New to this Forum! Hello to all.

[JWB]

First let me say I never expected to be in this situation and it all happened very quickly. Some notes about myself. I am turning 63 tomorrow and this diagnosis has totally derailed me if my understanding of what it ahead is accurate. I am a total golf addict and have been planning my life around getting to 66/67 and moving to Florida for a retirement full of golf.
I have had various health issues over the years like anyone else. My first prescription began at age 50 when it was determined my thyroid was dying. I am now on 125 micrograms of Synthroid for that. I then developed serious gout and vegan a lifetime of Allipurinol. My doctor put me on a statin due more to a low "good" cholesterol then a total number. (I am off this now as they thought it might be the source of my pain.) The final drug (so I thought) was a light does of Ramiprill to lower my BP a bit.

Let me add that I am overweight and according to the doctor, legally obese but you wouldn't know that just by seeing me.  I weigh 224 but and only 5'9". I am broad shouldered with a large neck. I am sharing this because I was diagnosed with server sleep apnea a few years ago and just could not get comfortable with the CPAP machine so blew it off.

Despite all of this, I remained active in the gym, played probably 50-60 rounds of golf a year and walked 2-3 miles every day. I skied until age 55, played softball until 50 and have always been active.

This past January I took a vacation to Florida and played golf for 5 days. All was great and I played well. In February I had a business trip to Houston and got a work award for a trip to Costa Rica at the end of the month. While in Houston I started to notice a stiffness and sore joint feeling in my knees and hips. I managed to zip-line in Costa Rica but was uncomfortable with an overall sense of pain. Since that time, I started to notice numbness in my hands, pain in my shoulders as well and hips feeling like crap. I mentioned this to my doctor in April when I had my physical but he found all my blood tests to be normal. I have had osteo in my fingers for years so he said it was probably spreading. Because I had the misfortune of coming down with the UNRELATED Polymyalgia 10 years ago, he suggested it might be coming back. Unlike Fibro, Polymyalgia is 100% detectable via blood tests. When I had it prior, my CRP and sed rate were off the charts. Two years of prednisone took away the pain but as you can imagine for a price. I gained 35 pounds and had a moon face when done. I lost those 30 pounds and felt 40 again by an active gym life.

So I was really concerned about potentially having that again. I went to visit the Rheumatologist who  diagnosed the PMR and he suggested it was most likely not that since my blood numbers were all normal. He tested me for Lyme and Lupus and even suggested possible MS. In the end he diagnosed me with fibro and started me on Cymbalta (actually the generic). I started at 30mg and had horrible dizzy spells and feeling like I was high all the time and was uncomfortable but stuck with it and increased it to 60mg which I take every day at 10AM. The side effects are now pretty much gone accept for an occasional slight headache.

Now anyone reading this is up to date. Before I ask my question....I have never suffered from depression or anxiety. Sure, I get anxious of giving a presentation to my customers or presenting to a room of execs but don't most folks? I was really upset at first that there was no physical reason why I developed this. I find there are days where I feel pretty well but mornings are almost always painful. Getting out of bed is probably the hardest thing each day but has gotten better. I have some days where I feel almost normal and others where I sit too long (my job is mostly computer based) and it hurts. I struggled with two factors..mostly woman populated the support groups and didn't understand my concerns (prior to this site) and second, most of the people posting were on all kinds of mood altering drugs and that alarmed me. As I said, I am probably one of the most easy going folks in the world. I have been single since age 39 and have a long time platonic friend who does everything with me. We never fight or have stressful situations and I have invested wisely and have a good retirement planned so not sure where my life issues come from.

So, anyway. I played golf this past Sunday. Since I started really feeling the pain, I have lost 30% of my distance on the course and have felt like I am learning a new game. As any golfer can understand I was a 6 handicap two years ago and from mid May to last week I was struggling to break 100. I shot an 86 last Sunday and other than a little fatigue felt really happy at the end. Monday I was invited to a tournament and played again. I woke up yesterday and today in tremendous pain in my legs (Knee area both legs) and shoulders/neck. Is this what I should expect going forward? Will I ever be able to play 2 rounds in a row again without horrendous pain?

I can see where this can lead to depression. I see reference to the term "flare". Is what I am experiencing a "flare" from 2 days of golf? Can the pain actually subside or will it pretty much be what it is or worse for the rest of my life?

Just sharing my fears.

Nice to meet other "men" sharing this affliction.

