What to expect/do having ME/CFS?

@melissawolfe1981, I thought you might like to scan through the discussions and comments on ME/CFS and headaches while you wait for members to respond to your discussion. Here's a link to the search results - https://connect.mayoclinic.org/search/?search=ME%2FCFS+and+headaches. You might also find this video helpful for learning more about the condition:
-- Misunderstood and Misdiagnosed: A New Look at ME/CFS: https://youtu.be/kmrUpXZel9A

@melissawolfe1981
I'm sorry to hear you have been so ill. When I was 31 I became so fatigued (and etc) I lost my career as an RN. This was 1990 and the very beginning of understanding there was an illness, CFS. I had friends in Canada who had treatment and more support, their diagnosis was ME. I'm thinking to tell you that despite your diagnosis, this is a time where it is not considered "all in your head." There are treatments now. Hopefully others will reply that have CFS/ME. I went to a big medical center and they told me to go home and meditate. I told them I'd been mediating for 20 years and then became ill. Within 10 years of living with an illness no one believed in, my bloodwork changed. I had RA, Sjogrens, Hashimotos thyroiditis, Undifferentiated Connective Tissue Disease. All of the autoimmune was in my future after a decade of severe disabling fatigue. I will never know if the two experiences were connected.

Here's my hopeful news about CFS; I became a person with a rich inner life. I became a published poet, creativity was key in my surviving the years of severe fatigue. Your life goes on. It is just not what was expected! I hope you find your inner strength and joy.

@jw9 thank you & I’m so very sorry you had to go through so much too. It has been exhausting to go from living a normal, functioning life to a not so functioning life. I’m thankful for a diagnosis finally & have tried to start embracing & navigating this “new” life which is much slower than what I was before. I can’t believe their suggestion for you was to meditate….Im so sorry. The frustration of finding & receiving help has been insane. Again, thank you for your positive message🌻

@melissawolfe1981 and @jw9 ,
Hello. Nice to meet you both!

@melissawolfe1981 -Im so sorry to hear about your new diagnosis, although I understand the measure of relief we have when we finally know what’s wrong. I was diagnosed in 1986 with ME/CFS following a bad Epstein Barr virus infection. Back then they called it “Yuppie Flu” where I lived.

Like @jw9 , I’ve also developed quite a few comorbid conditions over the decades. Eg: Hashimoto’s, autoimmune Axonal Polyneuropathy, chronic tinnitus, POTS, sleep apnea, arrhythmias, anxiety, and a few other things.

This disease can fluctuate greatly over the years as it waxes and wanes. I was bedridden the first 2-3 years and only went out for Dr appointments. By year 10 I improved to about 70% - still couldn’t work outside the home but could travel, go to concerts, garden, and do so much more. Now at 40 years I’m home bound again but can do basic household tasks with careful pacing.

Treatment wise, I’ve tried many things, supplements, diets, etc. without success. The one medication that has made a big difference is low dose Naltrexone. I don’t need pain medication- which is remarkable considering I have severe neuropathy, osteoarthritis, and pain from. fibromyalgia and ME/CFS.

Pacing to conserve energy is the single most important thing for me in order to function and avoid PEM.

Also relaxation with breathing techniques to reduce stress is very helpful.

I’ve personally known several people who fully recovered after 2-3 years. That seems to be in keeping with what I’ve read. But for those of us who don’t recover or fully recover, attitude is everything. Can’t stress that enough. Learning to embrace and even enjoy “Life in the Slow Lane” can be rewarding in its own right. There are still so many things that we can enjoy and be thankful for in this world.

@melissawolfe1981 , please let me know how you get along with the Modafinil. I was prescribed that recently by my neurologist but was reluctant to take it.

Solve ME Initiative (Formerly CFIDS Association of America) is a fantastic research and advocacy organization that’s been around since the 80’s. Here’s a link to their site. https://solvecfs.org/

Also the Phoenix Rising forums have many patients who follow all the latest research. Lots of in depth discussions over there.

Best wishes to you both! ❤️

@db72
Thank you for your informative post! Prior to any autoimmune diagnoses I spent many years with "CFS"/ME. (Friends in Canada called it ME even 40 years ago). So I was interested in the link to the solvecfs.org site. This illness remains an obscure entity. 10 years before I became disabled, I had mono/Epstein-Barr virus. You reminded me that they can be connected.

How strange that these viruses open us up to a multitude of illness for life, yet they aren't being taken seriously, STILL!?

I have Hashimoto's, sleep apnea and tinnitus also. And "a few other things"... Hearing from you has made me rethink about what caused all of these chronic illnesses. Some days I could use a nap just taking care of my health!

I was an RN, as I wrote here, but don't know some acryonyms used on these boards. What is PEM? I also agree about conserving energy...I have to take an hour nap every afternoon or my brain hardly functions. It's just a part of my life now.

@melissawolfe1981 and @db72 Glad we connected

@jw9 yes! We do share so many of the same comorbid conditions and I am convinced that the Epstein Barr Virus combined with a genetic predisposition is a major player in this and so many other neurological disorders. Recent research seems to be bearing this out.

I have 2 adult daughters (I’m 74) and both of them had severe cases of mono in their late teens. One has been disabled with ME/CFS for 20 years. The other doesn’t have ME but has several autoimmune diseases and a history of epilepsy.

My axonal Polyneuropathy has advanced to where I have difficulty walking at home and need a motorized wheelchair to go out. When I first got sick with EBV it attacked my nervous system. From day one I experienced parathesias and vibrating sensations in my legs. But it was about 15-20 years later that the numbness and balance problems gradually set in. After many tests and 3 neurologists, the latest neurologist paid close attention to my medical history with EBV. He explained that my neuropathy was caused by the EBV virus that triggered the autoimmune form of neuropathy. I had suspected that for years based on personal research, but it was satisfying to hear it from someone who understands how viruses can affect our immune system. This neurologist also explained why my tinnitus was also linked to the nerve damage.

It’s something that your Canadian friends knew to call this ME early on. The UK did as well. The US has been behind on it for sure!

I’m so sorry you lost your nursing career so early in life. 😔

PEM stands for Post Exertional Malaise, and is one of the diagnostic hallmarks of ME. PEM is marked by ME symptoms that are exacerbated due to over activity- even emotional activity such as visiting. PEM sets in 12-48 hours afterwards and can last hours, days, weeks requiring additional rest to recover.