my doctor says it's CFS, but i doubt it - HELP?

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Regular Member

Date Joined May 2007
Total Posts : 80
   Posted 5/1/2007 12:06 PM (GMT -6)   
hello, firstly, i'm sorry if this is in the wrong section, i'm pretty new at all this forum stuff, so i just kind of clicked and hoped for the best, but i would really REALLY appreciate some help. My doctor has just suggested CFS, but i am strongly doubting his diagnosis.
I am 19, male, Around a year ago i started getting mild nausea and VERY excessive sweating, which was strange coz although tall i have always been very thin so never really had a problem with sweating. I started loosing weight and getting a lot of depression but didn't see a GP at this stage because i knew that because it was exam time, even if i went in with my leg hanging off he would just say "oh it's stress related" coz as i'm sure we all know, doctors are fun like that.
So exams were over and i did better then expected but couldn't enjoy the success because the nausea and depression were getting worse and worse, but even still i thought "chin up" and just tried to get on with things. Eventually at the end of the summer i got a mild antibiotic for acne, but after 1 days dose i had a really bad reaction and couldn't eat for 2 days. Since then i have had constant nausea, so heavy that it's actually quite disabling, i had to pull out of college and can rarely leave the house without having to take a bag around with me incase things get too bad. It really has put my life on hold completely.
I had a camera put down, ultra sound, blood tested for diabetes, thyroid disorders, wheat itolerance and (i think) anemia, but the only thing that came back positive was the camera, saying i had slight inflamation of the stomach lining which really shouldn't be causing all this trouble. 
So then the doctor pulled out what seems to be their FAVOURIT diagnosis, "anxiety", to which i had to argue and argue through maybe 3 months consultation for them to belive i wasn't in any stress other then the illness itself.
My main problem is the nausea, but other symptoms include pain in the left arm, ocasional achey shoulders, weight loss, spotty neck, depression, irretability, and mild fatigue - and today my doctor said "looks like fatigue syndrome, not a lot we can do about that" but i'm not really suffering from the fatigue, it really is very mild, just the nausea is getting me down, so surely i don't have CFS? it just feels like they have given up on me a bit.
what i'm wondering is, if anyone out there thinks that there is a chance i have CFS? I really don't see how i could have to be honest, any advice? 

Veteran Member

Date Joined Jul 2005
Total Posts : 5403
   Posted 5/1/2007 12:38 PM (GMT -6)   
Hi boxcastle and welcome. I'm sorry about all of your health problems and that no one can seem to figure them out. FIrst of all, I'm not a medical professional, but from my own experience and everything I've read, I would have to agree with you that your symptoms are not classic for CFS. Usually overwhelming and debilitating fatigue is the worst and most persistant symptom for people with CFS.

I really get frustrated when docs who can't figure out what is wrong try to pass it all off as stress, depression, or anxiety. It sounds like the doc is also using the diagnosis of CFS as a cop-out too.  It's a very real disease, but doesn't seem fit too well with your symptoms He needs to be honest and say he doesn't know what is wrong but that he will keep looking and try to treat your symptoms.

Have they given you anything to help the nausea or the inflammation?

You might want to go to the IBD or crohns forum here and present your symptoms to them and see what they think - they may have a better idea of what may be causing the nausea and inflammation.

I wish I could be of more help. I di think you should trust your instincts - you kow your body better than anyone. Let me know if you have any other questions.

Take care and I hope you get some answers soon.

Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Amitriptyline 10mg; Neurontin 300mg; Prevacid; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Restasis eye drops



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Post Edited (hippimom2) : 5/2/2007 5:02:43 PM (GMT-6)

Regular Member

Date Joined Sep 2006
Total Posts : 265
   Posted 5/2/2007 3:33 PM (GMT -6)   
Hey Box,
I'm not a doctor, but I am having alot of issues going on myself. I have alot of symptoms, but the symptom that caused me to look for help was diarreah. They did a colonscopy and found ulcer and said I have a mild form of IBD. Only problem is that the diarreah gave way a long time ago, but all the other symptoms - fatigue, insomnia, skin changes, menstrual changes, GERD, muscle weakness and loads of others are all giving me alot of problems. I've been sent to see different specialists and I am waiting to see another one at the moment. I know think I have something hormonal going on.

My point is that since I was diagnosed with the IBD a year ago, things have happend. My thyroid had gone hypo, I have high blood pressure and my blood tests are showing other problems. I would keep on searching for answers if I were you. CFS is real, no doubt about it, I just think some doctors are to quick to assume and leave you on your own to find your own diagnose.

Ok.. now your symptoms are very general and most anything can be causing them. The inflammation in the stomach is common with alot of illnesses. Our stomachs react quite quickly to any changes in our bodies. The good thing is that you have had an endoscopy that rules out serious stuff and you can relax as far as your stomach goes.

Your main problem is the nausea and that is probably not caused by your stomach at all, even tho it could be. The other symptoms - pain in the left arm, ocasional achey shoulders, weight loss, spotty neck (do you mean pigmentation?), depression, irretability, and mild fatigue - All tell me that you could be looking at adrenal problems. Espescially if the spots you mentioned are pigmented ones - either dark or light. It could also be something as simple as your thyroid. Even tho you had that checked out - Thyroid symptoms can show up long before your blood tests hit outsid the normal range. Try to search addisons, adrenal fatigue, hyperthyroidism. See if you can relate to any of that.

If I were you I would listen to my body, and try to use the internet to read up on any clues you might have. After all, only you know how you feel. And you should have your doctor give you something for the nausea. No need for you to be sick all the time!! They have meds that take the nausea away. And after you get your hands on those meds and start feeling a bit better, I would start looking for a new GP.

I hope you find your answers real soon, and that I have been lucky enough to have helped you some.
Colonscopy July 06 - showed ulcers.
Diagnose either UC or Crohn's!
Whatever it is, I was told its mild...
Medication Asacol 2x2 
Loads of pain going on in my back and URQ.
Hypothyriodism going on, but with no known cause.

New Member

Date Joined May 2007
Total Posts : 6
   Posted 5/9/2007 1:16 PM (GMT -6)   
Might you be able to see a different doctor?

New Member

Date Joined May 2008
Total Posts : 9
   Posted 5/25/2008 9:37 PM (GMT -6)   
My 13 year old goes through ths throwing up for a month at a time . He has problems with his left leg, Tingling wa;lking problems. Has been homebound since FEB. 1 08 When test are done They come up with nothing. His Neurologist did a test on Friday called MYCOPLASMA Blood test. It is a Bacterial infection. They say CSF and everything but if you look this up maybe you might see something like what is going on. They also talked Pseudo Tumor. Things they are talking about I now found out have one thing in common. MYCOPLASMA. Hope maybe this can help you. Everything is worth a shot if it has not been tried. There is only one set of bloodtest for mycoplasma. Also only certain antibiotics help.
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