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Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) treatments
I'm curious if anyone has found any treatments that help with ME/CFS.
Currently, I'm housebound and occasionally bedbound, and unable to work. I can leave the house perhaps once a week, but always with "payback" or post-exertional malaise. So I guess that would be moderate ME/CFS. I'm not usually bedbound for long periods like the severe patients.
For the past 2 years, my doctor has prescribed Valtrex + low-dose naltrexone. These treatments definitely help with some symptoms, and I'm very fortunate to have them. My quality of life has improved. However, these treatments seem to do nothing to improve functioning.
Although I've been sick for 40 years (following a viral infection), 5 years ago my health deteriorated dramatically on a (not Mayo) doctor-prescribed treatment plan that included increased exercise and a stimulant. Now, I seem to be unable to get back to even my previous level of poor health.
If anyone has found a treatment that helps with ME/CFS functioning, please do share. Thanks.
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Very sorry you are going through this. I am not a medical provider, just writing with personal experiences. I have a friend that was hospitalized for 1st stroke but NO, then MS, but NO, many of the same symptoms as you. She was diagnosed by her ophthalmologist who ordered a more in-depth Lyme disease blood test, Westergren Method I think. It was positive and she was referred back to her neurologist and maybe infectious disease for treatment of neurological Lyme Disease. She is doing much better after about a year of treatment with antibiotics and steroids, I believe.
I had dystonia, severe eventually, from taking the anti-nausea medicine Compazine.
Thank you for this post and I am new to this blog. I guess I have a diagnosis of long covid and continue to struggle. Some of the symptoms are the same as described for ME/CFS. I left my job/career of 25 years because of it, as well as not being able to be a reliable employee. The mental anguish was terrible because of “quitting”. I have had a job since I was 12 years old (or younger). My depression really increased while being too ill to participate in family life, daily activities, and work to the point of suicidal ideation (head space is not suicidal now 😊). I have been through a many tests and doctor visits with most results being negative/normal. Now, I’ve considered disability because I want to be able to have some kind income contribution to my family. My husband works and supports me and our three teens. Our marriage has suffered from this illness too and I would not be surprised if separation was in store. Sorry so wordy! In my family, disability was perceived negatively because of a few bad seeds that take advantage of the system. Therefore, I am fearful at even attempting to ask a doctor about it or knowing where to start? Or how I will be judged? I have never been good at asking for any sort of help.
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1 ReactionI'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.
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5 ReactionsHello! 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.
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3 ReactionsI have read about many auto-immune diseases and the symptoms of several of them overlap with each other and with ME/CFS, so it is very hard to know which diagnosis is is correct. Additionally, as we age, we have aches and pains. My upcoming visit to a new rheumatologist is my last attempt to try to get a convincing diagnosis as based on my reading, I suspect that I may have Sjogren rather than Fibro or ME/CFS. Whatever the outcome of this visit, I will continue with my life following my knowledge of my body, being kind to myself and to the extent I can, continue my volunteer work. Helping others to me is healing not only to others, but to me. Thank you SusanEllen66 for your response. There is wisdom in aging and acceptance of whatever life deals you. Wishing you the best of health in 2023 and beyond.
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1 ReactionI’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.
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1 ReactionThank 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! 🌻
@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!!!
Good to hear your story Christiana. My feelings exactly. While I have followed the research on ME/CFS, I recognize that there is no test to determine thit diagnosis. It is diagnosed based on symptoms and by eliminating other auto-immune diseases. While I appreciate the difficulties faced by the clinicians, I have to say that the criteria are only symptoms, so I don't feel that they are distinctive enough and reliable enough to reach a definite diagnosis. Having been on this journey since 2011, I simply follow what my body, brain and intuition tells me. This visit to a new recommended rheumatologist will be interesting, but I don't have high expectations. So, I immerse myself in what I'm interested in. Aside from volunteering, high on my list is classical music, reading and interacting with friends in person and on Zoom. The Epstein Barr mystery is a mystery. If I have high antibodies fighting EVB, why are my symptoms not similar to the symptoms I had when I suffered from infectious mononucleosis? the only thing they have in common is fatigue, but fatigue can also result from many other illnesses. I'm skeptical but not bitter. So, I go on with my life grateful for what I am able to do at any particular time and accepting the fluctuations I experience which define what I am able to do on a particular day or for that matter a particular hour. I hope Christiana that 2023 will treat you well and you can enjoy life despite the limitations imposed on you by your illness 🙏🏻
Thank you for sharing this information. It’s wonderful that you seem to have a loving family and a comforting faith. Hang in there.