Fibro Friends!

[Trinity_Acres]

[SIZE=16pt]I read the post that someone started about Fibromyalgia and purposely didn't respond because I've been battling some emotional as well as physical battles for the past couple years. I didn't know what I thought or believed. [/SIZE]

My mother and her sisters have FMS and my late grandmother had it. I grew up hearing about everyone's aches and pains. I thought FMS was a big farse. My brothers and my cousins used to say they were just hypocondriacs and figured they just wanted attention.

Well, I have a confession to make. I'm 41 years old and I've been exhibiting symptoms of FMS over the past couple years but disregarded it figuring I just had the flu or just over did it. (Can you say DENIAL??). I didn't want to be like mom or my aunts...I didn't want people to think or say the same things about me that I use to say. Usually the bouts I had lasted a few days and with lots of rest and OTC pain medication the pain went away. Last Wednesday I woke up in tremendous pain. I went to work and it just got worse. It was so bad on Thursday that I had to call in sick. I went to work on Friday and was near tears by the afternoon. Going home was not an option. Tomorrow will be an entire week of pain.This is the longest and most painful incident I've had to date. I can't imagine what some of you have had to deal with for years. I'm so sorry.

I'm going to my doctor first thing tomorrow morning to try and get some relief. My mom has been dealing with this for many many years and I see how limited she's become. I fear that I am following her footsteps. I have restless leg syndrome and sleep apnea as well as migraines on a regular basis which is common in people with FMS.

Right now, I feel like I'm going mad! Even typing or sitting at my desk becomes so painful I can't hardly function. My mom is now totally disabled and stays home to take care of my dad with Parkinson's. I've also had tremors since I was 18. I've been told to let my doctor know if the shaking gets worse or stops responding to medication because Parkinson's is hereditary. My dad's father had it too.

Maybe it's the fact that the pain is wearing me down, but I've been very fearful lately of what my future holds.

I know that fear doesn't come from God and I have to keep reminding myself where my fear comes from. But, I'm so exhausted and hurt so bad right now. Just today I was sitting at my desk near tears wondering if I'll be able to work much longer. What about my petting farm? I'm scared. My arms and legs feel like they're tied to bricks and altho I wasn't real tired my eyelids were very heavy. My hands and feet feel swollen and they burn and ache. I have no idea why this came on like it did. I went to bed completely fine, just very very tired.

All this is to say, although I've not been officially diagnosed with FMS, I'm fairly certain that's what is going on. I'm certainly a believer...this pain's not in my head. For those who may read this and think this disease isn't real. It's definitely very real and very miserable. I'm living this h*ll. I've apologized to my mom for not giving her pain more credence and I apologize to all those on the forum that have battled with this disease. I will be praying for everyone who is suffering this horrible pain.

Unfortunately, my hubby still thinks this is all in my head and that I need to stop thinking about it. I want to tell him, "Let me light your feet and hands on fire

when you have the flu and then tie them to concrete blocks and then I'll tell you to stop thinking about it and it's just in your head." I'm hoping that he'll see that I'm not doing this on purpose and that I actually do feel like trampled road apples and be more supportive.

In the meantime, I'll keep coping, try to stay positive and pray! ~

Thanks for letting me share!

Janine

 

[Feather1414]

I am so sorry! I really am. I hope you feel even the littlest bit better!

 

[Relic]

l don't know of anyone with this but have read some on it and watched a show last year on women with Fibromyalgia and it wasn't very pleasent. l feel very sorry you had this happen to you and hope you can at least get some relief and a little more understanding from others. l think people have a hard time with that one because it isn't anything that really shows so they think it's in the head.

 

[sharon]

Janine- I am one of the very unfortunate ones who is living with this hellacious(sp?) disease. I've been officialy diagnosed for about 2 1/2 years now but know that I have had it for at leat 10 years. So many tests I had to go through to find out that I'm "healthy as a horse" cause all tests I've had show there is nothing wrong.

I honestly was thinking that I was a hypochondriac as each test came back with negative results.

The key thing with fibro is to get a doctor who truely believes in the disease and who actually listens to what is going on with you. I had been sent to a rheumatologist and he is the one who diagnosed the fibro. However, after going to him for 2+ years I found out the hard way(another story) that he really didn't have a clue as to how much pain I was really in. I had to fire him. He cause me to lose $1000 a month income from disability payments.

I belong to a forum called "FibroHugs" and have gotten some good support there. All us people on that forum have pretty much decided that fibro is not degenerative, but is progressive. Meaning that it is not like MS where you end up not being able to talk, walk etc. BUT....things do tend to keep getting worse, as in more pain, more symptoms etc.

Here is a letter that they provide on that forum for fibro patients to print out and give to friends/relatives who are non-believers, or who just don't get it.