Jeff

[Maxx]

Hi,

Welcome to the family. The guys here are all great. Helpful and full of wisdom acquired from too many years of experience with fibro.

I'm still fairly new to the wonderful world of fibromyalgia, I'm still in my first year and discovering new symptoms as the illness progresses. Which according to the experts, it's not supposed to do.

Whilst I'm no expert, and the experts will be along shortly, I've found that flare ups for me can usually have 3 main triggers. Excess physical activity, where the pain and fatigue will hit me for 1-3 days after over doing things when I've got tolerable pain levels. When I say excess activity, I mean an extra hour in the veggie patch can do it.

The good thing about flares is they do subside, but the duration is different for everyone. I'm sure the guys have more info on flares, but the pain will subside and once the doctors figure out which meds to use, hopefully they can get your daily pain levels down to a tolerable level, so you can get stuff done.

Stress is another, we lost two of our beloved cats in the space of 10 days, one to a tumor the second to a road accident. Mrs Maxx and I don't have kids, so the cats kinda fill that void. Stress flares last longer for me.

The final trigger for me is injury. The most recent was after some routine blood work. Within an hour of the needle, I was broken. Spent the rest of the day in bed and my head was foggy for about a week and my pain went up to a constant 6-7. Luckily not every injury has triggered a flare up.

From what I have found is that although there are common symptoms, this illness seems to be personalised just for you. You will have to pay attention to what you do, for how long, medication, food, weather, (even barometric pressure for some guys) to find out what makes you feel worse. The good thing is, you know there will always be someone here who has experienced something similar and is happy to talk about it.

Ask questions, even if they sound dumb. Rant if you need to, it really does help. Have a laugh at the random stuff Robby finds for us in the funnies section. We know what you are going through, the doubts and fears, but once you get a handle on this thing, you can start to figure out a plan to work with the illness, so that it doesn't beat you.

   

[Lonesome George]

Hi and welcome. Golf, well, that's something I played at one time.  Each round kept getting harder and harder to complete, even with a cart. The last round I played a somewhat spread out and hilly course. I can't remember if I made the whole 18 or dropped out before the last few.

So, for the past 15 years this past spring my golf clubs have been sitting in my closet beckoning me. They were there as a reminder of my goal to be able to play golf again. Now they mock me.  I can not and will not ever play another round. I couldn't even make a back swing now, much less hit the ball more than 10 yards.  I tried to hit a few in the back yard around 7-8 years ago. Horrible pain, stiffness, and I could have kicked the ball farther. I now do good to eat without spilling food from my fork.

I hate to sound this way, but everything I enjoyed doing I have had to either totally give up or severely limit, knowing that I will pay a huge price over a long period of time for a short period of small enjoyment, for it's hard to enjoy something when you're hurting and exhausted.

Hate to sound all down, but I usually tell it as I have experienced it. Sorry this has came upon you. My whole life, dreams and goals have been changed since I got this. This affliction comes with a lot of adjustment and mental anguish.

[looneylane]

Welcome!

[foxgrove]

Welcome to the family Jeff,

I'm glad you've found us... yeah, there really is a different slant when the entirety of the populace on a board is one sex or another.  We've got a good focus on getting the men's point of view out there but we're also blessed with some of the most amazing ladies you'll ever meet!  It's an amazing balance of kind, gentle, folk who want to help each other get through life with this crap of a disease and us crazies who are basically here because fibro's robbed us of almost everything but a good sense of humour and a love of camaraderie.   Well... I think there's a little of each type in each of us... just takes the right crowd 's all.

Sorry to hear you've been diagnosed with fibro but don't let it tear everything down... there WILL be changes, that much is for sure... the level of changes is completely out of our hands and we just have to take it one day at a time.  The way that we respond to these changes in our lives is totally within our grasp.  I can't tell you what you're going to be able to do from one day to the next but I do know that not every day will be bad. 

Basically, we end up doing a lot of storing up energy for the things we want to do, spending that stored energy as stingily as possible, and trying to make the best of the days when there is no energy left at all.  Sadly, that doesn't account for the days when all of your energy gets taken and the pain comes in waves... we call those days flares and they can last for hours, days, weeks, or even longer.  The thing that we try to stress is that in all the frugality with energy, make sure that you don't forget to live!!!  It's way easier than you think.

