Diagnosed years ago - anyone with same symptoms?
 

Hi. I was diagnosed in 2006 with fibro. The Mayo Clinic diagnosed me after running many other tests that came back normal, and I went through a fibro management class. My question is if the new symptoms I'm having are related to fibro or if I have another disorder. Also, wondering if anyone else with firbo had symptoms in childhood like I did.

Listing the symptoms I don't know to be related to fibro (skipping fatigure, sensitive to touch, etc.)

My recent symptoms (in no particular order):
Weakening of hip and neck muscles (still progressing)
Constant, severe headache
Constant, severe neckache (seems related to facet joints)
Constant pain in sacrum and lower back (not as severe as above)
Visual disturbance when looking at blue lights - they are blurry and misshapen (a circle will look like a squiggly line), and looking at them increases my headaches and nausea. Only blue lights.
Tooth resorption
"Brain shocks" - feels like a little electrical storm in the back of my head. Comes and goes.
Reynaud's and incredibly weak finger and toenails.
Overly sensitive finger and toe tips
Trouble with fine motor skills using feet and toes (like taking off a sock with the other foot, which I am no longer able to do)
Night sweats (I soak through my sheets almost every night)

Symptoms that are worse:
Light sensitivity in eyes (I need to wear sunglasses when it's cloudy)
Pelvic Floor Dysfunction (leads to occasional stool leakage)
Dysphagia
I get more sick with temperature changes and extremes.
When I get really hot I have the same symptoms as if I were very cold (goosebumps, shivering, feeling cold)

Symptoms in childhood:
Diarrhea
Constipation
Frequent infections in intestines, including Giardhia and C-Diff (that really confused my doctors, as they could never figure out where I picked it up)

Any responses would be greatly appreciated as I try to self-diagnose or at least figure out which doctor to see next (recent rheumatologist completely blew me off). Thanks!

Kate

Have you tried Naturopathic Physicians (N.D.)?
Osteopaths (DO)?

What would be the main, worst or most bothersome symptoms?

Are you having any sort of Phys therapy to see if some of the symptoms are resolvable?

I am in PT weekly and have been for 9 months. Sometimes we see an improvement, sometimes it makes me worse. I have not hurt of N.D. or DO doctors - I'll be checking my insurance coverage for those. I have the worst insurance...

The worst symptoms would be the pain. It gets so hard to get my work done and enjoy my life outside of work when my neck, head, and back hurt so much.

I don't know about the rest of your symptoms, but I just wanted to say that cdiff can be carried as a normal flora in the human gut, especially if family members are colonized. The only time it becomes a problem is when you take antibiotics which kill off the normal intestinal flora that would generally keep the cdiff in check and they are allowed to grow out of control as they are highly resistant to antibiotics. Once they are growing out of control, they still have to be the type of cdiff that secretes the toxin that causes you to be sick, so you can even carry cdiff that is resistant to antibiotics but isn't the cause of your illness. It's similar to E. coli - we normally carry a large amount of E. coli in out gut and it helps us to digest our food, but if you get the wrong kind of E. coli (specifically the O157:H7 strain) it releases a toxin and you get sick.

Also, have you had an MRI of your cervical spine? I had a lot of the symptoms that you have and my doctor gave me a fibro dx but I am finding now that I have spinal cord compression and it causes a lot of the same symptoms.

Is it Fibro,CFS or other?
 

Many of the symptoms you listed happen with many FM and CFS sufferers. They can be disturbing and bizarre, but little help seems available. The G.I. Stuff you had as a kid may not be related as I know CFS has commonly G.I. Disturbances.
Fingers,toes not sure about but I have heard some pretty weird stuff over 25 years. Not familiar with Reynaud's. Night sweats common in peri-menopause, some women get very young(even 40!). Neck problems are classic case CFS. Years ago I researched Post Polio Syndrome where prominent neck issues occurred and many researchers believed is closely linked to CFS.
You sound very organized and have the symptoms recorded well! I suppose brain shocks could warrant a check for MS or Lupus, but again strange symptoms that reappear after a few months have been known withFM/CFS and always throws everyone off. Good Luck.

Hi Kate, Have you ever been tested for lupus or MS? I have, because I have a lot of the same symptoms you have. My tests came back negative. But, fibro can disguise a lot of different illnesses. When I was a child, I remember being called lazy. I always felt so tired. I hated running in gym because the muscles in my legs hurt. "growing pains". That's what I heard. Headaches and I would vomit when I got upset. (like before a test). Lots of brain fog and I couldn't pay attention. Found out later I have dyslexia, but that didn't account for the tiredness and pains. I had horrible horrible menstrual cramps every month. I would be bent over doubled up and vomiting, it hurt so bad. Along with headaches. Not as bad after I had my children. Of course, I was a hypercondriac. NOT. I was raised in the 50's and many things were not dicovered in those days.
Find a Dr. that will listen to you. I have a woman Dr. and she will spend as much time as I need with her and listen to every word I say. She has done wonders for me along with my own searching on line for whatever I can find.
One thing I ran across was how Magnesium help leg pains. I wasn't taking enough. I went to 2000 mg. and what a difference. My legs feel so much better. Of course, I talked to my Dr. about it first. You never know what will interfere with other meds you are taking. Good luck to you!!! You are in my prayers. Blossom25 (I was also diagnosed at the Mayo Clinic in Scottsdale, AZ.)