Hi - welcome,
Sorry you are going through this.
We did what you are doing. We had a ton of tests, thyroid, blood panels, lupus, adrenal, etc, etc and then we sat down with our doctors and that list of symptoms and said, hey, look at this...is this me? At least most of us did. I was pretty lucky. I happened to have a D.O. who knew about post viral fatigue syndrome back in the 90s and diagnosed me when I'd never heard of it. In fact I blew it off and was determined it was my thyroid and found a doc to treat me for my thyroid. When a years worth of thyroid med made no difference and that list came into my hands I got a highlighter, marked off what ended up being 3/4 of the symptoms and cried. A lot. Because, I knew I had this thing. Print out the symptom list. Mark it off. Print out the exclusions list and see what you may not have been tested for yet... and find another doctor if s/he doesn't believe in ME/CFS because if they don't they don't deserve to be practicing..... here are a couple websites. One from the UK and one from the US govt. If your doc and family doesn't believe the cdc....then I don't know what you'd say to them. Wishing you well, would like to type more but have been to the groc store today and am worn out... peace to you and your little love. http://www.meassociation.org.uk/about/the-symptoms-and-diagnosis-of-mecfs/ http://www.cdc.gov/cfs/diagnosis/

Thank you so much for your response. Feeling as if I may not be alone in the world makes such a difference.

I am so sorry that you may have ME/CFS & I am sorry you are not being heard. That seems to be our lot in life. Yes, I went through all of the testing & I should be the healthiest person on the planet but my symptoms are so much like yours that I am now on disability & can no longer work. I actually didn't think I had ME/CFS, I knew I had Fibromyalgia & I knew I had something else going on but when I was sent to a Rheumytologist who dx'd me with it I was angry. Sure, another illness not recognized by most Drs. After reading on forums I realized I did have it. Have you been to a Rheumy or an Internist? both have dx'd me. You need find one that is aware of CFS, don't be afraid to ask when you call for an appointment if they are CFS aware & if they have CFS patients. Print out all of the info about symptoms you can find & take it to your Dr & give to him/her. I have actually had one hand it back to me & then I knew they were not going to help me.

I am always happy for those who can still work, if you can please continue as long as you can. Some can work throughout their whole lives so don't be discouraged. My daughter is very ill, not with ME/CFS but with several other illnesses. She has found that even with her illness she can still be a parent to her children, maybe not the parent she wanted to be but her children are very self sufficient & are very close to her. They don't seem to be in any way limited due to having a mother who is ill. I think the best thing you can do for your daughter is not to live in a state of guilt, that is very harmful to them.

Please keep us posted on how your journey goes for you, let us help you as much as we can, even just having a listening ear & a shoulder to cry on is a huge help I have found. Take care of your self & learn to pace as much as you can. Many gentle hugs, Denise

Thank you Nina and Denise. Denise, you are absolutely right. My daughter is very close to me and loves to try to do things for me. She gives lots of hugs when she sees that I am just at my limit, she is such a very sweet girl and I always say I do not know how I could have made it through all that we have thus far in life if I did not have this child that God gave me. When I lay there trying to recooperate, she just comes in and plops herself beside me and cuddles and talks and many times just falls asleep with me. I am very fortunate.

I am getting so very thrilled inside with all of your suggestions. It touches my heart that people that I do not even know could care enough to share some wisdom and just really support. I am forever grateful to you all.

Will keep you posted!
KL

I began to feel symptoms when I was your age. Extreme fatigue out of nowhere. I had so many tests done and no one had a clue what's going on with me. I was so scared. I have never been officially diagnosed with CFS because I haven't found a doctor who would accept it.
Just wanted to tell you that there will be days when you'll feel tired and have to pace yourself, but there will also be good days when you'll feel less tired or no tired at all and you will feel complete again. There are people who understand. Take care! Hugs!

.........soft hugs, it's hard......to be both ill and to be the one fighting to get a diagnosis at the same time.......it's very hard and bewildering. i remember those early days/years.......crying in my car trying to will my legs out of the vehicle.......working, not enough energy to grocery shop and cook.......panicking over how to remain awake so i could put a meal together.......and every morning waking with such a mind numbing energy robbed day in front of me.

it took time to find out what was wrong, in my case i saw many different types of docs to rule things out.......i'm still rattled by the doc who told you that you would recup from Mono in two weeks if in fact that is what you had. I had mono back in high school and I was out for 5 or 6 weeks and still stumbled around recuperating when they sent me back to school to complete the year.

i would like to pray for you........for you to have a measure of comfort and ease as you pursue a diagnosis, for you to hang in there as a brave loving Mom to your little girl........cuddle each other, hang in there, she is very closely bonded with you and the two of you can derive much from your relationship..........

in my case it was a doctor who is both an immunologist and a rheumatologist who diagnosed me and she also discovered that i had more than CFS/ME, I had other chronic conditions as well........it was a lot to contend with, but it was a starting point.......I had answers that would lead to a journey of how to live, move forward......function better with these conditions........softest hugs........so glad you found DS.........people here are kind and understanding........take care, sparrow

