What are your main symptoms?

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Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 10/28/2015 10:32 AM (GMT -6)   
Hi everyone. I have been on several of the other sections due to health problems for both myself and my teenage daughter. Lately, over the past year, I have seen a number of symptoms that arise over and over again together and it finally hit me that she might have chronic fatigue. She has other things that make things complicated to figure out, but I think she fits the criteria for CFS. Some of her strongest symptoms are chronic very sore throat, and when that happens these things come up too. Very upset stomach, bad headache, intestinal issues, malaise and very tired and, and body and joint aches. It is so hard to get her to school. She wants to go so much, but she feels awful.

Oh and she has not had mono. Been tested a few times already.

What are your main symptoms and does this sound like CFS? We have another appointment next week and I will be asking about CFS. Thank you so much.

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 10/31/2015 7:28 AM (GMT -6)   
Sorry no one answered your post. It is probably because they have discussed this before. You can do a search and find some old posts if you wish.

If I am in a flare I have so many symptoms it is hard to remember them all. I did a search one time and found I had many more symptoms than I was aware of, just didn't know they were all related to the same thing. Also I may have symptom A with this, but symptom B with that.

My main ones are debilitating flu-like symptoms such as sore throat and eyes, headache, overall body ache and stiffness, feeling really sick but never throwing up, extreme fatigue, having to go to bed because I am so sick. I have a sore neck most of the time. I can have pain in my chest, charlie horses and my memory sucks. At times it has been so bad I was not safe driving. I get post exertional malaise that can put me into a flare for several days.

However, I have found that diet helps a lot. I have figured out key foods that trigger flares and have talked with others with CFS and we seem to have the same triggers. I can share them with you if you wish. I am not 100%, but neither is my diet, I know if I quit cheating I could be much better, and that is my goal. BUT, I am soooo much better than I was a year ago. It is amazing how a few changes can make so much difference.

I have a question for you. Did your daughter get braces a year ago? I do know some people that were very sick as you described your daughter while they had braces. When they got them off and that metal was taken out of their mouths, they got better.

Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 11/1/2015 11:14 AM (GMT -6)   
I so appreciate you responding to my post! I check all of the time because I need help helping my daughter. So many doctors over the past two years. I find that if I drive the process, instead of the doctors, things get figured out faster. We have several of her conditions and diseases diagnosed and are treating her the best we can for those. But I can see a clear pattern, in the midst of the other issues and symptoms that she has, with the symptoms I listed above. She had more bloodwork done on Friday and I asked that she be tested for Celiacs. She does not have braces. about a year and a half ago she got very very sick with a virus, and all kinds of health problems have come up since then.

I would love if you could tell me about your food triggers. Anything that might help.

Another question for you. Do you ever have days where you feel fine? She has a handful of days here and there where she is pretty much symptom free. Then she doesn't feel well for a week or so. It's up and down, up and down. She also has RND and that makes things complicated and she is always fighting that off on top of it. She dances and I think I see a pattern of after she dances on Mondays she does not feel well for a few days. She tries to go on Wednesday and then often just can not go to her Thursday class. She does not seem to have brain fog at all. How did yours start? Did you have a particular trigger such as mono?

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 11/1/2015 5:52 PM (GMT -6)   
Ashaline, glad I could help.

Mine started similar to your daughters. I got the West Nile and just felt like I had a hard time recovering from it. I was having what I thought was relapses. At first they were 3 or 4 months apart, I would get real sick and it would take a few days to recover. The episodes kept getting closer together and longer until I was like your daughter, feeling well for a day or two then sick for a couple weeks. At this point I started on Noni juice and liquid Ion. This helped pull me out of it for a couple years. I still had Post Exhertional Malaise (this is the deciding factor if you have ME/CFS) but I didn't know that what what it was or that that was what was making me sick.

I went off the Noni and Ion after a couple years because it was upsetting my bowels, that is when I started slipping.Eventually I went down and it took me months to get control of it. I studied and figured out what I was dealing with.

What I learned is this: First off, if your daughter has ME/CFS she may need to quit dancing. Post Exhertional Malaise, from what I understand, can keep getting worse and worse until it becomes almost, if not absolutely, impossible to recover from. For this reason, we have to limit ourselves to keep from setting that off. Please do some research on this. This is probably why your daughter is sick a day or two after dancing. As of today, I do ok most days, never feel the way I used to before I got sick, but definitely better than I did before I changed my diet. I work full time but by the weekends, I spend a lot of time on the couch.

As for diet, I have cut out most sugar, chocolate, soy, wheat, most grains, processed foods, potatoes, other tubers, most squash, anything with coloring or chemicals.

What I do eat is most fruits and vegetables and meat. .

A typical days food looks like this:
Morning: Sliced apple and peanut butter. A few Cinnamon almonds
Or fruit smoothie with nut butter in it.
Or banana and almonds

Lunch: Cesar chicken salad or other green salad with chicken or leftovers from the night before.

Dinner: Stir fry veggies with different sauces, chicken or fish usually.
Or vegetables cooked another way, steamed and some protein to go with it.

