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Old 02-09-2006, 05:46 AM   #1
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Trying to Figure things out..need help!

Hi Everyone!

I am 25 years old Female...I have suffered from depression and panic attacks for years now. Or atleast thats what the Drs say!
In July '05 I had a Pemature baby at 5 weeks early, soon after that I got really sick with a gallbladder not functioning and "100s of stones" inside the gallbladder. So November 8th I had my gallbladder removed...Inbetween that time I lost my soon to be father in law, he died of heart failure. ANd some other stressors also. I also have TERRIBLE sinuses and allergies.

Ok so fast forward to today... I am NOT feeling well at all. Doctors blame anxiety. I do NOT feel that this is anxiety...
I have been getting very Lightheaded upon standing, feels like a head rush?? SOmetimes, not always..I feel my heart pouding..not really too fast just pounding hard. I get sick to my stomach and have to sit down. I feel short of breath...headaches...I see a lot of spots in front of my eyes, like the floater things. Sometimes it just looks like it is raining fizzies. I had these same spots when i was pregnant. THen it seemed to subside after I had my daughter and are now back. ( no i am not pregnant ) MY neck feels heavy at times, and sometimes when i look up or lean back i get that funny pressure feeling in my ears and head. ALso any activity seems to make me really tired..like i ran a marathon. My legs get weak just walking up the steps to my daughters room...they feel like jelly.
I take my blood pressure at the local stores..it is normally 110/70 my pulse ranges anywhere from 60's 100's.

I Have had EKGs , several blood work...chest xrays. I had a complete blood workup done prior to my surgery for my gallbladder. They said i was fine. I made it through the surgery without any problems.

I have been researching and i came upon CHronic Fatigue Syndrome. Does what I described sound like it COULD be CFS? or something else..I am NOT ready to die. I have my daughter and i Cant stop thinking bad things....I just want to lay in bed all day...I have a Doctors appt the 23rd of this month. I just do not wnat to hear the word anxiety/panic from him .

Please help.
Thank you for reading...

Take care

Missy

 
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Old 02-10-2006, 03:41 AM   #2
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Re: Trying to Figure things out..need help!

Missy,

I think we can probably all relate to the symptoms you describe. Interestingly, my CFS developed after gallbladder surgery. There are doctors who specialize in this illness. I wouldn't waste my time on someone who doesn't understand it (most docs do not). There are even tests now to determine if you have specific viruses related to CFS and treatments to help you feel better (but no cure yet). Once you know what you have you will be one step farther along toward healing. To ease your mind, CFS is not something you die from (you just feel like you're dying!)

What part of the country are you in? Until you find someone to see you could do research on CFS. There are many support groups and boards such as this. It is easy to despair with this illness, we've all been there, but there is hope. Wishing you all the best.

 
Old 02-24-2006, 08:49 AM   #3
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Re: Trying to Figure things out..need help!

Welcome aboard!
It sounds how my symptoms started, except for the gallbladder surgery. I ditto Perrigrine, as I got the underlying dx's and receive treatment that has given me my life back.
you're on the right track, uvm

 
Old 03-26-2006, 07:51 PM   #4
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Re: Trying to Figure things out..need help!

Hello, Can you tell me what kind of a specialist you go to for a diagnosis.......I have been achy,headaches, and soooooooooo tired ect for almost a year and it started after a spinal fusion. I have done some research and this is what I have come up with and want to see the right kind of DR.

THANKS!

 
Old 03-27-2006, 03:05 AM   #5
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Re: Trying to Figure things out..need help!

Quote:
Originally Posted by fusionqueen
Hello, Can you tell me what kind of a specialist you go to for a diagnosis.......I have been achy,headaches, and soooooooooo tired ect for almost a year and it started after a spinal fusion. I have done some research and this is what I have come up with and want to see the right kind of DR.

THANKS!

Fusion, what part of the country are you in?

 
Old 03-27-2006, 04:30 AM   #6
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Re: Trying to Figure things out..need help!

Nebraska.......Is it an internist, a Rheumatologist? This is all new to me but explains everything as they thought I ahd sjogren's last summer and I am still dealing with the fatigue and muscle just ache like I have been exercising for days and I get worse after exercise(which I do every day) and the headaches are unbearable!

Hope you have some suggestions!
THANKS!

 
Old 03-27-2006, 04:47 AM   #7
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Re: Trying to Figure things out..need help!

