I know I should talk to my doctor, but I visit her so much, and I hate going to see her. but I started getting so tired about 8 year ago. and it seems to be getting worse. and my weight, is also getting worse. I just cannot control my body!! I'm SOOOO frustrated.
Fibromyalgia and CFS are VERY closely related. With a family history of Fibro, it is likely you have predisposition for fatigue. I would see your doctor and write down all your symptoms and ask for the referral to a specialist. There are Fibro/CFS specialists around, you just have to look hard to find them.
Yeah , before my mom had fibro, she had CFS. And my list of symptoms are HUGE, and I have taken them to the doctor, and I hate reading the fibro page, because it makes me mad. In a sense all the symptoms are just old age, but at a young age. my grandma, nerver got any of these until she was old and you alwasy hear "your to young to feel like that" I would like to call these close to death symptoms. It sure feels that way. And the doctors would like to call them "depression" "anxiety" ‘hypochondriac” bleh bleh. the thing is, if I had depression, I would want to die. but I don't. I would want to sleep, but I don't. but I am starting to learn to except it, to live with it as everyone wants you too. and live my life, happy doing what I want since it is probably almost over. My mother, went to so many doctors and saw so many specialists, and what did they do for her? Drugged her up and that is about it. There is nothing they can do for fibro, but they like to think they can.
Ohhh,,, I hate doctors they give up on us so easy, like when my mom was dieing and she was in so much pain she was practically crying in her sleep. And all the doctors did was give her drugs to keep her asleep, or drugs to stop the pain. Cure it, nooo, just live with the fact that we are not young and healthy like we were once. Grrr…
I hear the desperation and pain in your post. Where do you live?? There are centers called the Fibromyalgia and Fatigue Centers in several states. There are all sorts of new things being discovered about CFS, but traditional doctors don't have or don't believe the info. There is reasearch that shows hypothyrodism is prevelant in most CFS cases, as well as hormonal imbalances, and infections.
Did you ever have mono? EBV?? A serious illness??
Candida?? Do you have a white coating on your tongue?? Crave sugar??
Insomnia?? Cold intolerance, dry eyes, skin, IBS? Are you taking/have you taken birth control pills?
Are you gaining weight?? Have little appetite and eating little, yet gaining weight are classic symtoms of Hypothyroidism. Standard tests are not good at diagnosing hypo. You could test within the "normal" range and still be hypo. I have personally gained around 15 lbs since I got CFS, despite eating less.
Are you taking vitamins?? I take a multiple, b-complex, Omega 3/6/9, NADH, something called CORvalenM which is for muscle fatigue, magnesium,and other vitamins prescribed by and specially formulated for my doctor. I am tested positive for anemia.
I know what you are going through. I am only 22 and CFS has taken over my life, and if I wasn't getting treatment (which hasn't helped much yet, but it hasn't been that long) I would probably be seriously depressed.
Among other things....which were all undiagnosed by traditional doctors....
Today I had a good conversation with a friend who is wise, but doesn’t think she is. Which is the best, she is 53 and has seen alot of illnesses over the years, and she asked when I first learnt about my mothers illness, which was when I was 13 and believes that I may have post traumatic stress which would totally make sense, because after September 11th every time I saw an airplane, I would have a panic attack. And she pointed out that that would just be the tip of something that has been building for years. (I am over that now thank god) And she gave me a list of options I can do. One is going back to China, we both believe that this will be the best thing for me. As living in Canada is such a stressful life.
I can’t believe you actually want to know my symptoms.. I have so many. I can’t even remember them all, so I like to mention the ones I am feeling right at this moment.
These symptoms have been going on for at least a year. Some for many years.
Like the CFS started when I was 16 started when I was in class, always falling asleep. Then when I was working I would fall asleep in the middle of my job.
Restless leg syndrome
Weak barley pick up things.
Right at this moment, I have an outbreak of shingles. I get the chicken pox OB (shingles) every few years.
Dry skin, hair… allergies, asthma. Hypoglycaemia.
Yes in the past I think I had Mono, but every time the doctor was sure I had it and took a blood test it was always negative. EBV? Not sure, but I think that is what shingles is. A serious illness?? Not sure, don’t think so. Depends on what is classed as a serious illness. I have asthma/lung dease. Hypoglycaemia. Crave sugar. of course! Cold intolerance. Yup, more like flu intolerance. I am required to get the flu shot once a year. Are you taking/have you taken birth control pills? Yes, I have a major hormonal imbalance as in I will not get my period unless I take birth control. Which I haven’t taken in a long time.
