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Frustrated... does anyone else have this problem?!

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Old 06-22-2008, 02:54 AM   #1
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Join Date: Dec 2004
Posts: 263
kiya HB User
Frustrated... does anyone else have this problem?!

I was "diagnosed" with CFS in 2004. Main symptoms: fatigue, balance problems, pins and needles, weakness in legs and migraine.

I recently saw an ENT about some balance problems I was having. Together with the chronic fatigue I've been suffering with for years, it has been making me feel "spaced out"... at least that's how I described it to the ENT, who then suggested I had depersonalisation disorder (despite not being a qualified psychiatrist).

I am finding it increasingly difficult to explain to doctors that I'm not mentally ill. I don't feel depressed and having read up about it, I certainly don't have depersonalisation disorder. I feel extremely tired and dizzy (in that things which I know can't be moving, look like they're moving) - I dare anyone with those two symptoms not to feel "spaced out". And yet I feel like I'm having to fight against doctors who think I must be mentally ill.

My GP has referred me to a neurologist. I want the neurologist to discount every possible physical problem before diagnosing any more supposed mental health problems. But I hate going to see doctors now, so I come across as anxious (which I am at the time) and yes, consequently, possibly slightly mentally off-balance. This means I usually leave without any tests having been done - the ENT fobbed me off with "it's migraine causing the dizziness" but wrote to my GP saying that it's all in my head.

It makes me so angry! My family are cross and frustrated too, because they see me every day and tell me that I'm not depressed or mentally ill. Even one of my friends, who's a doctor himself, says I'm not mentally ill. I just don't know what to do - I really want the neurology appointment to rule in/out physical causes of my symptoms, but after my ENT appointment, I don't hold out much hope.

In the past I've gone months without seeing a doctor, putting up with my symptoms in preference to being given unneeded antidepressants or being told that if I think positively it'll all go away. This time I promised my family that I would keep going to the doctors until they found out what was really wrong, but it's so hard... I have managed to do additional A-levels, work full-time, start an MSc at uni and a new career, have a reasonably active social life and a supportive partner. My family would say that I'm balanced, grounded and enjoy life in spite of being ill. Why can't the doctors see that???? Why do they persist in suggesting I'm depressed or have a dissociative disorder? It's all so frustrating.

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Old 06-22-2008, 07:51 AM   #2
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Join Date: Aug 2007
Location: West Chester, Ohio, USA
Posts: 30
lojo222 HB User
Re: Frustrated... does anyone else have this problem?!

I went through the exact same thing. I was told I was the "poster child for anxiety" when I showed up at the ER so sick that I could barely stand and shaking with the chills. I was stunned that the ER doctor gave me pills to sedate me and they injected me with something to sedate me because my bloodwork came back normal. Chills and shaking are a symptom of Epstein Barr virus and mono, which I had and didn't know. A week later I was in an ambulance riding to the same hospital because I had collapsed at home from all of the vomiting and I was dehydrated. I had Hepatitis from the EBV and no one would have ever known because they were concentrating on the my so called "anxiety" symptoms. That same ER doctor stopped by my room and stared for a minute and then let. I think he knew he made a mistake. Yes I was anxious! I felt like I was dying and no one would listen to me! That would scare anyone. I would suggest you look for a doctor who will listen and keep looking until you find one. I told the ER doctor, SOMETHING IS WRONG! I am not anxious, I am Not depressed, run any test you need until you find it because I am afraid you won't find it until I am dead. He was the only one who listened. So, keep looking. You need an answer. You shouldn't be suffering. In my case, my doctor said there is nothing to do, just ride it out, but at least I know I have Chronic EBV and I don't have the added anxiety of wondering everyday what is wrong with me. Keep looking for a compassionate doctor who will listen. They are out there. Good luck!

Old 06-24-2008, 10:05 AM   #3
Join Date: Dec 2006
Posts: 78
newbrunswick HB User
Re: Frustrated... does anyone else have this problem?!

I'm still in limbo land too. I understand the dizzy problems you mention. I have chronic vertigo, difficulty with walking, loss of strength. I feel spaced out when the vertigo is active. They ended up giving me Beta-Histine (Cerc) and a huge improvement. Didn't get rid of the spells, just lessoned the intensity.

Of course, they kept asking if I was depressed as alot of these symptoms are related. I defy anyone who is dealing with a chronic unknown illness to not get depressed at some point in their illness.

I ended up taking anti-depressants only because I recognized that I was in fact depressed. So, now that I have that part under control, I still have my original illness that needs to be diagnosed. So, my primary recognizes that I still have an illness that needs to be diagnosed and she is working with me to find out what is wrong. And yes it can be in your head - just not in the way they speculate.

Keep plugging away - don't let those that try to flog you off - find someone who understands and wants to help.

Good luck!

