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

I am happy to find this group. After over 6 years of seeking help, I was diagnosed with M.E. by a neurologist. My journey has been long and hard, as have most with this chronic and debility, systemic neurological illness. Was first diagnoised with MS, then not, then Myasthenia Gravis, put on Mestinon, which does help, then not. I have other, complex and puzzling symptoms such as Diplopia, Dysphagia Dysarthia and more. .Am now struggling with severe swallowing and speech issues. Recent appts and testing with Speech Therapist, three ENT drs diagnosed and documented swallowing and speech as severe and progressive. Recent consult with a new neuro: diagnosed with Dystonia, a Neurological movement disorder. She is referring me to NIH for evaluation and testing. I get discouraged and frustrated, then bounce back with new determination. Finding others with similar issues and challenges has bee so helpful, as I felt so alone with all of this before.
Elik

I'm responding to webdog and many others who have been in conversation about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
My journey has been long. It started with a diagnosis of Fibromyalgia in 2011 by a rheumatologist who diagnosed it and had no interest in treating it. Needless to say, I left him and sequentially saw two more rheumatologists who continued to believe it was Fibromyalgia and treated me for it. One day, I went to see the 2nd rheumatologist and I was feeling awful as I had more severe pain and fatigue. She did a blood test which revealed that I had a high level of Epstein Barr antibodies. As a result, she changed the diagnosis to ME/CFS. She then told me that while she knows how to diagnose it, she doesn't know how to treat it and recommended strongly that I see an infectious disease specialist, the only one in my city who at that time, in 2018, was the only specialist in ME/CFS as she was doing medical research about it. I waited several months until I was able to see her. She had an independent office, not affiliated with any medical institution. She concurred with the diagnosis and prescribed a number of supplements and Valtrex, an anti-viral. She did a blood test every time I saw her and the Epstein Barr antibody level continued to be high. Mind you, this was 2018 and my brush with Epsten Barr dated back to 1965-66, when I was a sophomore in college! I had a bad case of mononucleosis, which lasted a whole year, but I had recovered! Six months into treatment with this specialist, I told her that the Valtrex is making me more sick and I questioned whether I should take it as it appeared that it was no working as the level of Epstein Barr antibodies was not going down. Her response was: "To be honest, at your age , which was 75, you are not treatable. That prompted me to leave in despair. Next, I went to a neurologist who was kind, but didn't know what to do with me. Ultimately, I was so sick that given that I'm a widow living alone, I hired an aide who helped me with daily tasks and accompanied me to doctors and a wonderful acupuncturist.
Ultimately, I decided to move to a Continuing Care Community (CCRC) as I did not know what the future may bring.
I started to search for another rheumatologist and neurologist as well as a PMP. None of them in the area had heard of ME/CFS. I have been in this location for 3 years with no productive medical care.
I have been following the research since the Fibro diagnosis and then ME/CFS. I even took an online course about CFS that attempted to help patients with this diagnosis to manage their lives better. Everything I read emphasized PEM and advised against exercise. Now question whether my diagnosis may be incorrect and I plan to see yet another rheumatologist. In the meantime, I'm ignoring all advice about exercise and am working with a personal trainer on gentle exercise to strengthen my muscles and my bones as I have been diagnosed with osteoporosis. I've reached the point where I'm following my own intuition as I believe I know more about my body than any of the doctors I have seen. This may sound arrogant, but it is proving to be true. I am energized. I am not suggesting that this applies to others, but it is my story. I am doing a lot of volunteer work in my community and believe that the more I am involved in helping others, the better I feel.

Hello! You are so very right! I have been down a similar road, and at the age of 73 I know my body better than any health care provider.
Right now I’m in a lot of pain all over my body. I have several autoimmune diseases and I believe the pain is from that. One Doctor agrees with me because of my symptoms. Another says no because my blood work doesn’t show enough inflammation! So, I basically stuck between two different diagnosis.
I’m want to say I am too old for this aggravation, however I would rather say that I am blessed.

Hello! You are so very right! I have been down a similar road, and at the age of 73 I know my body better than any health care provider.
Right now I’m in a lot of pain all over my body. I have several autoimmune diseases and I believe the pain is from that. One Doctor agrees with me because of my symptoms. Another says no because my blood work doesn’t show enough inflammation! So, I basically stuck between two different diagnosis.
I’m want to say I am too old for this aggravation, however I would rather say that I am blessed.