Fusion,

You would want to find a doctor who specializes in CFIDS. They are few and far between. Even those who claim the title usually are not. I would query any doctor who claims this by asking - how many CFIDS patients have they treated, What is their protocol, etc. Prior to this, I would do a lot of research on CFIDS so that you understand the illness and the various paths to treat (if you think this is what you have. btw: exercise intolerance is a symptom of CFIDS.)

If you are unsure as to what you have you could see a rheumatologist or infectious disease doc to rule out other illnesses through blood work, etc. This is how CFIDS is determined, i.e by ruling out everything else that looks like it. If you think it is shogrens, a Rheumatologist would be best. If you do determine that you have CFIDS, there are CFIDS/Fibro centers in different parts of the US, if you are willing to travel.

Additionally, I would also inquire about Lymes disease and/or visit the Lyme board here. I recently discovered that Lymes is underlying my CFIDS and is in a great many cases!

If you are just starting this journey, don't despair. Most of us have been down this road. These boards are a great source of information and support

all the best

Last edited by peregrine; 03-27-2006 at 04:56 AM.

 
Old 03-27-2006, 05:00 AM   #8
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Re: Trying to Figure things out..need help!

I have been the ENTIRE route and this is all that is left......I ahve been poked and prodded over and over..........I have been to a very reputable RA and even she is baffled as my tests are normal but she knows my fatiuge is real. a 4 hour nap then back to bed for 12 hours is NOT ME! The reason this struck me as CFS is that my muscles have been so "tired and achey" and I never put 2 & 2 together. I did some research on the web and even my hushband said THAT IS YOU!! The brain fog........UGH! Where do I start to look? Do I just call Internists and ask?
Where are the centers other than New York?
I truly appreciate your help and can you tell me what you are experiencing and your story??
THANK YOU!

 
Old 03-27-2006, 06:10 AM   #9
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Re: Trying to Figure things out..need help!

Fusion, you may have to do some research online for practitioners in your area. You could also go to the main CFIDS website as I believe they have a list of doctors all over the US. I wouldn't just call internists willy nilly as you will probably just end up more frustrated than ever.

As for the centers, I would ask UVM. I believe there is also one in California and maybe another part of the US as well as Conneticut. You could also do a search online for these as well.

I have had the illness for 13 years. In the beginning I was told I had Lupus, MS, neurosis, fibro, and a jillion other things. Finally was diagnosed with CFIDS and received disability for it. The first 8 years were very difficult because, as you know, every organ system of the body is affected and I was often bed bound. For the past 5 years I have had longer periods of remission, but always, eventually, relapse. I've always wondered about Lymes because I've been bitten by ticks, but the one Lyme test I had done years ago was negative. I only recently found out (through the great people on the Lyme board here) that you have to get tested at the few labs that specialize in this disease. I did so, at IgeneX in Palo Alto, Ca (had my blood sent to them from doc here in NY) and tested glaringly "Positive".

Many people now believe that most CFIDS cases are symptoms of Lyme. Lyme can look like so many other things, inclusing Lupus, MS, CFS, etc. Even if you have only had one tick bite, and it was years ago, I would strongly suggest you get tested. I was bitten my many ticks 20 years before my symptoms began to manifest! This is not atypical. For a long time I dismissed the suggestion that I could possibly have Lymes. Now that I've been reading and researching the disease I'm in a different camp about it and ... finally can get treated for the proper thing!

Hope this helps, but post again if you have other questions.

Last edited by peregrine; 03-27-2006 at 06:12 AM.

 
Old 03-27-2006, 07:39 AM   #10
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Re: Trying to Figure things out..need help!

I have been tested for Lymes last fall and it was negative. I will check those websites as I have no idea who to go to for help?

Can I ask what you take for meds/vitamin's?

 
Old 03-27-2006, 08:31 AM   #11
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Re: Trying to Figure things out..need help!

Quote:
Originally Posted by fusionqueen
I have been tested for Lymes last fall and it was negative. I will check those websites as I have no idea who to go to for help?

Can I ask what you take for meds/vitamin's?
But where were you tested? Labcorp, Quest, etc. continually churn out false negatives. This is why I suggested testing at IgeneX.

Since I have Lymes (with CFS as a symptom) I am doing a natural therapy Lyme protocol through my doctor. Prior to this knowledge, I was doing natural therapy CFS protocol through the same doctor. This included many things also used in the CFS/Fibro clinic, such as weekly kutapressin injections, immune boosters, etc.

 
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