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Old 04-18-2007, 12:08 AM   #1
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Question New to board, new to FM, not new to pain.

Hi. I've read a lot of postings on this board and I know a lot of this has been covered by other board members, but the possibility of having FM is new to me, and I don't know where to start on this forum, so I decided to post a (hopefully) brief history of my symptoms.

I'm a 51 year old flight attendant. I flew for nearly 25 years, but I've been on a long-term medical leave for almost 5 years, beginning when my symptoms became unbearable. I went from a very active lifestyle flying to Europe and Asia, to being nearly housebound and unable to do basic daily household tasks.

I was in 3 auto accidents within a relatively short timeframe, and I was also physically assaulted which resulted in head and neck trauma. All my physical problems started at this time.

I've now been sick for at least 5 years with progressively increasing pain throughout my entire body. I've seen many, many doctors who don't seem to be able to understand me or help me. I saw a doctor this week who thinks I may have FM. I have the following symptoms. Do these symptoms sound like common or typical symptoms of FM?

Pain in head, neck, arms, hands, legs, feet, lower back, upper back, hips.
I was diagnosed with IBS (severe symptoms including cramping, bloating, gassiness, diarrhea, and constipation).
Inability to concentrate or focus on tasks (FM fog).
Difficulty in sleeping (insomnia, wake up feeling exhausted).
Headaches (24/7).
Occasional nausea, particularly when eating a meal.
Muscle spasms in eyelids and in facial muscles.
Dry eyes (feels like sand in my eyes).
Skin hypersensitivity.
Extreme fatigue and muscle weakness.
Sometimes I feel a strong need to lie down and sleep throughout the day. (Sometimes I sleep pretty much all day this way.)
Sleep paralysis (waking up and being hyper-alert but being unable to move any muscle in my body for up to several minutes.)
Panic Attacks.
Diagnosed with PTSD.
Mental confusion and inability to concentrate or focus on tasks.
Exacerbation of symptoms in times of stress.
And there's probably more symptoms I'm forgetting to list.

The worst part of it is the chronic pain. I am in terrible, unbearable pain from head to toe (literally!) every hour of every day. I can hardly walk anymore because my feet and legs hurt so much. My hands hurt so much that I can barely type on the keyboard.

I recently had epidural injections for pain in my lower back due to a lumbar radiculopathy (bulging discs) and from the day of the injections my overall body pain has been 100 times worse. The pain management Dr. can't explain it, and told me he no longer wants me for a patient. (He made me hurt worse, then he dumped me!)

I currently take several meds for the IBS symptoms, and Vicodin and Tramadol for the pain, and I get frequent Botox injections in my eyelid area for the spasms (I've had the spasms for 5 years and only recently got the Botox injections which immediately stopped the spasms).

I feel like I'm losing my mind and worry that I'm going to die from a disease that the doctors can't diagnose. No Dr. has been able to help me. Then this week a new Dr. says it may be FM.

Does this sound like symptoms of FM to those of you who have it?

Thanks for any input, I appreciate it and hope I've found a place where there are others like me who know what this feels like and who may have suggestions or ideas and experience with different treatments.

And one last important question is, how do you manage to live with this debilitating condition? How do you get through the days with this intense pain?

Peace and good health to all.

Last edited by EverythingHurts; 04-18-2007 at 01:56 AM.

 
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Old 04-18-2007, 06:51 AM   #2
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Re: New to board, new to FM, not new to pain.

