Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments

Jennifer Brea is amazing!

I have been struggling with this disease for so long. (Just trying to find some info on these pages has made me feel exhausted.) I have tried to find support groups in the city where I live but found none. I would appreciate it so much if someone with Chronic Fatigue Syndrome would write and tell me how they cope with it. I am sick for about 6-7-8 months every single year. I am doing better for a couple of months and then I get really sick again (the worst is the total lack of energy and the terrible feeling of being unable to do things that were so normal for me before. And I am talking of very basic things.) When I get so sick I also get terrible depression. Right now I don't know which of the two is worst. I only know that I am not well at all and that I feel miserable. It is so sad when I hear my doctor say with a kind of arrogant smile: "You know there are many doctors who do not believe in CFS ...". I know she is one of them. I feel it is offensive. I now go to her only when I need to check my thyroid (Hashimoto) which seems to go up and down (despite the fact that I take Levothyroxine), or if something else is wrong, otherwise I try avoiding seeing her. I have not found a doctor who is knowledgeable about CFS.

Hello everyone. I am not clever with computers at all. I don't know how to edit my comment. I found no place where it says "edit" but what I would have wanted to add is that I am new. I only joined today and this was my very first comment.

I agree with you one hundred percent, @petuniamom 567. I wish there were a connect group that deals just with CFS/ME so it would be easy to find the discussions/posts right away. I am new at Connect. Maybe it is because I have such a hard time concentrating, but I find it extremely difficult to even navigate through all of this, and it is taking a great amount of energy (the thing I have least of). I have only just begun, and I don't really want to give up right away. I get notifications for a lot of other groups, but not for CFS/ME. (I found one comment on my post by sheer coincidence after using a lot of time trying to figuring out.)

One of the most debilitating symptoms of ME/CFS is "Post Exertion Malaise", which is severe pain and fatigue after exertion as in exercise. Recently, I read that research indicates that patients with ME/CFS have low blood volume, which results in too little blood reaching the brain and is probably a cause for PEM. Low blood volume can also cause ischemic events in the brain. There is a medical test called a Daxor test that evaluates blood volume. this test created by the Daxor Corporation is available at certain hospital. It is referred to as BVA test.
Has anyone had this test and have the resulting information been helpful? There seems to be treatment for it.

I won't say getting diagnosed was fast, but it was made easy because my first CFS event was when I suddenly could feel my energy draining out of me & I literally fell to the living room floor & could not move for 2 days. This was before cell phones & I live alone. All I could do was lay there & cry. No one came by the check on me because I was super healthy & competed in field events, so I worked out twice a day for 2 hrs each every day. Not counting biking & walking miles a day. But that day my life suddenly changed. Sleep vanished, everything hurt, allyodinia showed up, but never in my life have I ever felt & been so helpless. When I was finally able to crawl to the bathroom, I drank from the tub faucet. Couldn't stand to reach the sink. I cleaned up, which made me weaker, crawl dragged to my bed & that's where I stayed for days. I learned to give a friend a key in case it happens again. He brought me a camelpak of ice & water & put fruit close by. Yrs later he still checks on me because I have what I call coma deep sleeps. Unpredictable. He said he shook me hard, yelled my name & I kept sleeping. I woke up a day later. Had to ask him what day it was. Drs don't have any idea why it happens. But trying to explain to my friend what CFS is like for me is impossible. Til he found me on the floor about a month later. He had to pick me up and put me in bed. I could barely lift my head. I have multiple auto immune issues. I had a triple bypass 10 yrs ago, but I went in with 2 lungs, came out struggling to breathe. COPD from the bypass I was told. I can't remember what it was like to do 30 mins of 410 lb leg presses. How quickly aide can be changed. Now I'm proud & happy to be able to walk half the apt parking lot. I've learned to be thankful for every small thing I can do each day & a friend that calls me every day. If I don't answer, he shows up. At least he has seen in action when a flare from something happens. He said once he never realized when I say I can't move, I really can't move. Having energy is precious. Being able to walk is too. We each can celebrate every tiny thing we can do no matter how small. We are warriors & my heart is with you all💜

Yesterday I drove to the store to get a carefully crafted small list of carryable (I like creating words others like us can relate to. Try it. You'll find humor in it too.), and the disabled slot was across from one of those new fangled vehicle charging stations. The thought came to me that I'd like to be able to plug myself into one of those things and as a matter of fact, once I make it out of the store, I'll be right over there. I'll even bring a comfortable folding chair, the book I'm presently reading and listen to my calming music on my phone. I'm not sure how much it would cost me as I can get pretty tanked out, thank you CFS, but would that be a great place for a group recharge? Why people with vehicles would have to take a number once our band of rechargers shows up. Just picture that! Everyone plugged in on a slow charge, laughter about the things we've found to laugh about, passing the tea kettle, electric of course, around, warm house shoes on feet resting on the cushions in the center of our circle, soft covers over our legs, why all we need is a cozy fire pit and we'd make a great postcard. O, you're topped off already, Charlie? Heading to the golf course aren't ya? Well, I hear they have a charger there for your car, golf cart and you.

