Chronic Fatigue Syndrome Community

New to this site but can't help looking in your mirror. I came back from Iraq in 2004 and since that time my health has done nothing but go down hill. Just came back from Walter Reed and was told men don't have Fibromyalgia. I'm so tired of being tired and it seems no one is listening.

You are not alone in that each day presents nothing but major struggles just to make it through each day. I'm on 15 medications three of which are anti-depressants. To keep me awake each day I was prescribed Provical and Gabatrol to go to sleep. My CPAP machine the second one now has 2300 hrs the first one was just a touch over 10,000 hrs. I think I need a T-Shirt stating I'm damn tired of being damned tired. Hopefully you will find a doctor who can treat something beyond the symptoms. Best to you hope you find energy for real living.

Dear Movingslow, Perhaps your doctor/s should be listening just by considering the meds. they have given you.
I can say in my experiences since weaning off one of my antidepressants, dexedrine (stimulant) and my pain meds, I feel more alive and alert. Sounds like you're taking an awful lot of medication and the combinations may not be working in your favor. I see a highly respected psychiarist in our state and he has definately stated many times that taking downers to relax and sleep and uppers to stay awake can be a dangerous deterant. Does the same Dr. prescribe all of these medications and if not do the different Drs. work together. I know you do not want to believe you're over medicated as I didn't either but getting off that merry-go-round of emotions and mental/physical states has done me a great favor.
Maybe you could talk with to your pharamacist about the combination of medications and the amt. of. I truly believe you're taking way too many meds.. to control your every emotion. I wish you the very best and I know it's tough.

For 8 years I was on Duregesic Patches for Fibromyalgia and have been fighting Chronic Fatigue for years but had too many other problems. About 5 months ago I checked into the hospital and stopped the Duregesic Patches and other meds, now I take 2 meds for my thyroid and Syroquel for my Bipolar and sleep, I feel really good but still have the fatigue. If I was you, I would find another doctor and reduce some of your meds and I think you would feel better.
Have you asked yourself why you have these problems after Iraq? I'm curious coz I've had naplam sprayed on me for 17 hours, jet fuel, and aviation gas, I wonder if it has anything to do with it?

Hello everyone ,

I do not have any advice for any of you I'm afraid, just wanted to let you all know that I read all your posts and replies and that I am here. You are not alone.

All the best.

Kindest regards,

Sergio

to am new to this discussion,i am 37yrs old& also take clonazapam 3x's day along with morphine and soma for chronic pain.im also bipolar,have severe axiety issues,RLS,athritis,&type 2 diabetes which has caused me to develop neuropathy and crippIing depression am exhausted 24/7.no amount of sleep that i get helps.i could sleep all day/night.it has ruined my life,literally.my husband of 15yrs(we have 4 children)became so tired of always hearing me "ache and complain" that our marriage has ended(with no hope for repair).i never had energy to even go to the grocery store with him.He states that he has someone now who can actually get out of bed and cook,clean,go out to dinner with him etc, 3 of our children are living out on their own,yet our 12yr old daughter is in a tug--war battle.he claims im to "lazy" to even have joint custody of her.I want so badly to be able to get up in the mornings and feel refreshed.I find myself so jealious of other women that can do daily activities.I cant remember the last time i could stand long enough to cook.I cannot work so have had to move back to my parents home.I force myself to walk eveyday,in hopes of the fresh air and excersise will help however...it doesnt.I feel like im at the end of my rope,hopeless and helpless.my dr.s have no more answers or ideas for me.is there any type of cure or am i j
just domed??!










































