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angelangeil

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Hi,
I was diagnosed fibromyalgia in last 3 months and this disease had changed my life. I don't know what to do with it. I have severe hair loss problem with scalp pain and my doctor told me this is because of fibromyalgia. Basically, I'm conscious about my beauty and hair, so shedding of hair had affected my self-esteem. I had lost 3/4th of my hair. Does anyone have a similar experience? Is it permanent hair fall or temporary? Do I need a hair loss treatment? Is it really effective? I have sleeplessness and muscle pain too. All these health issues made my life so tragic. Please advice me in my concerns.


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Forgetmenot

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Oct 6, 2014
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1,529
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DX FIBRO
Diagnosis
70/2010
Country
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Welcome, the more u stress over your hair the more you may lose it.its catch 22.
Fibro takes a very long time to come to terms with,so many pain and niggles pop up you find it hard to keep up.
What has your Dr put you on for pain.?
I've not meet anyone who has lost all there hair to fibro. And all of us have lost some.mine used to be a lot thicker then it is now.
 

angelangeil

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Diagnosis
12/2014
Country
CA
State
Oakville
I'm using amitriptyline and cyclobenzaprine. Do I need a hair loss treatment? My hair stylist suggested me to have hair loss treatments in Canadian hair transplant surgery, Toronto. I'm thinking about it, that much fed up with my hair.
 

cmetryme

Extremely helpful member
Joined
Nov 3, 2013
Messages
1,030
Reason
DX FIBRO
Diagnosis
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Country
US
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ask your pharmacists about the meds and see if that is causing. talk to your doctor as well.
 

Forgetmenot

Legendary member
Joined
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70/2010
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I am on amitriptyline, as for your hair only u no what u wanna do on that front ,
Has your Dr mentions Alopecia to you.
 

Mpoppins

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Joined
Oct 1, 2015
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DX FIBRO
Diagnosis
08/2014
Country
US
State
Mississippi
I have been dealing with the hair loss for a couple of years. Very stressful! The dermatologist diagonsed me with scarring alopecia. My fibro dr. says that only his fibro patients complain about their scalp and hair hurting. I honestly think high stress leads to flare-ups which leads to more hair loss. When my pain levels are high or my stress is high, my scalp is on fire. I use about 7 products on me hair to make me look like I have hair.
 

Getemgirl

Active member
Joined
Sep 8, 2015
Messages
98
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
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Utah
I have thinner hair, but I thought it was my age, 48. My hair has gotten curlier though. I had stick straight hair all my life and now it is wavy. I only have a little grey, so that isn't it either.
 

moe1959

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Joined
Sep 13, 2014
Messages
708
Reason
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Diagnosis
09/2014
Country
US
State
wa.
Yep half my hair is gone. (STRESS) . I USE TO WASH MY HAIR AT LEAST EVERY 2 DAYS, NOW IT'S 3.TIMES, I WEAR A HAT, WITH MY HAIR TIED BACK IN ALMOST A RAT TAIL.so so sad that's our crown of glory. I MAKE THE BEST OF IT I can.. I THINK WELL, AT LEAST I HAVE HAIR. I ONCE WATCHED DR OZ SHOW , HE WAS TALKING ABOUT THE PATUIARY GLAND AND IF THERE'S A INTERFERENCE IT CAN MAKE HAIR FALL OUT.
SO WHAT DO WE DO.?WALK IN OUR DR'S OFFICE AND SAY, HEY WE NEED TO CHECK MY PATUIARY GLAND. (Maybe).
WHEN I REMEMBER I TAKE PRENATAL PILLS, AND OTHER SKIN VITAMINS.
I'M WITH YOU, WRITE ANY TIME, I HAVE ACTUALLY THOUGHT OF WIGS, BUT THEY ARE SO EXSPENSIVE.
 
Joined
Oct 8, 2015
Messages
17
Reason
DX FIBRO
Diagnosis
05/2015
Country
US
State
IL
Hi there,

Have you had a full thyroid panel test (panel tests Reverse T3, TSH,free T3,free T4 and thryoid antibodies) I was diagnosed with hashimotos (autoimmune hypothyroidism) and excessive shedding was one of the symptoms I had. I take dessicated thyroid replacement medication and have pretty thick hair now. You might also want to get vitamin levels checked, I know that some vitamin deficiencies can cause increased shedding. Could also be a result of one the medications you're on too. I think it's pretty reasonable to bring up the hairloss issue with your GP, could be a sign of something else going on and not fibro related.

oh and I forgot to mention, I do have fibro flares that cause burning sensations along my hairline. I think that sensation if from fibro, but the hair loss is most likely caused by something else
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
I guess my hair loss is normal. I always lose what seems to be about a fistful of hair in the shower but my niece, who is 20 years younger than me, has many autoimmune diseases that started around the age of 20. One of the diseases that affected her self-esteem the most was Alopecia; a disease that makes your hair fall out, just like MPoppins commented too.
My niece spoke with her hair stylist who was able to cut her hair to make it look like there was more. Later, when it got worse, she wore a wig for awhile.
Luckily, when she got pregnant, all of her symptoms from all of her autoimmune diseases went away. What? She was told that it could happen but it doesn't for most people. She was a lucky one and when she was in labor, Raynaud's was the first ugly disease to pop up again. As far as I know, she the Alopecia has not come out of remission (right word?).
I'm not saying to get yourself pregnant and hope for the best but it sounds like there may be some good research in there somewhere doesn't it?
 

diamond

Legendary member
Joined
Sep 18, 2015
Messages
1,548
Reason
DX FIBRO
Diagnosis
01/2008
Country
UK
State
anywhere
My hair has thinned a lot since i got fibro and comes out lots when i wash it...all over my shoulders in the shower. My hairbrush gets full of hair in a week and when i get it all out of the brush to throw in the bin i have a handful of hair.

Luckily my hair is still reasonably thick looking but not my shiny crowning glory of pre fibro days.

I think its an idea to get your ferritin and iron levels checked as these can affect hair loss.
 

Lori Guerrero

New member
Joined
Nov 7, 2015
Messages
3
Reason
DX FIBRO
Diagnosis
06/2015
Country
US
State
CA
I had long, thick, beautiful hair. Now I'm losing hair on a daily basis. I dread brushing my hair because I know what my brush will look like. I've done a little bit of research on the subject, and yes, it is a side-effect of fibromyalgia. :(
 

Forgetmenot

Legendary member
Joined
Oct 6, 2014
Messages
1,529
Reason
DX FIBRO
Diagnosis
70/2010
Country
UK
State
Hertfordshire
Can I just say that we are animals we molt. Some times there so much hair in the sink I would've thought I was bold. But we molt for all the seasons .so bear that in mind before u panic x
 

Loftpat

Senior member
Joined
Aug 12, 2013
Messages
374
Reason
DX FIBRO
Diagnosis
08/2013
Country
US
State
ME
My mom takes biotin for hair thinning. It has helped her--not to where it was before but at least we can no longer see her scalp. Also keep in mind that hormones play a role in hair thinning. Menopause is not your hair's best friend!
 

Cheryl Ann

Senior member
Joined
Aug 20, 2015
Messages
221
Reason
DX FIBRO
Diagnosis
04/2013
Country
US
State
MI
There are some days when I seem to have a lot of hair come out when I wash and esp. when I condition it, but I don't think I have Alopecia.
I think, as Forgetmenot stated, its just normal "shedding". However, I have had very dry, frizzy hair since beginning all of the meds. The worst of it has grown out over 2 years and has been cut off and I'm trying a re-nourishing conditioner.
 
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