Many Symptoms. Possible Fibro????

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

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 :)

i had a few blood tests, but whats the work up???

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.

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.

the pain and tingling, i know, i thought that too.....LOL, i dont doubt that the topamax makes the tingling worse tho