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Lith 05-24-2011 01:29 PM

Is it Fibro? Recently Diagnosed, still very confused
[RIGHT]Hey everyone :) This is my first post here and I look forward to meeting people with similar health issues.

Here's my story:

I'm 21 years old and have been experiencing a long list of symptoms for at least the past three years. My symptoms became obvious right after a period of drug abuse and eating disorders in my teens, although I'm sure I could have had these problems to some degree my entire life.

I've been to so many doctors and have had so many tests done. My thyroid is normal, my vitimin levels are normal, my immune system function is normal, my liver and kidney function is normal, I had an ultrasound of my kidneys, liver etc. all normal, I don't have STDs/STIs, and all the major autoimmue disorders have been ruled out (such as lupus, celiacs, MS, etc.) Everytime I go to a new doctor its always the same thing. They run a whole bunch of tests and then tell me that they can't help me because I appear to be fine. The most recent doctor I saw said that is was most likely Fibro, which he said is a term doctors use when they can't find the source of the symptoms. The doctor suggested that I continued to do my own research in preparation for the internist I'm seeing in a month, but he didn't seem confident that the internist will find anything. I guess its good to finally have some direction, but I'm not sure if I'm satisfied with the diagnosis of Fibro.

If anyone can relate to my symptoms or give me some advice, it'd be hugely appreciated!

Here are my symptoms:
-Mouth sores, sometimes sores in *other* places (tested negative for herpes virus)
-Hair gets dry, brittle, and sheds excessively. I have about 1/4 of the hair I had three years ago.
-Cysts on my scalp and gums (not sure if this is related?)
-Chronic yeast infections
-physical shakiness and anxiety
-Fatigue (wake up tired, can barely get through a normal day of school/work)
-intolerance to cold
-Brain fog/difficulty focusing/horrible memory. Sense of detachment from self.
-Difficulty working out due to fatigue (I get dizzy, lightheaded, skin cold and clammy). When its really bad I can barely walk for more then 10-15 min at a time due to pain and fatigue.
-Muscle pain and stiffness all over, especially after working out or after not moving for a period of time. Pain often seems to be more present in upper shoulder, lower back, behind the knees, inner thighs, torso. Pain subsides with stretching.
-IBS and occasional cramping.
-reoccurring multiple cysts on my lips, gums and scalp. They start out as really sore patches on my skin then develop into a cyst within two weeks. Right now I have like 3 cysts on my scalp and one on my gums. G

I think that's everything. Anyway, any advice or suggestions as to what I should ask the internist to look for would be hugely apprecaited.

Thanks for reading :)

monalisa24 05-24-2011 02:33 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
Hi and welcome sorry to hear your having all this at such a young age..not sure people here can see my bio...but Ive been sick all my life, DX with fibro in 48 BTW.

i don't get sores and my hair really doesn't fall out..i only wash my hair with shampoo maybe 3 x week, i do lite wash the other days with a good conditioner and that helps with it not shedding.

i had severe IBS,,D...but since Ive been eating a half a Activia yogurt every morning and then after a BM i take 3 fiber pills Ive been doing pretty good. ALSO since Ive been eating the Activia i haven't had a yeast infection,,remb always air dry down there after a shower,,i use a cool hair dryer ,sorry graphic ,,but hey its nice to know what

..hope this helps...some...

hugs monalisa

monalisa24 05-24-2011 02:42 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
Sense of detachment from self. funny you mention this ..ever since i was way young, this is how i felt..not everyday but think its gonna be a good day if i didn't feel that way. i didn't start to get the severe pain till 04..

i take a decongestant which helps with dizziness..muscle pain heat, stretching, massage,Ibuprofen,...sleep i take melatonin which now i can get about 8hrs before it was only about 4 and only 2 at a time....

memory-loss.. brain forgetfulness..Alot of notes to self ...

all my test are all negative also...