welcome everything,
how do i live with this? do you have it? big questions. yes the symptoms you describe sound like they can be fibro. now, if you have it we move on to how do i live with it.
when i first started on this journey i was an emotional wreak. ended up in a wheelchair and bedridden for the better part of a year. one morning i got really angry. at myself for rolling over and playing dead. realized the only way back was by effort and finding the right helpers. first and most important was my head shrinker. 9 years of that. graduated with honors. it was finding the right doctors for me. went thru 17 in my search over 7 years. now i have 8 doctors who assist me in my quest for the healthiest body i can achieve. this means i force myself to exercise, knowing it is my best healer. it means i am the one responsible for how my life goes. i choose fear or i choose joy. i chose joy. fear is the best friend and feeder of fibro so it is not allowed. fear is evaluated, a course of action found and action taken to remove that fear. it works.
attitude. it all comes down to attitude. i choose to live my life fully. i am the same age you are. i kayak, hike, swim, sculpt, paint, garden, drive, walk, run!!! yea, run!! sure it took a long time, but see, with fibro we have tons of time to get as well as we can. i went up to 198 at my worst. i am now back to 125 and holding. i believe in myself. i am strong within where it really counts.
i also take days off to allow my body to be sick. to know pain. to stay in my hot tub or bed all day. why not? there are no rules about how one must live their lives. i checked. no rules. only the ones we set for ourselves.
ptsd. sorry kid. me too. for the rest of our lives there will be triggers. each trigger is an opportunity to safely see the injury done long ago, the affect it is having in this moment and a healing. healing each trigger as it arises. this will be the rest of our lives so learning how to work thru each experience is vital to using those moments as healings instead of intense revisitations of that fear.
i also studied the human mind. read all my shrinks books from school. all of them. studied language too. the words we use are all the rest of the world has to know us by. i get more help from my friends now that i know how to ask and how to handle being told no if they are unable and not take it personally.
most of all i stop and smell the flowers. i have the time now. i don't have to rush off to work or anywhere for that matter. i can simply be and breath.
again i welcome you here. may you find peace and good friends.
peace,
bluelakelady

 
Old 04-18-2007, 11:59 AM   #3
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Re: New to board, new to FM, not new to pain.

To the OP yes I suffer with all the things on your list. like blue typed you do have to make yourself be strong where before it was just an after thought.

yes you will go to many many doctors with this (unless you get extremly lucky) and the possibility of being dumped by a doctor, friends, family etc are now a part of life. sad I know. be cause THEY dont believe you.

The doctor who told you fibro I would go back to him and follow through at this point it could not hurt right? learn as much as you can about this symptom..or invisible diease or call it on a larger picture ONE of the symptoms of lyme's diease because after all the question is at least for me is what caused this crap? what is the CAUSE? and what is it going to take to cure me of it? (I am not holding my breath)

Just to type this for you might help..you are not alone with your symptoms ALOT of people have them and alot of people say that an auto accident is when their symptoms started or surgery or just cant remember when or what cause the symptoms of fibro and cfs ..you get the picture right...but most important dont let no body tell you or make you feel like a fake or crazy. LET thoes same people walk in your shoes for 30 minutes.

thoes shots you mentioned most folks that I read about with fibro getting them said either they made them hurt worse or didnt work at all or helped some first or second time then stoped helping at all.

~take care and hang around~ hugs

Bluelake Lady you are amazing! I want to grow up an be just like you!!
The advise you give is so down to earth and you have a way with words I could only dream about..thank you for being you because you give me hope and make me stop feeling sorry for myself on a really tough day!

 
Old 04-18-2007, 12:26 PM   #4
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Re: New to board, new to FM, not new to pain.

BlueLakeLady, you are truly inspirational!

Your words and advice show a genuinely warm, caring, and understanding person. And you also are a person who knows my pain, literally. Through all I will go through in the future in my endeavors to understand and conquer this condition, I will always remember how you touched me with your inspirational words.

I am a great believer in believing in one's self, and in the fact that only YOU can take care of YOU. But it is so demeaning and frustrating when people and doctors choose to disbelieve you and discount your pain through their ignorance.

In times of great pain it is so difficult to forge ahead. It wears you out, as I'm sure you know. I have been battling illness for 5+ years now. The unhelpful and condescending doctors (and their ignorant and uncaring medical staffs) can be so frustrating. I know I'm not crazy, and I know that they are the crazy ones. But that doesn't help me to get the medical help I need.

Yesterday I woke up early to go to this new doctor, the 5th one I've seen in less than 2 months. I awoke in so much pain; I could tell that it was one of my worst days, and I hadn't even gotten out of bed yet.

The effort of having my coffee and taking a shower and getting dressed seemed nearly insurmountable tasks. The thought of leaving the house and driving myself to another Dr. who couldn't help me was more than I could bear. For the first time, this illness had me in tears. I thought (once again) that I just couldn't take it anymore, as I was too worn out to even get myself to the Dr.

