Another Newbie to the forum

[rwilli]

    Hello AKS,  Glad you found us. Have you looked in the new to FM, I forgot what it's called now, if not have a look there. There is a post about Grieving, which the whole family will go through. Each of you will be moving through"stages", it is not a straight line. Everyone of you will be going back to get through the issues that weren't resolved the first time through. Then all of you should have talks about how each of you are doing, and which stage you might be in.

      It is a long process to fully get through all the stages. Grieving is a real process, and is needed to get you and the family's loss behind you.. The whole section is full of info for the newly diagnosed.

     Speaking of being diagnosed to be able to apply for Social Security Disability Insurance   it is mandatory to have been diagnosed by a rhuemy to get SSDI. it looks like you already have been given a lot of info already,just keep reading, then ask as many  questions as need.    go slow    rwilli     OH....This is like our bible so look for a used copy at Amazon   Fibromyalgia& Chronic Myofascial Pain,   a survival guide    second edition    By Devin Starlanyl     it will be a big help in you getting your head fully around FM/CMP I just bought the second edition for $3-4 dollars. it looks new.

[aksoutherland]

Hey rwilli, I am glad I found you guys too. Not that I would ever wish this on anyone, but I am glad that I am not alone. I have read many encouraging posts on the site. This site has already helped me out quite a bit. For that I am very grateful. I have been reading the different stages of grieving, plan on sending it to the wife as well. I think that all of us could benefit from reading that.

I will look up the book, I am all for gathering information about FM.
I have started a search for a rheumy that will give me a definite dx, I think with the help of Google and my dr I should be able to find one.

The hardest part of this, is knowing what I used to be capable of, and learning what my new limits are. I used to be the person that everyone knew they could call for help with things like moving, home repairs, pretty much anything involving physical labor. Now I have days were I don't want to get out of bed, or take out the trash. I am working on making mental adjustments and trying to keep a positive outlook, but as I'm sure you know, that is very hard on some days. I know that the wife hates seeing me like this, I went from being in the middle of everything, to I have to try extra hard to get motivated to be a part of anything. And the more people or activities that are involved, the harder it is for me. But I hope that in time that will improve.

Last week was pretty rough, I cut my dose of savella down to 1/2 of what I was taking, I think it is making a huge difference. A couple more days like this will tell for sure.

Anyway, thanks again for the welcome and the book recommendation, I will definitely check it out.

AKS

[aksoutherland]

So I finally ordered the book that you suggested rwilli. It should be in this week.
I have read tons of articles online regarding FM. Most of them list the same symptoms. But I have not yet found any sites that list all of the symptoms that I have. So, I have some questions.....
For starters, I am taking 50mg Savella every morning. It seems to be doing good at keeping me functional.
I take fioricet for my headaches, and if I am having muscle spasms that keep me awake, I take baclofen. Not sure if it helps the spasms, but it does knock me out.
Here is a list of the symptoms I have documented over the last couple of months.
night sweats
constant aches and roaming pains
dizzy spells
stiffness (sometimes extreme) after periods of inactivity (especially after sleep)
muscle spasms
headaches
always thirsty (I drink 200+ ounces a day of fluids)
excessive sweating
fatigue
hands, legs and feet ache almost all day long
the aches and pains are not relative to physical activity
foggy brain, lack of concentration at times
pain in left eye (as in my eyelid hurts, but hurts in different places throughout the day, and only in one eye)
arms and hands tingle (but not constantly)
more easily bruised
my hips, legs and feet ache when I stand after having sat for any length of time
sometimes I feel as though my heartbeat is hard (not too fast or too slow, just powerful, like i can feel it thumping in my chest)
sometimes I get winded easliy (often it is doing something that caused no problems before, or isnt even that physical)
and the newest one, yesterday, I was sweating, had been in the heat for a couple of minutes, and when the wife touched my arm, she told me it felt cold to the touch
I can tell when the weather is going to change, and weather changes seem to make the symptoms worse

Like I said, I have been reading about this for a couple of months, but have yet to see a list of symptoms that includes all of this. I am sure that I have left some out, but most I have kept documented for my next doctor visit. Most of it I can deal with by distracting myself, unless the weather is changing, then it is hard to tune out.

Any thoughts anyone?

[Vio1ion]

Pretty much the same symptoms that I have myself. Except that physical activity is related to pain, in my case.

[aksoutherland]

Thanks for the response, that makes me feel better. I have however discovered that when I have sore muscles they hurt more than they used to.

[ronr]

I have seen all those symptoms listed and more.  Then there is always the disclaimer at the bottom of the list saying that you might not have all of the symptoms but might have others that are not listed. 

