[Travelinglady]

How am I? Very frustrated at the moment. I was diagnosed with fibro several years ago, but then I had a time of minimal fibro misery--maybe because I was on a cocktail of all sorts of psychiatric drugs (?) I also have Bipolar II. Now I'm having facial pain (atypical trimengial neuralgia) and have been put on Trileptal. Meanwhile, I was taken off all my meds except Klonopin for various reasons.....I started having spine problems and have received further disgnoses of cervical degenerative disc disease, osteoarthritis, and carpal tunnel in both wrists. My orthopedist said, though, that some of my back, leg, and arm pain was likely related to my fibro. But I have been told I can't go on any of the drugs for fibromyalgia, because of the bipolar and the interference with the Trilpetal, even though I am really having a flare-up. I take Tramadol and acetiminophen, but they ain't cuttin' it....

Thanks for letting me vent!

[fearfulfrog]

I have gotten a hold on the grief and have been able to be task oriented, but the anxiety is up there and the pain in my jaw, neck, shoulders and lower back is really bad. My change of meds three weeks ago has gotten mixed results- but with everything going on I don't know if I can accurately asses how they are doing- I haven't taken the PRN muscle relaxer- it works great at night- 30mins after taking it I can barely keep my eyes open- too much on my plate to be that drugged during the day!

[CedarS]

Originally Posted by fearfulfrog

I have gotten a hold on the grief and have been able to be task oriented, but the anxiety is up there and the pain in my jaw, neck, shoulders and lower back is really bad. My change of meds three weeks ago has gotten mixed results- but with everything going on I don't know if I can accurately asses how they are doing- I haven't taken the PRN muscle relaxer- it works great at night- 30mins after taking it I can barely keep my eyes open- too much on my plate to be that drugged during the day!

It is quite the balancing act we all end up walking.

[Travelinglady]

Had a pretty good day today--pain really down, I'm grateful to say. I'm really trying to pace myself. Also, I started PT with a lady who specializes in spine problems. She did some ultrasound (?) massage on my back and used a laser device on my face where I was having pain.

[chaosrob]

I went to the doctor to file a DNR, more or less because I have no desire to prolong a life where I have little emotion and suffer in chronic pain. He wants me to explain my reasoning for being so young and wanting such a document and as I explain it to him he tries to tell me that I have Fibromyalgia.

I have to say I was bothered he would even diagnose this at this time. Regardless of whether I have Fibro I already know the symptoms and treatments. I have been through the therapeutic and the medications several times over with different doctors for different reasons. To be diagnosed at this point with a "disease" that only exists because they lack better knowledge to say what is actually wrong actually succeeded in getting a rise out of me.

But then the doctor seemed so hopeful for me, and i just didn't have it in me to crush his hopes of being able to help me. I've been to my share of asinine doctors and the last thing I want to do is turn a decent one into a jerk because I refuse his treatment.

So I took his prescriptions with me, shoved them in my glove box and am waiting to go to the urgent care to get a doctor to sign my DNR.

My doc did agree to sign the DNR if I was unhappy with the treatment but I don't wish to wait the several months to tell him it is ineffective. My main motivation for the DNR is related to my blood pressure which varies between 170/95 up to 240/150. I already suffered a heart attack and a ruptured aneurysm in my leg. At this point if I have a stroke the last thing I want is to lose my intelligence. I've even decided to fore-go the use of my blood pressure/ heart medicine. If they could explain why my BP was so bad maybe I'd be willing to deal with it at this point, but I am tired of treating symptoms for problems they can't identify.

I may be only 27 but I've lived a longer life then most, if I am at peace with death then I see no reason I can't make proper arrangements like someone who is elderly.

[Travelinglady]

Yeah, I didn't know there were DNR restrictions according to age. I'm concerned, though, that you're so miserable. There are new drugs that have come out for fibro. A friend of mine is singing the praises of Lyrica--and she says the benefits will be worth any weight gain that she gets. There ARE doctors who are good and understanding about fibro and chronic pain. Maybe you can ask around. I don't know you, but I think you certainly COULD have some good times left!

[fearfulfrog]

Payne1- I wish I could say the same about Lyrica- I haven't had much relief- about the same as on neurontin- but the weight gain is terrible! With the fibro it is hard to remain consistent with exercise, so it is tough to lose weight- if you restrict calories too much ( I am inactive) your body holds onto everything you do eat!

chaosrob- I also was told I could not file for a DNR; too young ( 40 at the time) and that I needed to be diagnosed again- because the 6 other doctors- PCP. rheumotologist, pain specialist, allergist- etc) hadn't right???

I understand waiting for a new treatment- but there has to be a limit on how much and for how long we deal! Everytime I go to a new doctor they confirm fibro, then add another diagnosis- cause that one has a treatment that works and MAYBE if we fix that the fibro won't be as bad. I say- freeze me and wake me up when they have a pill to instantly make you your goal weight ( I will take it every day if need be) and they have a CURE for fibro- all the research is looking for treatments- is anyone looking for a cure?

