First time here, I'm getting pretty desperate

noramouse, I am so sorry for what you are dealing with. The only suggestion I can give is to really look at your diet and exertion. Are you eating sugars, refined foods, etc.? Sometimes gluten can exasperate the symptoms. It is very important that you eat only good foods. Pay very close attention to how you feel after you eat, did it stay the same or get worse, you might be able to identify some foods that are harming you? It is a weird phenomenon, but the more foods I cut out, the more I can identify that are causing me grief. I think my body is becoming sensitive to different foods as time goes on. The first one that I discovered that was making me sicker was chocolate. For some reason my body started to react to chocolate as if it was toxic. I could not believe how much better I felt when I stopped eating it. From there I was able to start identifying others.

Also rest is so important. I know it feels lazy but our bodies really can't deal with exertion. I spend much more of my life sitting than I did pre-CFS. We have this thing called Post Exertion Malaise. It would help you if you researched this. Check out this website, it might help. http://solvecfs.org/

We tend to be deficient of Vit D and some of the B's, a good multivitamin might help.

If you go to the medical Dr.'s they will put you on medication. If that is the rout you want to go, hopefully it will work for you. In many cases people choose this because of the desperation but it ends up making them worse in the long run.

If you don't know much about natural healing, perhaps you might want to try a Nateropath?

It has taken me a long time but I have improved to the point where I was able to go back to work full time. I am still not well and have to watch everything, diet, exercise, stress, etc. and am still not able to do most of what I used to. For instance my husband and kids went fishing today and I had to stay home because I didn't know how I would feel or if I could keep up with them. And now, half way through the day, I am glad I stayed home. But it totally sucks not to be able to "live", so I absolutely know how you feel.

Hope this helped a little.....

@Noramouse...for MANY years my MD kept telling me that it's all about my diet-she even blamed food intolerance for my low-thyroid, Peri-menopause, headaches and tummy pain, allergies, AND heart Palps...but as years went by I became more & more ill. A cardiologist ruled out heart disease, an allergist said "No allergies", the thyroid meds did not solve the problem and neither did eating organic, gluten free, dairy free, preservatives free, & removing other various food intolerance...

So, FINALLY after listening to my sister who's been ill the same amt of years as myself and just about the same symtoms; she was diagnosed w/Lyme disease in '08', but I didn't listen to her advice all because my MD said chronic Lyme doesn't exist- oh my MD tested me for Lyme in 2010,which revealed an 'indeterminate'= UN able to determine positive OR negative...

So I switched to a Lyme literate Dr. last summer; she ran a wide range viral and bacterial panel that revealed chronic infections. Your typical MD, or family Dr. Will not run this test EVEN PER YOUR REQUEST-I know cause I've insisted ONLY to be told such horrible things such as, "You need to stop reading online", "Just because your sister has Lyme doesn't mean you do", and "here just take this sample antidepressant"!!! My MD saw in my file that I'd had past allergic reactions to antidepressants and she said, "So you won't even try it"? I said, "NOPE" not unless you can PROVE I have a serotonin deficiency!!!She wouldn't treat me for LYME infection w/out a cdc approved positive Lyme test but she'd give me a prescription for a chemical that messes w/your brain chemicals.....go figure-she'd give me big pharmaceutical drugs to mask my symptoms but wouldn't spend a single minute investigation into WHAT ails me to treat the cause!

I've been getting treatments that zap the CAUSE of CFS, which isn't CFS at all, but is M.S.I.D.'s=

Multiple Systemic Infectious Disease

Noramouse, welcome to the forum, sorry for the reason though. I have had CFS/ME for 10 years & fully understand the feelings & emotions you are going through. I went through them all too. It is important to get a dx no matter what it is you have because that is the beginning of closure for the grief process you are going through. We all have had to grieve our old lives & the things we have had to give up. Dealing with an illness takes us to a whole new place & we have to learn a whole new way of dealing. The first thing you need to do is get rid of the guilt & feelings of laziness, Sweetie, you have an illness, one you did not ask for so it is not your fault. No matter what you have, these feeling will only make you sicker. With CFS/ME it will send you into a crash that will make you sicker & more fatigued because emotional stress is just as harmful as physical stress. In everything that you do you must pace yourself, you will hear about pacing a lot from the CFS/ME community. It is the need to balance any activity with rest & not to overdo.

Sounds like you have been very proactive with trying to find out what is happening with your body but just keep at it. To find out if you have CFS/ME you will need to eliminate all other possibilities. It is sad that there is no test as yet to check for this illness, so getting rid of all other possibilities is imperative. If you are found to have EBV or HHV6 or some such virus you can still have CFS/ME because these can trigger you to have it also. I don't have a viral load so have never had to deal with it but if you do I can only speculate that you will feel better by dealing with them. This won't make your CFS/ME better, but you will feel better because anything like this can trigger a crash & so make you sicker. Deal with each thing separately & do not stress over them.

