Topic : Living with Chronic Pain

Oh, if it were only that easy to answer you.  I will try to be as brief as possible and give some web sites for more information. 

  

Part of the problem is that the "jury is still out" on this condition.  Every week, it seems, something knew is learned about fibromyalgia syndrome (FMS).  I learned recently that it is now being classified as a central nervous system disorder with abnormal amounts of some hormones and neurotransmitters.  The three primary symptoms are sleep disturbances, extreme fatigue, and chronic pain in 3 of 4 quadrants of the body.  (I'm deliberately ignoring the details of tender points, etc.)  There are many other symptoms FMS sufferers experience and many other conditions that are not considered FMS but seemingly go hand-in-hand such as irritable bowel and/or bladder, dysmenorrhea, dry eye/mouth, osteoarthritis, etc.  To date, there is no known cure because the specifics of the causes are still under investigation.  Treatment is primarily to do whatever you find to help relieve symptoms without doing harm.  FMS is highly individualized so what works for one may not work for another, and what worked at one time may not work any more as our bodies change due to health, circumstances, age, physical and emotional trauma, etc.  So one needs to learn to be adaptable.   

  

The National Fibromyalgia Partnership is a very good organization and has a good website I recommend at www.fmpartnership.org.  If you wish to become a member, you will receive a quarterly publication that provides the latest updates on research and activities regarding FMS.  The National Fibromyalgia Association at http://fmaware.org/ also has an excellent website with very good information and links.  They, too, have a publication which you receive with membership.  It has more of a magazine format.  "Fibromyalgia AWARE" can be found on some magazine news stands.  Although I received mine in the mail, I did see it at Barnes and Noble.  Although each publication has its own purpose, personally I prefer the latter. 

  

I hope I am not coming across as someone that I am not.  In past posts I have not provided much personal information.  I could write a book about most of my 64 years but I won't.  That was then and this is now except for what I learned.  (I hope I learned because I wouldn't want to have to go through the events again for the purpose of learning!)  But let me share this much with you that will give you an idea of why I am well informed on FMS and very careful in how and what I write. 

  

Approximately 2 years ago I requested from my employer a reasonable accommodation by teleworking due to my FMS.  I will state it was a government facility and I had worked there for 29+ years.  I was a working technical manager in a department of one!  Most of the work I did was on the computer and could be done from my home.  In fact I had been working 60-80+ hours/wk since 1998 with all the overtime hours being done from home.  The concern at the time of my request  was that I was working to meet a major deadline of 8-31.  This meant working in my eleventh floor office (the top floor with west windows) all through the summer.  Every summer I complaint about the extreme heat and humidity and in the past had even been sent home early in the day by physicians who had offices on the same floor because I was light-headed, nauseated, and sweating profusely.  I could not envision my being able to meet this deadline if I had to work in that office.  So I requested telework with flexible hours as a reasonable accommodation .   

  

My employer would not consider my request until I provided a physician's statement.  I had included one with my original request but my employer had a form they wanted filled out.  I looked at the form, gave it back, and asked them to state specifically what information they wanted because the form did not apply--information such as when did the symptoms first begin, what were the results of the abnormal lab and x-rays, etc.  (For those who don't know, FMS patients don't have abnormal lab and x-rays.)  So we were at a stand-off.  They wouldn't consider my reasonable accommodation request without further physician documentation and I said I will ask my physician to respond to any reasonable questions you have to ask about fibromyalgia but I will not ask him to fill out this form which is a waste of time nor will I ask him to write textbook information about fibro. 

I thought my employer should be able to look up some basic information about fibro--in fact, I even printed documents from some websites which provided the very information I knew they wanted and gave it to them. 