I believe I would like to get leperosy- they don't feel things, we feel too much- shouldn't they cancel each other out and we will only feel what others do?

[Travelinglady]

Hi, it's PAYNE1, again. I've told my story about why PAYNE1 is my name elsewhere, but suffice it to say here that it started with my thinking about how much "pain" I was in. I'm having a lot again today. I keep asking myself, "What did I do to bring it on?" and I'm sure underneath that sometimes is, "What did I do to deserve all this?" I also have some other health conditions that have been disagnosed that also cause pain such as degenerative disc disease and carpal tunnel in both wrists. I do wish there was an easy answer and a quick cure.......I want to live to see my grandchildren, though, so I guess that's one reason I don't want to give up. But, I can understand your feelings about the DNR's......

[MDDBPDPTSD]

Sorry you are hurting. I have not been doing well myself recently & am scheduled to see the rhuemitologist tomorrow. Yippee!

Originally Posted by Anonymous81711

I thought we could have a thread like neurotalk does to check in and tell how we are doing day to day or week to week ect.

So how is everyone doing?

I'm in a pain flare unfortunately, not too bad yet but its pretty ouchy, i might go to our little hospital tonight if it gets any worse.

[chaosrob]

in case anyone out there has some really great insurance or money to burn here are some treatments that seem to get great results, one is surgery and the other is chiropractic but they both work on the same principle. It begins with an area in your upper neck... read more if you are interested and if anyone knows more info please contact me....

http://www.myalgia.com/Treatment/Sur...20by%20RMB.htm

http://www.naturalnews.com/008526_fi...ctic_care.html

[griffenfirefly69]

Hey glad to see this place maybe someone can offer advice for pain control. Right now I'm hurting. Doesn't help that I also need to have joint replacement. Between the two I never know which to treat so guess I'll treat both. Just know that the more I hurt the more postal I become and the less stress I can take. Just didn't realize when I was younger and thought I was indistructable that I would fall prey to my own bady. I am using fentenal patches for pain and otc med for inflamation. The doc says I'm too young for joint replacement and need to go until I can't bear the pain, he just doesn't seem to realize that I didn't go to see him until I couldn't stand the pain.

[kovusmom]

Fibro is a beast. Pain medication does help me and makes the days bearable though I am no longer able to work. My cognitive deficits were interfering with my ability to do my job so it was either go out on disability or keep messing up at work. Do any of you have the memory problems that are part of fibro?

[lizardlady]

Originally Posted by kovusmom

Fibro is a beast. Pain medication does help me and makes the days bearable though I am no longer able to work. My cognitive deficits were interfering with my ability to do my job so it was either go out on disability or keep messing up at work. Do any of you have the memory problems that are part of fibro?

Oh kovusmom, do we have memory problems!! Somewhere in the forum there is a "fun with fibro" thread that lists some of the sdilly things we've done because of memory problems. There are days my memory is so bad I feel like my IQ is slipping away.

[Travelinglady]

Goodness me, I live in "fibro fog." And combined with the arsenel of drugs I take, it's a wonder I can remember how to tie my shoes.

I am actually doing fairly well right now. But I have to say that I really pace myself in trying to get jobs done around the house. Plus I seem to be having less pain now that I'm on Carbatrol. I've never heard that it helps all sorts of pain. I was put on it for trigiminal neuralgia (facial pain.)

[CedarS]

I feel just plain rotten. In a fibro flare along with a bad migraine. Possibly some sort of cold and flu in the mix too.

Noticing today that this is really affecting my mood. I'm extra aware of grief and pain in the world.

But there is a cat purring contentedly next to me. I live now in a safer quieter more comfortable place than 6 months ago. My sweetheart is due home in an hour or so with pizza from our favorite place. The house is neat and tidy, I was able to do my chores. I have this laptop and so much more to be grateful for.

I hope the truck that keeps driving over me will eventually drive on down the road and leave me alone. I hope the combination ice pick/hammer that keeps hitting me in the head eventually quits.

I know this will pass eventually.

I sound more reasonable here than I feel. As many of you know - fibro puts us in another world. I wish you all didn't have to share this world with me but I am grateful you are here.

[Jewels]

you and me both payne...i find myself in a bit of a fog myself with the arsenal of meds i am on myself for fibro and other physical pain i have...

i have never heard of carbatrol...but am glad that it seems to be helping with your pain level...

my pain level is off the charts right now...and it's affecting my whole body...my shoulders and neck hurt a lot too...and i find myself almost slumping over because it is so bad...

oh well, one day i will feel better and that will be that!

Jewels

[CedarS]

I'm better today. Tired and achy and sorta foggy but okay! Helps that I don't have a migraine. And that my chores are all done and that I can rest up.

