• Welcome to Phoenix Rising!

    Created in 2008, Phoenix Rising is the largest and oldest forum dedicated to furthering the understanding of and finding treatments for complex chronic illnesses such as chronic fatigue syndrome (ME/CFS), fibromyalgia (FM), long COVID, postural orthostatic tachycardia syndrome (POTS), mast cell activation syndrome (MCAS), and allied diseases.

    To become a member, simply click the Register button at the top right.

Is losing hair common?

Messages
28
I'm begining to lose a lot of hair and no one in my family has lost hair before. Is this normal?

I feel the more I concentrate or try to concentrate such as reading I get more tired.
 

Merry

Senior Member
Messages
1,378
Location
Columbus, Ohio, USA
Hi, Ryan.

On some thread - where? where? - hair loss has been discussed. So I would guess hair loss is common in those suffering from ME/CFS. I have experienced times when hair loss was accelerated.

I'll venture that RoseDosse is trying to sell something and is not interested in ME/CFS.

As for your question about trouble concentrating, that is common. Some days I can't read. Frustrating.

Merry
 

rlc

Senior Member
Messages
822
Hi ryan7817, Hair loss isn't named in any of the diagnostic criteria for CFS, so it isn't considered by the medical profesion to be a primary symptom, however there are a number of people on this board who have it. It's complicated because there are so many factors that influnce hair loss, genitics etc, alot of medications can cause hair loss if your on any.

I don't how well you've been investigated for other possible causes of your CFS, but another thing to consider is that alot of the diseases that can be misdiagnosed as CFS cause hair loss as well as the symptoms of CFS, such as Celiacs, Hemochromatosis, Hypo and hyper thyroidism and other thyroid conditions, Addison's and other major adrenal problems, SLE (systemic lupus erythematosis) anemia etc. So if you havn't been properly investigated for these conditions, it might be worth getting it done incase somethings been missed.

All the best
 
Messages
28
Hi ryan7817, Hair loss isn't named in any of the diagnostic criteria for CFS, so it isn't considered by the medical profesion to be a primary symptom, however there are a number of people on this board who have it. It's complicated because there are so many factors that influnce hair loss, genitics etc, alot of medications can cause hair loss if your on any.

I don't how well you've been investigated for other possible causes of your CFS, but another thing to consider is that alot of the diseases that can be misdiagnosed as CFS cause hair loss as well as the symptoms of CFS, such as Celiacs, Hemochromatosis, Hypo and hyper thyroidism and other thyroid conditions, Addison's and other major adrenal problems, SLE (systemic lupus erythematosis) anemia etc. So if you havn't been properly investigated for these conditions, it might be worth getting it done incase somethings been missed.

All the best

:(:(:(:(

So sad i been sick for 5 months and theres no signs of letting up. I cry every morning. I'm 27 and I got a flue and a week later I have felt like this and it hasnt let up. Dark circles under the eyes always tired and hair falling out.
 

rlc

Senior Member
Messages
822
Hi Ryan7817, hang in there, if you've only been sick for 5 months you shouldn't of been given a CFS diagnosis! what tests have you had done? whats your doctor saying? If you let me know i'll see if i can work it out for you. there's alot of things that need to be ruled out first before worrying about CFS, any other symptoms? All the best
 

Athene

ihateticks.me
Messages
1,143
Location
Italy
Ryan,
rlc is right, you cannot give a CFS diagnosis if you have been ill for less than 6 months at the least.
You need a barrage of diagnostic tests.
You could have anything from severe anaemia to AIDS, you could have Lyme disease, a whole load of autoimmune diseases...
If you want to post a detailed list of your symptoms, I - and a great many other members of this forum - might be able to suggest the tests we think you should ask your doctor for and questions you should ask the doc.

Hair loss is often connected with hormones or nutrition. So if you have any other signs of hormone change/imbalance, there's an area to start investigating. If you have tummy disturbances then nutritional deficiencies could be at the root of your hair loss (ho ho, no pun intended). The main nutrient deficiencies leading to hair loss are zinc, biotin and, I learned recently on this forum, iron.
 

anncavan

Senior Member
Messages
107
Location
San Francisco, CA
Hi Ryan,
My hair falls out whenever my thyroid levels are off. You might want to try getting that checked. Hypothyroidism is very common among people with CFS. It's very easy to treat.
Good luck!
Lannie
 
Messages
28
feel constantly tired. The skin under my eyes burn. Really dark circles under eye. Hair falling out. Fatigue from concentrating or thinking. Constantly just feeling like I have the flu.. Eye bugers. = / . When I walk the next day I wake up earlier than usual and more tired.
 

rlc

Senior Member
Messages
822
Hi Ryan7817 are you still getting the runny nose? Could you tell me what tests you've had done? it will help to narrow down the options! it's sounding alot like a thyroid problem
 
Messages
28
I've had a TSH and a CBC done and they came back within normal range. Yes im still get the clogged runny nose and I tried taken Benedryl to stop it. Any suggestions to ask my doctor about?
 