  

They did grant me telework but not as reasonable accommodation which they later rescinded on 8-25 after I called in for sick leave because I had fainted after taking my shower and fell flat on my face on the vinyl bathroom floor (it was my day to work at the office).  I could have worked from home but I could not have driven the 20 miles to and from work and worked in the office all day.  I knew how much work needed to be done before the 8-31 deadline and knew that I could finish it by working steadily from home.  But when they rescinded my ability to work from home, they took from me my ability to meet the deadline so on 8-26 I retired.  I had just had my 30-year anniversary 3 weeks before.  I have since filed a disability discrimination claim against them. 

  

When one gets into this setting--law and government--and intends to win, one must become an "expert" in both in addition to one's disability.  I read and search, and read and search, sometimes the same sites over and over again.  I print pages, then forget where I put them, find them, organize them, then forget how I organized them, etc.  But the bottom line is I have had to take charge of my own case at this time (attorney comes later) and have become much better educated about FMS than I probably would have been under other circumstances.  And for me it has helped to know as much and understand as best I can what is happening. 

  

Thanks for letting me share this. 

Danielle, 

  

I can understand your wanting a miracle.  You are truly in a delicate and difficult situation.  Miracles do happen!  It is good to pray to God, to tell Him how you feel and what you want.  But we also need to thank God for what He has given to us, and to ask Him for His Will to be done.  If your mother is in such terrible pain, it may not be in her or your best interests to continue living as much as losing her would hurt.  Continue to pray, and ask God to do what is best for your mother.  Also ask God to give you the strength to support your mother through this time. 

  

May God Bless You! 

  

Marcellyn Fowler 

Dear Helpless, 

  

Last night before retiring I began thinking about you.  I can't explain it but the thoughts just came to me while reading a book.  I could not concentrate on my book because of my thoughts of you.  This is not meant to belittle you.  I'm just trying to convey how strong these thoughts were.  But, I must confess I was unable to do anything about it last night.  I had just taken my nightly medications and they were taking effect.  I was unable to follow through until today. 

  

So now I am asking where you are today?  And more importantly, how are you?  A week ago you asked for help and you were wondering if we were afraid to talk with you because of your disease.  I'm sorry but apparently I missed a message where you stated what your illness is.  Others on this message board have offered also to talk with you.   

  

Please respond.  Correspond with one of us.  We  would like to be of help even if it is just to listen but this requires some input from you also.  The fact that you wrote your initial message shows you are not helpless but you need to follow through.  Let us know how you are! 

Hi Prof...the drastic cure is very drastic, it is a 50/50 chance of survival.  This cure is to go to the hospital, get your bone marrow taken out, cleaned and separated, then go on a long 3 months in isolation during your chemo, the last part of this is if your liver doesn't start to work then you are dead, if it does work, then you live.  At this point, my liver is already in danger, so i couldn't go for that cure even if i wanted to.  If my liver, gets better and that cure is available I just might do it.  I live in Canada and we have a bus that is called "para transpo".  This is the bus that i take to my appointments.  The only problem with the bus is you have to call 1 day ahead, and that becomes very frustrating.  The phones are always busy.  My sister is the only person that drives and she has the car only on her day-off which is always monday.  the other days of the week she works and her husband takes the car.  My mom no longer drives as she feels at her age she doesn't need to drive.  I have tried and tried to get a couple of my friends over but they always say  "I'm busy or I got called into work" etc..Its very disheartening.  I get that same answers from my sister, she promised the grandchildren, or she promised on of her kids.  I ask her in advance and I still get put to the end of the line for when she has time. 

  

pandas 

Quote:  I tried Cymbalta, but it kept me so nauseated i wento off of it after only a few days.  was wondering if anyone else had those side effects from it and if the side effects subside.  Also, I was worried about the weight gain from Cymbalta,  has anyone seem themselves gain weight from Cymbalta? End Quote 

  

Nausea. Severly so. Kept throwing up like mad over new years and Christmas last year, making my lose my pain medication ending me in the hospital with pain seizures again. 