Hugs to all of us that go through fibro days and nights.

[sabby]

((((((((((( Cedar )))))))))))

Glad you are feeling better today! We've got to enjoy these days to the fullest!

[CedarS]

Originally Posted by sabby

((((((((((( Cedar )))))))))))

Glad you are feeling better today! We've got to enjoy these days to the fullest!

I so very much agree, something I am training myself to recognize. The days of pain and fog can seem to blur together otherwise. I'm actually doing pretty good at this - reminding myself to be grateful for the easier times, to celebrate and enjoy those.

I made a point to write something positive in this thread when I had something positive to share.

Thanks for the support!

[sabby]

Good for you Cedar!!!!

**************************************************************

On another note.....I think I have something more than fibro going on these days. It seems that over the past year, things seem to be getting worse. Pain flares are more intense, they move quickly from one place to another, more joints being involved on more occasions. Sleep is depressing....I can't seem to get more than 5 - 6 hours a night and it's not restorative sleep at all. I'm finding the need to nap almost every day.....this is definitely not like me! I have no energy to do even the slightest bit of housework, also not like me. When I do something physical like cleaning the bathrooms, litter box or gathering the recycling together, I'm just completely done in for the rest of the day....totally exhausted. I never used to leave dirty dishes over night in the sink, now I'm lucky if I get them done at all the next day. I'm using the dishwasher much more (I hate using the dishwasher, its a waste of water and electricity). My mind is in constant fog alert....short term memory is................crap what was I going to say??????? *sigh* See???? I don't know....any ideas from you wonderful folks would be appreciated!

[Jewels]

((((( sabby )))))

i know exactly what you are feeling...i find it difficult to get into a place where my whole house is neat...I have never left dishes out either, and the more resolve I have about getting them done, the longer it seems the dishes remain...

and not only the dishes, but the litter box, the toys of the dog on the floor...the dining room, the bedroom...grrrr...

it seems like my best time is between 9 and 12 in the am...any other time I need to lay down, or at least rest with my feet up...then it seems that I am drained and need some protein to get me going again...you might try a protein shake or cheese sticks, or yogurt, something to get you going again...

i stumble around in a fog a lot of the time...seems my mind gets lost in whatever it is I am supposed to be doing, only to realize many hours later that I have lost time again...grrr...that is what I wish I could do better, be in better control of my parts...so at least I know what is happening more regularly...

do you think the pain flares happen more when the weather is unstable where you live? I know for days in advance when a major storm is coming because my joints will all be tender and sore...epsecially this last storm...we got 7.2 inches in 5 hours...it was horrible...oh well...at least I survived it without going absolutely bonkers from the pain...

and last but not least...at least i dont think so anyway...is the memory thing...i dont know what to tell you to do about that...I have the same problems...and I don't know where its coming from...there are times when I am quite lucid and bright...other times when the bulb is dim from overuse and I can't quite see what I was going to say...focus factor is supposed to help...but taking concerta has helped me some in that dept to keep me more focused and level headed...

i find if i pace myself, and not run from one thing to the next, trying to get in as much as i can, but doing either one room at a time, or a couple of rooms at a time, i find i can accomplish more...now if only i could remember where I put things I would be so much better!!!

and remember, don't take yourself so seriously...your dishwasher will survive being used...and your dishes will thank you for giving them a bath!

Jewels

[sabby]

Thanks ((((((((((( Jewels )))))))))))

I have no idea when my best time is anymore. I don't seem to have one now. I like your comment about using the dishwasher...hehehe. Great point!

I guess what I will do is write down the different things that are happening now, or the things that seem to be getting worse and call my doctor. Money is a huge thing right now. I have no health insurance, haven't had any for years now. I'm not getting any younger and I know how one's health needs more attention as we get older. *sigh* Onward I will struggle.....just like you and all the others do and I'll try to stop complaining now


sabby

[Jewels]

(((((((((( sabby ))))))))))

having no health insurance is not a good thing, especially when we are getting older...do you think you might qualify for Medicaid? I would certainly go and check on that, because all they can say is no, and you would not have lost out on anything that might potentially help you...it is worth a check into...

I am glad you are keeping close watch on your health...you are important to so many!!!

Jewels

[fearfulfrog]

Just thought I would update. Meds are working most days- as long as I don't do anything! most serene days ( up+ about the house maybe an errand or two but no house cleaning) my pain is about a 3; but ANY housework or a long walk makes my pain go up to 6 or 7 and I have to take muscle relaxer and narcotic pain reliever to bring it down. I feel like this is just the way the rest of my life is going to be.

[sabby]

(((((((((((((( fearful ))))))))))))))

It's good to hear from you. I'm sorry that doing anything around the house exacerbates your pain. I'm sure it's frustrating for you as well.

I do hope that things get better for you hon.


sabby