Category Archives: Guy in a Skewed World

Articles that deal with a male’s perspective on Fibromyalgia and Rheumatoid Arthritis.

A Guy in a Skewed World: Still hanging in

It’s been a few years since I updated this blog.  I’ve been dealing with going back to school, getting additional diagnosis, and generally going downhill mood wise.  Life hasn’t been easy, but with my wife’s loving support, I’ve been able to keep from giving up, just yet.

I’ve spent the last couple of years, since I was laid off, going back to school to at least get an associates degree.  That’s almost complete.  I’m at the end of the last semester’s worth of work needed for that.  The question comes in – am I actually going to be able to use it?  That leads into the rest of it.

Over the last couple of years, I’ve had several items added to the health issues list.  In addition to dealing with the fibromyalgia, I’ve also been confirmed to have psoriatic arthritis (PA).  This is the red-headed stepbrother of rheumatoid arthritis.  It presents similarly, attacks the body in similar ways, but it varies slightly.  It tends to attack tendons, ligaments, and the skin (including possible discoloration of the skin), where RA doesn’t.  On top of that, issues with my back have been getting worse.  So, between the PA affecting my lower back and other issues affecting my back, standing and walking are very difficult.  Needless to say, getting treatment for the back issues is difficult.

On top of all of the physical health issues, the constant pain, difficulty in doing anything, and not being able to hold down a job, my mental health has gone south in a hurry.  Chronic depression is a constant companion.

I’m worried that I won’t be able to actually hold down a job, anymore.  As it is, anything (including class or doctors visits) that is more than 10 or 15 minutes away, I need someone to drive me, most of the time.  Fatigue, dizziness, distracting pain, and debilitating pain, make it difficult for me to drive any significant distances.  I’m having to nap frequently during the day, just to keep energy levels up for class.  With the absentee rates I had BEFORE my health got worse, I’m concerned about anything that requires me to be physically present to work.  My mental faculties have taken a hit, as well.  Between the pain, chronic fatigue, depression, and mental fog associated with fibromyalgia, it takes me almost double to the time to do anything that it took me, even as recently as last year.

In all of this, the one thing that has kept me going, and kept me from giving up completely, is my wife.  Without her love, support, and chauffeuring, I wouldn’t have made it this far.  My desire to do better by her, and our children, and my desire to not let her down … these keep me going.  Without her love and support, I’d have given up a long time ago.  In so many ways, she is my lifeline.  And she does this in spite of her own health issues and challenges.

Hopefully, it won’t be another 3 years before I update this again.  I’m hoping to get this back to what I intended it to be – a daily (or multiple times per week) journal.  We’ll see.

A Guy in a Skewed World: Update

Okay, so I know it’s been awhile since I last updated this.  I think I left it a little too long.  Sorry about that.

Anyways, as I mentioned previously, I’ve been seeing a new rheumatologist for the last several months.  He and his staff have been wonderful.  They’ve even called me in on short notice after I called and said the meds they put me on didn’t seem to be working.  I was in their office for a scheduled appointment the next morning.

After a complete workup, including x-rays, blood tests, and a very thorough physical exam, he’s come to the conclusion that the FMS I’ve been dealing with for the last several years is a secondary condition.  The primary condition is an inflammatory arthritis (he’s not specified, yet but is leaning towards Rheumatoid Arthritis).  Since we started treating that with corticosteroids (prednisone) and methotrexate, most of the issues with my hands and feet have become bearable.  Along with that change, a good number of my FMS symptoms have come under control, as well.  They’re not gone, but they’re now at the level where I can deal with it.

Now, Methotrexate is a drug that has proven to work with RA, but it’s primary function (in much larger dosages than I am on) has been as a cancer treatment drug.  Because of this, the side effects can be rather intense.  Nausea, fatique, insomnia, loss of appetite, etc. are all part of the list of possible side effects.  I take it on Fridays, so that I’ve got all weekend to deal with the worst side effects to be able to work the following week.  Well, until the beginning of September, the side effects were so bad that I was out of work on Mondays quite frequently.  However, the docs made a change to the Floric Acid supplements I was taking (now a triple dose on the day before, day of, and day after taking the methotrexate).  Even with the boosted dosage they put me on, it’s made a world of difference.  I’m now able to do some things on the weekends where before I was practically incapacitated all weekend.  I’ve also managed to not miss any work for the last month.