Yes, there really is humor in the bleakest things. I recently enjoyed another carpet inspecting CFS event and found a long list tiny earring! Hey, I figured while I was down there I'd look around the geography. Found a dime too! What humor have you discovered out of the blue, or purple or whatever your favorite color, during, or whenever, a flare or after, that you can look back on and smile about? See you at the charger!

BEING INVISIBLE
Hello, dear @moi2558!
Thank you so very much for sharing your experience.
Most people (doctors included!) have NO idea of how difficult it is ''to survive'' (and I use ''survive" because to use "to live" would be wrong ) with CFS/ME.

I believe the main problem is that most people, unfortunately, react to (and somewhat understand) only what they can "see": A broken foot, leg, or both arms.
To try to explain what CFS is is like expecting people to believe in the Holy Ghost or in something else invisible.

As a matter of fact, this is the very FIRST time I actually meet someone who has had and has a similar experience to mine.

When I was new here, and I wrote my first post about CFS/ME, nobody reacted to it and so I thought that ... that post too was invisible!

I have copied and pasted it because I want you to know that you are not alone and that I know all too well what you are talking about.

"CFS/ME
I have been struggling with this disease for so long. Just trying to find some info on these pages has made me feel exhausted. I have tried to find support groups in the city where I live but found none. I would appreciate it so much if someone with Chronic Fatigue Syndrome would write and tell me how they cope with it. I am sick for about 6-7-8 months every single year. I am doing better for a couple of months and then I get really sick again (the worst is the total lack of energy and the terrible feeling of being unable to do things that were so normal for me before. And I am talking of very basic things.) When I get so sick I also get terrible depression. Right now I don't know which of the two is worst. I only know that I am not well at all and that I feel miserable. It is so sad when I hear my doctor say with a kind of arrogant smile: "You know, there are many doctors who do not believe in CFS …". I know she is one of them. I feel it is offensive. I now go to her only when I need to check my thyroid (Hashimoto, fibromyalgia, osteoarthritis, etc.) or if something else is wrong. Otherwise, I try to avoid seeing her. I have not found a doctor who is knowledgeable about CFS."

I wish you all the best, moi2528! A big hug and Merry Christmas!

@christinia GEEZ IT'S AWESOME TO MEET YOU! You talk about depression, I had a sit down with my GP & told her, no, I'm NOT depressed. I'm sad. I'm in a state of continuous mourning over old & new abilities I've lost, people that vanished because I was an outsider now, & there isn't a "pill" that you can give to "fix" sad. Can you give me a pill to fix the sadness, the mourning of losing my youngest daughter? No. It's the same with what I can't get back. My 'used to'. She was silent, then said, You're right.
How I wish 'norms' could understand, yet I wouldn't wish this on another. My friend continues to learn more of other ways the other autos have caused me to change in every facet. I told him once, that person you knew is gone. Let her go. See me. Get to know me. Just as I am doing.
He's retired military. He was a DI. So he still speed walks & I used to keep pace with him. Now he'll apply his brakes to walk beside me. Sometimes it's my heart & lungs that cause me to have to slow down or stop. Sometimes it's feeling my energy starting to drain. Whatever it is, I have to make a mentalist if what needs done in order of real importance & if I get just 1 thing done 🎉 If I'm shot just getting dressed & end up parked on the couch with my pup, I'll read & listen to music. We don't have to try to force ourselves to be the used to so others are comfortable or they stay a friend. Everyone I knew is gone but 3 people. 2 are in other states, but no matter what, I tell Charlie he's like an neverending skunk stink, & it's perfume to me. I'm honored to meet a fellow stinker. 🐕‍🦺💜

Dear webdog@webdog,

the one thing that I for sure know helps, is trying to have an as serene life as possible because stress, worries, problems, challenges, and other people's expectations, can drain us of our already non-existing energy and make us much, much, much sicker.

Merry Christmas and Happy New Year!

Christiania