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Hi- Have any of you ever had your serum growth Hormone (GH) level checked? Most doctors do not include GH in diagnostic blood screening because it's deficiency is thought by the medical community to be rare in adults. For several years, I have been told by doctors that my debilitating exhaustion is due to a demanding job, not enough sleep, stress, and lately being a 40 new mother. To commiserate with some of the earlier posts-I also could not keep up with housework, manage to do grocery shopping or prepare meals, and sex was out of the question because it was too painful. My work colleagues were treating me like a slacker because I could no longer meet deadlines. My doctors could not find anything to explain the fatigue and joint pain other than indicators of menopause-high serum FSH, low estrogen and estradiol. The women in my family go through menopause in their late 50's and so experiencing it in my early 40's was highly suspect-but apparently only to me. If menopause is truly this miserable then every menopausal woman would be suicidal. This past January, I reached a point that I was seriously considering quitting my job because I could not function. The anti-depressants and ADHD medications that I had been taking for several years were no longer helping to temporarily alleviate my symptoms long enough to complete my work. In addition to exhaustion, I had no muscle strength, was experiencing memory loss, and was not able to concentrate. In desperation, I made an appointment with a new endocrinologist. Long story short- she included GH in the diagnostic blood screening. My level was 4 ng/ml which falls at the low end of the 'normal' range and in most cases would not raise any red flags. However, this new doctor was able to recognize that the level was abnormally low in reference to all the other diagnostic screens. She followed up with a 3 hr glucagon stimulation test and my GH levels never exceeded 5 ng/ml. Normally, the levels should spike up to 30 or 50 ng/ml after an hour. I was diagnosed with Adult Growth Hormone Deficiency (AGHD), a type of hypopituitarism. The possible causes are a benign pituitary tumor, head trauma, or an infection such as meningitis. Amazingly enough, a female colleague of mine with the same chronic fatigue and other cognitive ability symptoms was also recently diagnosed with AGHD by an endocrinologist in the same group practice as mine. This particular group also conducts research and are likely more informed about the disorder than the standard clinical community. Take a look at www.pituitary.org for a description of all the possible symptoms of AGHD which include extreme fatigue, diabetes, hypothyroidism, joint pain, cognitive problems, painful sex, etc. It is definitely worth asking your doctor to run a general blood screen for GH if you have not tried this yet. And, then find an endocrinologist who specializes in AGHD who can interpret the results and order additional tests.

Hello nibor_b,

Welcome to the community and thank you very much for your story and comprehensive advice.


It is so nice of you to share your time and energy with us and I am sure your advice will help many women and men in this group.

Take care and keep in touch with any further updates on your situation and any other advice you might have for us.

Many thanks once again.

Kind regards,

Sergio

I can honestly say I know exactly the life you are living. Your words in your post sound like a duplicate of my own life. I just haven't lost everything yet but am well on my way. I came to this site looking for anything that might help me. I am 44 years old and have been in the bed more than not for the last 2 years. I have had CFS and Fibromyalgia for 23 years but never to this extent. I can sleep 15 or more hours and still have to be woken by someone. I could sleep day and night and have to most days. I do know there has to be some help for us. We just have to keep searching until we find a doctor who really gets it and understands that we are not lazy people. We are very sick people. I have a 9 year old daughter who needs her mother back as I am sure you understand. My marriage is suffering severely becausemy husband has to do everything. One day he seems to be understanding and other days he's just mean to me about it, telling me everything I don't do anymore. I have a type-A personality . I am not lazy. I would love to have the energy to do the things I want to do and need to do. I did have a question for you. Do you at all feel like your fatigue is worse since being on the morphine. I have been on the Fentanyl patch for 2 years and sometimes wonder if it could be causing this debilitating fatigue. If anyone else knows anything about using the Fentanyl patch and having severe fatigue please reply. I am desperate for some help. If anyone knows of an excellent doctor that they can recommend I am willing to travel. Hoping everyone who reads this has restored energy.

