Diagnosis on top of diagnosis/Coping questions

[EzbG]

Hello and welcome!
I have both Fibro & severe back pain, from a back injury & subsequent failed surgery. For the last 18 months, my body has not been very kind to me. And “pushing through” seems to make everything so much worse. If I push through, I can barely move the next day. I’m forced to, as I have 2 very small dogs that will make life stinkier if I don‘t.
I finally found that I am ALSO dealing with long covid, and PEM. And “pushing through” is the worst thing you can do! I am learning to take things in tiny bites. Instead of “cleaning the house” I dust. That’s good enough for the day. When there is yard work - 30 mins is it… that includes the time to take out & out away tools. So, actually only 20 mins most cases. Hubby is now learning to step up, and do what I’m not.
I’m saying this as an “oldster” in the Fibro game: you can eat right, get enough rest, etc - and STILL have a bad day/week/month. Just learn to ”drop back & punt.” (Find a different way to the goal)

 

[Auriel]

YES! that's how I do things now, (bit by bit) before fibro, I could have done it all in one go, but now I do it like you say bite size chunks, (ps glad hub's stepping up)

 

[EzbG]

You don’t need help cleaning your house? Or doing laundry at times? Or running errands? For me, even sweeping and mopping my studio floor can throw me into a fibro flare for days. And driving can even hurt sometimes.

I am fortunate to have a mate, that helps with the errands. But- he’ll deflect when asked to do housework. “I’ll never do it up to your standards.” (Military - born & raised - THOSE standards). Right now - if it isn’t dusty, it’s up to my standards. It’s done.
I haven’t been able to vacuum or mop in years. Too much pain for days. So, I have robotic vacuums. There are combo vacuum/mopping units now, too. And driving - that reason escaped me for a while - until 1 particularly bad trip - the roads were really rough. And I struggled just to get out of the car!! Aaahhhhaaaaa!!! Our bodies make micro moves to stay “stable” when driving or riding. It’s like over exercising when it’s a long or rough trip.

 

[JayCS]

PEM

Post exertional malaise is a very fitting one for me which I often forget cos it's not used that often and I wouldn't know how to translate it to German. Whilst some German words like Erschöpfbarkeit are more easily understandable in that language than the translation exhaustibility in English (I'd think).

drop back & punt

Is punt meant like avoid, dodge, swerve, duck, sidestep? In my dictionary it says it's usually meant for speaking / expressing things, but you mean the action, right?

Our bodies make micro moves to stay “stable” when driving or riding. It’s like over exercising when it’s a long or rough trip.

Brilliantly described. But even if it didn't I'd struggle to get out of a car, cos of not having been able to move much whilst being driven. (It'd be even worse if I had to drive myself, for my mind and body - maximum stress. As it is I hardly ever travel even short distances any more. So even important things like outbound doc appts. would no longer be an option.)

I'm starting to develop moving a little bit even more regularly, and even if pushing thru the pain it seems to override the pain without backlash. That's good cos it's making me "forget how bad I'm feeling" or "I'd be feeling". Getting up much earlier for more daylight, giving me more energy, developing my slow energy and now moving a little bit more - completely changing things once again.

(Yet yesterday I got a severe visible histamine reaction from eating white beans which made me have to switch over to anti-MCAS mode and take more GABA plus after a hot flash a cold shower, which helped that completely unexpectedly - but it's good getting more and more control and it gives me the feeling despite other new symptoms that I'm taking more and more control and will never stop doing so, simply because I remain flexible and creative in the way I do things.).

 

[Amesalot]

So, I have robotic vacuums. There are combo vacuum/mopping units now, too.

Thanks EzbG for the suggestions! Unfortunately robotic vacuums would not work in my studio. The ground isn’t level. And I’ve looked at combo vacuum/mopping units even though they are out of my price range but they are very heavy and then I’m still doing the motions of mopping and vacuuming so it kind of defeats the purpose anyways right?
I’ve been trying to look into disabled services in my area to see if what others do about cleaning but haven’t had much luck. I will most likely pay for a maid to come even once a month to help. I’m trying to find one on Craigslist who will work with me on pricing for my small studio.
I’m also what most would call a neat freak. I hate when my studio isn’t clean so the build up of dust as of late has been driving me crazy. I know my family would help me but I don’t want my 70+ year old parents cleaning it or my sister who is busy with her young children and her full time job. I’d prefer to handle it myself.

 

[johnsalmon]

I have a Trans care person come and vacuum the carpets make the bed and wash the kitchen floor etc every week for about $18 - they also provide a medical car service to get to my specialist appointments ( the drivers are volunteers) they also provide a meal service at different locations (pubs etc) the bus picks you up at home and delivers you back to home. This is a government financed service

 

[Amesalot]

I have a Trans care person come and vacuum the carpets make the bed and wash the kitchen floor etc every week for about $18 - they also provide a medical car service to get to my specialist appointments ( the drivers are volunteers) they also provide a meal service at different locations (pubs etc) the bus picks you up at home and delivers you back to home. This is a government financed service

That’s amazing! I’m in the US. I’m not sure what you mean by trans care? Is that the company name maybe? I’ve been searching for a long time for government services in my area as I’ve been on disability for about 10 years due to other health issues. Things have just gotten exponentially worse, more unmanageable, since the fibro started up.
There are services available for those who are elderly and on disability or those who are on disability and have just been released from care somewhere, ie they were in a hospital setting for whatever reason. There seems to be little to no resources available for singles disabled people who are trying to get by on their own. I’m not looking for “handouts” as some like to say But I do need help. And it’s difficult to find living on such a low fixed income.
Thank you for your post! I’m happy to know that somewhere they are doing things correctly.