Now, saying that, the first thought through a lot of people’s mind’s would be, “A month?  That’s not a big deal.”  Now, bear with me for a moment.  This is the first time in at least a year where I did not miss a single day of scheduled work time.  For me, that’s a big deal.

If anyone has any questions, feel free to drop me a line.

A Guy in a Skewed World: Better Living Through Modern Chemistry

One of the things that I’ve had to come to grips with while dealing with my FMS and other arthritis conditions (little of which actually shows up on x-rays. Go figure) is the experimentation that doctors go through. Let’s try this drug and see if it helps. Take this drug for a couple weeks and then come see me. Anybody with a chronic, long term condition is familiar with this cycle of ups, downs and completely freaked out reactions of your body.

Now, don’t misunderstand me. I appreciate the hard work that doctors do to try and help us reach a point where we can live a functional life or put us back together after we do something monumentally stupid. My rant (because it’s not really a complaint, because I can see and understand the logic behind it) is born out of an overloaded sense of frustration.

It’s frustrating to deal with the cycle of hope and disappointment that comes with each new treatment plan.

It’s frustrating to have something start working, and then having to quit because the side effects are more dibelatating than the condition being treated.

It’s frustrating to realize that there might not be a way to actually bring my health levels back to a point where I can remain a functional member of society.

A recent visit to a new rheumatologist (and one that doesn’t think it’s all in my head) has me hoping again that we might be able to find something that’ll work. New tests, x-rays, and a willingness to not assume that I’m making it all up for attention. Those have sparked something that’s been missing for awhile (despite my family’s best efforts).

Here’s hoping that we can finally break this cycle of hope and despair and get something accomplished.

— Sham

Originally posted at http://shamandin.blogspot.com on 03/23/2012.

A Guy in a Skewed World: Intro to FMS

For a good number of years, I dealt with issues that baffled me.  You see, my family has a history of autoimmune disease.  My grandmother suffered from Rheumatoid Arthritis (RA) for many years before passing away due to complications. Several years back, I started feeling chronic fatigue (often even after a full night’s sleep), muscle spasms, frequent and excruciating muscle cramps, frequent muscle aches and muscle weakness. I went to my normal doctor to see if we could figure out what was going on.  With the family history and being the primary means of support for my wife and family, I was concerned about what could be happening.  Fibromyalgia (FMS) is diagnosed, not through positive test results, but an elimination of other conditions. My doctor ran tests (and reran the tests) for lupus, RA, Multiple Sclerosis (MS) and other autoimmune diseases.  Over the course of several years, the symptoms only got worse.  It got to the point where I was going to work maybe 3 days out of 5 due to dealing with the symptoms.  My boss was very … lenient … where my absenteeism was concerned.  After approximately 3 years of trying to figure out what it is, my rheumatologist tested me for the 18 tender points usually associated with FMS. Out of the 18 points, I was (and still am) tender in 16 of them.  She then diagnosed me with FMS.  Not that having a diagnosis made life any easier, but it did set my mind at ease.  I had some idea of what I was dealing with.

For those that aren’t aware, Fibromyalgia Syndrome is called a syndrome for a reason.  Not everyone who has FMS has all of the same symptoms.  Some deal with muscle aches, sleep deprivation, depression, joint aches.  Others deal with the muscle aches, muscle spasms, cramps and fatigue.  Others mix and match the symptoms in different ways.  That’s part of why it’s so difficult to diagnose FMS.  It’s also part of why there are still doctors today who don’t believe that FMS is real.  If you’d like more information on FMS, check out the nice WebMD article about it.

As a male with Fibro, I’ve managed to beat the odds rather dramatically.  It’s a disease that’s currently diagnosed in females more than males.  Depending on which set of statistics you pay attention to, it’s either 95% or 10:1.  Now, this could be a gender bias on the syndrome.  My take (and this is backed up by some studies that I’ve managed to lose the links to), it’s probably more common in men than is currently diagnosed, but due to male pigheadedness (aka machismo), help is not sought, so no diagnosis.  Most of the symptoms, taken separately, are all things that men are taught to ignore or work through.  Men don’t admit (to themselves, much less others) that they’re hurting, tired, weak or any of the other myriad symptoms.  It’s seen as being weak.  It’s seen as being less of a man.  It’s. Just. Not. Done.  Ergo, fewer men get diagnosed with fibro. 