  

Weight gain. Yes. Even though I could hardly keep anything down, I gained a lot of weight. OK, the OXyContin did it fair share since it slows down your metabolism and you retain water since it ups your antidiuretic hormons. 

  

My body also got dumb, physically and emotionally. At the time of my Cymbalta experience, I had been married only a month. Before that, my husband and I had been separated for almost 18 month. We had some catching up to do when I went frigid. I didn't have one thought about making love, or even having him close. I couldn't have been more far from my real me. 

It took almost 3 months after getting off a month of Cymbalta before I finally returned to normal. 

  

I have in total gained almost 30 lbs, which is the same ammount I gained the first time I had the chance to be on OxyContin (in Sweden teh first time, now in the US since over a year) 

Even though I have much better mobility, eating better and healthier food since I have energy to cook, I kept gaining and I can not lose it. I have given up all white... white sugar, bread, rice etc. I eat sallads instead of potatoes, rice or pasta. So I am at least not gaining more. 

  

It is the only side effect I have of OxyContin. 

  

My herniated disc has caused me some really bad trouble and pain lately and I will need to adress that with my pain doc this month. We are both in the mindset to keep me out of surgery for as long as we can. By not lifting anything heavier then a teakettle, helped it settle down enough that I didn't have constant sciatica from it, but last week it started up again. My chiro adjusted me and it got a bit better, but as soon as I sit for more then 15 minutes, it comes back. 

  

On a happier note... As I said earlier, I am from Sweden. I still have my 12½ years old daughter there, living with her father, bonus mom and kid sister. Jessie came here for the holidays and it was great to see her!!! She flew over on her own (I have a brave kiddo) and she and my husband was finally able to connect with each other. Since Jessie is in 6th grade now, she has been studying English for 6 years (even if the first 4 years are more a playing around with words) and she is doing very well. She is in the top of her class in Engllish and has been accepted to start German, one year before you usually get allowed to. 

  

So she was here for the holiday and left yesterday. Today I came down with the nasty flu that is going around. Talk about luck! I just hope I haven't passed it on to her before she left. 

It was great to have her here, but it also showed me how little energy I still have. Since my husband is working full time (well, more then full time since he is in webdesign and does a lot of overtime due to launching of sites), I am only use to tend to myself. Sleeping as much as I need and not having to entertain a preteen out of school.  

So it showed me where my weaknesses lays still, so I know what I need working on. 

  

tata 

malin 

I have many problems, some of which are chronic back pain and suffer from colitis.  I've had 2 back surgeries and I had my large bowel removed due to severe bleeding from colitis.  I also suffer from depression but that seems to be getting better and better.  But there are times when it does get to me.  My biggest problem is that I just can't seem to keep my apartment clean.  There's always dirty dishes in the kitchen and there's always junk around my chair where I sit most of the time in my living room.  I just moved in to this apartment this past June and decided that I wasn't going to store anything away until I've gone through the boxes and get rid of stuff that I don't need or want anymore.  The problem is that all these boxes are still here and I just don't have the ambition to do it myself.  I've asked my friends and relatives to help me but no will.  I've even tried to hire people to help and they just don't stick with me long enough to get it done.  I'm sure that if I could just get my place put together that I would feel better about things and myself.  Right now, I just don't.  No ever comes to see me.  Even if they did, there's really no place for them to sit.  It's not like boxes are stacked to the ceiling.  In fact, if I were to count all the boxes, I would estimate that there's about 15-16 boxes to be sorted.  If I could just get motivated to even go through one box at a time, that would help.  My problem is that I don't know what to do or where to put the stuff I want to keep.  The really odd thing here is that I do love to organize things, but just not my own stuff.  Once I get going I can usually keep going.  I just don't have the ambition to get started.  I seem to work better if I have someone to work with me.  I actually work with seniors in their homes and I can go there and clean and help organize their stuff.  I just can't seem to do it for myself.  Why is that?  Why can't I do it for myself?  It just seems like when I get home, the last thing I want to do is do what I've been doing.  I used to teach private music lessons and did so for 15 years until I got sick with colitis and lost all my students.  I still have a lot of that stuff from my studio.  I'm ready to get rid of most of it but I just don't know what to do with it all.  Please!!!!!!!  I really need some help and advise on what to do and how to do it.  Can anyone help me?  Thanks for letting me ramble.  Mayflower (Marge) 

