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New member - Not new dx & worn out

Started by MatthewM, November 01, 2018, 12:08:15 PM

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MatthewM

Hi - I'm Matthew, 44 years old.  I was 1st dx in '08, but had symptoms maybe early as '03.  I only recently accepted that I really had fibro in '15.  Prior to that I didn't believe that it could be the cause of all the problems I had.  I was convinced in fact that it had to be MS (despite every test/MRI being neg).  At any rate, for the last 3 years I have tried to treat it.  Over time symptoms & episodes have progressed.  

I'm at a semi-tipping point and thus decided to 'reach out' to some other men.  Medications just aren't "working" anymore / right now.  The daily joint/muscle pain + stiffness, fatigue just takes the toll.  That things seem to be getting worse weekly right now is hard, esp. after a fairly great summer.  I think like most I have to push hard to get anything done these days, whether it is spending time with kids/fam, chores, job, etc.   I really have no support.  I don't have much of a social circle anymore.  

I want to pickup tai-chi but every time I try..I just can't stick with it - I want to bike w/my kids but the effort to "get out" is daunting - I want to do elliptical but the fear of "afterward" stops me ..You get the idea.

I am psychologically "ok" mostly but cognitively all over the map and always physically in distress.  Sitting has become a major effort and is also getting worse weekly.  Either sitting/walking my knees/leg are hurting far more than I've ever recalled.  

If I could ask for anything here it would be:
1) How do you deal with pain when medication stops helping?  (Candidly I just want the pain gone and am either too lazy or stubborn to consider suggestions doctors have made.)
2) How do you cope with a "desk" job that has expectations you can't meet as well as used to?
3) How do you get understanding, much less sympathy from a spouse & children who just can't understand why you seem like a lazy <blank>hat?
4) How do you cope or understand having fibro as a man when most people see it as a "woman's" disease?  (This is mostly just my curiosity)

Obviously I need to read this forum as I suspect 99.9% of my experiences have been covered & covered & covered.
If you have some links to get me started that is appreciated.  If you just want to say "I feel ya man" that is great too.

For ref I take: Lyrica 400mg, duloxetine 40mg, modafinil upto100mg, tramadol upto 100mg, ibuprofen  upto 1600, acetaminophen upto 1000.  I take a bunch of other supplements.  I drink upto 200mg caffeine & I vape (heavily?) @ 2mg/ml.

Thanks for reading!  
-M

Robby

 Welcome Beads

Your experiences are the same as most everyone here. Reading the forum will tell you alot, you'll have to dig for some of the information, and some of the others may be able to help with links but my thinking isn't working.
/>----------
I will put you in the trunk, and help people look for you, DON'T TEST ME.

denny

Adjust and adapt,its the best i have.
It's a long process figuring which drugs are good for you,,then you get burn out and have to find something else.
There are great articles meant to explain to family,ect.
Most symptoms you can't even tell if it it IS fibro or not.
I like pot, if you can get it.
Good luck and welcome to the site.
Hope we can help.
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

denny

The post is a bit broken,blame the fog!
I'm trying to day-to-day Fibros a BITCH!
I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

foxgrove

Welcome to the family Matthew, :welcomeani:

As you obviously realize by now, fibro is a real handful!  Controlling, nasty, mean, cruel, can't be tamed, can't be reasoned with, if it were a government, we'd have overthrown it years ago.  Sadly, it's very very real and very controlling... and it's ours.  We have all cried many tears because of it.  We know exactly what you are talking about.

But you're mistaken... you do have a support group.  We're seriously bone tired and we often are late to the table and slow to pick up on things, but we're here for you.  You're familia... you're family.  Of course, that means you'll have to do dishes every third Friday but other than that, :biggrin:  just find a lazychair to sink into, and relax.  We got your back.

The best way to get your family onboard is to sit them down and tell them about what's happening to you.  Many people have a very hard time coming to grips with changes in someone when they can't see it visibly.  They are also emotionally attached to the person you were and it's very to come to grips with that for them.  That being said, honesty and openness are often the best tools.  There is a book called "Breaking Through the Fibro Fog" by Dr Kevin White that I find very good at giving straight no nonsense answers that you might not be able to answer otherwise.

As to your worry that this is a "woman's disease", there was a study done in Germany not long ago that debunked that idea.  https://journals.plos.org/plosone/article?id=10.1371/journal.pone.0203755  Basically it shows that there was a bias by doctors to diagnose women and not men with fibro... not fair to us but it happens... kind of like taxes and death.  So, basically, it's a fair bet that you got it, not because you've gotten a woman's disease but because you got a human disease!

Dig in and stick around.  Your fight isn't over be a long shot.  I know it's hard to carry on and I urge you to sit down with your family and talk with them about your reality and your fears.  At least that way you are all on the same page.  There is a really good chance that at this stage, you might be able to get some considerations at your job, time to rest during the day maybe?  More flexible hours? Maybe taking family leave for a week or so will recharge your batteries and let you get back at a lowered pace.

Not easy questions... keep asking them of us and yourself.  Honesty in this is huge but you'll find there might be times where caution is more suited.  Just keep us in the loop and we'll give you what we can.

