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Started by milesdavis2, October 10, 2020, 09:16:44 AM

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milesdavis2

Hi everyone,

I have been digging around online for a while trying to find a solid forum for MWF. Not sure how I missed this one but glad I found it. I feel very welcome to be here just from reading other posts and your introduction page. Thanks for putting the hard work into setting all of this up and maintaining it and for your level of compassion and understanding.

My name is David I grew up in PA and moved to Charlotte NC in 98. Hopefully they are starting to accept me by now. I?m in finance with Wells Fargo. I was out of work for a number of years and started up with Wells in April of this year. I was diagnosed by a really great neurologist here in Charlotte about ten years ago. I went through every test imaginable with him so It was another process of elimination scenario. On my last visit with him he reluctantly settled on you have some form of fibro. The relief was minimal since all the work really never led to any kind of improvement in my symptoms.

When I look back and analyze the events and environment I was in prior to the onset of symptoms I am almost 100% certain of what started it. The year prior I had dislocated my right shoulder pretty badly and had to go in for surgery. At the same time our department at work was going through some major changes and the stress was high. The combination of the surgery trauma to my body and work stress was the trigger. I can remember the exact moment when I felt the first symptom. I was driving to PT for the shoulder and it felt like someone was stabbing me with a sharp needle in the lower left side of my back. I even reached around the seat and felt around everywhere to see what was causing it only later to find out it was coming from inside of me.

From there It quickly spread throughout my entire body.   I could literally write and entire novel on the nerve and pain sensations I feel throughout my body. Growing up I could have never imagined that my body was capable of such sensory madness. I feel buzzing, tingling, twitching, vibrations, heat, pinpoint intense electrical shocks, machine gun shocking, aching but nerve like, large muscle waves of pain that travel and flow, entire body vibrations the list is endless and I really can?t even remember all of them. Many are almost impossible to put into words that would do them justice. In addition to all of that just about every joint in my body is toast. Operated shoulder is trashed and the other one is not far behind. Last year the hips, ankles, big toes and neck joined the party. Everyday something new gets added on.

For the whole of this past year I have spent so much time and money and have gone through just about every test imaginable to try and figure out what the hell is wrong with me. Of course everything came back normal with the exception of tissue damage in the right shoulder and in the hips. Even still the diagnosis does not match the type of pain I?m feeling in my hips and other joints. Some days it literally feels like I?m going to break in half. Everything feels like it?s coming apart. Nothing moves fluidly and smoothly anymore. Everything feels off and weak. I get so tight that my tendons and muscles feel Like taught guitar strings.  The bones in my feet feel like they could just snap sometimes.

My energy edge is usually non existent and I tire easily giving in to the pain and discomfort when I can no longer fight it. I?m depressed and just a ball of nerves and anxiety especially lately. I can?t escape it or control it, it?s almost impossible to relax. I look forward to the evenings and going to sleep which I don?t think my body is doing a very good job of anymore.

I was once a very active person who found life to be very interesting and exciting. I was a rode and mountain biker, rock climber, white water kayaker, backpacker, hiker, runner, Gardner, home brewer, etc. I trained for MS charity rides riding 200 miles in two days. Now I weigh out decisions about whether I can handle cutting the grass and taking the dog for a walk on the same day. It feels like my old self lived another life in someone else?s body, a distant memory that haunts me daily. Where is he? How did I get here? What the hell am I doing here. What?s my purpose. Everything that defined me, comforted me and balanced my stress levels is gone. Hell, I can?t even drink anymore.

My stomach can?t handle it trashed from the NSAIDS. I didn?t take long before the gastritis kicked in. I was not even taking the meds that often and it just refuses to go away so I just stopped drinking all together and there goes the home brewing and the club and all the friends that go with it. It started when I was 39 I?m now 50 and if this cascade of garbage continues on the same trajectory I?m not gonna make it much longer.

