Thankful for tips

[ChampagneDiamonds]

Like MANY of you I've suffered years,but autism ,chronic ptsd and adhd is enough to keep you away from telling doctors anymore!!!Or you just don't mention because it overwhelms THEM!!so I stiff upper lipped pain for years,Diagnosed now with FM but also had MRI for full diagnosis possible FND,not got results yet,BUT all you who suffer this know the episodes and pain from this dreadful and can do nothing for diagnosis!!!My head has itched a lot for years I put it down to sls in shampoos etc...now I'm scratching like another member said like a dog!!!!!¡!it's most uncomfortable,driving me insane,goes through whole nervous system when I try to alleviate, keeping me awake etc!and I've tried topically everything from a-z and back!!antihistamines too!!if anyone has a remedy please post!!!!!

[Gigiruth]

Hi ChampagneDiamondsI am up early with itchy scalp and ears. Shampoos do make it worse for me but main trigger is stress and poor sleep.

It is not intense as it used to be. Ugly thought but my ears and head used to bleed with the scratching. My hairdresser used to comment. There is currenting another post on this. I have tried using polvagal exercises to give relief to the whole system. Helpful but only if I keep doing it. I use Deb Dana 58 cards for information. I think sugar and poor sleep make me itch more.

I hope you get to reduce it

Take care

Gigi

[ChampagneDiamonds in reply to Gigiruth]

Hi Gigiruth,thanks for your useful lmformation, interestingly,my stress levels are constantly through the roof due to Chronic ptsd,Autism and adhd,however I cope /survive best I can.Stress and diet not so good of late again,and its a thing I used to be very interested in,food effects on body and mind.Do you have any bad cramps? My cramps in legs and feet are very deep, sore and can be quite long,Very worrying I also have whats known as wet knee now,is this another FM symptoms,sorry I've gone on ,but having other people who know are the best info and makes it easier to understand. Enjoy rest of your day. Pauli

[Gigiruth in reply to ChampagneDiamonds]

Hi PauliI have never heard of wet knee but have knee problems. Yes I have had bad cramps in my legs and toes over the years. Medical folk said it was my autoimmune issues as I dump calcium randomly. I took selenium at the suggestion of my consultant and improved my diet and took probiotics. No idea which thing I did made a difference but only get cram when I am over tired now. I Cut out alcohol,processed food,some colours and additives. Also tomato seeds.

I hope you feel better soon.

My we are complicated!

I have regular blood tests to check levels.

Take care

Gigi

[bookish]

Hi, my head used to itch terribly at times, sometimes a kind of wave of prickling which seemed more nerve related but other times a direct reaction. I was finding chemicals and foods a problem so I ditched all the chemicals I could (and some of the foods) , including on the skin. Now I wash myself and hair with a simple olive oil bar (Oliva) which works fine for me. I also use an anti-inflammatory, autoimmune type diet, which has slowed down progression of my autoimmune conditions. Gluten had been a problem for me but I'd never known. You often don't with things that you eat regularly as your body just adapts and you accept the reaction as your 'normal'.

Do you take B vitamins or has anyone every fully tested you? Problems with methylation can be associated not only with increased susceptibility to pain especially under stress such as with fibro and PTSD, but also with autism and ADHD, and of course with the related neurological damage due to poor B vitamin metabolism/functional or cellular deficiency. I'm not trying to give you false hope of cures here, but it could be worth looking into in case you can improve how you are at the moment. Over time our individual genetic SNPs (epigenetic polymorphisms - predispositions) may be triggered by our other illnesses, diet, lifestyle etc etc. Some that have been linked include MTHFR polymorphisms (although most are common and there is a lot of overblown hype online so doctors often ignore it completely rather than consider that it may have a small impact on some of us, possibly larger in conjunction with other polymorphisms), COMT, MAO, MTR etc. You may find that active forms of B vitamins might suit you although some with two copies of the two commonly tested forms of the MTHFR variant struggle with methyl groups so need to be very careful and slow to introduce (as with any supplementation).