But I pushed myself and actually got to the Dr. I was braced for another wasted appointment with an uncaring cold-hearted Dr. who would say he couldn't help me. But when I went in to the Dr.'s office, this time it was different. He looked at my paperwork and listened to my story. Still in the emotional state of earlier in the day, I expressed how I was so worn out from trying to get help that I didn't think I could go on much longer. I told him I just can't imagine living in this pain for the rest of my life. (Not suicidal, just frustrated and finding it hard to push myself to get out of the house.)

That's when he told me that I may have FM. He referred me to a medical center where there are a team of Dr.'s who will attend to every aspect of my health, from the PTSD to the spinal problems, to the possible diagnosis of FM. He said this medical center (MARIANJOY) specializes in this type of treatment, and he thinks they can help me. I have an appointment for May 10 for an evaluation.

Although I don't want to be ill at all, at least the possibility of having a name for this illness makes me feel that there may finally be hope for me in dealing with my medical problems and getting the medical help I need.

In searching the internet for FM info, I found this message board. I spent a couple hours reading the postings and realizied that I am not alone in dealing with this horrible pain. And although I wouldn't wish this illness on anyone, I take comfort in knowing that I am not alone. Through shared knowledge and experience we gain education and hope, and that's what I hope to find here.

Bluelakelady, you and the Dr. I saw yesterday have given me the first rays of hope that I've seen in a long time. And for that I thank you.

Last edited by EverythingHurts; 04-18-2007 at 12:29 PM.

 
Old 04-18-2007, 12:56 PM   #5
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Re: New to board, new to FM, not new to pain.

Cantell, Yes Bluelakelady is amazing, and so are you!

Thanks for your reply to my posting, I appreciate your input very much. I am going to follow-through with the Dr. I saw yesterday (see my reply to Blue). You're right, it can't hurt! (At least not as much as everything already hurts, LOL!)

Again, thanks for your comments. I appreciate hearing from anyone who suffers from this illlness. We can learn from one another, and knowledge will help us all to deal with this illness. I know I'll learn a lot from all of you who suffer from this condition.

 
Old 04-18-2007, 02:13 PM   #6
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Re: New to board, new to FM, not new to pain.

hi everything,
you are most welcome. anytime. hope is a light we burn for each other. leaning on each other is the gift we share. we all take our turn leaning and we all become each others rock. it is what humans do.
your words are kind. i am honored. please know there is nothing special about me. all i have achieved you too can have. determination and attitude. a womans best friends in time of need. her joy in time of plenty.
i am glad you are heading forward to a place where help is possible.
cantell you silly. you are going to grow up to be just as strong and joyous . . . and words will become your magic too. i know things.
peace,
bluelakelady

 
Old 04-18-2007, 09:54 PM   #7
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Re: New to board, new to FM, not new to pain.

wow! EverythingHurts said exactly what I've been thinking! to at least have a name for my tons of little complaints makes it a bit easier to deal with

"at least the possibility of having a name for this illness makes me feel that there may finally be hope for me in dealing with my medical problems and getting the medical help I need."

 
Old 04-18-2007, 10:27 PM   #8
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EverythingHurts HB User
Re: New to board, new to FM, not new to pain.

Yes, it sure feels good to have a name for what ails you.

Up until now, I've been calling my condition "Everything Hurts" for lack of a better name for my ailments. (Now you know where I got my screen name!)

Every Dr I've seen asks the same basic question when they walk into the exam room; "What seems to be the problem?" (or something to that effect). My answer is always the same; "Everything hurts!"

And away we go! Wheeeeeee!

Last edited by EverythingHurts; 04-18-2007 at 10:29 PM.

 
Old 04-29-2007, 05:29 PM   #9
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Re: New to board, new to FM, not new to pain.

I have many of the same symptoms as you. I was in a car accident in 2002 and it has been a gradual decline from then on. My insurance doesn't want to cover anything anymore because they feel my pain has plateaued and nothing they will do will make me better, I don't know why we bother paying car insurance when they do things like this. I used to get some, temporary relief from massage, but now have no coverage. Currently they only relief I get is from my fentalyn patches, for pain... Although my facial pain is so bad that it doesn't seem to help much with that. I too get botox injections into my face, scalp and neck, but that too is treatened to be cut off. I am going to the specialists this week so hopefully I will get some much needed help. Have you had any luck in finding something to help with the pain? I feel for you and hope you get better. I know how hard it is to live with this and unless you go through this yourself it is hard for others to understand. If I hear of anything else that may be helpful, i will post again.