I?m in the process of switching my GP since I feel my old one is sick of me and I get the feeling she thinks it?s AIMH. So hopefully a fresh start will get me some relief, meds, CBT etc. At the moment I need serious help with the anxiety and accompanying depression. It?s becoming debilitating, my mornings are just horrible. I can?t focus, think straight, concentrate etc. I feel like a complete basket case. I?m not suicidal I could never do that to my wife and family but if I dropped dead today for whatever reason I honestly would not care.

I would really love to hear if anyone else out there has a similar level of joint problems accompanying the other classic symptoms. Are the joint issues part of the disease state? Mine feel both nerve like and mechanical. Very noisy, crunching, grinding, cracking, creaking and even squeaking but yet all come up arthritis free with the exception of the spine and right shoulder. It boggles the mind. Even after all of the scans and bloodwork I still really have a strong feeling I have some type of inflammatory joint disease along with the Fibro. In fact I?m pretty much convinced but no one can find anything. It?s maddening!

I?m on no medication right now. I?m super sensitive to everything, my CNS is like a fine tuned sports car. Throw the smallest thing in the machine and I feel it. I tried gabapentin hated it, cymbalta made me feel like I was loosing my mind along with any other antidepressant I tried. They all gave me brain zaps and made me feelLike hell. Can?t take NSAIDs so all I have is Tylenol which is almost like taking a placebo. I have no idea how long I will last in this job, time will tell. It?s hard to even sit still long enough to work when your constantly uncomfortable and in pain.

I have a tens unit which I really like and use mostly on the shoulder when the burning pain gets to be too much to bear. I have lost a ton of muscle mass, feel weak and feeble and have just about zero endurance. I try to stick to an exercise routine but it always gets disrupted by pain and I have to stop and restart Constantly as I go in and out of the pain cycle. I can?t seem to stay on any medication I always end up tapering off of it. I hate benzos, I was on klonopin one time for a while only using it at night when I had trouble sleeping. Even just that caused horrible withdrawal side effects as I would go into micro withdrawal during the next day and completely stopping it took months. No thanks!

My friends are still there but I don?t really see them much anymore since I can?t do the activities that bonded us in the first place. It is depressing hearing about and seeing the adventures they go on and the endless energy they have. Hell even seeing someone jog by in my neighborhood pisses me Off. I see people moving their body parts on tv or real life and I catch myself thinking man how do they do that how do they have the strength and energy and then I remember back when I was strong, fit and full of confidence and life was just there for the taking. Now life is just a living hell that I just try to survive in.

I do try to stay positive, however it is a big challenge and I do have a wonderful wife and supportive family which is a plus. I just want my Fing life back that?s all, I guess it?s good to dream. Again thanks for having me. It?s been a rough week so that?s why I?m leaning toward the negative. Hopefully the next will be better. I look forward to keeping in touch and if you have any questions or suggestions I?m an open book so feel free. Thanks and have the best wknd you can.


Edited in breaks for ease of readability: Ronr

Barberian

Welcome to the club nobody wants to be in.  :bighug: We have a very supportive community here. If you have a concern or question ask away. It may take a day or more to get an answer if we have it, but we try.

Feel free to rant if you want, we understand. We have various topics in the forum to post under. I often post about my hobby here, more than my issues I'm having with Fibro. I have mental health issues as well. Sometimes I post about them. It doesn't have to be ALL about Fibro. Post about your victories, failures, shortcomings, hobbies, family, whatever comes to mind you feel like sharing about. You are pretty anonymous here, we only know you by what you share. I don't even think admins could track you down with your IP, if they were so inclined. I've never had any problems with people here. I've been here since 2013.

It is helpful to break up your posts into short paragraphs, it makes it easier to follow for people who are having concentration issues like Fibro Fog. Not necessarily this short, but I'm glossing over several topics.


ronr

 Welcome Beads MilesDavis2,

You covered  a lot of ground there and it breaks my heart to hear the same old sad story from a new guy.  Your story and symptoms are wayyy too familiar to most of us!  Grinding, snapping, soreness, pains all over & localized, vibrations. spasms, sounds like you have them all.

A must read is http://menwithfibro.com/community/index.php?topic=277.0
Acceptance is an ongoing process and you can go through any of the stages repeatedly.  We must learn about our new selves and let the old one go even though reinventing yourself is the hardest thing to do.

