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Eating Disorder Neuropathy???
It has been some time since my last post. I am in a serious hole and not sure how to climb out of it. My neuropathy is steadily worsening again. After a vacation in Florida to visit my parents, they convinced me that a possible cause of my symptoms (numb hands and feet, pain in feet and legs, constantly being cold, dizziness, fatigue, constipation, insomnia, irritability, etc.) could be the result of an eating disorder.
You see, I lost a lot of weight in college after being overweight for a few years. The healthy diet turned into being overly obsessive about being "fat" again. So, for about the past 25 years I have been on a continual restrictive diet and exercise rigorously. In the last few years, I have kept it in the low 90s and high 80s. I am 5'2" and usually weigh between 87 and 92 pounds. For years now people have commented on how excessively thin I am, although some tell me how great I am looking these days which makes me want to lose/maintain despite the concern of those closest to me. Have any of you ever been diagnosed with some kind of nutritional neuropathy? Keep in mind my blood work has always come back with higher than normal vitamin levels. And there is no evidence of stress on kidneys or liver. I decided to "self treat" for anorexia and rapidly increased my calories this past week with the goal of gaining 10 lbs and seeing if that helps. I have to tell you so far I feel WORSE. I am so tired and bloated and in pain. Hoping someone out there has had a similar experience before I venture out into the world of eating disorder forums. Please help! |
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FWIW, checking a few Height/Weight Charts, a small-framed woman should avergage around ~110 to ~120 ±2 lbs.
I know there's a lot of controversy about these charts, hence FWIW. Doc |
Yes, there is a lot of controversy concerning weight charts. Wonder how much of her weight is muscle as well. It depends a lot on the person as well. Everyone is different.
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I am the same height as you and the weight you are at is not a healthy weight for you. There was a time in my life when I went down to 102 and people kept coming to ask me if I was ill. I have an extensive background dealing with anorexia. I spent 15 years working in a high school. I also took several classes and conferences on this subject. I even wrote a research paper on the subject. I don't mean to be intrusive and don't know if you want to post your answers but the following are all things for you to think of. If you are of age, do you still get a menstral period? Do you have a thin layer of hair on your face? Do you use laxatives? When you have them drawn are your electrolytes normal? Are you a calorie counter and if so how many a day? Is your hair very dry and damaged? Do you have purging tendencies? How are your teeth? Again, you don't have to answers me just think about this. Most the symptoms your having could be caused by anorexia. I have seen a lot of people, especially woman, diet and then it gets away from them. They live in fear of gaining back any weight and normally end up losing more. Society tells us we need to look a certain way and some of us oblige. I'm sure you can guess many years ago, I started on this track. I was doing some modeling and I was down to 100 and had people asking if I was sick. I thought I looked great. I knew it was becoming a problem for me and sought help. I consider myself lucky, I caught it before it caught me. I also shared what was going on with my husband and he kept an eye on me. I know you probably don't want to hear this but a normal weight for a person at your height with a small frame should be 108-121. Now not everyone is in that range but you can see how significantly lower you are. I do think it is great that your vitamin levels come back normal. What you are eating must be healthy. Has your doctor ever spoke with you about your weight? If you want to gain some weight back do it slowly. Your stomach must be very small at this point and can't hold too much food at once. I would suggest small meals at least 4 times a day. It sounds like you already know how to eat healthy so I won't go into that. I hope this helps and doesn't sound harsh or intrusive. I really do have a soft spot in my heart for people who suffer from this. Not saying you do. That is not for me to determine. Hopeful:hug: |
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To answer your questions: If you are of age, do you still get a menstral period? I am 40 and have not had a period in 21 years. Do you have a thin layer of hair on your face? I guess so? Do you use laxatives? No but I do use lizness for constipation which tends to give me diarrhea at times. When you have them drawn are your electrolytes normal? Nothing has been tagged as abnormal. Are you a calorie counter and if so how many a day? Yes, until the past few weeks I kept it between 1,000 and 1,200 calories a day. Is your hair very dry and damaged? Yes but I also process a lot Do you have purging tendencies? No How are your teeth? Aside from cavities, appear to be fine? I feel awful everytime I eat now. And I am more tired and more dizzy with this new eating regime. I tend to overdo the calories in my morning smoothie and then pay for it all day. It just seems like the easiest way to get the extra calories in. We just got back from dinner and I forced myself to eat despite a complete lack of appetite especially since we were with friends. My stomach is so swollen the past few days I look pregnant! And the constipation is just awful. It makes me irritable and not fun to be around. I would think the extra calories would HELP with the neuropathy and energy if it was anorexia causing it but it is the opposite. I am not sure what to do....so frustrated. You are not being intrusive at all-I am the one that put all this out there and really appreciate your time. Can anorexia be a major contributor to neuropathy? If so, why is the extra nourishment making me feel worse? I am attempting to take in close to 2,000 calories a day which is scary but almost liberating as well. BUT if it continues to make my condition worsen what is the point? |
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You haven't has a period--
--in 21 years at the age of 40?
