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Newbie here - Is it Fibro??
11 Replies
tesse - June 4

Hello everyone, I'm so happy I found this forum!

Let me begin by saying that I'm 21/f and have been experiencing symptoms for 3 years and in three years no doctors have been of any help. The last doctor I saw described me as a "medical anomaly". I'm desperate for some direction.

My doctor suspects fibromayalgia but I am currently on the wait-list to see a specialist in about a month.

I've had every blood test imaginable and an ultra sound of my abdomen and pelvis. The only thing that all this testing showed was high blood pressure, a small amount of protein in my urine, and two gallstones.

I was hoping that somebody could shed light on my symptoms and maybe relate to them in some way.

Here are my symptoms:

-Hair shedding (my hair gets dry and brittle, hair white and thin at the follicle and falls out in clumps)
-Mouth lesions on tongue and gums (some raised bumps that often develop into sores, also larger more shallow patches of raw skin)
-Cysts (or at least what looks like cysts) in my mouth and on my scalp
-Chronic vaginal yeast infection that never completely goes away
-Pressure headaches
-IBS, especially after trigger foods such as lactose, soy, cheese, caffiene, alcohol
-Fatigue and general feeling of exhaustion
-"Brain fog" including difficulty focusing, carrying on conversations, reading etc., (i hate this!!)
-Muscle pain and stiffness, especially after excersize (During a "flare" I cannot walk for more then 30 min without the pain becoming unbearable).
-Dizziness which sometimes leads to almost fainting or actually fainting, especially after working out and standing. (I practically passed out in front of a whole bunch of people yesterday, embarrassing!)

I guess its worth to note that the severity of these symptoms appear and subside together, so I know they are all related.

I'm really at loss with all of this so advice or suggestions would be hugely appreciated. I'm especially concerned with my concentration levels so any advice in relation to that would be awesome, too.

Thanks everyone :)


January - June 4

You could have any number of things going on. Just one idea. Celiac disease can flare up at any time, according to new research, and there has been a 400% jump in diagnosed cases. You have some of the symptoms, so ASK for a celiac antibody blood test or a stool test. (Most drs. don't run them routinely.) Also, you could have a systemic yeast infection going on. But it's best that you go through a battery of tests and rule out everything you can. You could be malnourished if you have some kind of absorption problem with your gut. That can lead to all kinds of problems, including the ones you mentioned. But, you really need to be under a doctor's care. Hang in there - the first thing is proper diagnosis and that takes a while. You can get better once you pinpoint what's wrong and treat it correctly. Good luck with it.


tesse - June 4

Thank you so much January.

I've been tested for celiac antibodies (came back normal) and I do not have any deficiencies so I'm not malnourished. I mentioned a systemic yeast infection to a few doctors and they said that it was a myth (after some research, I tend to agree).

I know I need a solid diagnosis, but the process is taking so long and nothing is improving and it's so frustrating. All I can do is try and be patient I guess.


kvc33 - June 4

From your symptoms I would say that you drastically need to change your diet. No sugar, caffeine, alcohol, dairy or gluten. Western medical doctors generally do not believe in systemic yeast infections but I'm a firm believer that it does exist. Yeast feeds on sugar so every time you eat it or foods that are high in carbs such as fruit juice or potatoes you are feeding it. If you are sexually active and not using condoms you could be passing the yeast back and forth to your partner. Males generally have no symptoms but will pass back a yeast infection to a woman who previously had one. You also need to buy new underwear as it lives on cloth even after they have been washed. You can use bleach on them after that and then double rinse so that the residue of bleach doesn't irritate your skin. Are you certain that it is a yeast infection? Have you been treated by a doctor for it or have you tried to do it on your own? There are other infections such as a fungal vaginal infection. High blood pressure is unusual in someone with FMS, it's usually low. Are you overweight? You can still be allergic to gluten even though you don't have celiac disease.


tesse - June 4

kvc33 Thanks for your response. I have tried the gluten-free, yeast-free diet, sugar-free diet for almost a year but to no avail. I used to occasionally take anti-fungal medication which helped the yeast infection but it always comes back. I'm taking pro-biotics, grape-seed extract, and try to avoid sugar, though have been giving up recently because no diet seems to really work.

