New and confused

[sunkacola]

I feel great while exerting but man do I feel like a wet dish rag the next day

unfortunately this is often the case. However, I have found from my own experience and that I hear from others that if you keep at it, always trying to find that "sweet spot" where you do enough to feel good about yourself and to keep your body active without exhausting yourself too much, you can often build on it and do more with fewer repercussions. And even if you can't do more than ( fill in the blank), it's good to keep doing that.

Note.........it's easy to say "find the sweet spot". Not necessarily so easy to find it, because for most of us it keeps moving! If only it stayed in one place! But in my opinion it is always worth it to do the best we can at staying active to the extent we are able, and always thinking about pushing just a bit more to get ahead.

For me at first this was highly frustrating. But once I learned to go with the flow of it and accepted that I wouldn't ever know for sure if I were hitting the right level of exertion until later and I just had to give it my best shot, I stopped feeling that because it became a sort of game I played with myself. Of course, if I lose it may mean a day on the couch or a lot of pain, but if I don't lose it's exhilarating and empowering AND maybe I even got something important accomplished. So, once again, worth it!

 

[Shel]

 

[sweetkamie20]

It's probably a hybrid of issues. I feel like i do plenty of laborious tasks - at least they feel laborious . Tonight I grouted for 4 hours. The last 30 minutes I just groaned my way through it . Grout is ruthless.

I think part of the overarching problem was that when I started having seizures at 18 (late 90's) my life fell apart because it was entirely sports. Unfortunately, heavy breathing and sleep are the things that the EEG said were my triggers for seizures. (Cardio still is - my last known seizure in 2012 was during cardio.) So for 2 years I was pretty well homebound in an area that there is no public transportation.

I ended up depressed because I missed sports so much. So why didn't I do something different? I just kept believing that I could do the same things - mind over matter you know? I used to run 13 miles just because I wanted to. I played soccer and later tennis but had to quit.

Yoga actually wasn't popular really in the U.S around that time or if it was I didn't know about it. When I did become aware of it I started doing it (probably not the best kind of yoga because it was a fast series of movements). Though I personally have no qualms with yoga, I have Christian friends that consider yoga a spiritually compromising activity. The Bible says the best thing to do in circumstances like those is to respect how it makes them feel so no yoga for me

So I switched over to pilates and the Wii Sports games. But tasks based on muscle exertion just wear me out and usually turn into a bad flare. Sometimes I get lucky and the flares are just half flares and sometimes no flare. But I am leary of doing anything one might call exercise - house stuff keeps me plenty exhausted. Walking is super boring to me. Even if it wasn't Id still conserve my energy for essentials and not traditional exercise...

This turned into something longer than I expected - sorry. Just felt like a fair representation was the whole picture...

Thanks for the reminders - I love reminders because I do forget a ton of stuff.

 

[sweetkamie20]

Also, at the time I wasn't looking for new things to try because I had no idea what was wrong and I had no idea when it was going to happen. All I knew was that flares made me feel like I was dying and I didnt really know when flare ups would happen so I just would keep trying what I loved after taking breaks.

I like the idea of it being a game to play - that's a nice twist on it. It makes it more palatable and I really like games. I hate the idea that its sort of guessing game but it is what it is and I'm figuring it out slowly....

I think i had a black eye in this pic from soccer. I taught myself some gymnastic tumbling and did cheerleading between sports seasons...I miss sports of all kinds my sport right now is wrestling with 1940's house renovation . I'm gonna try stretching and hopefully figure out my sweet spot with pilates after this place is fixed.

 

[Shel]

Aww, thank you for sharing. It’s the emotional part that goes with all this crap that also plays a toll on us. We need each other! I feel like although I really appreciate my doctor, that she doesn’t really understand because she’s not experiencing it.

 

[JayCS]

We've got different sub groups?

Yes, do tell more about subgroups

This is as yet more a belief wafting in many heads, not proven. It would explain our diversity, but also certain amounts of similarities. An alternative would be everyone is totally different, with a completely individual different combination of causes & biomarkers. Subgroups is complicated enough for researchers, but total individuality probably wouldn't bring us much further than we are today - unless machine learning might conjure something up out of its black box, just by us all putting all our triggers, symptoms and treatment successes into it... long way to go...

The probably most recent research trying to actually study subgroups is a Spanish one from 2021 "Fibromyalgia as a Heterogeneous Condition: Subgroups of Patients Based on Physical Symptoms and Cognitive-Affective Variables Related to Pain". But the "cognitive-affective variables" mean how well we cope despite the pain.

