Discussions By Condition: I cannot get a diagnosis.

NO SUPPORT from Family- ALWAY FIGHTING.... What do I do?

Posted In: I cannot get a diagnosis. 3 Replies
  • Posted By: vampyre_girl
  • August 5, 2007
  • 03:59 PM


I am new to this forum. I posted about my symptoms yesterday, but they didn't show up... and I am too tired to post them all.

Needless to say they jump around all over my body. My thyroid is never normal-- at first blamed on lithium--- but when they took me off of lithium it still wasn't normal--- but how it is abnormal changes everytime. I am 34 and had a TOTAL hysterectomy in January. I sweat all the time and have a low core body temp and my moods are off the wall. I am taking meds for manic depression. They are not helping. My memory is shot. I am so dizzy that I can't drive. I haven't really been able to drive since my surgery. I am too woozy and I get anxious and confused. I have been searching for what "sounds" like me. I was diagnosed with fibromyalgia years ago, but I don't think I have this. I have swollen fingers and toes... My breasts are swollen... I have abdominal pain somewhere all the time... I am EXHAUSTED all the time...

IT goes on and on....

I used to be a teacher years ago, but I am on disability and at home w/ my mother now. It is just me and her.

She has to take me to my myriads of doctor appts. b/c I cannot drive myself-- or whatever test I am having requires sedation... like MRIs... can't handle the tube.... and CAT scans.

I used to weigh 135--- well, since all of this other weird stuff started-- I have jumped to 195. I am 5'8".

I don't like to go out and let people see me. I am very aware of how I look.

Well, anymore-- anytime my mother finds something that I have done wrong or something-- like I spilled sugar free pudding on my tepure-pedic mattress pad $$$ --- she just rips me a new one. Yesterday, I trimmed my bangs and didn't get all the hair up-- I thought I did-- and today, she ripped me a new one b/c of it. My sister is a nurse. She is 8 years younger than me and married and they have their own house etc. etc. oh yeah, she is like 105 pounds... and 5'4". My mom said to me this morning... are you going to be asleep or lock yourself in your room when your sister comes? I said "I don't know-- it depends on how I feel." (I spend a lot of time watching tv in bed)-- I am also very uncomfortable about how little and successful she is-- and I am not. I do the clothes EVERY SINGLE TIME-- I clean the best I can every day-- and it is NEVER ENOUGH. I cannot move out-- I don't have the money.

I printed out all the info about M.E. -- which is not the same as CFS-- I talked to a lady at the Rare Disease center--- and I know I have this. I told my mom--- she ripped me a new one-- she wouldn't even listen to the symptoms. The more I search to find what is wrong w/ me-- the more ticked off she gets. (I don't have a great family doc-- and am waiting to see a new one in November)

.So--- WHAT DO I DO???? I can't handle the stress of fighting all the time b/c of my condition --- and the symptoms I am trying to deal w/.

When the family does stuff like this, what do you do? How DO you handle it, when you can't move out.


It has made my depression way worse.

Advice Would BE greatly appreciated. I don't like fighting-- I just end up crying a lot and she tells me to "shut up."



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3 Replies:

  • Hi Vampyre Girl!:) I was recently dxd with CFS. I tell most people it is CFIDS as I think it is easier for them to understand and less likely to blow off. They are both correct terms. ME is used more in the UK. I can imagine why you call yourself Vampyre girl....I don't have to ask how your sleep is....I get it! Poor sleep initation, poors maintenance of sleep...vivid dreasm, etc. Yeast is a big factor in weight gain. Then, you feel tired due to CFS...can't get rid of it easiy. Cravins? Yes...I bet you have them. Do you find yourself eating alot...can't get the cravings under control? I am so sorry for what you've gone through. As far as the family. It might help to neutralize your feelings and reactions you have toward them for the time being. YHour family stress is not helping you, either. Also, while there is hope for those of us with CFS....there is no magic bullet.Some of my "colleagues" have found Bio-Set and NAET to be very helpful. I am doing a mixed integrative approach with a Dr. from the Fribromyalgia and Fatique Center of Pittsburgh, with Dr. Pierotti. He is an MD....but he also refers you out to other therapies if you prefer, like NAET, BIO-Set, Accunpuncture, etc. Currently I am taking Nystan for yeast and a sleep aid, ambien to restore my stage 4 sleep. Also, natural stuff to boost my mitochondrial function and replenish my nutritional stores. I will undergo NAET soon. If I test positive for the many viruses tested, I plan to go all natural. Sweety...I understand how difficult it can be with family. Try to act like the person you want to be. Do not say anything to them that cause them to reject you. This disease can make one very emotional. I cry almost every day. Alot of is my HPA axis and thyroid. Anyway, the calmer those are around you....the calmer you can be. Calmness and not wondering when the next attack is going to come would help. I know this is easy for me to suggest....but since you have no choice about moving....lower your expectations of them. Do not expect them to validate you in any way. Do not depend upon them emotionally. They are toxic to your well-being. This sounds like a toxic relationship.You can eventually get well and get out of this toxis situation. Talk to us....we will support you! I have realized that some people will hold hostage what you want until they get what they want.... Good Luck,Val
    Anonymous 42789 Replies
    • August 10, 2007
    • 07:27 AM
    • 0
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  • Hi Vampyre Girl!:) hi vamp from ireland ,read your letter hun,think you might have stemic lupus ,i have it ,got told last year .check it out ,good luck ,god bless
    Anonymous 42789 Replies
    • August 14, 2007
    • 06:00 PM
    • 0
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  • I have been searching thorugh so many doctors I can't remember how many. All of your symptoms...everyone you wrote down are ones I struggled with. I even had one doctor refer me to a shrink because he couldn't find anything wrong with me. After 5 years, I found a doctor who actually listened to my complaints. He tested me for a vitamin D defiency and walaw! My numbers hardly registered! Get to an endocronologist (I never can spell it right) and ask for the specific test and tell them why. Don't suffer anymore and go sit outside in the sunshine. It'll do you good and the fresh air won't hurt either. Blessings!
    Anonymous 42789 Replies
    • August 29, 2007
    • 08:52 PM
    • 0
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