I’m so sorry that are in so much pain. Be kind to yourself. Acknowledge your pain, but focus on life. Do what you are able to do. Pain is debilitating, but I find that doing a guided body scan, a kind of meditation helps to relax the body and relieve the pain. Jon Kabat Zinn has excellent recordings that you can listen to online on your your iphone.If you are comfortable with a cell phone, try putting his name in and you may get a recording you can use. Dr. Zinn created this guided meditation and uses it in a hospital in Worcester,Mass to help relieve patients who are in pain. I have found it quite effective. It’s possible that. He has created CD’s. I’m not sure. Best wishes.

I'm responding to webdog and many others who have been in conversation about Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS)
My journey has been long. It started with a diagnosis of Fibromyalgia in 2011 by a rheumatologist who diagnosed it and had no interest in treating it. Needless to say, I left him and sequentially saw two more rheumatologists who continued to believe it was Fibromyalgia and treated me for it. One day, I went to see the 2nd rheumatologist and I was feeling awful as I had more severe pain and fatigue. She did a blood test which revealed that I had a high level of Epstein Barr antibodies. As a result, she changed the diagnosis to ME/CFS. She then told me that while she knows how to diagnose it, she doesn't know how to treat it and recommended strongly that I see an infectious disease specialist, the only one in my city who at that time, in 2018, was the only specialist in ME/CFS as she was doing medical research about it. I waited several months until I was able to see her. She had an independent office, not affiliated with any medical institution. She concurred with the diagnosis and prescribed a number of supplements and Valtrex, an anti-viral. She did a blood test every time I saw her and the Epstein Barr antibody level continued to be high. Mind you, this was 2018 and my brush with Epsten Barr dated back to 1965-66, when I was a sophomore in college! I had a bad case of mononucleosis, which lasted a whole year, but I had recovered! Six months into treatment with this specialist, I told her that the Valtrex is making me more sick and I questioned whether I should take it as it appeared that it was no working as the level of Epstein Barr antibodies was not going down. Her response was: "To be honest, at your age , which was 75, you are not treatable. That prompted me to leave in despair. Next, I went to a neurologist who was kind, but didn't know what to do with me. Ultimately, I was so sick that given that I'm a widow living alone, I hired an aide who helped me with daily tasks and accompanied me to doctors and a wonderful acupuncturist.
Ultimately, I decided to move to a Continuing Care Community (CCRC) as I did not know what the future may bring.
I started to search for another rheumatologist and neurologist as well as a PMP. None of them in the area had heard of ME/CFS. I have been in this location for 3 years with no productive medical care.
I have been following the research since the Fibro diagnosis and then ME/CFS. I even took an online course about CFS that attempted to help patients with this diagnosis to manage their lives better. Everything I read emphasized PEM and advised against exercise. Now question whether my diagnosis may be incorrect and I plan to see yet another rheumatologist. In the meantime, I'm ignoring all advice about exercise and am working with a personal trainer on gentle exercise to strengthen my muscles and my bones as I have been diagnosed with osteoporosis. I've reached the point where I'm following my own intuition as I believe I know more about my body than any of the doctors I have seen. This may sound arrogant, but it is proving to be true. I am energized. I am not suggesting that this applies to others, but it is my story. I am doing a lot of volunteer work in my community and believe that the more I am involved in helping others, the better I feel.

@hw43 Hi! Reading your message is like reading my own story. They diagnosed me with MS ++ different other things. Until I found a doctor who was a kind human being, an intelligent person, and a professional who had been going his own path (looking into the issue of alternative medicine, and the importance of music in palliative medicine). Well, to make a very long story short, he had all the time said that my symptoms were the same as those associated with ME/CFS. So, when I took a blood test (required by an endocrinologist), we found out that I had a very, very high level of a virus called Epstein Barr (I had never heard about it up to that moment!).
All I feel I can tell you is never, never, never doubt yourself. We might not have a Doctor's degree, but when it comes to our own body, we have Doctor's degrees multiplied by 10 because nobody, nobody - knows our bodies as well as we do.
I am happy for you that you are volunteering and that you not only are enjoying it but that you are physically able to do it. 😊
Happy New Year!!!

Thank you for sharing this information. I pray and listen to Christian worship music in the morning.
I manage to get through almost every day without any pain medicine. My body is very sensitive and any type of pain reliever knocks me out including Tylenol! The one thing I use on occasion is Aspercreme or Bio-Freeze. Topical medication is good for isolated spots.

I think I have become “numb” to the pain. It’s been a constant shadow for so many years that I would miss it if it went away! That is a mental health issue…I know.

My mental health is not always great either. I do take meds for the depression and Bi-polar anxiety I’ve had for about 20 years.

But, I am blessed with a family and friends who love me. My Lord Jesus Christ is my comforter and healer. He loves me more than anyone else could ever imagine!

Wishing you a blessed day filled with light and love! 🌻