Again, welcome to our crazy family.  Sit back and enjoy the free Mojitos and chips... don't worry... you don't get DUI's from vitrual Mojitos.  :biggrin:  Later skater.  :budy:

Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

tojo

#5
Howdy Matthew,

I hate to say it, but welcome to the family. I really wish that you did not need to belong to this club :(

Here are a few images that you may want to show your family, friends, boss and anyone else that just does not seem to get it. I have more if you need them. It may seem sill but they do help. And it may seem that I am stupid (well that has yet to be proven ;) for posting so many, but this way you will find the ones you need, the ones that will work the best.

Here goes!









Wow!!! that was a lot, not really. You should have seen all the full size, high def pictures I loaded when I got my first scooter from the VA. By the way to you old timers WARNING! I have a new scooter from the VA and have pix standing by Bru HA HA HA

Some of the things that you are curious about you will find lots of info by using the search tool. If you have any questions that you cannot find answers to please feel free to ask away, just find the appropriate section and fire away with your questions we will be more than happy to answer and if we do not know we will do our best to find the answer for you. As far as the pain going away, until they find a cure I do not think that is ever going to happen, but I have friends that tell me once in a while using marijuana they have been really close to being pain free without being stoned out of there gourds. A few little puffs now and then from their vaporizers and they don't hurt as bad or they are able to sleep. I can''t wait til the government makes it legal across the USA. It would be really nice if the VA would let us use it and not penalize us for it.

Your desk job, wow that's a tuffy. For you finding your limitations is very, very important. Having a serious discussion with your boss is going got be hard, a little bit scary, but you may find that they are more open to finding solutions on how to deal with you disability. But remember that it is a disability and they are required to a point to make accommodations for you. I know you do not want to hear this but it may be a really good time to find a Social Security Disability (SSDI) Lawyer to talk to . The consultation is always free and most of them get paid out of the back pay that you will receive once you are approved. It goes back to the date that you filed. And they get paid out of that and they cannot gouge you as teh social security folks will determine how much they get based on what the did for you. And there is a cap, so you will still get the biggest part of the back pay. It is a myth that you cannot file for SSDI while you are still working. Start now before you cannot work and the lack of money causes you huge problems.

With you meds not working as well as they once did, well we are all in the same bucket I am afraid. It just happens, sometimes we work up a sort of immunity to meds that we take for long periods of time. And you will notice that someone else on teh forum has the same meds as you and they work, my cocktail of medication works for me but won't work for you. Over the years I have had to work with my doctors adjusting my medications to try and keep pain and other symptoms of Fibro under at least the impression of being under control. There are other meds out there that you have not tried yet and there are lots of combinations that you have not tried. There is also studies that are proven (I thin that is correct I will have to double check BrainFog) that a non-inflammatory diet really helps a lot. I am just now finding out about this from a friend of mine that runs a Fibro awareness page on Facebook. She is supposed to be getting me more info, so please stay tuned same Fibro channel, same Fibro time for more details for information on that topic. you may be able to just Google it, I have not tried yet.

As far as men and Fibro go. It is now estimated that up to 33% of the cases of Fibromyalgia are male, but sadly most men will not go an see a doctor for help. They just have to {work through that pain mister, use it to toughen you up. and remember big guys don't cry) HORSE PUCKY as Sherman Potter used to say (if you don't know who that is send me a PM and we can discuss it) It is also world wide and affects more of the population than ever estimated before. There are other numbers about this but I can not remember them right now when I find them I will let y'all know.

Matthew this not pointed at you. It is just for general information. I decided to put it here so maybe more people will see it. I will be making it's own post in the appropriate place later.

Effective October 1st 2015 Fibromyalgia was reclassified as a central nervous system disorder. The international classification of diseases lists Fibromyalgia as a diagnose-able disorder under ICD-10 with the medical code M79-7 It is not in your head and technically it is not a disease either it is a disorder. We have to start making sure we represent our problems effectively or how do we expect friends, family the media anyone else to get it right when we cannot get it right ourselves. Even some of the celebrities that have Fibro are misrepresenting our plight.

Oh, by teh way Matthew and the rest of y'all reading that did not know, May 12th is Fibro awareness day and it is a purple thing, I know, I know ugh! purple. I do not own any purple so I have to go out and get some purple things to wear now, UGH! Charlie Brown. There is also a movement starting that every fourth Friday of each month is Fibro Day as well, so yeah that means get out that purple gear once every month. I guess once a month is really not that bad, but OMG it's PURPLE! UGH! I know that they make Fibro T-shirts these day, and I will find them, share the places to get them and yes, I promise, to wear them even though they are PURPLE.

Well that is a bunch to take in, and Matthew you will come to know that my posts usually are a little long winded and most have to digest them a little at a time. I hope that you will do the same if you have to. And I always make sure to leave a lot of white space to make it easier to read ;) PM me if you have any questions about anything that you may not want to discuss right away out in the open board. You are new and do not know yet, we are a sensitive, caring, accepting and loving bunch, and yes we are all Fibro Knights, men with honor, armor, and we are in battle everyday!!!

<..... edit by your local Fox just to squish down the pics .......>
one of Jesus' own
Tojo

denny

I KNEW IT WAS THE ALIENS!



"FREE ME FROM EXISTANCE"
It is what it is...

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