Do you have any other diagnosis' than Fibro and the arthritis in shoulder?  There is no limit to the additional ailments we can have.  Stress is a killer but there is no way to avoid it that I know of.  You learn to let some of it go & roll off your back but...

More later  but I too can't sit much longer than I can stand which is very little at all.  The constant movement makes some folks nervous but ya gotta do what ya gotta do.  My eye is blurring and joints a snapping so for now just welcome again!
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

foxgrove

Welcome to the family David!!!  :bighug:

I'm so glad that you found us.  I know that we guys tend to do things all on our own and avoid getting help even if it means that we leave the odd limb lying here or there.  I'm glad you've gotten to us before that happened. ;)

Brother, I feel your pain!  Your descriptions do a pretty good paint job on what I experience as well... I have less problems with my joints but they're on the downward slide as well... I've had joint issues with my back and neck for as long as I can remember and now my knees are starting to give me more than a little problem.  Exercise... lmao!!  exercise... that's like inviting someone to a torture session with a big grin.  We do what we can but I remember my routines... what I'm able to do now is nothing even close!  Like you, me and many of the other guys on here were once outdoors type folk.  Now we paint outdoor scenes on the backs of our eyelids.

That issue with being sensitive to meds is kind of a tag-along for lots of fibro folk.  It may be a mild form of chemical sensitivity to some of the ingredients common with the meds or it may just be our body's hair trigger for "different."  It's like a guard dog that chews it's own house down but should anything try to step on it's territory, it'll take them out too.  Yeah... taming this dog is a hard task!!!

I'm pretty impressed that you have been able to work.  I hope it's not one of those work to survive and collapse when you're not working situations.  Life seems too short to simply work to survive...  Awesome that you're working though.  My skillset is now 15 years out of date and the chances of me getting more than a greeter position at Walmart are slim.  Well... that and the brain fog that brings on all the anxiety and depression... 

So, speaking of anxiety and depression, what tools have you developed in your toolkit to fight them?  Those have been the hardest things to fight over the past year.  Nothing quite as depressing as a depressed Christian.  :biggrin:  But we're working on it, day by day.  I think a lot of it comes down to realizing that nobody is really in control of their lives.  It's a big illusion to think that rich men are rich because they are somehow better than others or that sick people are sick because they somehow deserve it.  Rich one day, poor the next.  It happens all the time.

That's part of the reason we exist.  We hold on to each other's sanity and health realizing that it's a fragile thing.  We try to help others to make the best of their days, whether that's some new therapy that they haven't tried or just being there to hear them pour out their soul.  Trust me... this is a good place to be.  The folks are genuine, the problems are very real.  When you dig around the place, you'll find our rant and rave area where we go to scream at the ceiling when life gets too hard... but mostly, it's just being family for each other.

I'm really glad to hear that you have a supportive wife and family.  I will freely admit that I wouldn't be alive today were it not for the love of my wife and her stubborn insistance that I exist, even if it's in my broken state... but then again, aren't we all broken in some way.

I look forward to many long discussions, my brother.  I know you will find lifelong friends and good things here.  Please feel free to kick off your shoes, find the comfiest couch, and dig in like a tick.  We're here for you, just let us know if there is anything we can do to help.

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

Foxgrove

Robby

Hey David, I'll probably come back and write some more for you, but right now there is one thing I want to let you know we share. You said that your not suicidal, but if you just dropped dead, you wouldn't care. I have never been suicidal, I am just too damn stubborn for that. I'm not leaving until it's my time, and I will probably have to be drug out of this life kicking and screaming, just because it wasn't my idea. I'm just that way. But, there was a time many years ago, that I laid in bed begging God to kill me. I prayed that he would give me a heartache, or a stroke or something and I would just die. I not only did not care, but was actually begging, not asking, begging Him to kill me. So I understand exactly what your talking about.
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I will put you in the trunk, and help people look for you, DON'T TEST ME.

milesdavis2

#5
Hey guys,
So sorry it?s taken me so long to respond to your posts. Life has been pretty crazy lately. For the past six months I have been studying for finance licensing exams for work. That?s literally all I have been doing since I was hired.  