Have a read of theautismdoctor.com/2018/au... which mentions the different forms of folate (B9). I found that methyltetrahydrofolate in small amounts made a big improvement for me that folic acid had not. I've never tried folinic.

And redmountainclinic.com/a-gen...

I found that I have a slow COMT predisposition. COMT is magnesium dependent and adding magnesium helped enormously - but low and slow again! I use an oil spray on (unbroken) skin, just a little, at night. (I also have SNPs on MTHFR, MAO and MTR, all of which are also involved in the folates cycle/methionine cycle).

It will be interesting to see what your MRI shows, but please do not accept a FND diagnosis without getting your Bs and markers tested. B testing is complicated for many reasons and you cannot assume that a 'normal' in range serum test means that you do not have a deficiency. I can't take the time right now to go into all of that I'm afraid, but will later if you wish. If your Bs aren't metabolising well, you may have raised markers in your blood (or urine) to show that. So the tests that ideally you would want are serum B12, active (holotc) B12, serum folate (B9), B6, anti-parietal cell antibodies, anti-intrinsic factor antibodies, serum gastrin, homocysteine (important) and methylmalonic acid. Your full blood count will also give pointers. I'd also want vit D and magnesium tested especially in view of the bad cramps. Note, if you already take B12 or B9 or a B complex then your markers will have been skewed and will make a deficiency that hadn't been diagnosed very much more difficult. And please always get a copy of your results so you can monitor over time, which doctors do not have time to do but can be very useful. If you have any autoimmunity (or in the family), or a B12 deficiency or Pernicious Anaemia in the family that increases your chances of low Bs, as metabolism is strongly genetic.

Best wishes

[ChampagneDiamonds in reply to bookish]

SIMPLY THANKYOU for all your invaluable information!!completely MY wavelength!I only managed a head mri with the mask on,which apparently was very brave,I explained to nurses of my conditions,esp Chronic ptsd,which was me being pinned, down a lot ,and sexually abused by father,for 18years,I'm a very stiff upper lipped get on with it person and asked the nurse for a minute after the head scan ,to prepare myself for being more shut in , but they were not having it!! So I have asked my doctor for another appointment.The mri doctor asked me to lift my leg off the bed, but I couldn't,I wanted to but my legs remained still,FND you're right I'm not sold on it,I have had blood test done again recently all seemed fine,however last 2 urine samples have shown microscopic traces of blood!!and luckily the past few months I've not taken much meds!!so I can pinpoint!!I try to do things as naturally as possible via foods rather than supplements,I have appointment in May for results , etc, with mri doctor,hopefully shed some light,I am /was a bomb about person,done Gym weights for adhd,was still high as kite!!lol, then yoga,I love(d),helped me sleep,however cramps would prevent/come on no matter how much I warmed up,let all go by wayside and with all FM stuff pains etc I'm v depressed and lost,,with no focus,trying so hard to get back on life's wheel,so thankyou for your reply it was v much appreciated .Enjoy rest of your day

ChDs

[Heloise in reply to ChampagneDiamonds]

It's pitiful what patients have to go through to get even inadequate treatment. I hope some of the above works for you but one thing that made a difference to me was adding apple cider vinegar to the regimen and I applaud you for your diet changes, etc. Even a diluted vinegar as a rinse after shampoo will feel good.

I've also learned that insulin resistance has an affect on the skin so taking the fermented ACV with probiotics is the one to use. It is an antifungal, it can block some starch and aid digestion. This will actually help fight insulin resistance. Merely take a tablespoon before meals whenever you can; one or two meals per day. Some feel the acid will harm your teeth. I only found that it whitened mine. Best wishes to you.

[bookish in reply to Heloise]

Great point Heloise and Happy New Year to you and yours! I use a good ACV on my food to help with digestion, as well as coconut oil as an antifungal. Great for skin as is honey. Also lemon juice before meals, but generally with a straw. I'd recently started to get itchy again on my back but have been advised that too much hydroxocobalamin may cause this especially if we don't methyl well, when the active cobalamins (methyl and adenosyl) may be better. Hope you are doing well x

[Heloise in reply to bookish]

Happy New Year to you, bookish! People think it's too simple so I'm glad you are promoting the vinegar, it made a big difference to me. Tweaking the estrogen issue also gives the body a break. I'm feeling very, very well.