It seems like such a strange combination of symptoms we get going at times, accross multiple body systems, that it makes it hard for even us to believe.

Just for those not familiar with the terminology:
Baclofen is a muscle relaxer according to http://www.drugs.com/search.php?searchterm=baclofen&is_main_search=1

Fioricet is acetaminophen.  http://www.drugs.com/search.php?searchterm=fioricet&is_main_search=1

[Zathras]

There was a link on another site that had a list of 63 symptoms that have been reported by FM sufferers. I would post a link to this article but unfortunately the other site is down and has been for several months. Not sure what is going on or when they will be back.

[foxgrove]

Bingo AKS!!!  Like Vio1ion, physical exercise creams me badly but there's nothing there that isn't common to fibro folk.  I'm sorry that you suffer as we do but take some comfort in knowing that you are NOT crazy because you have all these symptoms..  If you are still crazy outside of that, well... welcome to the club.

I noticed that you mentioned what meds you take for certain pains.. have you tried certain physical therapies for specific pains??  For instance, I know that when I get that huge knot in my lower back that feels like a softball, it's time to break out the thumper massager, the cold spray, and my full body stretching routine.  When the pain shoots through my calves, it's time for my achiles stretches and some walking followed by a cool down in lukewarm water (85° or so.. I can't tolerate cool or cold) and then heat therapy with my electric heating pad.

Walking, massage, swimming, water exercise/stretching, acupuncture, chiropractic, heat therapy, stretching, TaiChi, Toga, Pilates, TENS, topical creams, etc etc etc... they are ALL a very important part of your daily pain reduction regimen and can REALLY make the difference between ending the day with a bang or a whimper.

Just wondered what things you have found to relieve your specific pain?

[aksoutherland]

Well, I guess I am going to be a member of the crazy club... LOL

I haven't started any type of therapies yet. I just don't sit still for very long so I don't get too stiff/sore. I get up about every 30 minutes or so and walk around to keep from getting too stiff and sore. Then stretch my back and shoulders a bit.

Otherwise, I keep a hefty dose of various geeky gadget toys and ebooks around to keep myself distracted from the aches and pains.

For the most part knowing that I can distract myself and not sitting still too long tends to do the job.
That makes for really sucky morning though, getting out of bed and walking for the first time of the day smarts real good...... it will take about 15-30 minutes of limping around and a hot shower to get things to loosen up to the point where I feel I can walk normally/function.

I agree ronr, sometimes it is just hard to believe that I can have such a broad range of symptoms, this has been a difficult pill to swallow.
On a side note, I think the Savella is making a huge difference. I haven't missed a day of work in 2 weeks. But there have been a couple of days where I pushed pretty hard to make it through the day. (some days it's not worth chewing through the leather straps to get out of bed) 

[foxgrove]

Glad you are able to keep it all together.  If you want to see a drop in your overall pain level and a boost in your energy levels, try adding in some gentle therapies in there.. a stretching routine for wakeup.. stuff like that.  I understand COMPLETELY the stiffness when you wake up or try to get up.  That's when stretching really makes a difference.

I love that... not worth chewing through the straps.. lol..

[aksoutherland]

Hello everyone,
I hadn't been around much in the last couple of weeks. Aside from hurting a little more than normal, Fibro fog kicked in and I forgot to check in on the forum. Then when I did check in, I would get sidetracked before I was able to post anything. Anyways... enough of my excuses.

I went back to my primary dr and she put me on a new med. Been taking it since last thursday. She put me on amtriptyline. She started me out on 25mg a day. I am taking that along with the savella.

http://en.wikipedia.org/wiki/Amitriptyline

I have been more active, and generally in less pain since about Saturday. I think it is helping. ;)Well, I am pretty sure it is helping. I definitely feel a difference. My wife and my employer have both noticed a difference. I still wear down, it just takes longer than it had.

So how is everyone on here, I see I have quite a few posts to read to catch up.

AKS

[AchinDude]

Well, I guess I am going to be a member of the crazy club... LOL
-------->   Fortunately, it is a very elite club.   Our club only permits the best of the best to obtain membership.

I haven't started any type of therapies yet. I just don't sit still for very long so I don't get too stiff/sore. I get up about every 30 minutes or so and walk around to keep from getting too stiff and sore. Then stretch my back and shoulders a bit.

-------->   You HAVE just entered into the first important therapy associated with fibro, it is the if you don’t use it, move it, or work it, you’re going to lose it therapy.   Consider yourself lucky you have discovered this on your own.