It sounds like you've been able to remain relatively fit.  I hope that you continue to try to play and enjoy life for a very long time.  Dig through our forum here and find those amazing bits of wisdom, earned with much pain and trials.  We have a treasure trove of ideas, thoughts, and history which pretty much covers any topic you can think of.  That being said, feel free to ask any question that crosses your mind.  You're family here... ain't nothing out of bounds excepting for we try to keep things civil so we go by dinner table rules and avoid conversations about politics and religion.  Doesn't mean we don't pray for each other, we just don't push on each other.

I'm totally in awe of your handicap seeing as I stink at golf... my work buddy shot a 5 handicap and made me look like a total bush league amateur.  I generally shot in the low 100s way way back when I golfed... wouldn't know which end to hold these days.   Do things as easy as you can... a cart might be a fabulous idea as might be a caddy... anything to lower the output and increase the happiness.  It's gonna be little changes like that to make the days last a little longer and be a little less exhausting.

Great to hear you've been having good results from your Duloxetine.  Pretty much everyone tries it but few seem to be the lucky ones.  I hope the good response to it continues.  You've got the right attitude in sticking out the short term side effects and waiting till you had something to evaluate.  With fibro you go for the 5% solutions, the treatments that give you a 5% benefit, because the treatments that give you more are rare and often non-existent.  It varies for each person how they will react to each med or treatment so take the good results when you can get them. 

I'm looking forward to getting to know you better.  Kick your feet up and enjoy, we'll keep the lights on for you.

Fox

[countryboy]

It seems that I find just the right mixture of meds and for a few months they keep me on a fairly level pain level of around a 5 with some slight ups and downs.  Then for some damned reason it all seems to go to hell and I have to start all over trying different meds to try and get to a level place on the chart that is below a 7.

I don't know if they are changing what goes into the meds or at what level, but they do seem to keep me on a roller coaster at times.  The 'flares' can last from just a couple of days to a month or more before there is a break through. We have a saying around here about going slow with everything that we do.  But as we are mostly men with big egos, when we feel fairly good we tend to over do things and then we are hung out to dry for a while.  SO......slow and easy with what you do.  It makes for better days and usually less pain.   

[Robby]

Welcome, everyone else has sang the praises of the our board, so I won't waste the time of doing it again, I'll just say all of it is true. Now for the prognosis, I have had fibro symptoms my entire life, but it wasn't until I was 32 and broke my back that it got bad. Since 2002 when that happened it has slowly gotten worse, and at this point I very seldom get out of my recliner without just putting myself in bed for a week. But, it really isn't as bad as it sounds, yes I do get depressed from time to time because I can't do like I used to, I went to high school full time and worked 3 jobs at the same time, then in my 20's I worked 50-70 hours a week. After getting married I quit working so much to be with my family, but I would sit in the living room at night watching tv with them, and spread newspapers out on the floor, and work on car parts, or build something we needed, because I just couldn't do nothing. I have learned to sit still, now I sit in the living room in front of the tv, with the family, but I have my computer on a stand that slides in and out, so I pull it over in front of me, and I keep my mind busy working on different things.

Last year I had a job through Social Security, working from home as a call-center customer support rep. Once I get moved I'm going to try to get back into that but it depends on the internet service, which is why I'm not doing it now. I have a friend that's in a wheelchair, he lives with his parents but they have gotten in real bad health, so about once a week I (or if I'm hurting my son) go over and run errands for them, because they have nobody else, if it wasn't for us they would die. My oldest son has a slight mental disability, so he can't work either, so we take care of each other. If I need something done he does it, I can send him to town for simple errands, but when he's having a bad day I'm here to keep him from hurting himself because he does stuff without thinking. So that works out good also.

The trick with living with fibro, is to change the way you think, you can no longer think "I can/can't do what I want to do", now it's finding the good in the way it is, not how you want it. Look at the two things I listed, I never would have thought that those were good things, I mean sitting at home to be there the two days a week or those times when his thinking changes like the weather, that just doesn't really sound good. But after doing it for a while, I see how good it is. How could thinking that your child has a mental disablity could be good, that's one of the worst things a parent can hear, but knowing he is here if I need a glass of water, or if I fall, or I have one of those sudden spasms, which makes it impossible for me to get up by myself, even though I have no choice but get up, knowing he's here is priceless. So just keep your eyes open for how the other parts of your life change, not the fibro, but the things around you that you interact with. It's not really one of those things you can go looking for, but when something happens look at it to see the possibilities.