Serce and ablueflower, thank you for your responses. I am currently enlisting the services of a PCP who specializes in Internal Medicine and Rheumatology. I agree that answers are absolutely the first step in the process toward better days. I have had days where I am less tired and more functional than others and I am grateful for those. I am a believer in the power of prayer and pray often...for others. I have been so discouraged and less hopeful for myself which is out of character for me especially considering that I have every reason to be faith-filled. I appreciate your prayers Serce. ablueflower, I really hope that you find a doctor who believes. With the research that is out there, it amazes me that 4 doctors into this I am still looking for answers and even further, years later, so are you. That goes to show the lack of care on part of some physicians and the lack of knowledge. I guess they can't help what they don't know.

HUGS TO YOU AWESOME FOLKS! I am truly blown away by the fact that this experience has made you all kinder and wiser instead of bitter. It speaks volumes to your strength. I admire all of you for that.

Hello KL, and welcome to this group. I too am sorry to hear you're
struggling with this and are having trouble getting good medical
treatment. My 'story' is one of having seen probably about 5
doctors over about 6 years before someone said the words:
'chronic fatigue' to me. I don't know if this is of any help, maybe
a shot in the dark, but, I googled": doctors in Missouri who treat or
diagnose autoimmune disease. A site called "Lifescript doctor review" came up. Then it asked you to type in your city. Maybe you've been to this site. Maybe you've seen some of them listed. I just thought I'd mention it, in case there may be someone on there who has some experience with this. You can always ask before you go. You could perhaps google" support groups for chronice fatigue syndrome in you state. If you can find a local group, that's one way of finding referrals.
When I first started learning about this, I got the book, "From Fatigued to Fantastic" by Jacob Teitelbaum. He has clinics which treat this illness. I'm not saying to go there. etc. But I found a lot of useful info in the book. There may be some referrals in the book.
Or if you find a clinic they could perhaps refer you. I'm sure you'll find someone. It just may take a bit of digging. I found my alternative doctor through a woman at a local health club who was in a support group I joined to 'improve one's health''. That's a bit
ironic. Little did I know what I was dealing with at the time.
People here are very supportive. It's best to find someone who has experience rather than trying to educate them. That's been my experience.
good wishes and keep us posted.

I can totally relate to your story. I have all the same symptoms. Brain fog, extreme fatigue, muscle weakness, etc. I was diagnosed in April 2014 after many tests with CFS. My Rheumatologist said - you have CFS and will always have it. You wont die from it. Here are some medicines you can try to ease your symptoms. He never once asked me how I felt. He just looked at my test results from other doctors and read the questionaire he had me fill out. He said he was one of 5 specialists in the US that treats CFS. He had terrible bedside manner and even though I feel the diagnosis is correct, this is a disease that is usually not recognized by the general public and you would expect a little compassion from your doctor who specializes in it. I am sorry your family is not being supportive. I thought about highlighting the symptoms I experience and sending a note to all my close friends and families to try to explain how it feels. they will never truly know, but it would be nice if they could understand a little. I wish you all the best. Hopefully through this support group we will be able to share our struggles and joys and begin to heal together.
Right now I am just trying to learn how to redefine my "new" life and still find joy and purpose. I wish this for everyone. Until later....

Thanks RosaQ. I will perform that search as well. Where I live is a small town but I managed to I find a Rheumatologist who is 1.5 away so I am going to give him a shot. TammyDiane :( I know it sucks majorly being surrounded by people who totally miss the bigger picture when it comes to what you feel. Thank God for DailyStrength (DS) because without it, it is as if we are fighting the same fight... but alone. Life is full of defining moments where you have to re-evaluate what lies ahead and this was one of them for you. Your doctor was awful to just lay it on you as if to say, "Here it is. Deal with it...and get over it." It was not very nice. I hate that it is the story of your diagnosis. I pray that you find your joy and purpose in the midst of this. There are better days and hope ahead, I believe this for you.

I had a 3 and a 4 year old when I started my CFS journey. Sitting and reading to them was a life-line. I kept a sign above my sink "Keep calm" because these rambunctious boys were quite a challenge. Prayers for you. Isabelle1954