The Letter To Normals
Hello Family, Friends, and Anyone Wishing to Know Me,

Allow me to begin by thanking you for taking the time out of your day to spend some time with me and get to know me better. A person’s time is their most valuable asset and yours is appreciated.

I want to talk to you about Fibromyalgia (FM) and Chronic Myofascial Pain Syndrome (MPS). Many have never heard of these conditions and for those who have, many are misinformed. And because of this judgments are made that may not be correct… So I ask you to keep an open mind as I try to explain who I am and how FM/MPS has assaulted not only my life but those whom I love as well.

You see, I suffer from a disease that you cannot see; a disease that there is no cure for and that keeps the medical community baffled at how to treat and battle this demon, who’s attacks are relentless. My pain works silently, stealing my joy and replacing it with tears. On the outside we look alike you and I; you wont see my scars as you would a person who, say, had suffered a car accident. You wont see my pain in the way you would a person undergoing chemo for cancer; however, my pain is just as real and just as debilitating. And in many ways my pain may be more destructive because people can’t see it and do not understand....

Please don’t get angry at my seemingly lack of interest in doing things; I punish myself enough I assure you. My tears are shed many times when no one is around. My embarrassment is covered by a joke or laughter, but inside I want to die....

Most of my "friends" are gone; even members of my own family have abandoned me. I have been accused of "playing games" for another’s sympathy. I have been called unreliable because I am forced to cancel plans I made at the last minute because the burning and pain in my legs or arms is so intense I cannot put my clothes on and I am left in my tears as I miss out on yet another activity I used to love and once participated in with enthusiasm.

I feel like a child at times... Just the other day I put the sour cream I bought at the store in the pantry, on the shelf, instead of in the refrigerator; by the time I noticed it, it had spoiled. When I talk to people, many times I lose my train of thought in mid sentence or forget the simplest word needed to explain or describe something. Please try to understand how it feels to have another go behind me in my home to make sure the stove is off after I cook an occasional meal. Please try to understand how it feels to “lose†the laundry, only to find it in the stove instead of the dryer. As I try to maintain my dignity the Demon assaults me at every turn. Please try to understand….

Sleep, when I do get some, is restless and I wake often because of the pain the sheets have on my legs or because I twitch uncontrollably. I walk through many of my days in a daze with the Fibro-fog laughing at me as I stumble and grasp for clarity.

And just because I can do a thing one day, that doesn’t mean I will be able to do the same thing the next day or next week. I may be able to take that walk after dinner on a warm July evening; the next day or even the in the next hour I may not be able to walk to the fridge to get a cold drink because my muscles have begun to cramp and lock up or spasm uncontrollably. And there are those who say “but you did that yesterday!†“What is your problem today?†The hurt I experience at those words scars me so deeply that I have let my family down again; and still they don’t understand….

On a brighter side I want you to know that I still have my sense of humor. If you take the time to spend with me you will see that. I love to tell that joke to make another’s face light up and smile at my wit. I love my kids and grandbabies and shine when they give me my hugs or ask me to fix their favorite toy. I am fun to be with if you will spend the time with me on my own playing field; is this too much to ask? I love you and want nothing more than to be a part of your life. And I have found that I can be a strong friend in many ways. Do you have a dream? I am your friend, your supporter and many times I will be the one to do the research for your latest project; many times I will be your biggest fan and the world will know how proud I am at your accomplishments and how honored I am to have you in my life.

So you see, you and I are not that much different. I too have hopes, dreams, goals… and this demon…. Do you have an unseen demon that assaults you and no one else can see? Have you had to fight a fight that crushes you and brings you to your knees? I will be by your side, win or lose, I promise you that; I will be there in ways that I can. I will give all I can as I can, I promise you that. But I have to do this thing my way. Please understand that I am in such a fight myself and I know that I have little hope of a cure or effective treatments, at least right now. Please understand….

Thank you for spending your time with me today. I hope we can work through this thing, you and I. Please understand that I am just like you… Please understand….

Copyright of www.fibrohugs.com Written by Ronald J. Waller

 

[ChrystalPaths]

Sharon, that letter was so perfect.

Janine your pain is so very real. Grab hubby by the balls and hold for a count of 10 then let go. Then say, "oh PULEEZE....it can't hurt THAT much."

Did you smile? Chuckle? Good.

We here at "PainPals" so understand your fears, frustrations and hopes. Here is a nice warm hug. May I make a suggestion? Can't hurt. Seriously.

Call your local hospital and ask if the have someone who does "REIKI".

2 yrs ago I was on here in so much pain I couldn't stand or sit. I dicovered I had herniated 5 discs. I have degenerative disc disease and now they want me to see a rhumatologist and a neurologist as my pain is trebled since I took a tumble last week.

