Some thoughts...

1) what have added to your diet now that you have not been eating regularly? It may take time for your digestion to adjust to the new and increased amount of food.

2) Have you considered that you may have a gut issue? Possible yeast overgrowth and that maybe you need to add in a good probiotic and limit sugars at first. The bloating and constipation are a strong indicator of a gut imbalance.

3) Calorie counting can be very misleading in that not all calories are created equal. You really have to look for nutrient rich food when trying to modify your weight.

4) What vitamin levels are coming back higher than normal? And are you taking supplements?

Yes, I have had everyone from my GP, OBGYN, Fertility Doctors, RH, Neurologist, and even alternative therapists look into the lack of menstruation. The official diagnosis is amenorrhea.

Recently, my new OBGYN pulled series of hormonal tests and my estrogen and progesterone came back unmeasurable they are so low. I considered birth control pills but decided not to add another "pill" into my body. The Tramadol and Linzess are doing enough damage for now! I am on synthroid for hypothyroidism. Now I am beginning to wonder if my thyroid stopped working because of low body weight as well...

I've noticed in recent years that this has been a change in how doctors communicate with patients, and there have been articles and studies about it. When doctors act alarmed, disapprovingly, and/or scold patients, it tends to be off-putting, and some patients avoid their doctors out of fear of chastisement/embarrassment which can lead to un(der)treated health issues and further problems down the road. I've noticed the same change with dentists.

Mentioning/suggesting to patients is less "threatening" and often/usually results in better communication and cooperation, but some may think the doctor's casual attitude is unconcerned.

I think what that shows is that you can't win them all/danged if you do—danged if you don't, but the studies suggest that the milder approach works better for the greater number.

I'd love to cite the studies, but I admit I'm uncharacteristically winging this one from memory.

Kinda meaningless. :Dunno:
Which agrees with Glenntaj (cited causes notwithstanding), and what I was thinking. What's relevant is the reason for amenorrhea. ;)

I also agree that it's not just about calories per se. Nerves—as well as muscles, bone, and other organs—must be fed the right things to stay healthy.

anorexia amenorrhoea neuropathy

Doc

Hi Cat,
I did some research for you. However, I'm not good at adding the web sites here. When you get a chance type in neuropathy and anorexia. There is a wealth of information out there stating that yes there is a substantial connection between them. It is not always connected to vitamin levels etc. One of the issues is tissue lose from chronic malnutrition.

The calories you are taking in every day are :confused:not enough for someone as active as you stated. You should be taking in between 2000 and 2200 for an extreme exerciser. How much do you exercise each day?

As far as the irritability, your brain needs a proper amount of nutrition. Also, it sounds like your hormone levels must be really out of sync.

Do you see a GYN for Pap test each year? If so, what are they giving you as a reason for not having a menses in 21 years? There definitely should have been a discussion on this.

I hope your GP has spoken to about this a lot. Unfortunately, I find doctors are really reluctant to discuss weight with patients. I can't figure that out. They should be the first to pick it up.

I really hate to say this but please consider the fact that the symptoms you are having when you eat May be psychological. Being in your situation for so long psychologically this is not going to easy for you.

Again begin by SLOWLY introducing more food.

Another thing I want to suggest, if you can find a eating disorder clinic in your state that you call them. You don't have to tell them who you are if you don't want. Just say you r wondering if you may have anorexia and want to speak to someone who can talk to you about why you suspecting anorexia.

Please read the articles. I think you may understand things better.

Hopeful:hug:

Not really-none of my doctors brought it up as a cause. I am going to ask my neurologist about it next time we meet. It did not really occur to me since no medical professional, other than my OBGYN, brought it up as a medical concern. Now I am so confused and frustrated as today has been one of the worst days of this whole saga....is it my body trying to get used to the extra food or could I be aggravating a different underlying condition?!!

Interesting about the doctors. If I think about some of my past office visits, it would make sense. With patients like us, though, it would be more helpful just to be blunt and get it out there! That is much better than constantly second guessing what triggers symptoms.

On the nutritional end, I wonder what is good and what is bad for regeneration? I have looked at the sticky thread and there is just so much information plus everybody reacts differently to specific foods. I find that caffeine, artificial sweeteners and alcohol throws me off the edge.

I googled anorexia amenorrhea neuropathy and found some useful information so thank you for that.

I was taking the whole litany of supplements recommended on the Sticky Thread but stopped cold turkey on my neurologist's advice. Since I was getting worse, she thought it would be better to avoid them for now. The typical doctor's response of vitamins not being monitored by FDA and we do not know what is in them. Before I started going downhill, she had no problem with them so she is fairly open minded. The vitamin levels that came back high were B6, B12, and B1. This was while I was on supplementation. The B6 levels came down fairly quickly and was dismissed as a cause of my neuropathy since my symptoms did not improve.

