My doctor won't diagnose me with CFS

[BRISWHARF]

@Hip - Thank you very much for the information.
I've been tested for celiac disease and it was negative. My iron levels were also normal (anemia).
My thyroid levels were also normal and also just to be sure I trialled some Thyroid drugs which made me so much worse!. I've been tested for lupus too. Infact I think I've been tested for all the standard things a doctor would normally test for.

@Snow Leopard - Thank you for your reply. I do think this illness is in some way related to having chemotherapy or radiotherapy in 2013 for breast cancer (aged 33). However I don't think it's normal post cancer fatigue. Just because I felt totally well and back to normal for 1.5 years after cancer treatment then this suddenly hit me. Also I have experienced cancer fatigue during treatment and it's just like being really tired...it doesn't have lots of other symptoms like this (i'm cancer free now). .However I still think the cancer treatment is to blame somehow - like it might have done something to my hormones but they have been tested and they are appeared as fine.

@wastwater - i think i just feel it would be good to have a proper diagnosis of something when other people do. I could join support clubs and friends might understand more why I can't do things. I think it's hard for people to understand that after 2 years I don't know what's wrong with me. People that don't see doctors much seem to think they are magic and know whats wrong and just fix you! So I think they find it hard to understand. Although I understand why you might not bother to get a proper diagnosis too if there's not much help when you do!

Does anyone know if acne and hair loss can be a symptom of ME/CFS?

Thank you

 

[Hip]

Does anyone know if acne and hair loss can be a symptom of ME/CFS?

I have rarely seen it mentioned one this forum, but according to Dr Jacob Teitelbaum, it does occur:

Treating Hair Loss in CFS and Fibromyalgia

Dr Teitelbaum says in ME/CFS the type of hair loss is telogen effluvium (stress-induced hair loss), which involved widespread hair loss throughout the scalp. This stress can be the physiological stress of an illness, or psychological/emotional stress.

But in the article Teitelbaum points out that there are other types of hair loss: autoimmune hair loss (alopecia areata) which usually appears as small coin sized circular patches of hair loss; and male pattern hair loss (androgenic alopecia) which is hormonally caused (caused by the hormone DHT, which can be treated by supplements which lower this hormone such as saw palmetto). Male pattern hair loss (which women can have as well) involves hair loss at the top of the head only, but not from the back and sides.

Any idea which type of hair loss you have? It is patchy, from the top of the head only, or widespread throughout the scalp?


Hair loss does seem to be mentioned as an ME/CFS symptom in the full version of the Canadian consensus criteria.

 

[BRISWHARF]

Thank you for replying.

I haven't noticed any bald patches apart from around the area at the very front (like a receding hairline) Apart from that I notice its just getting a lot thinner generally everywhere and it ends up all over my clothes & floor. Its quite distressing as I only just grew it back long again after chemotherapy and now it's all coming out again

 

[Hip]

The receding hairline sounds a bit like androgenic alopecia, which have had myself since my 20s, and successfully treated it with supplements like saw palmetto (320 mg once daily of the standardized extract like this one) which block DHT, and topical minoxidil applied to the scalp. Biotin 5,000 mcg daily is also useful.

If you have androgenic alopecia, then this treatment will usually bring results within 4 to 6 weeks (ie, hairs stop falling out, and you will see tiny new hairs start to regrow after 4 to 6 weeks). I can give your more info if you want, because I have been using this treatment for decades.

But I don't think that treatment will help if you have the stress-induced hair loss.

If you run your fingers through your hair and pull your hair gently, few hairs will come out at the back and sides if you have androgenic alopecia, but much more may come out if you pull the hair at the top of your head. That's one way to see if you may have androgenic alopecia or not: if the hairs easily pull out at the top but not the back and sides, then I think it's more likely androgenic alopecia. But if you can pull hairs out everywhere, then that's suggests it might be stress-induced hair loss.

High DHT, the cause of androgenic alopecia, can also cause acne and hirsutism in women.

 

[pattismith]

My symptoms are chronic fatigue (bedbound), ringing in ears, hair falling out, acne, sensitivity to sound & light & dizzy. I've been like this for 2 years now & can no longer work (i'm in my 30's). It started so suddenly that I can pinpoint the day it begun & I was well before this.

Hello Briswharf, sorry if I can't help you much as I was not myself able to be diagnosed after 35 years of illness....I wish you to be more successful, hopefully more and more doctors are aware of this disease.

Is your Acne associated to your hormonal cycle?

 

[BRISWHARF]

Thank you for your replies. Sorry for my slow reply....I'm just so tired!

No....I have the acne all through the month. However in the last few days someone has suggested that acne and terrible fatigue can be caused by leaky gut so I'm going to investigate down that route now. Crossed fingers!

 

[leela]

From the symptoms you list, a thorough workup with an endrocrinologist might also be a good idea.

 

[Galixie]

My iron levels were also normal (anemia).

Were your B12 and Folate levels also checked? There are many forms of anemia. Iron deficiency is only one form.

 

[BRISWHARF]

Yes I've literally had everything checked B12, Folate, Thyroid etc etc. No answers!