 
Old 05-19-2007, 07:06 AM   #10
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Re: New to board, new to FM, not new to pain.

Hi - I am also new to this board, but not to chronic pain and tests galore over a few years. I've been tested several times for MS, as I do have a couple of "unusual" images on my brain scan. However, my symptoms don't really lead there. It all started with peripheral neuropathy, mostly in my feet, legs and some hand involvement. Then progressed to pain in all joints, muscle pain and stiffness, a good case of brachial plexus neuritis that left my arm with nerve damage, fatigue, mental fatigue, blah blah blah! Sometimes I get this overwhelming fatigue that sweeps over me and I have actually fallen asleep while talking to people, and been unfit to drive. And a few times every tooth in my head has ached for a few weeks! No one knows what that is, but it's very uncomfortable.

My PCP did the pressure point test a while back, but I only scored on 8 of them. It hasn't been repeated but I think it is worse. The FM symptoms fit, especially since all other possibilities have been eliminated by my PCP, Neurologist and Rheumatologist. I suspect that a diagnosis is close.

My doc gave me vicodin for pain, plus cymbalta and elavil. This all helps tremendously, but no one likes me being on long term narcotic therapy. Nothing else works though, and if I don't take it my arm just won't function and there is so much pain that it really interferes with my life.

I do take lots of supplements, especially B's. I have gained too much weight with the inactivity of my life and need to find a way to get some exercise...I'm thinking aquatic.

I guess my question is this...Once diagnosed, are there treatments available to suppress this disease other than the pain meds, etc? Have they come up with a disease modifying drug, or is symptom control the only thing to do?

After years of not knowing what is wrong, it would be a great relief to finally put a name to it. However, I can't seem to find any real treatments...it seems kind of like each Dr.'s choice. Just curious if there is a common treatment among the members of this board.

Thanks!

 
Old 03-04-2009, 09:33 AM   #11
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applecollector HB User
Re: New to board, new to FM, not new to pain.

Hi,

I am fairly new to This board, but not to the pain. Years ago a dr mentioned Fibro when I had problems walking and feet hurting when getting out of bed---that had to be 6 to 10 years before the full blown sx's started.

I have been to 5 or more neuro's last one 3 years ago did tell me possible MS down the road (my current Dr is wanting me to go back)

Been to a pain management Dr who threw FM out the window said it was a waste basket dx---threw him out the window It took me two years to accept the dx and in one second he destroy all my confidence.

I had finely found an Internist that believed me in my pain and was helping and noticed something else wrong and sent me to my 5th neuro. However, he left town. The Dr that replaced him stayed two years and left, so since Sept I have tried another internist who again said FM was a waste basket dx--well you can guess what I did with him.

I am now with a Family Dr DO She put me on trimodal (oh I also suffer from major depression (I am 55) and have had it most of my adult life. The tramadol is helping some but not enough.

I tire very easy, there is so much to do and I just can't seem to do it. I was widowed in 2002, husband killed in a car accident. I have just recently remarried jan 31 2009, and went on a cruise---I have been on 3 since I lost my husband and this one I did not near enjoy. But that could be the stress of wedding etc.

I am probably looking at knee replacement and also have something wrong with left hip

The neuro who did dx me with fibro did not touch 5 of the 11 sites to dx me.

I have learned what I can and can not do---exercise I know I need to do something--however after joining a gym and three days later not being able to touch my own skin or roll over in bed without major major pain.

IBS
Osteopenia (75% level now)
disk problems
major depression
Acid reflux
Extra rib (found this out a few years ago after a fall)
vertigo
enlarge sternum (also found after a x ray and bone scan)
muscle spasms, body jerks
numbness, tingling in lots of places
pain around my rib cage at times feels like it is being crushed
hip and knee problems.
Have had several falls, last of which I don't know what caused it etc.

I also have a Sister with Fibro and Psoriasis Arthritis and not sure what else we have had a falling out and she will not speak to me.

In six years I lost my husband, year later my dad and then a year ago this month my mom.

I do believe stress brought this own---but I do not believe I am making my self sick and it is all in my head as one neuro tried to tell me


Sorry this is so long---

 
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