Even with the limitations on my activities due to the fibro, I’m still working.  It’s been hard.  Some days, it’s all I can do to climb out of bed and get ready for work.  I’ve been blessed with a boss that’s been extremely lenient and willing to work.  I’ve come close to being fired several times, especially during the period where I didn’t have a definitive name to put on what I was dealing with.  There were several times where I think my boss stepped out on thin ice to give me the time to work through it.  I’m glad he did.  Earlier this year, I hit 16 years with the company. 

I will say that a good part of why I’ve managed to make it and get back to a semblance normalcy is my family support system.  Through it all, I’ve had the unconditional support of my loving wife and our children.  My-in-laws and my parents have all shown considerable support over the years.  Between their support and a wonderful doctor (who also happens to be one of the last old fashioned country doctors), I’m back to something that vaguely resembles a normal life.  I do have to be careful in what I do because overextending is very easy.  I’m back to working 19 out of 20 days.  Which, as an American Male – I’m glad for it.

Looking at it, I’m looking at turning this into an extended series.  Look back for more.

 
 
— sham

A Guy in a Skewed World: Next step

One of the things that I deal with regularly is skepticism. There are a lot of people (quite a few of them in the medical professions) who don’t see Fibromylagia as a real condition. They see it as someone trying to get attention or faking to get out actually being a productive citizen. I’ve dealt with several doctors, rheumatologists even, that did little to help me find ways to remain productive and able to provide for my family.

Having said all that, I’m happy to say that I’ve found a new doctor that is actually trying to help. For once, someone’s looking at my symptoms and actually trying to figure out if there’s an underlying problem that triggered the FMS (likely Rheumatoid Arthritis or RA) or if the FMS is just tagging along on it’s own. He’s seems sincere in trying to find a way to get me back to some semblance of normality. It’s been only one visit, but that one visit has given me the hope that someone out there does believe that there’s actually something going on and is willing to work with me to find out how to stall it. It’s going to take time, effort, and many small steps (even some backwards), but I’m willing to put the time in to be able to live a somewhat normal life.

— sham

Originally posted at http://shamandin.blogspot.com on 03/22/2012

Days that suck

You ever have one of those days that just truly suck? Days that suck your energy, patience, and desire to accomplish anything right out of you? Well, today is one of the days for me.

My fibro limits me in various ways. When I overextend, like I did this weekend wtih laying tile in one of my mom’s bedrooms and the helping my son stay up prepping for a sleep deprivation EEG and then taking him to said EEG. When I overextend, my body reminds me of it for several days. Aches, dizziness, cramps and muscle spasms, heavy fatigue, and loss of appetite all are ways my body (because of the fibro) remind me that I over did it. The flare hits worse the day after but normally lasts for several days. The severity diminishes somewhat as my body manages recover from the overwork that I out it through.

That’s something that a lot of folks don’t understand. I can do a lot of things that are considered normal. They don’t see the torment that I go through on the following days. That’s why I have to be careful and pick and choose which activities I will do.

Now, while this is a bit of a rant, I want to make it clear that I do not ever intend for this disease to keep me from doing what I want to do. I will do what I need to do and accept the consequences. At that point, it’s my choice to be a stubborn, pigheaded Polack. Everyone else just needs to get out of my way. I don’t need to be babied. I am learning the new limits that my body has decided to enforce. I am also aware of the consequences of going beyond those limits.

I will not let this disease beat me. I will not let it dictate to me how I should live my life. I acknowledge the limits and their consequences. I will not let them stop me from helping my family and doing things with my family. My family is too precious to me for me to allow it to take them and activities with them away from me.

I apologize that this is a little ranty and a lot incoherent. I’m dealing with the consequences of overextending this weekend. My brain and body are barely functioning today. I’m lucky to have made it into work today.

— Sham

Originally posted at http://shamandin.blogspot.com on October 25, 2011.