I have started adding some legumes back and do have a little rice occasionally. For instance tonight I made lentils with vegetables and chicken. I don't eat raw cabbage any more, have to cook it or it tears up my stomach. I do have a little coffee but that is on my list to get rid of next. I can eat corn and pop corn is my go-to snack. If I go to a restaurant I have to be very careful, some of the "spices" they use have chemicals in them and can really make me sick. Once I get sick from food, it can take a day or two to get over it.

If I eat certain things like chocolate or potato chips, I get sick within a few hours or the next day. Some foods though - especially if I just eat a little every day, like wheat, will take several days before it catches up with me. Those are the hard ones to pin point because they don't affect me right away so I keep nibbling at them thinking it is ok. I can eat caramel and a little sugar so I have been doing that, but I am not feeling as good as I could so I am going to get more serious about cutting out those things and coffee. I also have some cheese and yogurt, but not that much and they need to go too - do not drink milk at all.

I can do a lot better and really want to get to the next level. I am also going to try the Noni again.

I hope this helps you. Keep in mind that every one is different. Although I just met up with an old friend the other day that has been suffering from this same illness and as we were talking we found that we had the same triggers, so it does make me wonder if maybe there aren't more similarities than we realize.

Ashaline
Regular Member


Date Joined Oct 2014
Total Posts : 82
   Posted 11/2/2015 7:30 AM (GMT -6)   
So very helpful JKN!

As I read and try to understand more things, here is something I can't seem to make sense of. What is the difference between mono and epstein barr? And do all people with CF have EB?

Do you also have celiac's disease or ever been tested for that? Will will know the results if that in a few days. I also am considering a stomach ulcer, cyclic vomiting syndrome (associated with migraine headaches) and GERD. She could have these things that is combined with RND which causes pain and fatigue. She also has cutaneous lupus, but I wonder if it is now systemic as well, but isn't showing up in labwork yet. I mention these to the doctors and they seem to wonder as well. I am always surprised that the doctors don't seem to come up with ideas on their own! I need to get in with her rheumatologist again, he is very good but we don't see him very often. I thought maybe he could help with the possible idea of CFS. And I think we need to see a GI to rule things out there. It is very complicated all of these conditions! If you have any more light to share on anything I have said it would be greatly appreciated. You really seem to know a lot of information.

jkn913
Regular Member


Date Joined Nov 2013
Total Posts : 167
   Posted 11/3/2015 9:38 PM (GMT -6)   
Ebstein Bar is a virus from the herpes family. When someone contracts it, it can go unnoticed. If someone developed symptoms of sore throat, fatigue, fever, lack of appetite, weakness, etc., then it is said that the EB virus caused mono.

Most children that contact EBV don't get any symptoms, therefor they only got the EBV. Teenagers however, get pretty sick, therefor the EBV created mono in them. Most people (95%), by the time they are 35-45 have the EBV, not all got sick or even know they have the EBV, therefor, they never had mono. Since the numbers are so high for those who contract EBV, it makes sense that it shows up in CFS victims.

I did have mono when I was a teenager.

I do not have celiac, but I do have a sensitivity to gluten. If you research gluten and CFS you will find some interesting information. Anyway, I had been watching my diet pretty well. One night I had a terrible nights sleep with restless leg and I can't remember what all. The next morning I was really stiff and sore. Every muscle in my body hurt and I felt sick. Like I said, I had been good on my diet and hadn't eaten any of the known triggers, but I did have a scone before bed. I started researching gluten and that is when I quit eating it.

I know they don't know what causes this. I have my own theory. I do believe it is a virus that causes this, or other diseases, and that most, if not all, auto immune diseases have certain things in common. I do believe that diet will help everyone. There may be slight differences in what triggers one person or another, but everyone will benefit from really focusing on it and finding their triggers. I don't think diet will cure it because it is a virus, but I do believe it will help enough to gain part of our life back.

Diet, stress, sleep and exertion are the main triggers. Your daughter will need to find her balance with all of these.

One last thing. I got a 2 inch memory foam topper for my mattress and that helps so much. I am not near as sore in the mornings as I was when I was before I had it.

tangodancer101
Regular Member


Date Joined Nov 2014
Total Posts : 326
   Posted 11/9/2015 8:48 AM (GMT -6)   
Ash,
Hi, I'm visiting here from the fibromyalgia forum and your post caught my eye. Have you come across fibromyalgia as a possibility? I had all those symptoms you describe your daughter having early on. Fibro is often triggered by a severe event, stress, illness, or infection are common culprits.

I also feel for your daughter in regards to her dancing! I'm a dance teacher. I hope she can continue. Maybe cut down her dancing a little? Or talk to her teacher. I know that can be tough because other kids may not understand, but it's worth a try.

I had a lovely class last year, one girl had juvenile arthritis and often came in looking exhausted. It was a later class and several of the other girls were tired after being in two or three classes before mine. I eventually changed my warm up to a slow yoga fluid stretch. They not only loved it, but the breath work, hip openers, improvisation and gentle floor work gave them a second wind.

T
Fibromyalgia, Depression, Anxiety, PTSD
Gabapentin 1200mg, Cymbalta 10mg
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