brooklyngirl 05-24-2011 06:19 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
Your symptoms are similar to some of mine (mouth sores, hair loss, fatigue, dizziness) and I was misdiagnosed with fibromyalgia. I fired that doc and went to a new rheumatologist who ordered a skin and lip biopsy which came back positive for SLE and Sjogren's Syndrome even though my blood tests were (and still are) negative. My new doc doesn't believe that fibromyalgia is a good diagnosis to give without testing everything possible because many people like myself are misdiagnosed as the doc did not feel like doing anything more than blood tests and the answer was in a biopsy. Do you ever get rashes or sun sensitivity? I have both and they were able to test the skin with the rash on it. I also get hot, swollen fingers and toes and the joints hurt and are stiff (especially stiff in the mornings) I also have dryness (eyes, mouth, skin...) from Sjogren's. But I doubted my fibromyalgia diagnosis mainly because I have never had muscle pain and no tender points (the stupid first doc just didn't get a positive blood test so she tried to brush me off with a diagnosis and an anti-depressant which I did not want and it caused a horrible reaction because I am not suppose to take those I guess). If you are uncomfortable/uncertain about the diagnosis I would continue seeking answers until you are comfortable with the doc and diagnosis. I also have had a continuous headache for about 20 years and they sometimes become migraines. I rarely take any meds unless it is absolutely necessary because a few years ago I took way too much all the time just trying to dull the pain which in fact was making it worse ( I felt better after stopping all meds for a few weeks but the first week was horrible.) Good luck getting answers, its a long and difficult process.

Lith 05-24-2011 08:22 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
@Monalisa thanks for the supporting words :) It sounds like you have a lot on your plate! I take probiotics daily which seem to alleviate some of my yeast symptoms. I also try to eat yogurt as often as I can for the same reason. I try to eat high-fiber cereal everyday, too. Eliminating lactose, gluten, and soy seems to have helped a lot with the IBS, but I still ha?ve problems. For the depersonalization and memory issues, have you tried seeing a therapist? I'm making an appointment tomorrow, hopefully she'll be able to help me improve some of the mental aspects of this illness.

@BrooklynGirl Thank you so much for your response. I'm sorry you were misdiagnosed. I was originally misdiagnosed with a wheat sensitivity and spent almost a year not eating gluten, all the time wondering why nothing was improving. I know that through my own research, many diseases are difficult to diagnose and (like you said) require more to be done, like a biopsy. The problem my doctor had was that all my blood tests came back normal and so he had no direction, no idea where to even start. He said that if it was autoimmune "sign posts" (or indicators) would have shown up in my blood work, but they didn't. Everything always appears fine, even though I feel awful. I also try and avoid taking meds, mainly because I don't even know what's wrong with me to begin with, and also because I'd rather treat the pain naturally (with supplements, yoga, stretching, etc) instead of taking painkillers all the time (they rot your stomach!!)

I don't seem to have any rashes, except these tiny bubble things that show up randomly (only one at a time) on my skin then dissapear in about a week. I'm not sure if they mean anything.

My search for answers continues :)

caribear 05-25-2011 11:10 AM

Re: Is it Fibro? Recently Diagnosed, still very confused
Those tiny bubble things that show up on your skin, are they like little blisters? I get them, mine happens to be dishydrosis, a form of eczema. They are tiny fluid-filled blisters that show up on my hands and feet, they seem to be worse in the spring and summer, and sometimes they itch. My doc prescribed hydrocortisone cream for it, and it helps a lot. Don't know if that's what you have, but it's an idea.

I'm sorry you're having such a hard time. I hope you find some answers soon.

monalisa24 05-25-2011 01:51 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
I get reddish rough pimple like ones on my forehead an cheeks close to my nose area ,,but go away the next morning. then i wont get them at all for weeks an sometimes months..but there back again...Ive been tested for lupus an all that gos along with lupus, i hav a Post ANA but Neg for lupus..but i wonder...

yrs ago a dermatologist said i had Rosacia ..spelling?

so who knows but i hate them!

i also get those Caribear..but not alot....from the heat..only once in awhile tho..

Lith 05-26-2011 10:18 PM

Re: Is it Fibro? Recently Diagnosed, still very confused
Thanks for all the responses all :)

A question, does anyone else get cysts? Ever since all my symptoms started showing up ive been getting cysts on my gums/lips and scalp. They start off as very painful sensitive areas on my skin then within about 2 weeks develop into cysts. Right now I have one on my gums and like 3 on my scalp. Does anyone else get this??

monalisa24 05-27-2011 11:50 AM

Re: Is it Fibro? Recently Diagnosed, still very confused
lith... hey look up..Myalgic Encephalomyelitis...(M.E)...why? well ive been looking into this..its so close to what we have....let me know what you think...

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