Please continue to follow thru with your doctor. I finally had a hysterectomy 9/05, because of severe bleeding I was constantly anemic. Thought my crit should come up, but after 3 months it even dropped. I went to a Hematologist and he immeadiatly started me on InFeD. (Iron by IV). I will be having this done once a week for 20 weeks. I just had my third one, no difference yet. They say after one month I will feel different. I have suffered for YEARS with CFS. Wish I would have gone to the Hema Dr. years ago. It has been extrememly embarrassing that I have to nap so much. I have made it into a joke with people because I know they think I must be lazy. I used to be a real go getter. Please continue to fight to find out why you are having problems. You should do a CBC (Complete Blood Count) and have them to a B12 test too. If you do not absorb B12 it can lead to anemia. Prayers are with you.
BTW, "EBV" is epstein barr virus-which is believed to cause mono. I had mono nearly two years ago, and still have an active EBV virus, although I don't technically have mono anymore.
Have you been checked for all kinds of infections??? When I got tested, they took 25 vials of blood. So if they are only taking like 5, they aren't doing a thorough job.
Do you have hypothyrodism??
You said you started getting sick at 16-did you have mono or an illness right before that??
Also, please read up on CANDIDA. There is a book called "Tired....So Tired....and The yeast connnection" and "The yeast connection and the woman" and other books by the same author and there are people who tell their stories that are soooo similar to yours.
Ask for a blood test to determin if you have candida. If so, you will require antiyeast medication such as Diflucan, and I also recommend taking acidophilus. I take 4 JarroDophilus a day.
Make sure you are getting adequate protein, because it is shown that many people with CFS lack protein in their diet. Of course, vitamins are a necessity.
Also....about your hormonal imbalance...what is it exactly??Long term (or even short term) use of Birth control pills is a major cause of candida. I had t stop taking my BC pills because my hormone were all screwed up.
ALSO...have you ever taken inhaled or oral steroid of asthma?? ANOTHER major cause of candida. I have taken both. I always had a white coating on my mouth, and still do. That is candida or "mouth thrush" but a candida infection affects the whole body.
Also..have you taken a lot of antiboitics in your life?? Another cause of candida.
Are you anemic?
Are you taking supplements/medications??
I don’t’ know!! I have never been diagnosed properly in my life. I think I started getting the mono problems about when I was 16… they did blood test to see if it was mono, but the blood test was negative, but they said they still believe I had mono. and at 18 they took out my tonsils because the strep just wouldn’t’ stop. Now I still get a swollen throat but not to the point I can’t swallow. If I do have mono, isn’t there noting I can do for it.
I feel like my doctor is to busy to do this kind of testing on me. Yes I usually get 3 vials of blood when I get tested. So I don’t know… I have gone to many other doctors but nothing. I think it may have something to do with being in Canada, our doctors are just to busy.
I would like to answer the rest of your questions, but I just don’t have the energy to type right now. sorry
If you are in Canada, you're probably going to have to trave to the U.S. for treatment because it sounds like there isn't much going in your area in regards to CFS treatment. There is a Fibromyalgia and Fatigue Center in Detroit, Michigan. I don't know what part of Canada you are in though...
there is also one in Washington State.
(if you don't mind my asking)
If you do have EBV still, anti viral medication could help.
I think the Candida could also be a major culprit for you. Read that book I metioned "tired....so tired...and the yeast connection."
Also, just wondering, how old are you?? I was wondering how long your health problems have been mismanaged.
Just to put things in perspective, 95% of my problems after I got mono. It can really screw up your immune system, among other systems. No, there is no real treatment for mono but for CFS I am taking all sorts of supplements.
Do a serach engine on candida and CFS and also hypothyroidism and CFS...there is a ton of info out there.
the book "tired....so tired...and the yeast connection." is it yeast as in bread? I eat alot of bread. love it!
I am 24. It also don't help that I do not have a good doctor.. so I bounced from doctor to doctor, so they don't know about my past... and all kinds of things. I think I have to agree, this all started around the mono time, and I sure feel like it is back. and I remember how long it lasts. but I will keep up with my doctor, and hopefully we can get this all fixed up. I have had so many years of problems. I just hope that when I have children that this will not happen to them as well. I saw it with my mom and I was really thinking it wouldn't happen to me..
I bet it is going to take a long time to get this fixed, but I will try and keep you posted.