Help with Chronic Fatigue Syndrome

@petuniamom567 I’ve been wondering if you have found out anything about the ME/CFS site at Stanford U?

@lanalc I’m glad you found this site also! It certainly sounds like you’ve been having a rough time. I’m hoping we can help. Have you seen a rheumatologist? They are specialists in putting together mysterious symptoms. You can contact a major medical center or university hospital near you. Find out if you can be seen. When i was first diagnosed with my autoimmune disease, none of the doctors locally knew what it was. I then went to a university hospital and they knew right away what i had and began treatment. 8 years is too long to live a half-life!
Do you think you could contact one of the hospitals?

Haven't checked site yet. But will and appreciate the info.

People have contributed a lot to your discussion.

Sundance, I am not sure if will help but R. Paul St. Amand, M.D. and Claudia Marek , authored a book "What Your Doctor May Not Tell You About Fibromyalgia" . It describes treatment to reverse the disease because almost every symptom you describe are also symptoms my wife has and she was diagnosed with Fibromyalgia. She is also carbohydrate intolerant which makes her diet difficult to manage.. Dr. Amand is now retired but he was a endocrinologist at UCLA. Some of his former patients have a facebook group (we are not on) to answer questions. My wife struggles with his remedy, partly because of the sugar/carb problems, but I think checking out his book might shed some light on your CFS. Best wishes Gary

MS related fatigue. Adderrall is a life saver. Or Provigil.

I can relate but have found a reg p.t. regimen that works for me. It sounds nuts to exercise when you hurt so bad but walking is best overall I have found. I thought my rheumatologist was nuts when I could hardly get off my couch and walk to the bathroom but I trusted him ( which I don't do easily) and did what he said. Went from going out door to end of grass and back then each day I would take just two more steps. Eventually I worked my way up to 3 miles one way and back. Due to other difficulties in health now I am no longer able to go that far but do in home physical therapy routine and still walk a few blocks at a time. I used to be on gabepentin at 3200 mg a day plus diladid pain meds 3-4 times a day. I started using cbd gummies. I quit it all and only have to take an aleeve here and there when have a bad flare up. I am so relieve from all muscle aches and pains. My trigger points are not in flare constantly anymore. A doctor can do only what they are aware of thru guidelines. IT IS UP TO OURSELVES to find out what works best. I am now only on my med for chemical imbalance and vit d3 in winter as don't do much outside then so don't get enough sunlight. Just so others know I also suffer with Ehlers Danlos Hypermobility. Interstitial Cystitis, Artificial Hip, Chronic Fatigue, Fibromyalgia, due to EDS have had 3 back surgeries, neck surgery with plate and screws, and shoulder anchor put in. P.t. has been a life saver for me. I have been doing this for years and any time I stop for more than two weeks I start getting weak again and pain and flares start back up. God made our bodies to move not be sedentary. The food we eat is a big factor also. All the quick convenient foods today are JUNK. Get back to the basics of fruits and veggies with little meat. Stay away from the sugar and refined processed foods. We all want a magic pill to cure us--- it's not that simple and honestly they are actually more harm than good. Just put more toxins in TBE body that we have to try to fight off. Hope this helps someone get to a better place in living !!

These conditiond began after having a very virulent flu virus in 1979. I also contracted Infectius mononucleosis in my post grad year. The flu aftermath left me very ill. We now know that any virus infection can lead to a disruption of some kind in the body. The latest on FibromyalgiaII the type I have gives me chronic pain all the time. Both conditions were reclassified in the last year as neurological . \\\\\my muscles are stiff and form lumps under the skin. If I over do-- then I can run into loss of arm and leg function. \does anyone have thes symptoms?

@orlanda, welcome. I moved your message to this existing discussion:
- Help with Chronic Fatigue Syndrome https://connect.mayoclinic.org/discussion/help-with-chronic-fatigue-syndrome/?

I did this so you can connect more easily with others like you who are living with Fibromyalgia and Chronic Fatigue Syndrome.

You may also be interested in the discussions in the Chronic Pain group here: https://connect.mayoclinic.org/group/pain/

I've fought with fibro for over 40yr and I've noticed the similarity with CFS and fibro also. Have seen a rheumatologist and he gave me gabapentine which doesn't help much so he kept increasing the dose and I got more and more dizzy, fell several times, my roommate said my personality changes, so as a retired RN, I started to decrease this med until I take just 600mg at bedtime. There is also a treatment for nerve desensitivity. Don't know if this helps or not. I'm also on 120 mg, 60 mg twice a day. I'm new to this group so floundering around some. Hope your Dr visit goes well.