New with questions

[MNP]

Hi senorzala!
Yes! My crp levels are normal…thankfully. I have had lots of blood work done. When I was first diagnosed with fibro…the Rhuem. I saw said all of my inflammation markers were normal.
There were a couple of other blood markers that were irregular that I should follow up on…ugh!
Thanks for replying to me!

 

[MNP]

Dear JayCS,
Oh my gosh! The idea of going into those fears and yet practicing deep relaxation at the same time is mind blowing to me! I am so glad that works/worked for you…and I would love to try and figure out how to do that!

I have listened to a few mindfulness podcasts (and I will continue)and hopefully that will help me learn to focus more in the present instead of the future! A counselor I am working with suggests an exercise of distraction from anxiety where you focus on three things you see, three things you hear, etc. with your five senses.

Thanks for the suggestion of ACT therapy. I have seen that on several of your posts and I will look into that!

I can’t thank you enough for your wonderful posts!

 

[fimi]

Just a quick welcome to the forum from me too @MNP

 

[MNP]

Thank you!

 

[Auriel]

Hi MNP, I've just only found this post! , oh, welcome to the forum ️ , ( I hope you've found it a helpful place to be)it's nice to be able to connect with people with the same/similar conditions (I find it comforting, we have a giggle sometimes too, but only on certain threads )

 

[sweetkamie20]

Dear sweetkamie20,
Thanks so much for your reply! I find it can be pretty frustrating when symptoms change to figure out what the heck is going on and then to figure out how to deal with it!

Yeah, if the changes led to more manageable pains we would perhaps celebrate and not mind! lol

When you said you are getting a grip now…are there specific strategies that have helped you(if you want to share them)?
Thanks so much!

Your path might differ from mine since my arthritis can be attributed strictly to acute injuries and my FM symptoms don't appear diet-related, etc. I also notice people with FM-related stiff joints encourage each others to keep moving even if it's just a little. For me, that was not the case. I got a grip on the lead in my veins, flu-like symptoms and burning from the inside out like this:

It was a two-part process for me: Phase 1 and Maintenance Mode. I was in a really bad spot in terms of relentless pain so perhaps my Phase 1 was more extreme than someone else needs. It worked, though, and it worked fast enough for me to see I was heading in a positive direction.

I can sum up my Phase 1 with one thing: DON'T PUSH MYSELF IN ANY WAY DURING THIS PHASE. Don't push myself emotionally, physically, socially, even mentally (focus-wise). Physical exhaustion (which took nothing more than doing dishes) was a nightmare. Emotional conversations and straining to focus triggered flares for me. Advice: In Phase 1 say "no" to social engagements (or "maybe"), say "later" to chores as often as possible, say "help" anytime someone can help. You get the idea. Regard your body as a fragile ecosystem which is very sensitive to activity.

Phase 1 ended when I had found and sustained a decent equilibrium long enough to feel certain I could reobtain this equilibrium if my attempt for Maintenance Mode backfired...

After weeks at a decent equilibrium had passed, I felt pretty good so I slowly reengaged in "normal" life. I needed to figure out the signs that I was pushing too hard, to get a good idea of my limits. And that's exactly what I learned - no matter what, spending 4 hours in a socially charged atmosphere leads to a 1-day malaise. Doing that 2 days in a row leads to a 2-day aggravated malaise. Doing this 4 days in a row leads to a weeklong flare for me.

My symptoms seem to respond best to parasympathic system support or adrenal gland support. Also, sinus infections/stuffy nose are immediate flare mongers.

I wish I could say, "Here! This will work for you!" The one thing that helps all of us is to pay attention to when we feel worse and work off of that.

Keep us posted. I really want to hear how your process is going!

 

[JayCS]

going into those fears and yet practicing deep relaxation at the same time is mind blowing to me!

Yep, it is mind blowing: each baby step a small en-light-enment, a part of becoming whole -
such a relief when relaxing each tense part of the body (esp. jaw/face) sensed in regular body scans...!
But I like recalling a moment of enormous stage fright where I focused on the Now and realizing there was absolutely no threat, the pressure fell. Of course like relaxing my jaw that has to be continually repeated..
But each experience can spawn the next, and our peace slowly grows, surprisingly, incredibly.

I have listened to a few mindfulness podcasts (and I will continue)and hopefully that will help me learn to focus more in the present instead of the future! A counselor I am working with suggests an exercise of distraction from anxiety where you focus on three things you see, three things you hear, etc. with your five senses.

