Recently diagnosed

[MountainGirl]

That is one great kid you raised Does he know where he’s heading for uni?

It’s great you’ve already identified some things to take a leave of absence from. I think if you do give yourself a break from all non-essential things for a bit it will make clear which time investments you truly want to make. Honestly, it wasn’t until I shut down the noise of my drive and guilt for not doing more that I got a real opportunity to get better.

If you’re up for sharing, I would love to know about the nature of the organizations you’ve participated in. I’ve mostly been involved in child advocacy through the Guardian ad Litem Program. I’m extremely fortunate to never need to work (so long as the economy doesn’t tank). We live on a thrifty budget though so I would welcome an opportunity to earn some money building a website or something. I’m still thinking through what other options there might be for me…

I do hope you let your kids help - kids do find it rewarding to help a parent! In fact, it can hurt their spirit if you don’t ask for help after they have offered

We don't know yet, but I'm also bracing for the fact that he may choose to live with his dad full time once he's 18. I get that it's easier to have a single house instead of two. He is an incredibly young adult. My 15 year old helps too, but not nearly to the extent my eldest does. For example, I said I would start dinner in a half hour when we were relaxing. I didn't say anything when I got up, but when I turned around in the kitchen, my 17 year old was coming in to wash his hands and help me.

The organizations I volunteer with currently are: library board trustee, board member for our local LGBTQ+ youth group, Co-Chair for an arts and culture society where we provide free programming for residents of our city (I host the photography series every year), and I am a pet photographer for a local rescue agency. I let my role as vice president for our local photography club go in June.

 

[MountainGirl]

I can’t say I experience that. I wake up consistently with a sinus infection related to allergies- I think laying down and sleeping gives the allergens a chance to work overtime. Could your throat be related to allergies?

Likely it is, I have the windows open in the summer. It's just something I've noticed a lot during Covid. I have to pass a fit for work test every day (I work in a hospital), so I became far more aware of how I feel and if I am "fit for work" over the last couple years.

 

[sweetkamie20]

Likely it is, I have the windows open in the summer.

It might be worth looking into some allergy meds. I just started because my fibro diagnosis might actually line up better with Mast Cell Activation Syndrome. Apparently, H1 Antihistamines (Zyrtec, Claritin, etc.) can help that. Indeed, I am feeling significantly better! Time will tell

We don't know yet, but I'm also bracing for the fact that he may choose to live with his dad full time once he's 18.

For example, I said I would start dinner in a half hour when we were relaxing. I didn't say anything when I got up, but when I turned around in the kitchen, my 17 year old was coming in to wash his hands and help me.

What a gem for a son

The organizations I volunteer with currently are: library board trustee, board member for our local LGBTQ+ youth group, Co-Chair for an arts and culture society where we provide free programming for residents of our city (I host the photography series every year), and I am a pet photographer for a local rescue agency. I let my role as vice president for our local photography club go in June.

Wow! You are an ACTIVE person! What a variety of endeavors. Those agencies have been very lucky to have someone like you. I binge watch so many animal rescues on YouTube . So many precious stories of adoptions. I won't admit that sometimes I shed a tear, but I won't say I don't either

Hope some day you feel up to updating us on how things are going or check in if you have questions .

 

[JayCS]

But another question for everyone: is it common to wake up feeling like the beginnings of a cold is coming on? Like a raspy throat that doesn't turn into a cold?

It might be worth looking into some allergy meds. I just started because my fibro diagnosis might actually line up better with Mast Cell Activation Syndrome. Apparently, H1 Antihistamines (Zyrtec, Claritin, etc.) can help that.

Whoops, overlooked that, thanks sweetkamie!
A raspy throat, with or without sinus burning, stuffy nostrils, esp.. at night.... For me they seem related, and like sweetkamie's suggested: allergic or immune system (MCAS) - the severe sore throat was one of my many symptoms after each jab, for several weeks. I also wasn't sure whether it was going to develop into a cold, and was a bit anxious about it, but realized after a few days it was slightly different.
As always I treated this sore/raspy throat with alcohol-based Calendula essence, which seemed to clear it quicker, as it sometimes stayed or acted up at daytime too.
I like = agree with the healthfully take on stuffy nose at night for the sore/raspy throat as well:
"If you wake up with a stuffy nose and you don’t have a cold or the flu, you may be dealing with allergic or non-allergic rhinitis.
Your nasal congestion could be caused by dust mites, seasonal allergies, pet dander, reflux disease, hormonal changes, or chemicals in your environment like secondhand smoke.
Take steps to reduce your exposure to the offending irritants by keeping bedding clean, keeping bedroom fibers like carpets and upholstered furniture to a minimum, and keeping pets out of the room.
Air filters on your AC system and vacuum cleaner will help, but you may want to talk to your doctor about antihistamines, decongestants, and natural remedies that will lessen your symptoms."
For sore throat at night, healthfully isn't quite as good I feel, but they point not only to the allergies mentioned above, but the connection to postnasal drip, which can come from those or also something else, dry indoor air, and GERD.
I do think there may be a connection, but in my case all these are fairly separate from one another.
Dry indoor air I'm contending with, cos I know (NOW!) that some good recent studies found that dry indoor air is actually better and not worse for nostrils and I think throat too. We've always been taught the wrong way round.
These all get better when I air in every sleep break, which may help mold, dryer air, dust etc. but that won't be your problem if you're airing all the time....