I was tested for and do not have any food or obvious environmental allergies.

My doctor thought that the high blood pressure was concerning due to my age. I am not overweight but I am a bit chubby (fall in the high-normal range). I don't eat junk food and excersize when I can. So I don't know what that's about.

Thanks again :)


Fantod - June 4

tesse - Welcome to the board. At least 10% of the people who have the antibody test for celiac get a false negative reading.

You should be tested using a stool sample. Entero Lab (you can find them online) does stool testing for gluten intolerance among other things.
FYI - A lot of doctors revert to a biospy to check for Celiac. That is not always accurate either. Celiac affects patches of the villi in the small intestine. If they get a biopsy from an area that is not affected than the whole procedure is a waste of time, money and a lot of uneccessary stress for you.

The lesions on your mouth and skin could be Lichen Planus. You should be seeing a dermatologist and/or a specialist dentist to determine what is going on with your skin in general.

Do you have problems with dry eyes or mouth? I'm thinking that this sounds like a gut problem, or Sjogrens more than Fibromyalgia.

Have you had your thryoid checked? Even if you have, I'd see a top notch endochronologist and have it checked again. Your hair coming out in clumps could be due to stress, celiac/gut or your thyroid.

As for concentration and memory issues, who wouldn't have problems with all the stress that you are under. I'd recommend that you try a supplement called "phosphatidylserine" which is also referred to as "Neuro - PS." My nutritionist recommended it to me and I think that it helps.

I hope that you get some answers soon. It sounds like you have already figured out that you have to be your own best adovcate. Good luck and take care.


Fantod - June 4

A massive thrush infection also comes to mind but Lichen Planus seems more likely.


tesse - June 4

Thank you for your response Fantod. I actually was on a very strict gluten-free diet for a year (was extremely careful about cross-contamination and such) and my symptoms did not improve.

My doctor said that the internist will check for thyroid issues, but as it stands my thyroid function blood tests came back normal.

I've never heard of Lichen planus before, but that actually describes my mouth lesions very well! I get those weird raised line things as well as the mouth sores (tested negative for herpes). I don't have any skin rashes except these tiny raised circular bubble things that appears on my arms hands and legs, but they are so few I don't know if they're related. I am definitely going to mention this to the specialist.

I'll try phosphatidylserine, I'll take anything that could help. Thanks!


Fantod - June 4

Your reply sounds exactly like Lichen Planus to me. My best friend has it. It starts with what look like tiny blisters and then progresses to persistent open sores. They can appear anywhere on your skin in addition to the mouth. She has Sjogrens and fibromyalgia as well as gluten intolerance. The skin problem gets noticeably worse when she strays off of her diet.

I still think that you should see an endochronologist about your thyroid. I know that things move slowly in the Canadian healthcare system. Hashimoto thyroid is another possibility and it is common to go undetected until the symptoms get pretty severe. I'd start jumping up and down now asking to see an endo. Take care.


Karkel - June 5

Do you or have you ever had breast implants ? I did and had all those symptoms, I had them removed the symptoms aren't as bad but still are not 100% .


tesse - June 5

Fantod: Things DO move so slowly in the Canadian health care system. I've waited up to 6 months in the past to see a specialist only to have them send me back to my family doctor after one useless visit. The best thing I think I can do is visit the specialist armed with as much information as possible just to ensure that I am, as well as the doctor, on the right track.

Thanks for suggesting the endochronologist. My doctor did mention that the internist I'm seeing is also an endochronologist and will look for any possible thyroid issues, although I've had blood tests for thyroid function many times and they always come back normal so I don't know.

Karkel: No breast implants! I've always wondered about how safe those are.


Karkel - June 5

all my problems starting 2 weeks after getting them...worse mistake of my life! Only had 2 1/2 years and been out over 5.....



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