Ah, the 5 - 4 - 3 - 2 - 1 grounding method... I know many varieties of it, and know it helps others and can imagine how, but it hardly helps me, I need to go inside myself with body scans etc. like in Yoga Nidra/NSDR.

 

[MNP]

Hi Sweetkamie20!

Oh my goodness! Thanks for your detailed description! You are soooo brave for instituting your phase 1! And I am so grateful it worked for you!

I still try to pretend that I can do “normal” things…but the price is getting too steep now. My husband and I have a 15 year old daughter ( we adopted her when she was 2 and 1/2) who is active in sports and other teenage fun things. She does not know about my fibro yet. I feel bad about having fibro…I don’t want her to feel she has a lame mom. She already feels different because she is adopted, has older parents and because her skin color does not match mine or my husbands’. Her friends’ parents do not have any health issues that effect/affect? their day to day functioning and I don’t want to add anything else to her psyche that makes her feel different.

Yeesh! All that said…I know I need to get over this way of thinking….tell her what is going on… and then help her cope with any feelings that come up about it.

It is just too difficult to fake being normal right now.

I truly think I need to do what you did (phase 1) until hopefully I can get out of this flare….it is worth a try anyway.

I can’t thank you enough for your post!

 

[MNP]

Hi Auriel!
Thanks for replying! Your reply was so sweet and comforting!

 

[MNP]

Thanks JayCS!
How long did it take you to learn to do body scans and successfully relax the tension filled areas?
Yeesh! I have been trying to do this…so far not much success but I am gonna keep at it!

I love your sentence…”but each experience spawns the next….”

I haven’t figured out how to pull out specific parts of text to respond to yet

Hope your evening is restful!

 

[sweetkamie20]

Hi Sweetkamie20!

I still try to pretend that I can do “normal” things…but the price is getting too steep now.

Hopefully this is your bottom floor

My husband and I have a 15 year old daughter ( we adopted her when she was 2 and 1/2) who is active in sports and other teenage fun things. She does not know about my fibro yet. I feel bad about having fibro…

Thats so wonderful!!! Thank you for opening your heart to a child .

I don’t want her to feel she has a lame mom. She already feels different because she is adopted, has older parents and because her skin color does not match mine or my husbands’. Her friends’ parents do not have any health issues that effect/affect? their day to day functioning and I don’t want to add anything else to her psyche that makes her feel different.

Its a tough position to be in I have worked with/for adopted kids since 2005. They do have special vulnerabilities to insecurity from what I can tell there is not much you can do for those adoption insecurities but support her in processing her emotions and when she decides to search for her birth family give her your assistance. (No matter how wonderful a family adopted kids are raised in they seem to all want to meet their birth families or talk to them at least. It's most certainly not a reflection of the parents )

Back to the present: sounds like your teen believes she is different so could the longterm solution be not to make her feel more "same as everyone else" and instead feel better/neutral about her differences? Just being a little funny here: it's too late to lie and tell her she is not adopted and too late to convince her you are the same age as all the other parents so, here we are. She knows she "is" different. Just need to help her realize "different" is not bad?

As for health: Her friends parents probably do have health problems but they just aren't broadcasting them - anxiety, depression, epilepsy, diabetes...all stuff that there's medication for and people can conceal. You've got a health issue that there's not medication for yet so it's gonna take you some time to figure out how to feel better. Nothing real weird about that. This is just a temporary phase. And it will comfort her to know FM can't kill you.

Not telling her for a while could make her more insecure because there are "secrets/hidden topics". She might sense things are off but since there is a vacuum of information she might project disturbing conclusions into the vacuum. Conversely, if she is told the hard truth by her loving, stable, encouraging parents it will give her a chance to experience the joy of helping someone she loves (not be self-centered), insights she needs in order to weather her own storms more easily, and perspective.

In summary, maybe a good idea is to describe what FM is, how it affects you, and what she can expect? And assure her that you are learning how to feel better and you won't die from it? Just my thoughts, perhaps what I would do.

I truly think I need to do what you did (phase 1) until hopefully I can get out of this flare….it is worth a try anyway.

I hope and you get a chance to do a version of Phase 1 that works for you!

Please let me know how you are doing as able . Don't suffer in silence for sure! I attribute my quick progress emotionally and physically to checking in with people here

 

[JayCS]

How long did it take you to learn to do body scans and successfully relax the tension filled areas?