I went through an elimination diet when I was first dx'd because I couldn't afford the testing, we started me off with oatmeal & got rid of everything else. Every 2 weeks I added something for 2 weeks. This took me forever but I did feel better until I added soy. There it was, I did not have an allergy to it but a sensitivity that made me really sick. I got rid of the soy in my diet for about 3 years & every so often tested myself, after about 3 years I found I did not react to it anymore. My daughter had a full blown allergy to eggs. She was so sensitive that we had to be careful even in the grocery store to wash off the handles of the cart that we used because if someone had used it for eggs she would react terribly & could be sick for days. We couldn't even have mayonnaise in the house or anything with egg in it. After about 4 years we introduced quail eggs to her & she was all right, to make a long story short she can now eat eggs of all kinds. Make life easier as my granddaughter was tested & has allergies to wheat, milk, pork & bananas, (sigh!!!). I did gain weight at first because I live such a sedentary life now but was able to lose 35LBs with the low carb diet. I loved the food so it was not hard for me & yes, it made me feel so much better about myself. I gained about 10lbs again & was able to take it off with the diet again.

As far as the depression, I take an anti depressant because my brain does not make seretonin, my whole family is the same way but I believe if you need it, take it. It doesn't have to be long term & it can help you through a bad time. But definitely a personal choice. Well, didn't mean to write a book just wanted to say hello. Keep us posted as to how you are doing & what you are trying, I love to hear how others are coping & feeling better, it is encouraging. Many soft hugs, Denise

Not my original post but I read them any way. Thank you jewelrylady for your encouraging words to the Noramouse. Though I have in the past been diagnosed with fibromyalgia; these posts made me consider more for some of todays and this weeks symptoms. I would add myself that I have been tested and have several food sensitivities that do effect my mood and energy. It can take me days to feel better after ingesting them.

just my opinion. I wouldnt throw anything new at my doctor-I would get a new doctor one that has a history of success with this type of issue.

Post Edited (magoo2) : 6/29/2015 5:21:26 AM (GMT-6)

Illness is caused by either bacteria, virus, parasites, fungus, molds, environmental and/or heavy metals...in other words 'pathogens'-its scientifically proven

noramouse said...
Hey everyone. This is my first time reaching out to anyone about feeling crappy all the time but I'm beginning to get really desperate. I'm a 32yo female, up until a few years ago I was active and athletic, I've been to every neurologist, sleep therapist, psychologist you name it, they can't get a handle on what is wrong with me. Blood tests for MS, Lupus, diabetes etc all negative, but reading what others with CFS and/or ME are experiencing, I can most definitely relate. I'm currently trying to finish vet school and just had to postpone my enrollment for 6 months because I am not capable of focusing or even getting out of bed most days. My garden is dead and my dogs are fat from lack of exercise. I feel guilty and lazy and frustrated and could really use some advice on how to handle this, right now I just want to curl up and die. The thought of feeling like this forever looms up and I panic. I'm watching my life go by and am incapable of participating.
It has been getting worse for several years now and recently I've realized I have so few "good" days that my natural state is depressed and frustrated and sore and angry at myself and the world. My next doctor's appointment is in a few weeks but I can't seem to stress to them that I cannot lay on the couch for a month at a time waiting to see if the new drug of the month is going to magically kick in and save the day. Has anyone gotten over this? How? Any advice is greatly appreciated and feel free to ask anything at all, I'm an open book. Please throw any advice my way, I really need help.
-noramouse

noramouse, First, I want you to know, I was right where you are. It's 6 years later now. I do see the light and the end of the, tunnel. It took me all this time to figure all this out. First, you get the blood work done for, EBV. get the results. if thats not it..get the lyme disease one. But, from my own experience and a whole lot of, rude, insensitive doctors, etc. I finally found my, angel in the form of a, PA. Physicians assistant. She listened. that was number one. She did the blood work for, mono, it was positive. No cure, its a virus. There is no cure for a virus. They have antiviral meds but they don't treat mono with it. It can make it worse. Except the fact, you are going to be laid up for awhile. You are going to be so tired you can't stand it. Look up the list of thngs you can feel. most likely you will have, MOST OF THEM. First, treat the symptoms. If you are diagnosed and there is no cure you have to do something. So, have your doctor or find a doctor that will treat the symptoms. (keep in mind if it is, mono, CFS, or Fibromyalgia you can wake up one day it could all be gone. Odds are it won't, but it could) So, have them give you something for the, exhaustion aka extreme tired and sleep doesn't help. If you're having muscle pain, back pain, leg pain, etc..have them treat the pain. So, if sleep doesn't come easy for you, or doesn't come at all, ask for sleep meds. My doctor gives me, amphetamines for no energy, and pain meds for pain...we have them all three fine tuned. So, I could get about the business of trying to get well. Its not going to come easy. But, at least with the meds you have half a chance. 1st thing I did was start going to a, Chiropractor. Thats an awesome help for my back and legs. Then, no, wheat, no sugar, no dairy, nothing that could cause anymore inflamation than you already have. I take raw supplements. meaning they are real, they aren't synthetic get them at a health food store. and take it from there. stay with organic..walk if you can...get at least 20 minutes of sunlight on your body, without sunglasses, everyday if you can. Take good, B12, D3, magnesium. raw. And drink a ton of filtered water..no chemicals in your water. lots of water, push all that stuff through you. Its not easy, its not quick. But, I couldn't do any of it till I got all the symptoms under control. and pray.