The findings revealed three clusters .... Group 1 (n = 72) was characterized by high physical and psychological affectation, Group 2 (n = 19) by low physical affectation and high pain self-efficacy, and Group 3 (n = 70) by moderate physical affectation and low pain catastrophizing.
Meaning: The 72 people in the 1st group had lots of pain and felt bad about it, in the 2nd of 19 didn't have much and felt good about it and the 3rd of 70 people had quite a bit of pain and were OK-ish with it. For the details (below) the most important addition is that in Group 3 fatigue, sleep and coping were moderate, not good, but pain acceptance was highest.
Well I don't fit into one of these subgroups, but that's my job (life) not to fit into pigeon-holes

At first I thought these subgroups don't help much, cos I was thinking of subgroups in terms of causes. But I spose how someone is coping might be helpful to learn which treatment types they will be most able to come to terms with....
But this does praps show a bit how little is proven...

Spoiler: Click for details about the 3 groups from the full article.

Cluster analysis in the FM sample revealed three conglomerates based on the severity of physical symptoms and cognitive-affective variables related to pain. Group 1 was characterized by highest levels of pain intensity, general fatigue, poor sleep quality, pain catastrophizing, and pain vigilance, and lowest levels of pain self-efficacy and pain acceptance. Group 2 showed the lowest level of general fatigue, moderated levels of pain intensity, pain catastrophizing, pain vigilance and pain acceptance, and the highest levels of sleep quality and pain self-efficacy. Group 3 displayed by the lowest level of pain intensity, pain catastrophizing and pain vigilance, moderated levels of general fatigue, sleep quality, and pain self-efficacy, and the highest level of pain acceptance. Significant differences were observed in all variables between Group 1 and Groups 2 and 3, with Group 1 showing the most dysfunctional profile. Likewise, significant differences were observed between Group 2 and Group 3, with Group 2 exhibiting less general fatigue, better sleep quality, and greater pain self-efficacy than Group 3, and Group 3 showing less pain catastrophizing than Group 2. The variables with greater discriminative power were general fatigue, sleep quality and pain catastrophizing. Regarding the external validity of the identified conglomerates, only significant differences were found between Group 1 and Groups 2 and 3, with Group 1 showing the highest levels of FM impact and psychopathological distress. Probably the greater self-efficacy and less catastrophizing could account for the better clinical status of patients in Groups 2 and 3, confirming the hypothesis raised.

 

[sweetkamie20]

Aww, thank you for sharing. It’s the emotional part that goes with all this crap that also plays a toll on us. We need each other! I feel like although I really appreciate my doctor, that she doesn’t really understand because she’s not experiencing it.

The best emotional help I found is here . Both reading about and expressing my own emotional ups and downs is helping a ton.

Really, no matter how sympathetic, other people without chronic pain just don't have the reference points to understand. After 10 years, my husband now understands that his advice was coming from a normal person angle. He still doesn't know what it means to be burning up on the inside but his advice is much better. The diagnosis of fibromyalgia this year was a win for him, too, because he was able to embrace all of the additional considerations fibro necessitates...

I didn't hear what I wanted to here but I did gain a lot of ground getting better/not feeling so bad . Learning what people here have observed has actually sped up my healing light years!

It would be super cool to have a doctor that understood. Maybe I should do an internet search, "medical doctors with fibromyalgia in my area". I don't think I'm gonna find one

 

[mozaicbeading]

You should investigate CFS or Chronic Fatigue Syndrome, but I warn you, finding a doctor who understands the condition, doesn't dismiss you because you bring up the name, and is willing to treat you, with respect also, may be a little hard. You may be in an area that has a lot of doctors that are up to speed on the disease, but do your own research, so you can spot those that don't know what they are talking about. See Healthrising.com for news and articles on Fibro and CFS. Good luck. Btw, I live in NC, and it's difficult finding a doctor to treat that takes insurance.

 

[Auriel]

Your a peach too, a sweetkamie peach
❤

 

[Auriel]

The best emotional help I found is here . Both reading about and expressing my own emotional ups and downs is helping a ton.

You forgot to add the fun we have too with the rather cool memes and jayc-muscles riddles ( funny helps me loads)

 

[Auriel]

My partner keeps telling me he is going to wrap me in bubble wrap, lol

I love that, it's so sweet

 

[sweetkamie20]

You forgot to add the fun we have too with the rather cool memes and jayc-muscles riddles ( funny helps me loads)

The funniness makes it all 10 times better, Peachy . I do happen to like getting emojis as well . Now, about that @JayCS i believe I need to create our riddles rough draft so you can put finishing touches on it. Then JayCS intellectual rabbit hole journey begins

 

[Auriel]

Love it

 

[sweetkamie20]

Love it

It's in your messages now

 

[JayCS]

(probably not the best kind of yoga because it was a fast series of movements). Though I personally have no qualms with yoga, I have Christian friends that consider yoga a spiritually compromising activity. The Bible says the best thing to do in circumstances like those is to respect how it makes them feel so no yoga for me

(A variety of thoughts, put mainly as questions - this is no place to answer them, if at all per pm.)

