So there is a way to get a diagnosis??
Posted , 5 users are following.
I've read a couple of discussions and noticed someone said they got a diagnosis from the doctor. I'm new to this, so I hope this doesn't sound to ignorant, but I didn't know they could officially diagnose cfs. I'm going to talk to my doctor about it. I've told many doctors how I feel and none of them has ever mentioned this condition. I've had blood work done and it all looks "normal". But, I know being tired all the time and needing 12 hours of sleep a night is not normal. I've just learned to live with it somehow. I've tried iron supplements, exercise, getting enough sleep, drinking plenty of water, taking vitamins, naps etc. and nothing has helped or changed in 30 yrs. Stress makes it worse as Im sure others will agree. Thanks for any info.
1 like, 11 replies
jessica_60434 stephanie34237
Posted
Stephanie I feel your pain, I have been to many doctors and can't really receive a straight answer. I have had several tell me that it is possible I have it,but nobody wants to officially diagnose it. The reason they don't like bringing it up is because there is no official testing they can do to prove you have it. The only way to be diagnosed is the process of eliminating all other possibilities.
stephanie34237 jessica_60434
Posted
I hope they find a cure. I was reading where there is research that shows ppl with CFS show similar cellular characteristics of animals that hibernate. This theory is this process gets triggered in us by a virus and never shuts off. Thus, our bodies are on constant "hibernate" mode. That's the way it feels too.
Beverley_01 stephanie34237
Posted
Hi Stephanie,
If you're in the UK, ask to be referred to the nearest cfs/me clinic. They seem to be able to give a definite on it. All blood tests have to be normal before you can be referred though.
Hope that helps
Beverley
stephanie34237 Beverley_01
Posted
HI Beverley,
I'm not. I'm in the U.S.
Thanks
Beverley_01 stephanie34237
Posted
Hi again there are a few people on here in the US and it seems that a visit to a rheumatologist or infectious desease is usually what triggers the diagnosis? There's a lady on here called Jackie who has more info on cfs/me in the states. If you have a look at some of the recent posts you should be able to find here details and ask her. I know there are some good doctors of whom she speaks.
Beverley
dee53012 stephanie34237
Posted
stephanie34237 dee53012
Posted
Hi,
No, I've not. How do they test for that? I don't think that's what I have though. I've read a lot about it, and I do get some reaction to gluten but not that bad.
dee53012 stephanie34237
Posted
With CD, you don't need symptoms, or you might have just one or two mild ones for many years, before all hell breaks loose. You don't want that to happen, it is for some, too late to fix it.
One out of every 120 to 140 people are beleived to have it, but because there is no pill for it, the drug reps are not pushing and teaching doctors about it. That is a lot of people! They test for RA and Lupus when they are far less common.
We have to teach the medical community until they invent a pill. I am not joking. It is a serious disease and it is on the rise. Stress brought mine on and it landing me in ICU on life support for 4 days. When it turns ugly, it is fast and painful and you are stuck not able to eat gluten and often many other things you get allergies to.
I wish for every person to be tested. Especially people with mental health issues.
Be as wellas you can 🎃
jessica_60434 stephanie34237
Posted
There is a very simple blood test any doctor can do to test for celiac. I was tested about two weeks ago and don't have it. I am still choosing the gluten free diet at this point.
stephanie34237 dee53012
Posted
I'm sorry to hear of your experience with celiac. I had a similar experience years ago when I had a very stressful job. I ended up going to the hospital several times for severe abdominal pain. They did a colonoscopy and said I had ulcerative colitis. After that, I changed my diet and did not eat wheat and related products for a year. My stomach got better, but still flares up from time to time. Whenever I feel sick again I back off the gluten products. I've never been tested for celiac, because I thought that since I can eat gluten sometimes with no reaction, then I must not have it. Anyway, getting off the gluten didn't really improve my energy. Hoping to find the answer for that.
dee53012 stephanie34237
Posted
"I changed my diet and did not eat wheat and related products for a year. My stomach got better, but still flares up from time to time. Whenever I feel sick again I back off the gluten products. I've never been tested for celiac, because I thought that since I can eat gluten sometimes with no reaction, then I must not have it."
It is so hard to explain without going into a long blog, but if you read about cross contamination (CC) and Celacs, you will see that the gf diet consists of more then just going GF. If you have CD, your occasional flares make sense if it is from cross contamination. Get the blood work for CD. The occasional flares could easly have come from the CC.
Regardless, eating whole foods, veggies, meat fruit, are all healthy choices. If you eat nuts, be sure they are labled GF or they will have CC. If it is not labled as GF, it is not likely GF (again do to CC). Don't touch it!
I strongly encourage everyone to read about CD. 1% (that is one out of every 120-130 people!) of the populations is likely to have it and not even know, because the docs do not test for this MOST COMMON autoimmune disease. Because there is no medicine but food for it so big pharm drug reps have not taught the docs about it.
Hang in there!