Indeed, I am feeling significantly better!

Wow, great to hear that loud n' clear! So you're on one of them at the moment? Morning or evening?Evening was better for my sleep, even tho the 2nd gen. ones you've mentioned don't make us as sleepy as the older 1st generation ones. As ever tho I prefer hunting for triggers and keeping clear of meds.

 

[sunkacola]

hello @MountainGirl .......I wake up with that sore throat and swollen glands thing fairly often, and it disappears after a few hours at most. I have been told it is most likely a result of my sinus conditions, which are not good and cause post nasal problems. However, I have always had the sinus condition and I didn't start getting the sore throat and swollen gland thing until a few years ago.....so there's no way to know if my sinus thing is worse, or if it is fibro.

You are on some very valuable and worthwhile boards! I can understand why you don't want to leave them. You may find, however, that you will have to back off from one or two of them in order to have time enough to take care of yourself. I suggest thinking about that, and choosing which one you would drop, in case you decide you have to do so, in order to prevent your having to make that decision later when/if it is necessary.

Most people with fibro cannot sustain a load such as yours. If you can, and take good care of yourself at the same time, then great for you! I wouldn't assume you have to cut back, but see how it goes. Remember....and this is important....if you wear yourself out trying to do it all you won't be any good for any of them, and cutting back is better than having to give up everything and stay home!

So, start now to take all the measures you can to take the best care of yourself. If you start feeling fatigue, let go of something (at least temporarily) and rest. This is vital. If you take really good care of your health, your body will have the best chance of doing well.
Please read and follow some of the advice I give in this post:

My advice for managing fibromyalgia (especially for newcomers)

I am not a doctor or anything, just a person who has lived with fibromyalgia for several years now and has done a lot of research and trial and error experimentation. What follows is just basics. There are a lot of variations. You will find your own versions of everything I say, as this is not a...

www.fibromyalgiaforums.org

And let us know if you have any questions or concerns. We are here to support you!

 

[sweetkamie20]

Wow, great to hear that loud n' clear! So you're on one of them at the moment? Morning or evening?Evening was better for my sleep, even tho the 2nd gen. ones you've mentioned don't make us as sleepy as the older 1st generation ones. As ever tho I prefer hunting for triggers and keeping clear of meds.

Yeah, I decided to try the H1 antihistamine because in some MCAS literature it suggests that if MCAS is at play an H1antihistamine would likely improve symptoms. I figured if I try it for awhile and evaluate how it affects me then I might have some more insight into where to focus... We have been conscientious about air quality for a long time. It helps but hasn't resolved everything...I'm taking it at night...

 

[JayCS]

Yeah, I decided to try the H1 antihistamine because in some MCAS literature it suggests that if MCAS is at play an

"Some" literature is an ever so slight understatement... I can't imagine antihistamines missing anywhere, it's part of the questionnaire some weirdo recommended you to look at on your first day here , when you were still slightly wet behind the ears .

(Yeah, I know, you'd gone over to talking to @MountainGirl - but didn't wanna spoil the fun. )

 

[MountainGirl]

You are on some very valuable and worthwhile boards! I can understand why you don't want to leave them. You may find, however, that you will have to back off from one or two of them in order to have time enough to take care of yourself. I suggest thinking about that, and choosing which one you would drop, in case you decide you have to do so, in order to prevent your having to make that decision later when/if it is necessary.

Most people with fibro cannot sustain a load such as yours. If you can, and take good care of yourself at the same time, then great for you! I wouldn't assume you have to cut back, but see how it goes. Remember....and this is important....if you wear yourself out trying to do it all you won't be any good for any of them, and cutting back is better than having to give up everything and stay home!

I recognize that I need to cut back. I have decide where, and that is so hard. I suppose I assumed everyone felt like I do, and it was normal. I was just keeping up. I have a meeting tonight and will be giving that group the heads up that I won't be as involved going forward. As a single parent, staying home will never be an option, so going about things wisely is the choice.

 

[MountainGirl]

Hope some day you feel up to updating us on how things are going or check in if you have questions .

Thanks @sweetkamie20. I will. I already know this group is a great one to have found.

 

[JayCS]

I wake up consistently with a sinus infection related to allergies

If you mean stuffy nostrils, have you tried acupressure to open them?

 

[Madrooster1964]

Greetings all. Well done to all who post on this forum. I hope you dont mind the intrusion but I come from Aust and have struggled to find something similar to this here. I was diagnosed about 7 weeks ago by a neurologist but had suffered symptoms for many years that I had put down to arthritis and migraines - both things my father suffered from. I then became concerned that I had Parkinsons as I have hand tremors - but I am assured its Fibro. I will try to contribute where I can - but for the time being I am extremely grateful to you all for sharing your experiences and allowing me the opportunity to gain knowledge and ideas. As a male the understanding of Fibro here is non existent so its good to be amongst friends.