I know where you're coming from. When people are stuck between and confusing the Law (& Fear) and The Love. Between blind obedience to them or 'overtaxing' them, a middle path may be successful & loving from there to Love in Freedom in slowly convincing just by uncompromisingly showing Passion.

Treatments: Where do we draw the line? Yoga, acupuncture, tai chi / chi gong but also homeopathy, even "wrong' herbs, meditation, Emotional Freedom Technique, relaxation exercises, psychotherapy ... or the radical form of any "human" treatments.... Would we need to be considerate if it makes others feel bad if we use human treatments instead of relying on prayer...?

Bible: Where did Paul draw the line when it came to beliefs much nearer to home, whilst Peter 'had respect how it made people feel'? Peter refrained from eating meat, because others feared it might have come from culturally dubious sources, started keeping circumcision as prerequisite. Paul chose Freedom rather than Fear. "Check out everything, and keep only what's good."

Yoga: What we call "yoga" isn't yoga at all. It isn't even Westernized like Western Buddhism. Usually they are just simple exercises completely stripped of all ancient philosophical mindset. Any breathing or relaxation or mindfulness done are like the exercises - "soul-less". If these reach our soul then not any kind of "Yoga soul" (which is a term which doesn't fit), but our very own soul with its own mindset. Real Yoga is actually 'only' the philosophical mindset and any exercises are just one expression of that, a tool. So doing yoga instead of Yoga is actually just "exercises" - a tool good for the body, for the mind, but neutral for the soul. Imagine a book of exercises without labels. Techniques aren't affixed to a culture. The nun Hildegard of Bingen in the 12th Century was a brilliant herbalist as well as all rounder ('polymath') for music, poetry, natural history, theatre, leading and establishing monasteries.
A friend gave me a yoga back exercise DVD-book when fibro started. First I scoffed it off, then seeing nothing else was helping, I had a go and realized actually most of the exercises were good for me, at least for reducing or preventing local pains. Some time I started wondering how these can be real yoga, knowing a bit about it and that many of these were just normal physical therapy exercises that I'd learnt in the 80s for my back. Then I looked in the introduction and that said: this wasn't - exercises taken here and there, called yoga to give a sort of direction based on a kind of exercise people expect.

Someone was glad when I said I often pray during acupuncture and it's good for me if I remember. Same there - that can be also done out of Fear... or Freedom.... Which of these has a Basis?

So I switched over to pilates and the Wii Sports games. But tasks based on muscle exertion just wear me out and usually turn into a bad flare. Sometimes I get lucky and the flares are just half flares and sometimes no flare. But I am leary of doing anything one might call exercise - house stuff keeps me plenty exhausted. Walking is super boring to me. Even if it wasn't Id still conserve my energy for essentials and not traditional exercise...

Not sure - sounds like you haven't discovered all the enormous middle field yet?
Or pacing, in tune with your sweet spots? Examples:
Walking is boring to you: I can't even do that usually... But: when I stopped going to my PT in January, I managed to do >5 hours of self-applied physical therapy every day, most just while sitting, often typing, some in bed to be able to lie or sleep better. Anything with slightest exertion I did (& do) just a few minutes, with longer breaks, but many times during the day. Like a smokers' break. After a while I realized most of this isn't necessary, as my local pains stayed down to 5-10%, so now I only need 1-2h a day of "PT" and they've stayed down. Mainly stretches and exercises, but also incl. "relaxation" and breathing exercises of several kinds, lying with a cushion under my hunchback, massage gun, and very occasionally I can manage a 4-7 minute workout. I don't know how come, but I've kept all my muscles.

Combining both the 'moral' and the 'capability' aspects:

So I wouldn't do yoga or tai chi or qi gong classes or longer stints anyway. Just a few exercises and stretches which are good for me. ;-). Acupressure: Just press on some of the points. And discover for yourself if these help or not. What's wrong with discovering how our body works?

And if anyone still asks me if it is necessary to do these "strange" things, I ask:
Please can you tell/give me an alternative I haven't tried yet that will help me? I'd be glad to do it! Or ... do you want me to suffer?