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Hello from a confused man

Started by Chrisamsdad, July 28, 2014, 07:34:33 AM

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Chrisamsdad

Hello, I am 54 years old and have been fighting fatigue and body aches for 6 years now. I went to A neurologist 2 years ago and was told NO to RA and everything else. but was then told I have Fibromyalgia.

Irritable bowl, bad morning stiffness, numbness and tingling mostly legs but now seeing in arms and hands as well. Had a work injury to lower back and now had doctor say I have Neuropathy.

I have sleep apnea and use C-pap.

Am I loosing my mind or do I really feel this bad ? Back injury is different then all else it is just bad back pain and working to have that corrected, but how do we feel better. I do not see me having the set pain points, but they do come and go and varies in pain level.   
 

ronr

Welcome Chrisamsdad !

You may be losing your mind but that has nothing to do with this pain and YES you can feel this bad.

Back injury may be what triggered this to start for you.  It certainly did for me, but there are many things that can cause the FM to surface.  Surgeries is another thing that can start the process and some people just have it from birth.

What are they doing - recommending for you to treat these issues?  Heat and slow, easy, range of motion type stretches are what helps many of us.  That and learning what your limits are and then living by those limits as much as possible.

Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

looneylane


foxgrove

Welcome to the family Chrisamsdad :welcomeani:

Sad to say but yup... as Ron said, you certainly can feel this bad.  Fibro isn't for the faint of heart but I know that as it goes on, you'll find that your heart is a lot stronger than you ever thought it would be.

How to feel better... that's the main reason we're here brother.  There are so many thing that you can do to take a little of the pain off and make each day a little easier.  Sadly, there really isn't a magic pill like they advertise on TV that'll make you suddenly all better... at least for most people.  I've only heard of meds working their "magic" on a very very small number of people.  The rest of us work to find our 5% solutions.

Your 5% solutions are the little things that you can do that give you a small amount of relief.. thus the 5%.  When we string these together, it becomes a toolkit that we can dip into whenever we need.  Very gentle stretching and heat seem to be quite common elements as well as a med cocktail which is unique to each person's physiology and tolerances.  Basically, your toolkit will bear some resemblance to others but it will be unique in many ways to you.

Often we look for things that we can do differently... jar openers, electric toothbrushes instead of manual ones, extra pillows on the bed that only get used in a multitude of fashions, switching from reading books to listening to them or reading electronic version if it's too hard to hold a book, switching to loafers so you don't have to tie your shoes, snaps instead of buttons... Whatever works.

For therapies, think of yourself as an 90 year old man and act accordingly.  Don't let a therapist push you further than you're able.  Stop exercising before you get tired.  Warm water therapy is wonderful as it removes gravity from the equation.. just remember to go slow as your body will feel much more tired when you apply gravity again.  Massage therapists are fabulous for some, torture for others... I find that a happy medium is to learn the techniques yourself and use a tennis ball for the places your massage tools can't reach.  Using hands is the best for massage but use yours sparingly as they will tire quickly.

OK.. enough teaching for today... tell us more about yourself,  I'm guessing that you have a child from your moniker.  Tell us about your family.  Are they on board with all of this or are they still reeling from the diagnosis?  There is a place for your spouse here as well.  I know that our spouses go through this right alongside us though their state of grief may be different from ours at any one point.  It's important that they get the support they need as well.

So.. there you go.. a taste of the multitude of things you'll find here.  Dig and find gold.. it's in here.  Hundreds of years of fibro experience all hard fought for and freely given to anyone who is willing to read.  I know you'll find all that you're looking for and a whole lot more.  The people here are amazing.. the best anywhere.  I know you'll find us to be a marvellous addition to your support system.  Welcome aboard.  :budy:

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

Foxgrove

denny

I KNEW IT WAS THE ALIENS!



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

Chrisamsdad

Well at this time I am not getting any treatment and I have been "sucking it up" as they say. I kind of complicate the issue by being over 7' tall and I travel all the time. either by driving over 1200 to 1500 miles a week or by flying. I know that this does not help things.
I do not get the "tender points" in all the places listed or at the same time. but at 7'1 and 330+ lbs I pay a price.

My brother, sister , cousin female, and 3 nieces have fibro and all test for other issues showed nothing and the rheumatologist said that everything points to Fibro.

hardest thing is just being pigheaded and not letting it stop me. but it soooooo try's to slow me down.  Some days just kick my butt and I can hardly get things done, but most times...  Tell myself. "men don't complain"

I live alone so support comes from faith.

foxgrove

Thanks Chris.. Yeah.. guys tend not to present with the same tender points as the ladies but the new fibro diagnosis rules take that into consideration.  As my rheumy says, by the time you get to testing for tender points, it's a formality and sore is sore, whether it's here or there.