 

[JayCS]

Greetings all. Well done to all who post on this forum. I hope you dont mind the intrusion but I come from Aust and have struggled to find something similar to this here. I was diagnosed about 7 weeks ago by a neurologist but had suffered symptoms for many years that I had put down to arthritis and migraines - both things my father suffered from. I then became concerned that I had Parkinsons as I have hand tremors - but I am assured its Fibro. I will try to contribute where I can - but for the time being I am extremely grateful to you all for sharing your experiences and allowing me the opportunity to gain knowledge and ideas. As a male the understanding of Fibro here is non existent so its good to be amongst friends.

Hi Rooster ;-) and welcome from a fellow male...
Not sure why you think you may be intruding - we're made to be intruded upon!
Maybe cos you come from "Aust" - not sure if that's Australia? or Austria? ... or how you mean you have been looking for similar things "there"... I know here in Germany there are forums but they don't "work"... This has always been my experience, since the mailing lists in the end 90s, maybe a mentality thing, but I think we can best find like-minded people if we "go international", which unfortunately probably creates a language barrier for many who aren't good at English.
You wouldn't even be intruding if you didn't have fibro but a good healthy interest in it for some reason,
but as you have been diagnosed, it seems after enough tests for other conditions you may also have, then it's definitely a great place to be here. As you're probably still coming to terms with the new name for your "ailments" and all it entails, @sunkacola's Big Advice Post is a really good basic start, if you haven't seen it yet.
I don't think being a male makes that much difference, some differences have been found in studies however. As long as it doesn't delay a diagnosis - I was lucky that it only delayed it a few months. But I do think it's important to learn to watch our symptoms closely and thus admit to pain which traditionally is said to be even less of a male quality than a female one.... Sometimes it used to be and praps occasionally still is good to shrug it off and it's always good for everyone not to catastrophize about it.

 

[sweetkamie20]

Greetings all. Well done to all who post on this forum. I hope you dont mind the intrusion but I come from Aust and have struggled to find something similar to this here. I was diagnosed about 7 weeks ago by a neurologist but had suffered symptoms for many years that I had put down to arthritis and migraines - both things my father suffered from. I then became concerned that I had Parkinsons as I have hand tremors - but I am assured its Fibro. I will try to contribute where I can - but for the time being I am extremely grateful to you all for sharing your experiences and allowing me the opportunity to gain knowledge and ideas. As a male the understanding of Fibro here is non existent so its good to be amongst friends.

Hi, madrooster Glad you found us! Love your name . You're never intruding here by the way

I'm sort of new here, too. From one newbie to another I have to say that I found so much help (physiologically and socially) here, too, especially when compared to the medical community so don't hesitate to share. I got advice here in 2 weeks that I couldn't put together in 18 years! It's also been a surprise to find many super awesome people that can totally relate to me and point me in the right directions.

You'll probably get more advice than you hope for and likely make good ground along the way.

If you want to get a taste of our shared experiences with a touch of humor, you should check out our new post

Memes: A Touch of Humor for Us Fibromites To get notifications of new memes, just make a comment somewhere on the post

Welcome, madrooster . Here is one of my fav non fibro memes - a mad hen

 

[sweetkamie20]

Greetings all.

Oh, you might need to click on the mad hen pic to see the words

 

[Madrooster1964]

Hi Rooster ;-) and welcome from a fellow male...
Not sure why you think you may be intruding - we're made to be intruded upon!
Maybe cos you come from "Aust" - not sure if that's Australia? or Austria? ... or how you mean you have been looking for similar things "there"... I know here in Germany there are forums but they don't "work"... This has always been my experience, since the mailing lists in the end 90s, maybe a mentality thing, but I think we can best find like-minded people if we "go international", which unfortunately probably creates a language barrier for many who aren't good at English.
You wouldn't even be intruding if you didn't have fibro but a good healthy interest in it for some reason,
but as you have been diagnosed, it seems after enough tests for other conditions you may also have, then it's definitely a great place to be here. As you're probably still coming to terms with the new name for your "ailments" and all it entails, @sunkacola's Big Advice Post is a really good basic start, if you haven't seen it yet.
I don't think being a male makes that much difference, some differences have been found in studies however. As long as it doesn't delay a diagnosis - I was lucky that it only delayed it a few months. But I do think it's important to learn to watch our symptoms closely and thus admit to pain which traditionally is said to be even less of a male quality than a female one.... Sometimes it used to be and praps occasionally still is good to shrug it off and it's always good for everyone not to catastrophize about it.

Hi JayCS,

I'm from Australia - and sadly it seems that the closest I have been able to find here are forums discussing pain, not Fibro specifically.

I am slowly looking through some of the discussions here and admit to being fascinated - there are so many stories that I can relate to - and others of course which (fortunately) do not seem to have impacted me - at least not yet.

Thankyou for the welcome - I look forward to learning and contributing along my Fibromyalgia journey.