Otherwise, I keep a hefty dose of various geeky gadget toys and ebooks around to keep myself distracted from the aches and pains.
-------->   That is another type of therapy, diversion.   Take it or make it in any form or fashion you possibly can.   It may sound silly, just like the “use it, or lose it”, but it will make the difference in your day.  My doctor said something once, “Fibro gives you so many good hours every so often, and it is up to you how you use them.”   I thought she might be a little “OFF” ... but as time goes by, it has more and more meaning to me each day.

For the most part knowing that I can distract myself and not sitting still too long tends to do the job.  That makes for really sucky morning though, getting out of bed and walking for the first time of the day smarts real good...... it will take about 15-30 minutes of limping around and a hot shower to get things to loosen up to the point where I feel I can walk normally/function.

-------->   I have all my morning meds next to my bed now.  In the winter months, I make a pot of coffee the night before, and put it in a thermos.   Meds, bottled water, and hot coffee all within reach when I first get up.   99% of the time, I have to wait until the meds “kick in” before I even attempt to walk, move around, or attempt to see if the sun is shining outside....   My body is not working, and all the nerves talking to each other so I bobble, and wobble around until there is some small sign of coordination.   
     Can’t help myself, so I’m going to throw out a few pointers:   

Laugh!  Every time you laugh, something somewhere gets healed just a little.   
There will be times when you want to cry, figure out how you can deal with the need to get it all out, don’t hold it in, as it grows and turns into anger.  So, laugh & cry...   Learn to do both if you have to...

You’ll find over time, your selection of “friends” will dwindle.   Those that treat you the same before fibro will be far and few between.   Hang on to all ou can, and learn the power of making new ones still dwells within you.

Support:   As insulin to a diabetic, support is vital to a man with fibro.   Preferably, if you can find a local support group, join it.   If there isn’t one, consider starting one.  If you don’t’ have local support, then come here.   But don’t even think for a minute you can deal with all of what fibro dishes out alone.   Being able to talk to someone who knows what you have been through, are going through is so important to you being able to cope with fibro.  I can promise you, when someone here says they understand, it is because they have been where you are, or been through what you may be going through.  As a member of MWF, we are all connected together by much more than computers, wires, satellites, etc... we are connected together by our fellowship, our brotherhood, in the never ending battle we face from day to day.   When you have a day you need a little uplifting, come here, and you’ll probably find it.   But at the same time, if you feel someone else needs a little boost, give them one too.

I agree ronr, sometimes it is just hard to believe that I can have such a broad range of symptoms, this has been a difficult pill to swallow.
-------->   There are some days, when I find it almost impossible to believe what my body is doing, and what in the world may be going on.   And over the years, I’ve answered tons of emails from guys who are in the same boat, wondering why it is happening to them.   If you think about this, it is sort of funny.   But I’ve made appointments with the doctor for a set of various symptoms, and when I finally get to the appointment, they have disappeared, and have been replaced by entirely a completely different set of symptoms.   

Just one more!     That is what I like to call the “Do it yourself Syndrome”   You’ll discover you may have to “do it yourself” and do the research for the doctor, the nurses, or those in charge of your medical care.   You will have to “do it yourself” when it comes to creating awareness and education for your friends and family, or at least for those willing to be taught.   You may have to “do it yourself” when you have to try and explain fibro to your place of employement.   You will soon become a “do it yourself” expert for this “It’s All in Your Head” disorder. 

Some have called the MWF forum a “home away from home” a place, and various other descriptions, but it is the one place on the entire Internet you can find a group of “brothers” if you will, who will be more than willing to help you as you travel down the pathway fibro tends to lead you.  They will point out the pot-holes, point the way, and pick you up when you have fallen down....   and they will expect you to do the same.


-------->   So in short, welcome to our crazy world!   Just come back more often.........


BOB

[aksoutherland]

Hello AchinDude,
Wow, That's quite a post. You have given me quite a few things to think about.
First off, I am glad to be a part of the club.(even if it is a part of the crazy club) I should fit in just fine.
I try to stay somewhat active (within reason) so that I don't get too sore/stiff, I also have a severe fear of not being able to do the things that I like. I don't want to be an invalid. I need to be there for the kids, for the wife, and the rest of the family. Therefore, I refuse to give up.

I do a lot of research and am very much of a "do it yourself" person already.  I got lucky and have a doc that doesn't get offended when I present info regarding my symptoms. She listens with an open mind. Most importantly, she listens.

I try to keep my environment light, lots of laughter and joking around, both at work and home. It does help. I know that I always feel better if I laugh. I have laughed, and I have cried since this started.

I am glad to have found this site, I have already gained quite a bit from here.