Now I can certainly see your size working against you in a world built for someone 5'10".  Wow!!  and here I thought life was challenging at 6'2" 230.  Easy life in comparison.  For air travel.. I can't imagine.  I guess you are pretty much relegated to the emergency exit seat. They've never made airplanes quite tall enough to begin with.  Talk about headaches!!  What kind of vehicle do you drive?  I'm guessing the forced sitting is horrible on your back and hips.  If I might recommend a good book to read and learn , I think you'd find Clair Davies "The Trigger Point Therapy Workbook"... it's a really good practical guide to treating myofascial trigger points which are an almost guarantee with fibro.  I find it amazing how many of the extra pains I can actually treat.

The other thing I can attest to is my latest pain relief thingy... I got an adjustable seat for the car which is great as the bumps and jars of road travel exacerbate my pain both instantly and cumulatively.  My sweet wife was looking for something to ease my travelling and it was recommended for tall men and air travel.  It's a thermarest travel cushion.  I actually have to underinflate mine for it to feel the best but I've been told it fits airline seats like it was made for them.

http://www.amazon.com/Therm-A-Rest-Travel-Cushion-Nautical-Blue/dp/B00HANW9FY

This is only a personal recommendation, not an advertisement.  I know there are several makers of inflatable seats but this is the only one I've tried.  :biggrin:

Glad to hear you're a man of faith.  I'm blessed with an amazing family and yet, I know I wouldn't have made it this far without my Lord hanging on to me.  Well.. now your support group is much Much MUCH bigger.  :biggrin:  :budy:
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

looneylane

Wow That has got to be tough brother!  :bighug:

augoldminer

"and all test for other issues showed nothing"

And this is one of the problems.

For years doctors told us the tested for everything and found nothing. but never did tell us they really did not test for everything.

Has anyone in the family been tested for small fiber neuropathy.
http://www.painresearchforum.org/news/33529-multiple-studies-one-conclusion-some-fibromyalgia-patients-show-peripheral-nerve

http://practicalneurology.com/2009/10/PN1009_06.php
Wooden Ships and Rusty Crusty Old Iron Men
USS Enhance MSO437
Sanity is for Nuts!

countryboy

Hi Chris,

The only thing that I found that actually helps my neuropathy (which is mainly in my feet and lower legs) is Neurontin.  Been taking it for about 7 years and every time they switch me to other meds (like Lyrica) I end up going back to the
Neurontin.  It might be worth asking your Dr. about.

Glad you found us and between all of us, we can learn tons of information just by communicating with each other.   :hi:
IT IS BETTER TO BE CONSIDERED A FOOL, THAN TO
OPEN YOUR MOUTH AND REMOVE ALL DOUBT.   But
UNFORTUNTELY MOST PEOPLE REFUSE TO LEAVE ANY DOUBT.  -unknown-

ANY FOOL CAN CRITICIZE, CONDEM AND COMPLAIN --
AND MOST FOOLS DO.   'Benjamin Franklin'

Chrisamsdad

Is it common to have that Headcold / Fog feeling, and am I the only one that swears he is having slow hot flashes. I can feel them come slowly and then they stay a minute or two then gone.

denny

I have hot flashes all the time.
Theres nothing slow about them tho.
Im having one right now.
I hate them.
I KNEW IT WAS THE ALIENS!



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

foxgrove

Both of those conditions, ones I'm feeling at this very moment in fact... (ug!), are really common with fibromyalgia.  There are other causes of course but fog is an almost guaranteed component of fibro, at least past a certain severity.  Hot flashes.. not sure if they're exactly short but I get em on a regular basis.  Annoying!!  Jo (my missus) and I joke and call them my man-o-pause sessions.  :lmao:
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

Robby

Hi, don't feel alone, most people are confused by fibro. What you describe, sounds almost identical to most of my symptoms. I think that eventually it will be discovered that fibro is actually a genetic disorder, and can be mapped in someone's DNA. Now that it's in your DNA, some people will just develop a major case just because, but there are other people that will have a very minor case and it will never get beyond just being annoying. Unless that person has an injury of some sort. Because of the injury the body flares up to protect and heal the injured area, but once the area heals the body does not settle back down, just the opposite it gets worse and spreads to the rest of the body. I think that is what happened to me, I lived for years from 6 or 7 years old with minor symptoms some every day, some just occasionally, but then I had an injury, and I went from being an extremely active person, working 60-75 hours a week, to being in a wheelchair unable to do anything for myself. Finally I was diagnosed with fibro, and started being treated for it, and I have regained most of my independence. But, when the area around the injury acts up, the rest of my body follows, then the injury clears up and the rest of my body clears up. But that's my story your mileage may vary.
/>----------
I will put you in the trunk, and help people look for you, DON'T TEST ME.

Chrisamsdad

Thank you to all, my first question is about rules, is the correct place for the continued conversation. ? Second is... I am no off work with a back injury and I feel that things with fibro are getting worse. Could this be from the stress. Everything from numb/ tingling in arms and legs. Headcold kind of fogy feeling and just really worn out.

Almost feels like allergies or sinus cold at the same time. Morning stiffness is enough to make you not want to start moving, thank god for coffee. I don't think my height is helping at all.

I also find that stress can also make me feel a little more emotional then usual. 

Am I nuts   Sure starting to feel like it.   Will exercise help, if so how hard do I push myself.  Not to much endurance.   

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