Tow yrs ago I called my local hospital on the recommendation of a beloved forum member and asked. Sure enough I hit the jackpot. Cecelia combines 3 healing helping things: Reiki, massage therapy and accupressure. Let me tell you after an hour with her ($35) I felt so much better. I went for 3 mos 3 times weekly. THEN I learned how to do much of this myself.

Do a web search on Reiki & accupressure. It is a life saver. I have been perpetually disappointed with the medical professionals of life. For some reason "pain" just baffles them. It's one after the other saying take this pill or that pill instead of trying to really help us.

Ok, off my pedastal now. We who live with pain that would tumble the most strong understand and empathize. You can PM me for more info. There is a natural; dare I say spiritual; way to heal without drugs.

Warm soft hugs to all in pain.

Namaste

 

[Shari]

<<Hugs>>Janine . Am so sorry you have to deal with this.

Am part of the pain club too and like you, sometimes have a hard time dealing with it. If you need someone to talk to, I am here!

I also can't take the drugs the Doc's offer (most of the time they don't work anyway). In time your body can learn to adjust to some of the pain. When the pain is really bad I take Advil, which will sometimes take the edge off.

Was having Acupuncture done and it was really helping. However I moved and can't find a good one this far out.

So Acupuncture might be something for you to look into.

Eating healthy will also help some folks, no caffeine, eating very little sugar, trying to stay away from the Plastic fast food.

Here are a couple of good links. There is more information out there now, than say even 5 years ago.

http://www.healingwell.com/fibro/

http://members.aol.com/fibroworld/

 

[Trinity_Acres]

[SIZE=16pt]Thanks everyone. Sharon I agree with Dimi that letter is very well written. I can relate completely! Maybe not to the extent of his pain but it's all I can handle without losing it! (BTW Dimi, I liked your suggestion for hubby

...I have been feeling very mean lately.) [/SIZE]

I went to my doctor this morning and she's fairly certain its FMS but wants me to have MORE bloodwork done to rule out Rheumatoid Arthritis and Lupus. Neither of those sound any better!

I talked with my boss today and expressed my concerns regarding being able to do my duties at work. I'm very worried because I'm not able to stay focused It's so frustrating because I know I'm capable and this past week, I'm a different person. I keep messin' up. It's humiliating because like the letter said, I feel like a child.

I'll be sure to check out those sites when my hands don't hurt so bad. Right now, I'm takin' mom's advice and taking life a day or hour or minute at a time. I really hope to wake up tomorrow in no pain.

Thanks again for your help and support!

Janine

 

[justjinx]

oh, janine, i can so feel for you! i have fibromyalgia also, though i do not think it is quite as bad as yours. then again maybe some of my anti-depressants mask it, i don't know. i have a combination of disorders and i know people look at me as "lazy" sometimes. i push so hard to take walks with my minis when everything hurts, but i have finally learned to say "i have to stop now, this is as far as i can go". i try to take rests more often now and let others around me know.

i am glad there is a group for you and i hope you will feel you can email me at any time!

hand in there---i KNOW it is HARD! bless you! jennifer

[email protected]

 

[littlehorse2]

My mom has FMS and she's in severe pain almost all the time. She had to quite a job she loves to do this yaer because she can't get out of bed some days. She worked with handicapped kids as a para in the school district. They told her that if she took any days off they'd fire her. She been in this school district for over 10 years, she can't collect unemployment. SHe's trying for MAsssHealth and disability, but she's not hopeful that she'lll get either one. My dad is an amputee with conjestive heart failure and he can't get disablility.

I'm only 28 and I'm starting to have some of the problems my mom has. I get migranes and I'm tired all the time, I can't walk very welll because I have plantar facitis(SP?). I have pain some days and I have 2 kids that are 3 and 6. It hurts just to go for a walk or to exercise and that's why I'm over weight. Which doesn't help the situation. My mom was just diagnosed 3 years ago after going through this for probably 9 years. The doctors didn't know what it was for the majority of those years.

Christy

 

[Pepipony]

Is FMS real? H*** YEAH! its real! I hate when people make comments about invisible illnesses that they havent the first dadgum clue about. For years I was sore/sick/ill , whatever, knew something was wrong, was passing out, had such fatigue it wasnt funny. Drs thought I was nuts or just completely misdiagnosed me. Ended up I have Lyme with some cardiac issues. Of course I am 'lucky' enough to have FMS, MS, MPS and more as side diagnosis

The best thing to do is find a Dr that you trust, that will listen and that will not just stop at the FMS dx. Yes, there is FMS, but there are also numerous illness' that can cause the FMS so you must rule them out. Especially since FMS has no real defining test , but is a group of symptoms.

Dont know what to tell you about your hubby, mine knows I hurt and he fully believes me. Maybe you need to go postal on his arse

 

[SWA]

Prayers uplifted for you Janine! Sending you love and hugs!

In His Hands,

Tanya