My list. (Would greatly appreciate any feedback)

[Momzilla]

Thanks Christopher. Hopefully you're right. Female pattern baldness isn't something that runs in my family, so I suppose if the cause is found...

 

[Jemima]

I've mostly accepted I'm losing my hair at 37

We're the same age, Andrea!

I rocked a GI Jane-esque buzz cut for almost a decade. I originally shaved my head for charity, but having gone through a series of traumas up to that moment, I found it oddly liberating, and decided to keep it. Years later, after I arrived in Portugal, my best friend here went through a long battle with breast cancer that sadly defeated her in the end. While she was going through rounds of chemo, we'd roll about running errands as baldies together, giving people a little sparkle of attitude if they reacted strangely to us! I think it helped her a lot.

Sometimes, it can be so unfair how much is out of our control, but state of mind can be so powerful in helping us dig deep and get through it. I have the feeling that you're already pretty good at harnessing that! Christopher's totally right - you never know if you might be looking back at this in the not-too-distant-future as something that is behind you - but in the meantime, wielding that acceptance as you quest on is epic.

On the fatigue, you've probably read it on other threads already, but some of us find supplements make a big difference. I talk CoQ10, Alpha Lipoic Acid, and Acetyl L-Carnatine daily, and that's given me more energy and mental clarity - not perfect, but a lot better! These target mitochondria, which are like the little energy converters in each of our cells. Poor mitochondrial function has been tied to fibro, which is what made me go down that path. If you Google it, you can read about that. Apparently, thyroid hormones have a direct impact on mitochondrial function too.

 

[Auriel]

Yeah @Momzilla i was wondering cos I never really thought of ultrasound jelly as a dye (sooo glad we cleared that one up pheeew’) also I don’t like referring to fibro as a disorder or a syndrome either I just feel the terms underestimates the impact it has on the body,the system and the general life of those who’ve got it, so when I talk about mine to people I just refer to it as a condition (I feel it best fits me).its also really sad that you eat healthily yet you’ve got all these things going on? ? ? . I’ve been considering going on a juice retreat I’m kinda curious see if there’s any benefits (just hope I won’t be all cold turkey for food!) .

 

[Auriel]

There’s a sad yet amazing post I’m all welled up now reading that (I’m such a sap sometimes)

 

[Jemima]

There’s a sad yet amazing post I’m all welled up now reading that (I’m such a sap sometimes)

 

[sunkacola]

About how to refer to FM -- I tend just to say to people "I have a chronic pain condition." and leave it at that. If they ask questions I answer them but if they don't, I have avoided mentioning something that some people don't believe exists. And it say it all, really -- chronic, and pain. For most people that's enough to know.

 

[Geeena]

Hi there
Re allergic skin reactions etc
Please consider what your skin in touch with

Henna, any hair dye, sets off dermatitis which then becomes hard to treat.

The lanolin in eczema treatments or eye drop treatments or the paraffin can also cause dermatitis.

The worse culprit according to my consultant is washing powders/liquids.

Boots sensitive liquid for clothes is good price and doesn’t contain allergens.

Key for me was regular daily treatments with Acrivastine pills. This is otc Benadryl non drowsy. Your GP can prescribe this because I had to work through all the usual ones until I got to this one. I’m no longer on them.

Diet - I’m sure there are lots of resources on this you might find some that sunkacola has placed on this forum.
Diet was also key for me - I found after allergy testing I’m sensitive to a lot. I never managed to get my diet under control until this year as I was using sugar to boost mood and energy - but I didn’t drink or smoke - everyone’s different but for me getting to grips with new ways of coping with stress helped me get through some awful flares. My skin flares were the most awful and I want to let you know I have real compassion and sympathy for what you are having to put up with right now- stay strong there is some great support on here !

I want to thank anyone on this board that posts because like your post they have always reminded me I’m not alone with this and that we need to be very gentle with ourselves , and that flares can attenuate or end or we learn to cope.
Full catastrophic living by Jon Kabat-Zinn is helping me get on with the breathing/meditation side of things.

Ask if you can be referred for any tests that could show your thyroid, b12, vit D and iron /full blood count. Also specifically a neurologist and/or a pain management team.

 

[JayCS]

iron

I keep forgetting to mention iron, but mine's never been down, as opposed to the other 3. I think more women than men...