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

I’ve been putting the “puzzling pieces” together and realize that I have had CFS/ME for several years.
I can sleep 8 hours and wake up exhausted. My joints hurt, lymph nodes under my arms swell and are tender often. If I feel well and go out shopping or have a friend in for dinner I pay for it the next day or two. When I am tired, my balance is way off. I have to use a walking stick. There’s more but…

My PCP suggested CFS/ME several years ago, but I thought I had fibromyalgia. You can have both.

Anyone else here have it too?

@SusanEllen66, it is good that you continue to seek answers for what you are experiencing. That said, you will notice that I have moved you post into an existing discussion on CFS/ME where you can connect with others who may be having similar experiences.

I've merged your post to this discussion group about ME/CFS to connect you with others like @clutch @sueinmn @becsbuddy @rarelybees2889 @chaun2947 and others who are dealing with ME/CFS.

Have you considered going back to be seen and potentially receive a diagnosis?

Thanks for your help.
I saw my neurologist’s PA 2 days ago. She argued with me about CFS. She told me that it’s an old name for fibromyalgia…sigh

She has made arrangements for me to have brain MRI, EGG because of my balance and tremors.

I’m a bit weary from trying to educate my health care pros on things.

When I searched for a discussion about CFS I could not find anything. What am I doing wrong?

Hi @SusanEllen66, Did you happen to use the search box at the top of the window? That one searches all groups and discussions within each group for your search text. If you want to find related discussions. Here's the quickest way:

-- Click "Connect" near the top left of the window to the right of the Mayo Clinic logo. See screen below. This will take you to the Connect home screen.
-- At the top of Connect home screen you should see a blue box with a search window. If you type your search here it will find a list of discussions with your search text in the discussion title.

Does that help?

Thanks I will check it out.

I HAVE GONE THROUGH THAT AS WELL ,IT IS HORRIBLE TO HAVE TO DEAL WITH

Had similar experiences with exercise. Most rheumatologists seem to prescribe this. They also seem to forget
that post-exercise malaise or post-activity malaise is a typical symptom of the ME/CFS. I really don't understand
why since I don't know anyone who hasn't experienced it. I find that I have to do tiny bits of exercise, probably about 5 minutes worth, during the day. At the most 15 is what I can tolerate as a total. I'm capable of doing more, but pay the next day. I've also tried to make small bits of housework into small exercise routines. For example:
I bend over and empty the dishwasher. Stop. Sometime later in the day, put what I've taken out away. I make
the bed. Mine is kingsize with heavy pillows and quilt. I clean the bathroom double vanity sink and mirror.
Put everything away that I've removed from drawers. Before sleep I do a very very short exercise routine in bed
before I go to sleep. It's not strenuous enough to disturb sleep attempts. Sometimes I walk up and down the 15 steps going up, then coming up from my upstairs. I would not do all of these in a single day. I find that I have a bank of energy and it can very from day to day. If my body tells me to stop, I stop. No doctor has ever said stop if
you're tiring yourself out. If you truly have ME/CFS, you won't build stamina. Physicians can't seem to understand this. However, you don't want to get to the point where your heart muscles, the most important, get stiff. I'm afraid the exercise aspect of the disease is personal trial and error unless you find a fabulous PT. I had one but she retired. Good luck.

Once you get your diagnosis apply for
Social security disability. It is Retroactive to I believe when your illness started or when you first file. I have had chronic fatigue and Fibromyalgia since I was 26. I am now 63 and dealing with terminal cancer. The fatigue has always been my biggest problem and I did have to quit working at the top of my career at the age of 38. I was devastated but could no longer work and didn’t know how I continued to work for that long since it was almost 20 years. At that time I used vitamin stimulants from the health food Store to deal with work until those no longer worked. It is a terrible disease that is not understood by most medical professionals. But it has been around for a long time and there are the specific criteria so you can get a diagnosis and apply for disability, my advice to you would be to get an attorney who specializes in getting Social Security disability. I actually had to move from Texas back to Pennsylvania in order to get my disability 20 years ago. No One ever told me about this as an option or even applying with my employer for disability which unfortunately I was not able to get. This this would help you tremendously as at least you are financially in a better position since you cannot work. It does relieve some stress but not all. I understand what You are going through I have been there many years on the couch or in bed for weeks at a time. I was also a single parent, and I worked for 20 years previously while sick, I have no idea how I did that. It felt impossible most of the time. I finally started doing abstract art in 2016 and that took away a lot of my fatigue because I was doing some thing that I loved and it made me forget having CFID. Hang in there I believe newer research is being done now finally.

Please check out:
me action network.
They are a wealth of information.