Are you trying a lower dose of the B12 or a different form? I thought it was difficult to overdose on B12. I read that low potassium could be an issue. I heard a speaker say that our electrolytes are "off"; too much sodium and not enough potassium and magnesium. He is a nutritionist speaking mainly about the U.S. but has pointed out the decrease in life expectancy (down 3 years in U.S. and 1 1/2 in UK), decrease in I.Q by several points and just a downward trend in our absorption which is continuing. Interesting fellow drpaulclayton.eu He may have something about B12.

Great to see you Bookish!

[bookish in reply to Heloise]

Hi, brilliant that you are doing well! Compared to a few years ago, so am I, but I hope to get better still. It is difficult to get too much B12 although kidney issues can slow excretion so serum may look high (which of course isn't the same as too much cellularly). But we don't all do equally well with all types. I'd taken cyanocobalamin for years - helps a bit but not as much as methylcobalamin did when I found out about that. But we also need adenosylcobalamin, and that converts mainly from cyano or hydroxo, so I take a methyl/adenosyl mix and a hydroxo. I take a lot, three forms in three different formats, multiple doses spread out over the day. Low potassium can be an issue especially when first having B12 injections, although not as much of a problem as some would suggest. I can well believe it about electrolytes - magnesium deficiency far too common but many so salt-avoiding that they are also low in sodium. We don't need the processed rubbish but good mineral salt is essential. I grew up near a good salt maker so I use theirs, and don't get dizzy anything like as often. Hypotension and POTS and histamine reactions all may do better with a bit more good salt. Potassium also needed, all about the balances again, and learning our own requirements.

I'll have a look at Dr Clayton, thank you (but likely after weekend as a busy one for work, hopefully!!

Take care xx

[bookish in reply to ChampagneDiamonds]

You are more than welcome. Well done for coping with that. MRIs trigger mast cell degranulation for me and I was a mess after a short one on a foot, never mind a head and with PTSD. Food is so important, but we need to be able to absorb it, and after about age 50 we do not have enough acid to properly metabolise B12 even with a high-B12 containing diet. I am sure that you will be able to make progress. Very best wishes

[bookish in reply to ChampagneDiamonds]

I always forget to mention something!

Stress in any form and in its widest sense can significantly deplete vitamin and nutrient levels, even short-term stress never mind lifelong, and if we are predisposed to struggling with slow processing of neurotransmitters and therefore prone to the effects of higher stress hormones *and* we need those vitamins to help us speed up that processing, then you can see how we end up in a bit of a pickle.....Vit C and D and zinc are affected but also magnesium (strongly depleted) and B vitamins. Some doctors are now testing for magnesium but deficiency is common so you are reasonably ok to assume deficiency of that one if you can't get a test. Just take it slow and steady. Keeps you regular and helps you sleep and very calming. Lots of different types so if one doesn't suit you can always try another, or more than one. I use Better You. (Remember the B12 and B9 do need testing due to need to identify type of deficiency and the D too as you can have too much of the fat-solubles). Cheers

[ChampagneDiamonds in reply to bookish]

Again mighty thankyou, i will definitelylook into all you have said,oh n add peri/mena/post pause on top of these issues,remember when life was a breeze...!!!!!😂😀💃

[bookish in reply to ChampagneDiamonds]

Oh yes, oestrogen.......slow COMT enzyme function doesn't just mean you struggle to clear neurotransmitters in a timely fashion, it also affects other catecholamines like catechol oestrogens - so you may not be metabolising and clearing oestrogen in the best way either. You do need the stuff but only the right amount in the right places for the right length of time. I struggled with exogenous and endogenous oestrogen, magnesium helped a whole lot and now I'm past it things are much easier!! xx