Has anyone had CFS that doesnt last forever???

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turtledove
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 12/10/2007 3:02 PM (GMT -7)   
I remember the day I got sick. It just hit me hard. I had no energy, very bad headache, dizziness, swollen jaw glands. I didnt know what was wrong with me?! I thought I had everything under the book. I have been to doctor after doctor and they find nothing wrong with me. I have been researching online and I have every single symptom of cfs. I know that it can be alot of things so I have to add that I have been tested for all of them.
  I even thought I had HIV, I thought I was the one person in the world who has contracted HIV from nothing. I was very sick for about 2 months and the symptoms have gone down a little. I can function more but I still have horrible headaches and swollen glands. I told my doc about possible CFS and she thinks that is what I have. I have another appointment in 1 week.
  I'm scarred, I'm only 21 and I'm gonna have to live with with this for the rest of my life. I have a boyfriend who I'm planning to spend the rest of my life with and I'm scarred that I'm gonna be this horrible sick wife and mother someday. I'm a very scarred person. At first I thought heck, it says everywhere that it last for about 6 months, then I read peoples stories on how they have had it for 20 years, I mean 20 years what the heck!!!! I cant live like this for that long. I'm gonna visit a homeopath doc. and gonna get accupuncture. I want help. My doc thinks it has something to do with yeast syndrome. Once we have looked back on my health history alot of yeast related illness I have had. Am I gonna have this for the rest of my life??? Please give me more info on this horrible illness??

4sons
Regular Member


Date Joined Dec 2006
Total Posts : 406
   Posted 12/11/2007 3:51 PM (GMT -7)   
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!
Cheers -

Ruth/4sons

age 52/Type 2 diabetic/"controlled" by diet and exercise


turtledove
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 12/11/2007 6:35 PM (GMT -7)   
So if I get treatment now I might not have this forever? OR ever years??? I'm so scared. I have one other question?
Is it gonna get worst? I feel fatigue but the worst happened 3 months ago. I feel like im getting better. Somedays I feel more fatigue and headaches than others but I havent gotten worst. IS THAT A GOOD THING???

Also is yeast related to this???

Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 12/12/2007 8:52 PM (GMT -7)   
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
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

33 years old. Diagnosed with lupus in 2000. Fibromyalgia, anti-phospholipid syndrome(APS)(stroke),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, neutropenia, thrombocytopenia. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, monopril, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


turtledove
New Member


Date Joined Nov 2007
Total Posts : 9
   Posted 12/13/2007 1:11 PM (GMT -7)   
I got tested for lupus. and I don't have that. my doc wants me to see a hemoatologist. I just want to figure out what's wrong with me already!

courage
New Member


Date Joined Dec 2007
Total Posts : 1
   Posted 12/14/2007 12:04 AM (GMT -7)   
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.

RockBoy81
New Member


Date Joined Nov 2007
Total Posts : 3
   Posted 12/17/2007 5:59 PM (GMT -7)   
Hi Turtledove

I would like to respond to your question with; no it does not last forever.

I have suffered from CFS for 4 months, compared to having the flu and more common illness we a subjected throughout our lives it can feel like it's been years. The worst part about the illness and any other illness you may have twinned with CFS is getting those distinct diagnoses and finding the doctors who have the knowledge and ability to direct you to the relevent specialists.

My aunt, who has been suffering for 2 years now with CFS and other mysterious illness' (very similar to what you decribe to be suffering from) has been passed around from doctor to doctor, blood test after blood test and MRI scans with nothing sinister or significant showing up. Only that she may be experiencing (I THINK this is what she was told (it's certainly affected my memory)) a magnesium deficiency that was somehow effecting her equilibrium, resulting in poor balance and constant dizziness. She had been left in th dark, ill for all this time without ANY idea with what she had until I mentioned to her that she is suffering the same symptoms (but more severe) than me and she should ask another doctors opinion. My aunt has finally been given the correct advice on how to adjust her life and the best ways to deal with her conditions.

Statistically in my country (the UK) CFS affects 1 in 1000, twice as many women than men, and the most common causes are after an infection/post viral (thats what triggered mine, after a dirty mosquito bite) or huge stresses in ones life. Average recovery is 1 to 2 years. But these are the statistics of the more severe suffers who have ONLY CFS. In the last few months I have found out that 4 people out of my close freinds and famly who have suffered from it, recovered within 2 - 6 months. It's more common than people give it credit for. Yes there are long term sufferers and the most frustrating thing is not being able to gauge your recovery from day to day.

I, thankfully have found significant increases in my energy levels and strength and have only just started to go back to work... but only half days for now. I would put my (not entire) recovery down to being given the correct advice from my doctors, support and understanding from my family and vitamin supplements full of iron and vitamin b6/b12 1000% RDA (Mens Supplement tablets - sold at Asda) and setting daily tasks, such as cooking dinner, or small chores around the house, none of which I could do for weeks to start with. Finding your physical and mental capacity and just trying to extend it that little bit day by day. And I mean a little.

Don't ever think that the life you lead before this is over. Far from it. This is just a hinderance you have to bear, just like many of lifes other problems and inconveniences. Being ill over these months has given me some positive outcomes. I thought of the worst, thought it was going to last forever, just like my father did after his accident, but it has given me the oppertunity to develop other skills at home. I am a master baker now, can cook a darn good set of muffins and have been learning German. Gradually.

I hope my advice offers you some comfort and I wish you a speedy recovery.

Regards

RockBoy

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/3/2008 4:43 AM (GMT -7)   
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!!!!!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/3/2008 4:49:01 AM (GMT-7)


hammilton
Regular Member


Date Joined Feb 2006
Total Posts : 152
   Posted 1/5/2008 7:16 PM (GMT -7)   
Worrying about all these illnesses doesn't sound like CFS to me. The way you describe it sounds much more like hypochondriasis than anything.

Kiera
Regular Member


Date Joined Dec 2007
Total Posts : 364
   Posted 1/10/2008 6:00 PM (GMT -7)   
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!!!!


Every day brings us closer to what we reach for .........in all things.
 
Kiera

Post Edited (Kiera) : 1/10/2008 6:23:13 PM (GMT-7)


sjkly
Veteran Member


Date Joined Dec 2007
Total Posts : 2113
   Posted 1/12/2008 5:23 PM (GMT -7)   
Hey an ER doctor told me I was depressed or suffering from hypochodria one month before my left knee swlled up to the size of a softball ( I had been sick for eight months and all the blood tests were normal until that day) then all of sudden I was't crazy I was sick. (RA)
Dont let any one tell you that your crazy just because it takes a while for the test results to confirm that something is not right. With autoimmune disorders sometimes the tests never do show positive.

This is probably a dumb question but did they test you for mono?
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