I'm glad to hear that you haven't gotten depressed yet, but go back and read your post,

I never expected to be in this situation and it all happened very quickly. Some notes about myself. I am turning 63 tomorrow and this diagnosis has totally derailed me if my understanding of what it ahead is accurate. I am a total golf addict and have been planning my life around getting to 66/67 and moving to Florida for a retirement full of golf.

Of course the anxiety from speaking in front of groups is normal that's not even an issue. But, this is something you never expected, and never wanted, and over time it will make you hate your "New" life. The diagnosis "derailed" you because what is ahead. Then I can just imagine that after your sentence about moving to Florida, you left out that you wanted to say, "but now I probably won't be able to". Which not being able to do your long time dream for your life can piss you off, and again make you hate your situation. My point is, it makes sense that the most emotionally strong person will end up depressed. Now there are a lot of things you can do to either stay off the meds, or limit what you have to have. Now I had severe emotional issues before the fibro, so there are days now that I wish I could double my meds, but instead of doing that I will talk myself down "Ok Robby, you know that your just getting depressed, you don't really feel that way, so get over it, pull yourself back to reality", etc... By doing that I manage to control my emotions to a certain extent.

Now there is no guarantee that your going to get that bad, I do know people that have had fibro for many years that are still working, they have to have their pain meds and other meds to control their pain, but they haven't gotten worse as most of us do. I don't want to give you hope, but I do want you to know that nothing is guaranteed, so just roll with the punches, make changes to your routine as needed, don't try to force anything just do whatever you have to do to stay comfortable, without just giving up that makes it worse.

I look forward to getting to know you, so just jump in the conversations,
Robby

[ronr]

Welcome Jeff . . . and Happy Birthday to you!  You really don't want me to sing it.   


Fibro will not kill you but it certainly will change your life.  Learning to pace your activities becomes very important but you can and must still have activity, just maybe not as much.  You can still move to Fla. play golf and walk on the beach on a reduced schedule from what you had envisioned.  Your scores WILL likely go to hell though.

Flares - as has been said, come from many different triggers and can last a varying amount of time.  The only thing I don't see mentioned so far is weather and how that can change your pain levels.  Keep track of that for a while to see if that might also be causing some of your issues.

The pain fluctuates constantly for most of us from all the variables in our lives.  Being a Type-A personality is a huge influence in our lives.  Always the overachiever and compulsive perfectionist will be one of the things that must change in your life because it is one of the stresses that causes increase pain. 

Stick around with us as you invent the new you, which is exactly what happens as you adjust to what is thrown at you.  The crazy array of symptoms can make you feel like you are losing your mind as you try to figure out how they are associated.  It's just the FiBro as you will learn.

[db]

I would look into chronic myofascial pain which somewhere between 10 & 30% of people with Fibromyalgia seem to have.  They are characterized by having Trigger points in muscles that activated with use.  They are different than the 18 tender points that the doctors seem to focus on. 

The good new would be they are treatable.    I am able to golf a little at a time now but would not have been able to without the treatment. 

But we seem to all be very different and what works for some don't work for others.   

db

[wmoore]

Maxx hit it on the head. Fibro changes with time, flares fade, meds come and go(especially pain meds), Mentally function varies at different times(fibro fog), and the biggy is if you get Chronic Fatigue, which IS life altering.
Good luck on your journey in our afflictions, learn what you can, ask anything everyone here will answer if they can. Oh and welcome!     

[denny]

Welcome.
I hope thats apropreate i cant really read long posts anymore.
Keep doing what your doing as long as possible.
I hate to see you get started on the drug merrry-go-round.just try one,then make sure your off it before you start another.

It takes a while to find whats right for you.dont give up.
I'd rather see you not on any drugs for as long as possible.

Sorry to get personal so soon,i guess i got on a roll.
Drugs suk man,unfortunatly nessiary.

[db]

Yes, finding the right drugs can be difficult.  It seemed that most don't help but we are too messed up to really know.  It was only after I endured allot of therapy for my Myofascial pain that I thought I could tell.  Even then, I was convinced Lyrica was helping.  Now I don't need it so I wonder. 

I mostly need Neurontin and an occassional Vicodin.  Considering all the stuff they had me on, it seems remarkable. 

db

[denny]

Thats it db!
Im on 11 right now and i dont feel any better for it,maybe a little.
Half of them are treatment for side effects of other drugs!

[db]

This is sure to add to the confusion.     There certainly must be some overlap. 

I was always concern about taking too many meds but we are desperate, I know.   

db

[denny]

Yeah there is,but we best not steal this thread.unless JWB learns from it?
Should we start a new one?