Tag: fibromyalgia

Energy, exercise, mitochondria, long COVID, ME/CFS, etc.

I almost started to cry when I heard this piece on National Public Radio’s Morning Edition. (The audio clip is at the link, as well as a written transcript which may offer a bit more information than the audio in addition to links to the studies cited and to people providing commentary.)

The piece discusses that people with long COVID have physical changes in their tissues that showed cause for their exhaustion or “post-exertional malaise.” The mitochondria in the muscle cells were not functioning properly, so the muscles could not get the oxygen and energy they needed. It appears that this mechanism is also at work in people diagnosed with ME/CFS and other similar, poorly understood syndromes that exhibit these symptoms.

A member of my family was diagnosed with ME/CFS, then called fibromyalgia/chronic fatigue syndrome in the United States, as a young adult, although she had been having symptoms since early adolescence. She was told that she needed to exercise to build her strength, which was common advice at the time but which proved to be detrimental to her. If she tried to push herself physically at all, she would wind up in so much pain and with so much fatigue that she could barely move for a week or more. As I was listening to the radio piece, I was thinking back to those days, when she was so debilitated that we would strategize when or if she could join the family from her upstairs bedroom because she could only manage the fourteen stairs between the levels once a day, at most.

What made a terrible situation worse was that the doctors would think she “wasn’t trying to get better,” essentially blaming her for her condition when the root of the problem was their lack of understanding of ME/CFS. Effort or mental attitude is not going to repair one’s mitochondria.

I appreciate that research money going to study long COVID is also increasing understanding of ME/CFS and other conditions with similar symptoms. (You can read some of my prior posts referencing long COVID and its commonalities with ME/CFS here and here.) I’m hoping that increased understanding will bring more effective treatments and, at least, an end to blaming patients for “not trying hard enough” to get better.

Compassion is needed in these situations, not judgmentalism.

Compassion is always needed. 
*****
Join us for Linda’s Just Jot It January! Find out more here: https://lindaghill.com/2024/01/12/daily-prompt-jusjojan-the-12th-2024/

IC September

I am not only an eclectic blogger, but also an eclectic follower and reader of blogs. While I follow other eclectic blogs, I also follow blogs focused on travel, food, photography, poetry, the environment, and many other topics.

I follow several blogs where people write of dealing with illness, particularly invisible illnesses, such as fibromyalgia. I do sometimes write here about being the parent of a child with fibromyalgia, but what I haven’t written about is dealing with invisible illnesses of my own. Today, in observance of Invisible Illness Awareness Week  and the close of IC Awareness Month, I have decided to write about interstitial cystitis, which has been part of my life for many years.

Part of the reason I don’t tend to write about having some hidden medical conditions is that I feel fortunate that I do not have the more severe symptoms that some others endure, although, if I am honest, I have to admit that my symptoms, especially when I am having a bad flare, do interfere with what I am able to do and where I am able to go. Again, I am lucky that my personal schedule is usually fairly flexible, so that I can arrange to stay home if I am uncomfortable or tired from being kept awake by symptoms. I am acutely aware that others have it so much worse and I am writing this not as a complaint but in an effort to share some information about a condition which, although relatively common, many people are unaware.

What is interstitial cystitis (IC)? 
Interstitial cystitis, also called bladder pain syndrome, is a condition that can cause recurring bladder and pelvic pressure or pain and increased urinary frequency and urgency.  The bladder lining often bleeds and, in more severe forms, develops a kind of ulceration called Hunner’s lesions. It is more common in adult women but can and does affect children and men, too. The symptoms often vary over time, with more severe flares cropping up from the baseline level.

What causes IC?
Researchers don’t know for sure. They think that some trigger event damages the lining of the bladder, with particles in the urine then further damaging the lining and causing chronic nerve pain. It is believed that the bladder lining is unable to repair itself because IC patients produce a protein that prevents the repair.

How is it treated?
Because the cause is undetermined, treatment centers on trying to alleviate symptoms and prevent flares. One of the most important things people with IC need to do is control acids in their diet. (For me, drinking soda or undiluted fruit juice is the equivalent of pouring lemon juice on a cut.) There are a few oral medications that help some people. Physical therapy can be prescribed. When the condition is more severe, there are medications that are delivered directly into the bladder, surgical treatment for Hunner’s lesions, and use of electrical nerve stimulators.

And for more fun and games…
IC often appears alongside other conditions, many of which are also poorly understood as to causation. People with IC often have allergies, irritable bowel syndrome, and sensitive skin. (Check, check, and check for me.) Other conditions that may occur alongside IC are vulvodynia, fibromyalgia/chronic fatigue syndrome, and lupus. I’ve actually taken part in research looking into genetic predisposition in IC patients, which is interesting as I have family history with some of the related conditions besides my own diagnosis.

For anyone who would like to learn more about IC, I recommend this site:  http://www.ichelp.org which is full of helpful information and links to more resources.

Please remember…
There are many, many people who deal with hidden medical conditions. Many of these cause chronic pain. And many of these people do not look “sick.” Please, have compassion. Be understanding. Don’t blame them if they have to change plans at the last minute or aren’t able to go out of the house because they are having a bad day – or an exhausted day because they had a bad night before. Remember that you are lucky to be having a good day and realize that a day may come when you need the same kind of support and caring that your friend or family member needs now.

– JC