I just read your post tonight and was wondering if you had ever found out anything regarding the methadone causing severe fatigue. I am 44 years old and have been in the bed sleeping for most of the past 2 years. Although I have CFS and Fibromyalgia and have had for over 20 years I have never had this kind of debilitating fatigue. I was put on the Fentanyl Patch right at 2 years ago. I am now wondering if it could be causing the type of severe fatigue. You would think someone would be on their death bed to be in the bed sleeping this much but all of my labs and test have been normal except for an unexplainable low insulin level and as in the past my Epstein Barr titers are showing an active disease again. If you or anyone has any suggestions I am open to them. I have a beautiful 9 year old daughter who needs her mother back as well as a husband who needs his partner back....

men do get fibromyalgia and any one with cfs gets its at some point i was told i ben dignosed with fibromyalgia so i should know

was tested and had waking levels of one ng/ml. i took the glucose test, had a mild allergic reaction and was exhausted for hours after jthey said thatms opposite of what normally happens, no one she saw sleeps so much because of the tedtk. because i had normal levels during the glucose test, and i have no pituitary tumors or issues, my endochronologist said i was fine. I asked him how i could be fine if my normal levels were less than one ng/ml? he said that since i can produce it with the glucose test, then i can produce it and therefore, i have no isssue. i asked, if i should just be hooked up to a bag of glucose all day LOL, he just repeated that i had no problem. he is the best endochronologist in the state.so i know i have growth hormone issues, but have no way to get treated.

Hi, I just wanted you to know I am right there with you. 2 steps forward and 3 back. I've been really sick for a year and a half. My doctors are at one of the top rated hospitals in the US. I am so exhausted, like you I can't fight this anymore. I see my main doctor once a month with worsened and new symptoms. If we could only find the main problem maybe we could fix this and I could have a life again. Is that asking too much? Obviously it is because I am going down hill fast. I told my doctor if he doesn't find out soon why I'm so sick, I know for a fact that I won't be on earth for long. My daughter has autism, explain that to her. She needs me, I'm not a selfish person. Just fix me.

Hang in there don't do anything stupid. I am a mental health professional. I was diagnosed with CFIDS in 2000. I was put on a low dose of Adderral and was fine until I was diagnosed with spinal stenosis. When the pain required pain meds the combination of a spinal disorder and CFS forced me to go on SSDI. I had to increase the Adderral when the pain meds were increased. I haven't been able to work for 6 years now. I am praying for a cure or for a new med or meds to help me. I have had thoughts like you have had many times...many times. I have had nights/days where I've prayed to God to just allow me to die in my sleep. I am hanging in there although I still have resposibilities. I give myself the right and time to cry...crying makes you feel better. Or I talk to family or friends. Make sure to get the emotional pain your going through out somehow. Lean on a friend(s), family, journal your feelings, give yourself time to cry alone in private. It is okay to cry. But please hang in there! If I have to you have to! I don't know you but I care about you as a person. I will pray for you. My name is Steve from NE PA. You can email me at driftwoodms14@yahoo.com . The email name is a product of my love of The Moody Blues. They have a song called Driftwood. I also hope and pray you are okay with this horrible storm. Bye for now.
Keep The Faith!!!
Sincerely,
Steve

HI CHRISIEX,
YOU ARE GOING THROUGH A HELLISH TIME, AS AM I, BUT YOU WILL GET THROUGH IT AS I WILL. I AM A MENTAL HEALTH PROFESSIONAL BATTLING PAIN AND UTTER EXHAUSTION.
I AM CURIOUS AS TO WHAT CONDITION CAME FIRST? CLONAPIN IS A GOOD MED FOR WHAT YOUR GOING THROUGH. THE SOMA AND MORPHINE OFF COURSE HAS SEDATIVE EFFECTS. WERE YOU DIAGNOSED WITH CFS OR FIBRO? RLS IS DEVASTATING BUT SHOULD NOT CAUSE THE FATIGUE YOU DESCRIBE. AND WHAT FORM OF BI-POLAR ARE YOU? THERE ARE DIFFERENT TYPES. I WOULD GUESS YOU WERE BORN WITH BORN WITH ANXIETY...A HYPOTHESIS... HAVE YOU TRIED THE MEDICATION PROVIGAL...? PERHAPS UNDER THE SUPERVISION OF YOUR PRESCRIBING PHYSICIANS TO TRY A LOW DOSE OF AN AMPHETEMINE...IF..ALL OTHER MEDS HAVE NOT HELPED YOUR DEBILITATING EXHAUSTION. I WILL PRAY FOR YOU.
SINCERELY,
STEVE:)