Has anyone had CFS that doesnt last forever???

I'd recommend CFIDS.org ... it's THE group to listen to/watch. Become a member and you'll receive up to date information as well as be contributing to finding a cure.

I've been dealing with CFIDS for a "mere" four years. It's a tough illness, no doubt about it. I go to the Cleveland Clinic at the end of the month to see about new treatment options for me.

I've always read that if you "catch" it within a year you have a better chance at a fuller recovery so you're in a good spot! I'm so glad your doctor recognized it for what it is so you can learn the joys of "pacing" now.

Hang in there!

Turtledove,

 

You need to come over to the lupus forum for a peek.  See if you have any symptoms of lupus.  CFS and lupus mimick each other very well. Swollen neck glands, headaches, fatigue, dizziness. All symptoms of lupus.  Are you seeing a rheumatologist, or a family doctor?  If you think, once you talk with us and investigate lupus more, that you need additional help, a rheumatologist is the next best specialist for you to see.  I was 20 when I started having a lot of my symptoms.  Very much like yours actually. Is lupus on your list?

 

Feel free to poke around the lupus forum and ask any questions you like, okay. Maybe we, along with the folks here, can get you going in the right direction.

 

Ginny

perhaps your symptoms are caused by allergies to gluten, found in wheat, oats, rye and barley; or possibly your body is reacting to the antibiotics contained in dairy, meat, poultry, and seafood; or maybe your body has a toxic overload of heavy metals like mercury, which is commonly found in seafood; or perhaps you have intestinal fungus or yeast;  any of the above can distress the immune systems and cause cfs symptoms.

Turtledove,

I'm glad they've ruled out lupus. There are so many mimmiker's which is why its so hard to get a good diagnosis. I was dx'd with MS twice and now i dont have it? haha. Tons of fatigue and aches, pains, cramps....and thats mildly putting it.

In your particular case i feel that Rockboy81's advice is the best. However, I would go through the hematology becuz you do need to know if you are low on b12, if so you will also need folic acid (the two go hand in hand) , B6 is very widely used in MS and not just for MS. IT is very vital for energy and an extremely important B supplement. I wouldn't take a multivitamin, my doctors from cleveland clinic told me not to. Also they said that vitamin D can dimmensih many of the symptoms.

Find out whats going on with your throat. I do know that Cfs presents this way but so does a host of other things, i think that is why your doctor is trying to be thorough. Try to be patient. Your young, youth is on your side. A young person can recover and heal alot better than older people in most cases. This doesnt apply to lupus/ms tho. Autoimmune diseases are not better when gotten at a young age.

I think if I were you, it would be worth a visit to Cleveland Clinic for them to finally answer this for you. Many patients do not know their rights. Like myself, I thought you had to have a general pract refer you. NOT SO! I made my own appt once my psychiatrist told me your allowed (docs wont tell you as they get money from referring you). I also made an appt there for my friend who was in a car accident and broke her back in 9 places and has prognosis of upcoming lower body paralyzation (soon) and wheelchair for duration of life. I got her in with a spianl doctor that has a surgeon on call the day she sees him.

If you have any insurance at all, even medacaid, Cleveland will take you. If you have NO insurance whatsoever, you can go to their website her online and contact the dept you wish to see, they will email you back within minutes and ask you questions to better direct you (this happened with friends appt), in one day i recieved 5 emails from them, followed by a phone call. It will cost her 600 dollars but consider that this is becuz she has no insurance and this same 600 dollars thru clevelands financial assistance program will pay for any and all treatment. Even if she has major surgery? SO, is our life woth that? I say YES!!!!!!!!!!!

They have a neurological institute within that clinic as well: The Mellen Neurologial Institute, and as I'm sure Ginny knows, when you are suspected of having Ms/Lupus/other autoimmune diseases, going to doctor's to find the right diagnosis can be a long process and very frustrating. The mellen clinic rules out and in all of these disorders under ONE roof...it doesn't get much better than that!

So please honey go through with your doctor's tests, she may find its not CFS at all. If after her tests you feel that you do not have the answer to what you suffer from , pls consider making your own appt at Cleveland Clinic, i believe they even have travel arragements for people who live too far away or have lack of resources of getting there. You would have your answer in as little as 1 day and no more than 4. This way you could begin proper treatment which in every disease/disorder/syndrome, its always better when treated early.

I hope this gave you some HOPE:)

kiera

P.S. Ginny? I'm sure your very knowlegable in all of your illnesses. I'm sorry you have so many but I'm wild about your faith!!!!!!!!!!, love it!!!!!!!!!!

cleveland says that with autoimmune not to take multivitamin as it boosts immune system and therefore the body attacks back harder. However, individual supplements are fine. I dont know why there is a difference but there is.

I'm also being tested for Immune Deficiency Syndrome/Sjogrens/sle was diffential but ruled out, and now Anca , complements 3,4 (circulatory immune complex)<<I know that YOU know what I'm referring to. Praise the LORD about your miracle that disappeared that horrid symtpom!!!!!

This is probably the saddest I've read on any health board. She may come accross as very anxious and worried. She may suffer from panic attacks even, but unfortunately that doesn't rule out what her doctor suspects. We as patients tell our symptoms, They as doctor's note certain signs. Her doctor is not suffering from being a hypochondriac.

Maybe it's been a while since you were young? Anyway she's obviously scared and says so. She may be having the headaches from stress and some symptoms from that fear. It still does NOT rule out what her doctor suspects.

At any age a person needs to learn to become proactive in their healthcare. If anyone suspects they do not have the proper diagnosis, its also safe to say they cannot therefore have the proper treatment.

I dont think of anyone's problems that I read as hypochondriac. I believe the best in people and although those type exist, i don't judge. I'm not qualified to do that at all. Neither is anyone else that I've heard of, other than God of course.

 I also hope you don't think that person's with autoimmune or other chronic illness are totally worry free. Quite the contrary.

Either way this is a support/healthboard, I saw no signs of support of any kind in your post,  but I won't judge that either. Your entitled to your opinion which seems to be almost absent.

Hope you have a better Next Week:)

thanks,

kiera

p.s. to the girl who worries becuz she has many symptoms, she's young and scared as most are when they dont know what is happening in their bodies: Your doctor can walk you through this. You are not doomed hon. You will be a fantastic wife and mother. Do not let fear tell you that you have the worst. You may have a completely curable condition. IF not..maybe a treatable/controllable one.  Many prayers for you. All of the other posts were well said and very supportive. Stick with those!!!!