Hehe, I first "learnt" meditation, autogenics / autogenic training, progressive muscle relaxation, image techniques, body scans when I was about 16, and I still don't find any of them at all easy, they don't come natural to me at all. I can/could guide others really well, know all the tricks, and while doing that could do it a bit better, but when I do it alone for myself I'm often just not concentrated. Ally Boothroyd's guided NSDR/YN help me most at night, and using hers regularly help me a little bit to do it alone.
In the daytime I continually go one step deeper into relaxation, sometimes it feels like there's about 5 stages. I can often do it best in short moments while doing another activity. I often need to multi-task to keep my brain on track anyway, like I can listen to something better if I'm doing something else at the same time, or at least if I write down what I'm hearing. My best relaxation training is jaw pain - I can stop it, if I can relax it deep enough, as soon as it starts nagging again, I have to sense my jaw muscles again, and often they are just as tense as before.

I haven’t figured out how to pull out specific parts of text to respond to yet

There's loads of ways:
You can mark texts (even from various posts), then click on "+quote" that automatically comes up, and repeat that, finally go down to the answer box and click on "insert", then you can change the order, and then write a reply under each bit.
Or you can mark one text portion and go on reply and only that portion will be taken up.
If you then want further texts, you can leave your cursor where you want them, then go up to the text and mark it, click on the "reply with quote" that comes up, and only those bits will then be inserted as a quote where the cursor is.
Or you can reply with quote and delete the bits you don't want and divide it up with "return", you can also copy and insert them around, but that can get tricky.

Hope your evening is restful!

Hmm, was it? I think it needed to be and I'm not catching up enough with my energy spiralling down...
So I'll try again this evening... At least I stopped table tennis after 2 games, with a big break, all too much.
I'll mark your wish as an inspiration to even more self-care now... Thank you!

 

[cookiebaker]

I could not agree more with what Sweetkamie has said... You do need to tell your daughter - just be honest with her, dont try to hide it.
She probably already knows, or at least suspects, there is something going on, she just doesnt know what, and in a situation like that, all sorts of crazy things can cross the mind in the absence of real information.

Not to mention that telling her what is going on, and reassuring her that you wont die from this can also ease your burden - by removing the stress of trying to hide things and act "normal" when you are hurting so much. Stress is a major contributing factor in flares.

We also need to learn to forgive ourselves for not being perfect, not being able to accomplish all the things all the time. I think that is probably the hardest thing to learn.. forgiving ourselves.

 

[sweetkamie20]

in a situation like that, all sorts of crazy things can cross the mind in the absence of real information.

This is perfectly stated. I know when I was young I came up with some real weird conclusions in the dark about what was going on

Not to mention that telling her what is going on, and reassuring her that you wont die from this can also ease your burden - by removing the stress of trying to hide things and act "normal" when you are hurting so much.

Great point

We also need to learn to forgive ourselves for not being perfect, not being able to accomplish all the things all the time. I think that is probably the hardest thing to learn.. forgiving ourselves.

So haaard. Weird to acknowledge it but sometimes it's burdens that set us free...

Yeah, I'm thinking definitely pointing out that other kids and parents have stuff they are medicating/managing is a manifold blessing to kids- they start to learn health challenges aren't the end of the world nor uncommon so don't get freaked when you get one, appreciate the day, be kind to people - you never know what's wrong, dont assume you're alone in your situation. You aren't even if it looks like you are. Just like your kid wouldn't go to school telling everyone she has epilepsy or her parent does, none of the other kids are going to do that either. So, even though you're older, it doesn't mean your situation is worse....

 

[MNP]

Dear sweetkamie20,
I cannot tell you how powerful and meaningful your last post is to me! Gracious! What are the odds that I would meet someone who suffers from fibro AND who understands the challenges of adopted children! Thanks to dear sweet God and to you!

You have shown me a whole new way to look at her life…embracing her different story!!!!

She is from Nepal. Very few adoptions occur there! It was truly a miracle. At the same time…she will prob never know her biological family.

And yes yes yes to your thoughts on the idea that she is probably sensing things and creating her own understanding! Also, I totally agree that dealing with “adversity” can help us all learn to face challenges in more positive ways and help us to be more compassionate!

Thank you for sharing your wisdom and helping me take an important step. I really don’t like to cry..but tears of relief and thankfulness are flowing this morning!