Has that ever been looked into? There are many causes for this, but being very underweight is certainly a leading candidate--and that would mean a lot of hormonal abnormalities that could lead to many kinds of symptoms . . . |
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? |
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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... |
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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. Quote:
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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 |
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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: |
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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. |
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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 |
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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: |
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While there is some truth that weight isn't everything, and people should not be discriminated against/ostracized for legitimate weight issues, some—perhaps many—are using this as justification/rationalization for being unhealthily overweight. Some are just defensive; others are downright aggressive/militant about it. See also my previous. Doc |
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The fertility specialists did bring it up, but did not go into depth. I really think in our society of ultra thin being the optimal, low weight may not be seen as unhealthy until it is a hospitalization issue. Or as you said, doctors are just reluctant to discuss it. They ran all kinds of tests anyway and nothing came back positive so my official diagnosis was amenorrhea. Thankfully, I was still able to have children with a series of high dosage FSH/HCG injections. I have two 9 year old boys and a 4 year old boy. Upon your advice and others, I did see my GP this week and she said gaining weight to a normal BMI would be beneficial. Since she is a GP, I believe that neuropathy is beyond her family practice. Again, there was not a huge concern....she did not say "you probably do have an eating disorder and we need to treat it." She did say I should discuss this with my neurologist. So I went in to see her as well and she seemed to think that while this may not have helped my situation, she is also reluctant to say it is the cause. I tend to agree with you all that there is a definite connection here and so I am also going to see an eating disorder specialist. Nothing else has seemed to help my condition so it is worth a try! While the pain in my hands and feet have not improved with the increased caloric intake, the dizziness and muscle weakness is definitely better! It has been about three weeks and I have definitely gained weight although it is actually hard work for me... Are you still not able to workout? At times it makes me so exhausted and my feet hurt to the point that I can barely function the rest of the day-but it is also my sanity. How can something so good for you become bad???? Thanks again for all the thought you put into your responses to me and to everyone on this forum. Between you, Dr. Smith and Mrs. D you could start a medical facility of your own ;) |
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It works on a number of levels—the more I thought about it, the more (ways) it makes sense. We're rooting for you. Doc |
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I haven't been feeling real great so I haven't been on here in a while. I'm really glad you are trying to gain some weight now. It great that some of the dizziness and muscle weakness is going away. That's terrible that you had a parasite too. I'm sure that made things a lot worse. You may never know if your neuropathy was caused by the lack of nutrition. Does it really matter? Getting healthier is the most important thing. I know I may never know the reason for my neuropathy. I'd be lying, if I said sometimes I don't still search for the answers. But, most of the time I accept not knowing and concentrate on finding things that help to ease some of my pain. I'm proud of you that you are going to see someone who works in eating disorders. I realize what a huge step this is. They would be the best source to tell you if you have a eating disorder. I am still not able to work out but recently I stared PT to help build my muscle strength back. It leaves me in pain afterward but it subsides. Emotionally it makes me feel better. No need to thank me. We all help one another here. Hopeful:hug: |
Okay I feel like I a, doing everything right!!! Eating more, gaining weight, managing my symptoms with as few medications as possible and then BAM! I get hit with the worst day in a long time.