 

[Auriel]

@Amesalot you should be getting other types of support (be it financial or help wirh things you need) do you have an equivalent of social services you can ask about company's organisations to help with whatever you need?, or maybe a version of citizens advice you can contact? (I'm u.k so I don't know the us/Californian names for those types of company's/organisations) ps your cat looks so much like my late cat smokey, (he was so gentle, while the others chased mice, he'd be tryna catch butterflies ) no lie, ️

 

[johnsalmon]

That’s amazing!

down here we have a pension system for seniors I get over $1000 a month free doctors visits ( I have to pay for private specials but the government repays a percentage back to me. My scripts are low cost my partner is a Koori ( first peoples) and she get further reduced services ie free scripts Our system is very good down here we still have a long wait for hospitals etc due to covid . I live in a rural town it has 3 medical practices with a total of around 18 doctors and a hospital. The government has passed out senior care to several groups - trans care is one of them Our Medical system cost $50billion a year to the government(Australian taxpayers) our disability service NDIS cost some $35 billion a year the NDIS is for those with disabilities (sounds high value but then the nuclear subs we are buying from the USA and UK is about $42billion a sub.) we sit around the 4th best medical care country in the wold

Its just as well as we have so many things that can kill you down here - snakes, spiders, jellyfish sharks etc etc

 

[Caylee]

Hiya. I would go out on a limb and say that every single person with FM has experienced your scenario to some degree or other.

It took me 5 years of testing and crossing things off a list before FM was even thought of. My doctor didn't originally even believe in FM, it was that new! If I may make a suggestion, ask for a referral to a Rheumatologist as they are fully equiped to deal with this.

Honestly, if your doctor thought it was "all in your head", they clearly don't take you seriously. Too much is known now for that to even be a thing.

I would be hitting the internet to look for another GP. This person is your front line medico. Unfortunately, nowadays, especially in Canada, you have to advocate for yourself. There's a new generation of doctors, and frankly they're lazy. Not all, but those diamonds are rare to find.

 

[Caylee]

"...- fibromyalgia is a GOOD reason to go to a pain clinic to learn how to manage the pain - its will still be there but you can manage it."

I have been at the Pain Clinic and Rehab Centre at my hospital for years. At present, I am taking an intermediate CBT class (Cognitive Behaviour Therapy/Theory — depends on who you ask lol). I find it very helpful.

 

[Shel]

That's, ok ( I would have done it sooner, just been recovering from operation) it's really comforting place to be (plus you get to learn things about the other members, and it's nice)

Hi, Auriel. How are you feeling? Have you gotten any results back? I’m continuing to pray for you.

 

[Auriel]

Thankyou, , no results yet (they said it would be a week but it seems we're going into week's) .im ok (in myself ), but somethings just not right?

 

[Amesalot]

And “pushing through” is the worst thing you can do!

I believe there are certain times when “pushing through” is good for me. I suffer from bipolar and anxiety. I need to push myself to get outside each day and be social each day, in some form. If I miss a day, that’s ok. But if it turns into two days, then three, suddenly it’s a week, then I can’t bear to leave my studio and feel an intense anxiety over just walking out the door or getting a glimpse of a neighbor. It’s my mental illness issues that I have to push through.
I’m learning with fibro, there’s a fine line between when is a good time to push through and when is better to relax. It’s all a balancing act and still new to me, especially compared to my journey with my mental illness struggles. However, I don’t think pushing through is the worst thing. I think it’s still good to give myself challenges to overcome, even if they’re smaller than they used to be, and push through to see the finish line. But I understand it’s different for everyone.

 

[JayCS]

Cognitive Behaviour Therapy/Theory — depends on who you ask lol

Hiya - never heard of CBT also meaning theory, thanks for that pointer. Just it then means the theory underlying the therapy. So someone taking a psychology course will be learning about the theory of it and necessarily about the practical side too - so there CBT will have both meanings. But someone actually doing therapy (as I have done) isn't learning about the theory, so in that case you'd be doing CBTherapy.
The theory being very generally that change for the better can only come about if you combine theoretical knowledge and practical activity and gear them towards one another. Theoretical knowledge being the cognitive bit, understanding what's gone wrong and what mindset is necessary for it to improve, practical activity to try out new things, including things that hurt to change, things that we believe is part of our character ("no one can change" mentality), and dove-tailing the two by seeing and feeling how you fare, discussing how far to go with it when, reflect strategies to overcome the problems that arise etc.
As I'm someone who is constantly working on himself and changing big parts of my life, CBT is something that now comes easy to me. Inside of 2 months I've become an outside early bird and garden man, something I'd've thought impossible even a year or 2 ago. But without CBT I wouldn't have been able to become like that. Of course a part of me is remaining constant, but I never know which are until I try.
That was my try at the theory of CBT, but I've never learnt much about it, it always just seemed logical to me.