JPV

ɹǝqɯǝɯ ɹoıuǝs
Messages
858
Like I said, stop eating wheat...

http://www.wheat-free.org/wheat-allergy.html

Symptoms of a wheat allergy or wheat intolerance (not exhaustive by any means):

* Arthritis
* Bloated stomach
* Chest pains
* Depression or mood swings
* Diarrhea
* Eczema
* Feeling dizzy or faint
* Joint and muscle aches and pains
* Nausea or vomiting
* Palpitations
* Psoriasis
* Skin rashes
* Sneezing
* Suspected irritable bowel syndrome (IBS)/similar effects
* Swollen throat or tongue
* Tiredness and lethargy
* Unexplained cough
* Unexplained runny nose
* Watery or itchy eyes

http://www.gfree.co.uk/food_intolerance.htm

Coeliac Disease, also called ‘gluten-sensitive enteropathy’ or ‘coeliac sprue’ is a serious and surprisingly common condition that occurs when gluten (a protein found in wheat, barley, oats and rye) reacts with the small intestine causing the immune system to attack, inflame and eventually destroy the delicate lining of the bowel thereby reducing the ability of the gut to absorb necessary nutrients from food.

It is estimated that approximately 1 in 100-300 people suffer the condition and if left untreated, as well as causing great discomfort, can cause anaemia, bone disease and even some forms of cancer. People with insulin dependent diabetes, thyroid problems and ulcerative colitis have an increased chance of developing coeliac disease and in 2004 a study carried out by Bristol University reported that as many as 1 in 100 children may have the condition. Symptoms can include irritability, tiredness, depression, anaemia, diarrhoea, bloating, bone pain, mouth ulcers or itchy skin rash (dermitiis herpetiformis) particularly around the elbows, buttocks or knees and hair loss.
 

rlc

Senior Member
Messages
822
Hi Ryan7817, your doctors an idiot! just doing TSH is a clasic example of how to miss a thyroid condition, as an example if you don't do T4 as well you'll miss the diagnosis of central hypothyroidism, all your symptoms hair loss, clogged runny nose, fatigue feeling down etc are all symptoms of thyroid conditions. there are alot of other tests that can need to be done to get it diagnosed they can be found here http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm on this site you will find a large amount of information about symptoms and treatment as well.

The referance range for thyroid that is still being used has been proven to be wrong information about it here http://thyroid.about.com/od/gettestedanddiagnosed/a/tshtestwars.htm

If you can get more testing done for thyroid hopefully you'll get your diagnosis soon, and treatment usually helps very quickly.

All the best
 
Messages
45
Location
Northern California
When I first got CFS I lost hair, it was in a patch on the top-back of my head. I also lost hair a few years before I got sick with CFS and that, my hairdresser told me, was from stress. These hairdressers are always the ones who see it and apparently they see it often and say it's due to stress...which of course, you are stressed now from your symptoms.
 
Messages
28
Every morning I wake up feeling very un well. My throat is killing me and I feel just well, sick . I feel like I feel when I
Sick without the flu . My mom
Has CFS so this is looking very real to me . It all started in august 2010 and I feel very suicidal . I am going to make an appointment tomorrow again with my dr but im feeling like this may be it for me . 27 year who just graduated college and now this... Forgive my grammar I'm just in a rather I don't give a ___ mood. Typing this on my iPhone too so it might look funny
 

rlc

Senior Member
Messages
822
Hi Ryan7817 don't give up! your doctor might be able to sort it for you, feeling so depressed, hair loss and all your other symptoms are classic thyroid symptoms, print out the list of thyroid tests on this site and get your doctor to do them http://thyroid.about.com/od/gettestedanddiagnosed/a/testdiagnose.htm and get them to do lot's of tests for other things as well, because it looks like they've hardly done anything, and it's quite likely the condition you have can be found and treated.

All the best
 
Messages
28
:(

Thanks a lot. I'm going to see a doctor next week. Every morning has been really hard. I'm a nurse and working the floor every morning has been miserable. skin under my eyes burn so bad I wonder what that means, even when I get a lot of sleep.
 

rlc

Senior Member
Messages
822
Hi Ryan7817 it's possible that the burning skin under your eyes is some kind of dermatological condition that's started because you systems run down with some thing like a thyroid problem hopefully your doctor will sort it all out soon. You say your a nurse is there any chance of getting a doctor where you work look into things for you? All the best i hope things get better for you soon!
 
Messages
72
I've been looking through this thread Ryan and I want you to know that you shouldn't give up! A lot of doctors will be nonchalant about your symptoms if they aren't "too serious" or life threatening. But you really need to be your own advocate and find a doctor that is willing to take your case, and believe that there is something wrong. If you feel like you can't be your own advocate, find someone who can, like a family member or really good friend, who believes that there is something going on.

Stay strong Ryan and I pray that you will find peace in the place that you're at right now.

Keep us updated!!