Okay so maybe I tried to introduce too much food too quickly? I will try smaller snack size meals and see how that works. Right now I am so ill came home from my kids practice at 5:30 and crawled into bed. I contacted an ED therapist today but she charges over $200 a visit. After all we have spent on my medical bills so far it's just not something we can budget for right now. I will look into the state clinic next.

I have googled a million different eating disorder terms and there is just so much information out there-mostly repetitive. I am not finding anything quite as supportive nor as helpful as this forum. Mostly because I do not low if this is the problem or not.

My exercise has been curtailed the past few weeks as I am weakening. Usually I do either 30-45 mins of TRX training (like Crossfit without the barbells) or 60 minutes hot power yoga. And moderate walks with the dog. It sounds impressive for someone who says they are this sick but two years ago that would be just be one of my workouts for the day. Now it is painful to push though 10 mins of either and leaves me drained but it gives me an endorphin rush that temporarily takes away the pain.

I do see an obgyn. She is the only doctor who said I needed to gain weight. My paper come back normal but my hormone levels came back too low to be measured. Everyone is stumped on the menses issue. There is nothing left to be tested I guess??

The thing is I want to be hungry and enjoy eating when I am- but my appetite is rarely there this last week. The weird part is when I first started to try and eat without restricting a week ago I was really hungry and wanted to eat. Then it all reversed. And the neuropathy pain increased. Oh this is maddening!!!!! I just want to know if this is the cause or not before I waste more energy on another dead end.

Btw I had previously read most of your recovery thread and you are a true inspiration. I think one of possibilities of my issues may not only be malnutrition but "drinking my calories" for a few years. So I have found your posts helpful.... Just not sure if that is it either since I have not had more than one or drinks in the past year and a half and have not improved :(

Omega-3 fats are essential to repairing myelin. They use cofactors--- B12, folate, magnesium, B6, Vit D.

If you are damaged for many years, it may not be possible to correct everything. Some cells die, and their axons shrivel away.
They are not replaced. The body can repair up to a certain point, and then ...well... that is it.

Also when you exercise, you generate alot of free radicals, and this along with the Omega-3 deficiency....accelerates damage to the nerves.

The MSers, therefore use foods, with polyphenols and antioxidants, to prevent further damage. Dr. Wahl's TED lecture and book go into that.
http://www.youtube.com/watch?v=KLjgBLwH3Wc

Hi Cat,
Sorry, it took me a while to get back too you. I'm really happy to hear you have children. When you said you haven't had a period in 21 years I thought you may have had trouble conceiving. How old is your child/children?

I don't think you mentioned if you have health insurance or not. If you do, call the number on the back of the card and ask them for the names of counselors who will take your insurance. If you do not have insurance get the list anyway. If money is an issue many counselors will charge on a sliding scale bases on salary.

As for your exercise, that is quite a bit for the amount of calories you take in. I know cross fit is extreme exercise. I have never done hot yoga but have heard it is difficult. I was very into working out before I got sick. I was at the gym 4-6 days a week for 2 1/2 hours. In order to be that active the body requires much more than normal in the way of calories.

I have found in practice that doctors are extremely reluctant to speak to their patients about weight. As a school nurse, most of the doctors I spoke with concerning a students weight requested I speak with them and their parents about it. I have never understood why. I applaud your GYN for addressing it.
Did the fertility specialist mention it? That's one of the issues they usually address. I suspect, if you were this thin for years it was probably the cause for your periods stopping or at the least it should have been looked into.

I believe you do want to be hungry and enjoy eating. This is an extremely difficult situation your in, those words are not powerful enough to even describe the situation, but it's all I can think of right now. Your words were good, it is maddening.

By saying you have taken most of your calories in liquids, did you mean alcohol. If so, have you gone on the searches here to see what supplements you may need. There are people here that can help you with that.

If you want my opinion, I do suspect, you suffer from an eating disorder. I would definitely see someone. Possibly your GP. Don't wait for him/her to bring up your weight. Make weight the reason for your visit. Perhaps they can even point you in the right direction for counseling. As I said before though, it is not for me to diagnosis.

I don't know anything about your life circumstances but this is sometimes the reason eating disorders occur. Weight is one of the few things we have complete control over when everything else seems to be spiraling down around us.

Did you read about the connection between neuropathy and anorexia. It is interesting. I was not aware of the connection.

I hope this helps a little.
Hopeful:hug: