Lyme Disease? I don't mean just tested, I mean evaluated, since the test in not very accurate at all. I had most of your symptoms plus some really fun extra ones and was eventually diagnosed and treated for Lyme. The antibiotics got rid of many of my symptoms but not all.

Check out the Lyme Disease forum for more information. You have nothing to lose since Lyme is treatable and fibro isn't.

Your bladder problems sound a lot like Interstitial Cystitis. IC is found in women with fibro, Lyme, and endometriosis.

Your profile says you are from New York so you are in an area with loads of Lyme disease. The only good news is that there are some great Lyme specialists in your area. Your neuro symptoms sound so much like mine. I even had a tentative diagnosis of MS. I had MRIs, EMGs, EKGs, EEGs, spinal taps, gallons of blood work, plus numerous other tests. Everything was fine. I could no longer use my left arm but a neurologist told me that there was nothing wrong. He did his routine office blood work to shut me up. Turns out I tested positive for Lyme ( I am one of the rare lucky ones that test positive.) I started treatment and some neuro symtoms went away withing weeks and most eventually disappeared during treatment.

Good luck.

nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 12/11/2009 4:26 AM (GMT -7)   
i had a few blood tests, but whats the work up???
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Libby08
Regular Member


Date Joined Oct 2009
Total Posts : 434
   Posted 12/11/2009 10:53 AM (GMT -7)   
NurseJenn.  I can so relate to so many of the symptoms you are having.  I was diagnosed with Fibromyalgia many years back.  Over the years have been to many many doctors on many different occasions and felt like most of them thought I was crazy.  I think the scariest thing is the not knowing.......  I also seem to get worse before my period.  I have some new things going on now that I am seeing my doc for after the beginning of the year.  I hope you get some answers soon!

Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 12/11/2009 4:40 PM (GMT -7)   
Lyme tests are not very accurate so a negative blood test should not rule out the disease. A good doc will look at your likelihood of exposure, your medical history, and, most importantly, your symptoms. Unfortunately too many docs rely solely on the blood tests and it is really tough to get most docs to treat for probable Lyme without a positive test.

There is a movie about Lyme called "Under Our Skin" that explains a lot about the politics of Lyme, testing, symptoms, and treatment. If you get a chance to see it, I highly recommend it. You can buy a copy but it's not out for rental yet. Many Lyme support groups are showing it to increase awareness of Lyme Disease.

nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 12/11/2009 5:03 PM (GMT -7)   
The neurologist said no to lyme, never been bitten by a tic. I really wanted--not wanted, but thought it would be benificial-- a spinal tap......neuro said no.....
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Littleneck
Veteran Member


Date Joined Mar 2009
Total Posts : 599
   Posted 12/11/2009 6:49 PM (GMT -7)   
Nursejenn, I am guessing the rheumatologist is not going to think you're crazy! A lot of your symptoms sound like my own fibro symptoms. The heavy fatigue, muscle spams in upper arms and legs, occasional falling and balance trouble, pain in your limbs that prevent sleep, ringing in the ears, pins and needles and numbness in hands and feet (this happens when I'm driving, too, which is so disturbing), urination trouble, funny migraines - I have all those. I've always had migraines but now with fibro I get really weird ones: flashing lights and no pain, severe vertigo and no pain, and then when I do get my "regular" ones with pain they are PAINFUL. The flashing lights can go with silent/ ocular migraines, but may also be a symptom of a detached retina. You should also see an eye doctor if you haven't had your vision checked in awhile. What kind of blood tests did you have? There isn't an actual test for fibro itself but different blood "markers" can indicate elevated pain and other things that may indicate fibro, whether your body is having an autoimmune response or not, etc.

I wanted to add something too, just to think about. I have a sister who also has fibro like me, and she didn't even know she had been bitten by a deer tick because she hadn't been doing "outside" things; literally ALL she did was walk from her front door over the grass to her car for weeks. The ticks can be literally as small as the period at the end of this sentence. But my sister also had a tentative diagnosis of MS. Some of the Lyme symptoms are the same as fibro, and all she noticed for a long time was that her symptoms got worse, and then she started getting low-grade fevers (the opposite of her "normal" temp.) Even if you don't end up having Lyme, keep pressing the docs for answers and help until you are satisfied. They get paid to help us. I have a terrible "thing" about know-it-all docs who don't listen!

My Mom was a nurse and she always said nurses make the worst patients! I grew up to work in health care (professional support) and I have to say she was right! :) I hope you get some relief soon, and let us know how you fare. Everyone is really nice here.

Starynight
Regular Member


Date Joined May 2009
Total Posts : 51
   Posted 12/12/2009 9:00 PM (GMT -7)   
Welcome! I am sorry you are hurting! But I am curious what came first the pain and tingling or the Topamax?
Pain is temporary.  It might last a minute, or an hour, or a day, or a year but eventually it subsides and something else will take its place.  If I quit, however, it lasts forever.
 
Fibromyalgia & Endometriosis
 
Trazasdone, Yaz, tylenol, aleve


nursejenn1012
Regular Member


Date Joined May 2009
Total Posts : 104
   Posted 12/13/2009 4:30 AM (GMT -7)   
the pain and tingling, i know, i thought that too.....LOL, i dont doubt that the topamax makes the tingling worse tho
God will Give me nothing i cannot handle--i just wish he didn't trust me so much


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17095
   Posted 12/13/2009 5:33 AM (GMT -7)   

The best lab for testing for Lyme is called Igenex and it's in Palo Alto, California.  You can have your blood sample sent there, I believe.  They are like "specialists" in Lyme.  The Lyme forum could fill you in better about that, if you are concerned.  We did have a former fibro member that found out she had Lyme and is now under treatment and doing well.

Sherrine


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7

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