  

MY STORY: I do wonder if I should visit the doctor to check for arthritis.  I am always in a constant state of pain.  Aching,  sharp pangs,  not only due to my weight,  but how my left leg grew.  I have an extremely rare bone disorder,  I actually don't know if there's anyone else out there with this,  but my left leg didn't grow properly. 

• Left leg is bowed out.
• 1.5 inches shorter than right leg.
• Caused by abnormal growth in bone plate.
• No definitive diagnosis.

I got tired of trying to find real answers,  and decided to live with it.  The pain is getting worse,  everyday I worry that my right leg will become this way aswell,  which would lead me to a likely conclusion: rare bone disease.  There is far too much weight for my legs to handle,  which is definitely something I have an answer to.  I need to make some big changes,  and although I probably can't fix it(without dangerous surgery),  I will be thankful if it doesn't snap.  Because if I break that leg,  in theory,  the doctors could be put in a complicated situation,  because it is not a normal leg.  I can't work,  walking around in stores is enough to wear out my leg.  And as you can imagine,  my hips,  lower back,  neck,  and everything else is in a constant state of pain,  because I can't hold myself up properly.  There is no dramatization here,  it is all real.  I don't take any drugs,  and I'm better off because of it.

my illness has mental health issues and physical issues I have yet to find out what is causing my severe left sided pain I have had several tests done and most recently an MRI and yet another chest x-ray which is quite painful for me due to this pain I did not sleep last night at all I 'm going on no sleep due to the fact that I was out of my mental health meds and my pain pills did not fully kick in  as you can see I am not well at the moment  I will keep in contact with you if you want me to 

hello xplay -- 

  

is the condition of your left leg congenital? 

when you say that you have an "extremely rare bone disorder," does that mean you have a diagnosis for a part of the bone disease [for the congenital part of the problem, maybe?]?  

one more question!  what makes you think that your right leg will also become "this way as well"? 

  

some orthopedic surgeons won't deal [surgically] with young people who may still be growing -- but it can't hurt to have a roadmap of what may be possible. if there is a surgical option you may be pleasantly surprised by the rapidly improving orthopedic options. i am friends with a young man who had great results by having the work done in stages.  at the time, it is frustrating and it seems the clock is standing still, but poof!  the end is worth the wait/ 

  

arthritis is really painful, as you know.  i get irritated by folks who say "oh, it's just arthritis." mine, as is yours, is caused by a much more serious bone disorder -- which results in some bone-on-bone contact as well as "bone death."  i don't want to leave out those folks who also have a rheumatic form of arthritis, or those poor people who suffer both.   

  

it sounds like you have an excellent understanding of what is going on -- but i plead with you to not just "live with it." YOU ARE 17 YEARS OLD!  you have lots of living to do -- so why not get yourself into the best shape you can for that journey? 

  

i am trying to maintain some muscle and bone in my legsand arms with a dual action exercise bike.  i also have this much cheaper bike thingy -- you can use it from any sort of chair.  i've seen it advertised from around $50 to $100.  yes, both of these things cause some pain at first, or each time you step it up in speed.  i have found some great books on tape [i am listening to narnia now] and music, of course.  and, yes, there is always t.v. -- ahem, like the dr. phil show. 

  

good luck with all of these undertakings.  you seem very level-headed --  

be well -- 

  

prof-de-rien 

  

  

  

I just wanted to let you know if you want to read more of what has happened to, I am writting a shared diary called "Everthing in me"  If anyone does read it I would love some feedback on it. 

  

Thanks pandas