As previously discussed in this forum, I am seeing an eating disorder specialist. This past week she diagnosed me with anorexia. I am underweight and have been a restrictive eater for years-but I never would have guessed this diagnosis. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in a very long while over the past two years I have a little something when out celebrating but I have lost the interest in it. I may have been an alcohol abuser before the neuropathy with the nightly routine of wine.. but giving it up was not too difficult. I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed. For those of you who have tried to have a sip of alcohol, what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction? Sorry Mrs D you told me to avoid alcohol and I tested the waters again. But this is really bad. I do not understand wht is happening to me. It is like having the stomach flu plus the pain shooting up my legs. But why would it happen days afterwards if that is the culprit??!!! |
Hi Cat,
I recently wrote about some triggers being difficult to identify because of a delay in causing symptoms, and others that I can get away with once, but more than that and the hammer falls. Quote:
In the case of alcohol... Quote:
I don't know that there's any way at this time to determine if one of those possibilities is going on with you, or as you mention, you have a coincidental virus, or something that hasn't been figured out/thought of—e.g. another trigger. It's been suggested when trying to identify triggers to wait a week or two between exposures to allow your system to clear. Doc |
[QUOTE=cat1234;1062955]Okay I feel like I a, doing everything right!!! Eating more, gaining weight, managing my symptoms with as few medications as possible and then BAM! I get hit with the worst day in a long time.
As previously discussed in this forum, I am seeing an eating disorder specialist. This past week she diagnosed me with anorexia. I am underweight and have been a restrictive eater for years-but I never would have guessed this diagnosis. I also consumed about 3 glasses of wine nightly. None of my doctors seemed to think this had anything to do with my condition but I quit drinking anyway to be safe. Every once in a very long while over the past two years I have a little something when out celebrating but I have lost the interest in it. I may have been an alcohol abuser before the neuropathy with the nightly routine of wine.. but giving it up was not too difficult. I was feeling good last week and my hubby convinced me to try one drink Friday. I felt great the next day and had a drink at dinner again on Tuesday with family and friends. I felt fine Wednesday. But yesterday I felt sick to my stomach, the pain in my legs was ten times worse, non-stop diarrhea and now today the pain, fatigue and nausea are so bad I am useless and in bed. For those of you who have tried to have a sip of alcohol, what happens over the next few days?? Icehouse you mentioned having a beer reverts you back weeks-can you tell me what happens? I am scared that this is it and I have put all my gains in jeopardy. The pain has never been like this nor the fatigue. I could have a stomach bug on top of it but it seems too much of a coincidence??? Will this pass if it was caused by the alcohol? And if that is indeed the cause why the delayed reaction? Sorry Mrs D you told me to avoid alcohol and I tested the waters again. But this is really bad. I do not understand wht is happening to me. It is like having the stomach flu plus the pain shooting up my legs. But why would it happen days afterwards if that is the culprit??!!![/ HiCat , I don't know if you drank wine but that put me in a downward spiral. I don't know what is in it but it leaves me in pain for a few days. Which is a shame. Not that I ever drank much but if it was anything it was a good glass of red. This may be caused by the drinking, or not. There is a norovirus that is going around that has the symptoms you refer to. I would think dealing with non-stop diarrhea would put stress on your body and cause a flare up. Not knowing if it was the drink or not, I'd think about whether it is worth this the next time your husband encourages you to go for it. I'm not blaming him, I just think they don't understand and would love to have the old us back. I'm so proud of you for working with an eating disorder specialist. It will be worth it. It may not take away the neuropathy but certainly will help you to live a healthier life. :hug: Hoping that this passes for you very soon! |
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Btw it was not wine. I had read an old post by Mrs D about the additives in wine being a problem for many and that pure alcohol seems to be less problematic or those who can tolerate alcohol. So I tried a Patron Silver with soda. Just in case that was it I am done with the alcohol for good. Just knowing I can be this sick again is enough to steer me away. And it definitely can't hurt to cut alcohol out! Thanks for the encouragement on the ED route. I cannot eat anything now without feeling sick to my stomach which is not helping. But hoping this will pass.... |
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Doc |
Height & Weight
Maybe just for a comparison, Kelly Ripa (43) is 5'3" and weighs 110 lbs
http://www.bodymeasurements.org/kelly-ripa/ http://us.cdn281.fansshare.com/photo...1000088078.jpg |
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http://www.weightwatchers.com/util/a...id=8311&sc=128 |
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As we know, anorexia can affect self-image in a similar way; anorexics see themselves as being overweight regardless of reality. Doc |
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