Hello daisy and welcome to DS. My heart goes out to you and I wanta encourage you to meet people on this site who will support, share their own experiences, and be there for you.

I was a Site Manager/Supervisor for a Corporate Housing Property Corp. before I became ill. I also was into bodybuilding, running, politics, family-oriented, and stayed extremly busy with friends so I know what you mean - this takes your active lifestyle away and gives you one that is isolating and sometimes lonely. When you reach out to others for support they cannot exactly understand the seriousness of this illness and it hurts sometimes.

This is a good place to find friends who will understand and comfort you - plus has lots of information and / or research that helps out. Welcome again and I look forward to interacting with you and getting to know you better.

Hi Daisy,

Nice to meet you. I'm new here too. Sorry to hear about your loss. I hope you find the info and support you need. Chin up!!

Summer

Welcome to you also Summer

Thanks, you guys, and welcome Summer.

Hi Daisy,
I lost my best friend, my Dad, my sister, and my cat who had been my friend for more than twenty years, all in a period of months.
It took me a long time before I was able to deal with life again. Have you looked into grief counseling? It helped me and did not cost anything through Hope Hospice.
There are really nice people here, welcome to the site and don't be afraid to reach out when you are hurting. We know how hard it can be to deal with the pain and disability.
Good to hear you are a fighter, sometimes that's what it takes.
And hi to Summer too.

hi, daisy! i am glad that you found this group-it has been essential to my sanity since i started ahout a month ago. until then i really had no one to turn to. i am married and i have a wonderful husband and 3 kids but ted has had to live this right along side me and he knows i don't feel good and he doesn't have any idea what i should do. he is the reason that i am not crazy from this because i have come across so many people-mostly medical professionals that idon't believein cfids or they don't think i am old enough to have it.
i think one of the best tool that yo can find is info, info, info! find out all of the other disorders/diseases that look like cfids and make sure these are ruled out. you shoudl proabably see a neurologist (because cdids afffects your central nervous syster) nand an orthapedic dr to rule out any bone disorders and probably a rheumatologist. you should have allof your hormone levels checked and even if they are off by just a little bit-researchit! you need to have an mri or you brain and spinal cord to rule out other central nervous system illnesses like ms. also, you should be tested for lupus-you can have lupus up to 10 years without it actually showing up in your blood work. there are alot of diagnosises that look just like cfide, and the only way to end up at the dx of cfids id to rule out these other disorderes.
i hate to say that i hope they find something, but if it is something other than cfids they maybe able to get you back towhere you used to be.

before i got sick i was the founder of an autism awareness and support center for the area that i live in. i ran a aupport group and i wnet nto clients' houses teaching them how to used different forms of communication for a nonverbal child. i would help them establich rules and consequenced that were appororiate t the kids. i would set up sensory rooms or corners so the child would be able to learn to regulate their systems. o also stood in as an advocate for them in the school system and did workshops to help people understand autism and the related disorders. i can no longer do that. i do not have the mental capacity or the physical strength to take it on.
i am sorry to hear about your parents. i don't know how i would be able to take care of things in the shape that iam in.
read the posts, they may give you info that you wouldn't find anywhere else. also you may hear a question that you think "i should probably find that".
i hope that things go good for you and remember that we are hear to help the best we can.-gracie

Hi RichieD. I started with a grief support group two weeks ago through the hospice that helped both my mom and dad. I went the first week, but this past week I was just too tired to go to the group.

To make matters worse, I bought a new house shortly before all these symptoms started and am closing 8/29. It's exciting because I love the house, but it's stress that may be causing flares I think. Somehow I need to get from here to there . . .

Hi Gracie, I didn't know you can have lupus for 10 years without it showing up in the blood. That's good to know. My grandma had lupus, so there's the possible hereditary component for me.

I see a neuro for migraines I've been having since early 20s (I'm 43). He doesn't think my symptoms are neurological in origin and referred me to a "somatic psychologist." My neuro offered to do tests, but I said to hold off for now. I see the psychologist next week. My neuro thinks stress/emotions are causing these symptoms. I would not be surprised.

My regular doc wants me to get an MRI. For migraine I've had a gazillion over the years, my last probably 2 years ago. Do I really need to get another one? I suppose I should . . . I thought MS was confirmed with spinal fluid or something? It's possible half the stuff I'm reading is wrong.

All this info is great!

ms is another tricky little bugger to pin down and say definatively"yeah it's ms" there is reoccurring ms that doesn't leave lesions. in the earliest stages there may not be any lesions at all. they can detect it in spibal fluid-i don't know if that is definative within it's self or when it shows up in the spinal fluidi would check out.
http://www.nationalmssociety.org/index.aspx i am sending the link so maybe you can see it that ave needs to be investagated somemore. yeah, lupus can he in your system for 10 years or up to 10 years without being detected or at least that is what my dr told me.
i would definately find a dr that specializes in cfids and fibromyaligia. a neurologist or a rhematologist-in the state that i live in there is only one clinic that will dx cfids and fibro that is reputabe and he happens to be a ortho. just keep looking and you will find what is wrong. if your dr has not ruled out everything else (it's a requirement for dx by cdc standards)it is not fair for him to say "well, it's not cancer so you have cfids" that is laziness on the part of your dr. i can't remember all the test that need to be run but iam sure that there is someone on this board that can let you know all the test then take it to him and let him know you would like to be checked for all of these in oreder to feel 100% w/ the cfids.
i hope everything goes well wiht you! talk to you later-gracie

At one time I thought I might have MS, so I read stacks of things on it from the library, also my best friend had it for years.
The MRI is a great test, but if there are no lesions showing, you still could have MS. The spinal fluid analysis is the older method and I think it is more likely to catch a positive if you have the disease. My friend had many MRI's, things change quickly in MS sometimes.
Also, MS is supposedly more likely to show symptoms more on one side of the body, somebody with MS may just lose the use of one leg for a while. ME or CFS is more bilateral, it shows up equally on both sides. When my legs go bad, they both go bad equally.
If you want to be sure you don't have MS, the spinal tap is more certain for that, they say the MRI only catches 95% of the people that actually have it. That means for every 20 patients tested, it will on average miss one.
But tests only go so far, there is no substitute for a sharp doctor. If they know their stuff the good docs can analyze your symptoms and diagnose from their experience of actually dealing with patients with various diseases.
Hope this helps.

Thanks for this info, you guys.