Hello KL,
You are experiencing the same thing I have been experiencing. See originally I suffered a long line of thyroid issues passed by my mother, I thought the symptoms I was battling were due to tgat. Then I treatrd the different aspects for thyroid with no success, my body temp was beginning to drop more and more, undcplained weight, and little to no energy slowly killed ambition. I cried, so many times, im 30 about to be 31, I have been dealing with this since 2010, 4 years, thats when I was able to pin point when my body changed drastically. When I felt id lost control over it, well it judt so happens that it was following a time when I was very ill. I had some contracted viral bronchitis, and this form cantbe treated wuth antibiotics, it has to work its way out of your system. The stuff in my lungs was hard, sorry to be graphic but coughing to spit it out resulted in cutting up my throat,until it was bleeding. It was terrible but my biggest fear, and recent recognition is it had never fully left my body. This is what I believe you are experiencing, I had no hope left in me but was willing to try anything. Then my father fell ill this last April, he had pnemonia, a form that is treatable until he went to the hospital, where ge contracted the other form of pneumonia from the hospitals ventilating machine, my father passed away on may 20th, the hardest thing I ever dealt with. Most people with thyroid issues would beba risk, when dealing with loss, depression and stress wkll tear you apart. Altho its been devastating I realized my thyroid cant be blamef for this, signs of infection were still lingering do I looked up alternative solutions. A research study proved almost everyone with cfs had candida, and all the cases were people who had recently been ill, and.noticed a difference after they shoukd have been better. When my dad.was sick I looked for alternative ways to help him, unfirtunately I was too late in my discovery, I recently heard that the old method of healing had never let people down, the problem is too many people look to prescription drugs to savr them, but we dont think about the other problems antibotics cause. I heard about Colloidal Silver, how it saved people from pneumonia and how it has the cappabilities to relieve the body from bad infections. So I read a little more into it and discovered there are certain standards you want to follow on ehow, how to choose the right colloidal silver. It has to be about atomsized, it shoukdnt come in an amber colored glass and warn to keep it somewhere cool. Those have added chemicals, but I went to Amazon and found one seller that actually met all standards of good collidal silver, it was called "theresas colloidal silver. There are no warnings, the stuff is crazy helpful, and tastes like distilled water. You cannot taste the silver. I can te this stuff is helping immensely, my body temp used to remain 97.4 or less now its at 98.4 &higher. I can slowly feel myself regaining my bodies control back, I am not suffering as much from narcolepsy type symptoms from cfs like I was. After I sleep I can jump up, before I would drag. This Thursday I will only have been using theresas colloidal silver for a week and the progress has shed light on my otherwise buried hope. I have two kids and becausd I was sick I missed out on so much time with them, wanting to sleep, rest, do nothing, but now I feel like a different person, I wsnt to work out again, im sharing this with you because I know where u are, I was there just before id started taking this silver stuff, the first day I took it it was two regular tablespoons, I mean like the regular big spoon for cereal or something, and the next day I did.the same, prolly the third day and fourth just one spoonful, and I decided to take two yesterday just to keep it from becoming used to a certain dose and im telling you it's been working. I will now be considering a body cleanse just to try and flush out my system, and I plan to try Salma hayeks juices for a quick 3day fast of just water and juices, fasting to follow my cleanse, I have a feeling im going the right path because my energy levels are one again vital, where as before I was alaats tired, my muscles ached, I would pass out just doing my homework online. I Hope youll at least think about it, if its too expensive for theresas silver hit me up and I will help you cover costs, I just want yiu to feel better

Hi:

I was diagnosed with CFS back in 2001 because the doctor I saw knew about it. I sought another doc because he specialized in treating CFS. He even knew the symptoms, how to check for pressure points, etc. Again, that was a blessing. I was still working and being treated at the same time.

I have been dealing with other illnesses since then, but I believe God led me to Daily Strength during this time in my life when I really needed understanding, encouragement and suggestions. There is a website that lists docs that treat CFS. It can be found under:
http://www.co-cure.org/good-doc.htm

There is so much love and compassion here.
I just want to say: Welcome.
When I am up to it, I will write more.

xo
Lulu

reading these posts really hit home. I woke up one morning and thought what the heck on my legs.. i could not move them.. then i tried to sit up and my body felt like Jello.. I thought i had had a stroke..panic i tried again and again live alone oh shit ..pls GOD help me i cried out.. my neighbour heard.. she had a spare key. came in called 911.

She went to the hospital with me.. they ran countless tests MRI CAT blood screen heart. Finally neuro came in thinking i was faking it.. poked and prodded.. nothing off for spinal tap.. guess it was for real. He asked my friend countless questions travel recently no, had flu(mid April ) no etc... Spinal tap ruled out a shit load of stuff. I was thinking what next this was already 72 hours in.

Then a very wise younger intern said, what about Epstein Barre..

Weeks later, in hospital no answers completely ruled out almost everything.. neuro really stumped.. they decide to send psych in its all my head..

If i could i would have hit them collectively in head.. still no movement in my body.. I am freak..

Long short of it sent home.. with nursing care.. no answers.. 3 weeks later suddenly feel my top of my feet tell nurse who calls neuro bring me back in STAT they run a mri and compare well shit there is something there just not sure.. neuro prods i screamed louder than i have before.. my body was back but no energy..(found out then that Fibro/cFS can mask itself in some bizarre ways. So now the fight for information med drs all clam up.. what is it.. they do not understand what happened and so our collective them and me start a journey to find out 7 years later finally have neuro at John Hopkins confirm my dx(s)

You are in my thoughts and prayers. I raised a 3 and 4 year old when my CFS was at its worst. My husband was working a lot so couldn't help as much. There seems to be a lot of good info here for you. We are here to support you on your journey. Isabelle1954