Old 07-01-2008, 11:09 AM   #4
Join Date: Jul 2008
Location: W Melbourne Florida USA
Posts: 1
metanoia8 HB User
Re: Frustrated... does anyone else have this problem?!

have given my opinion on a number of skin care and beauty products as well as posting interviews with authors of best selling books on health. Now it is my time to ask for help. I donít know if you have been diagnosed with Chronic Fatigue Syndrome. I have not but I seem to have most of the symptoms and they are baffling. I am active. I just came back from the gym and I swim. I hate feeling lazy and tired. Most of the time I am high energy until this hits and then it feels as though a truck has hit me. It starts out with a mild sore throat and then the achiness and fatigue set in.
It can last a couple of days or a week. Usually it is three-four days.
It is not connected with any situation in my life. I can be happy or down or whatever. It just comes. I wonder if I have a bacterial infection that is causing this. I have had it for more than two years.
In the past two months I have had three steroid packs, and three antibiotics. The latest one is Bacterium. The reason for that is a stubborn rash that is on my upper chest and upper back. It doesnít look bad but it hurts (like a bad sun burn) and no matter what anti-bacterial ointment or steroid ointment I put on it, it hasnít gone away. Tomorrow I am doing my radio show from home because I am just too tired to drive. When I am like this I am afraid I will drive off the road. Anybody out there have any advice? I eat a very healthy diet. I am not dizzy nor do I have balance problems

Old 08-18-2008, 05:33 AM   #5
Join Date: Jun 2008
Location: Philadelphia, PA
Posts: 389
Ashley9045 HB UserAshley9045 HB User
Re: Frustrated... does anyone else have this problem?!

I feel your pain reading this!! I go through the same thing all the time. Immediately when you visit a DR. for multiple things they think you are crazy or it is all mental!! WRONG!! Doctors need to stop and listen to their patients and their symptoms instead of immediately saying it is all due to stress.

Old 08-27-2008, 11:42 AM   #6
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Location: Scottsdale, AZ, USA
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TiredOTired HB User
Re: Frustrated... does anyone else have this problem?!

Originally Posted by newbrunswick View Post
I defy anyone who is dealing with a chronic unknown illness to not get depressed at some point in their illness.
No truer words have even been written!

Old 08-28-2008, 07:37 PM   #7
Join Date: Apr 2007
Location: Lake Orion, MI USA
Posts: 1
MI_helium HB User
Talking Re: Frustrated... does anyone else have this problem?!

I think I can really help you!!! For over 5 years, I suffered from:
- Blurred Vision
- Brain fog
- Dizziness
- Excrutiating Fatigue - like I've been run over by a Mac truck fatigue
- Sinusitis - tried 7 different antibiotics last year, CAT Scan still showed fluid remained.
- Persistent colds and flus and bacterial infections. (causing extreme fatigue)
- Cognitive functioning very difficult
- Depressed from not knowing what was wrong with me and not being able to be a good mom or a good wife

After going from every kind of doctor in the book, I found Dr. Martin Lerner, an Infectious Disease MD (located in Beverly Hills, Michigan) who finally was able to diagnose me after no one else could (except for sinusitis).

Dr. Lerner specializes in chronic fatigue syndrome which he classifies as involving the herpes viruses: Epstein-Barr virus (EBV) and/or cytomegalovirus (HCMV) infection. He tested my heart with a 24-hour Holter monitor and found the relationship between my fast beating heart (supraventricular tachycardia) and my EBV levels which were 55 (normal is 1-20). He also diagnosed me with an immune deficiency by testing my Igg subclass III levels which was causing the chronic sinusitis. He prescribed 4 months of Zithromycin anti-biotics (along with many pro-biotics) which was not in line with my ENT's protocols but I have finally had some relief and hope to get even better. Dr. Lerner holds several patents after producing successful clinical trials that have been duplicated at Stanford University and was given Grand Rounds at Beaumont Hospital. I am very excited to have found this doctor and understand that many people from around the world go to see him. He tests you for many things that other doctors simply don't test for. He even has his own lab for EBV. Other doctors don't even understand EBV. He prescribed Valtrex 4 grams a day (1 gm - 4X's a day).

I still have results from a 3rd cat scan I'm expecting to determine if the fluid in my sinuses has cleared. As a last resort, he indicted I would need blood transfusion (immunoglobulin therapy?). Hopefully, this won't be necessary. I'll keep you posted.

I wish everyone the best of luck and hope you all find some relief. Please feel free to contact me if you have any questions.

Old 08-29-2008, 02:13 AM   #8
Join Date: Jun 2008
Location: Philadelphia, PA
Posts: 389
Ashley9045 HB UserAshley9045 HB User
Re: Frustrated... does anyone else have this problem?!

These symptoms I am reading only sound too common to meet. (Especially the fatigure, I also feel like I was hit by a mack truck everyday). Does anyone knows what causes the vertigo at times?

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