Last week I had my final two exams for the insurance portion. So that along with new hire training has been taking up all my time and energy. Of course all of this is being done from home. Sometimes I wonder how I made it through all of the exams and passed them on the first try with all the Fibro and other crap going on.  If I had to actually go into work everyday I really doubt I would have made it this long. Hopefully I can continue to hang on as I progress into actual full time work.

Ronr you asked if I had any other diagnoses.   I have had two surgeries on the right shoulder and the left is also a mess. It?s super loose, general laxity I believe it?s called, AC joint is torn and labrum  issues so not much holding it together anymore. It often slides out in my sleep and cracks violently as soon as I try to move it after waking up. Gastro doc confirmed gastritis which I just can?t seem to shake and my BMs rarely ever look normal.

Also I?m pretty convinced that I have psoriatic arthritis. My father has had psoriasis really bad his whole life and is on a biologic and is starting to get some symptoms of PSA. I have never had psoriasis but over the last year I have developed the freekin strangest join problems and pain that I never knew the human body could produce and it all points to PSA. Of course like everything else I don?t have the telltale classic signs and all tests come back negative.  However I am starting to get redness around the affected joints especially my feet but no real noticeable swelling.

Today it?s raining and cool here in Charlotte and I?m feeling worse than I have in a long time. I?m really wondering how I?m going to fare as winter weather approaches.

I also have been diagnosed with a torn labrum in the right hip and some labral fraying in the left but no arthritis. The weird thing is I get a ton of pain from both hips but not the type you would expect from that diagnosis. It?s more burning, stinging nerve and tendon like. It feels like it?s most intense where the tendons attach to bone. If anyone on the forum has PSA I would love to hit them up for some info. To see if there are any similarities in symptoms. That?s pretty Much everything I have going on which is more than enough.

Lately I also have been getting this entire body vibration numbness that is freaking me out. It?s like the nervous system is going bonkers and every single inch of my body is amped up to the max. It feels like I?m laying on a giant cell phone on super vibrate mode. It?s even kind of painful in its own way. Has anyone else experienced this?

Thank you again for your responses. I feel very welcome and look forward to many conversations to come.

edited in paragraph breaks for ease of readability; ronr

ronr

I edited in some breaks to make it easier to read milesdavis2.

Sounds like crazy study time for you & I can't imagine doing it all with FM.  All the symptoms you describe are symptoms of FM manifesting, depending on which list you look at.  Either that or all the symptoms have caused FM but I would guess the 1st one.  Which came first, the chicken or the egg kinda deal.  Not good either way.

Vibrating numbness I have but not full body as intense as you describe so first we'll see if someone else can relate on that issue.

One thing I will warn you about is stress!  You are stressing yourself a great deal and that is a huge factor in making things worse.  Hope you have something to help so that you can slow down and relax at times.

Keep us updated on the new GP & see if you get any help there.
Times are tough when "Happy Hour" is your nap.
My mind not only wanders, sometimes it leaves completely!

foxgrove

Yeah... the vibrating numbness... I still get that in my legs and hips.  It makes sleeping... well... unusual if not nearly impossible, but I do eventually fall asleep.  I'm guessing that it's often from sheer exhaustion.  Sorry to hear the weather makes your body scream too.  Bad side effect to be sure but nothing unusual, sadly.

Rough luck with your joints.  That's rough.  I have a friend who suffers from severe psoriatic arthritis and psoriasis... it's nasty as all get out to deal with but he somehow makes it work.  Just makes it's mark with big bold painful ink.  Hope it turns out that's not what you're facing. :budy:
Where God leads, His hand always provides
...so keep Calm and code on....

Foxgrove

Barberian

You still here milesdavis2? I hope I wasn't putting you off by commenting on shorter paragraphs being helpful. You are more than welcome to stay here and participate. If you have difficulty with paragraph structure, just post away. We can deal with it. We all have our own issues. Don't be put off by it. The Lord knows I have plenty of issues, plenty.  :smiley praying: The members know about several of them too. :insane:


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