Fibro friends check in

[binny]

Hey Judy Thanks for dropping in. I hope youre doing well, did you guys move yet? Looks like we may be leaving the area all together. We will have to have one last meet before we go. I saw Tia's car at Target last week but missed her.

snells is right finding the RIGHT Dr is key. Mine kind of plays around a bit but she understands I hurt and is mor ethan willing to help with that. She wants me to talk about my "depression" I am not depressed. Mentally, aside from being frustrated out of mind when I have a flare, I am a happy well adjusted person.

Dolphin, the best thing you can do is to make sure you are getting a good nights sleep. I know it sounds basic but if I dont I am useless. Even then it isnt a guarantee but is a good start.

Here is a great letter that I found years ago and sent around to family and friends. It really helped my understand it a little more.


This morning I was fine, by 1 pm I lost all energy and had a hot bath, then I slept for 3 hours. I am SO grateful for a husband who "gets it" now.

(bolding in the letter are what I, personally, struggle most with)



Anyway, the post said feel free to copy and past to others. It really might bridge the gap


A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

 

[binny]

one more post, you know the WORST part for me?

Somedays I cant stand to be touched. I love to be touched and some days it just irritates me so badly or hurts so bad I want to cry. My Ds 13 still walks by and hugs me (Thank God for that!) and I smile and hug him back but somedays it just hurts to be squeezed like that.

I know these days are precious though and he wont want to hug me forever so I manage it. how can you tell a kid not to hug you?

If anything were to depress me, that would be it.

 

[TLSnell1981]

I think it an odd way....finally getting a diagnosis was comforting. I was almost diagnosed years ago (20 to be exact) but, "got better". My doctor thought I might have lupus. It makes me ill thinking of how many times I was told "it's all in your head....you're just depressed." Anti-depressants made me worse.

Binny...thanks for the letters. I know a couple of people I can pass them to.

 

[mommasita]

one more post, you know the WORST part for me?

Somedays I cant stand to be touched. I love to be touched and some days it just irritates me so badly or hurts so bad I want to cry. My Ds 13 still walks by and hugs me (Thank God for that!) and I smile and hug him back but somedays it just hurts to be squeezed like that.

I know these days are precious though and he wont want to hug me forever so I manage it. how can you tell a kid not to hug you?

If anything were to depress me, that would be it.

I know exactly what you mean

Your posts made me cry. Not in a bad way, but in way that says oh boy, somebody knows exactly how you feel, and what you are going through.

This is a great thread, for many of us to hug each other, and just know there are others who DO understand and offer shoulders to lean on.

 

[TLSnell1981]

I know exactly what you mean

Your posts made me cry. Not in a bad way, but in way that says oh boy, somebody knows exactly how you feel, and what you are going through.

This is a great thread, for many of us to hug each other, and just know there are others who DO understand and offer shoulders to lean on.

I have to admit...binny's fibro letters brought tears to my eyes too.

 

[disney kid at heart]

Hey Judy Thanks for dropping in. I hope youre doing well, did you guys move yet? Looks like we may be leaving the area all together. We will have to have one last meet before we go. I saw Tia's car at Target last week but missed her.

snells is right finding the RIGHT Dr is key. Mine kind of plays around a bit but she understands I hurt and is mor ethan willing to help with that. She wants me to talk about my "depression" I am not depressed. Mentally, aside from being frustrated out of mind when I have a flare, I am a happy well adjusted person.

Dolphin, the best thing you can do is to make sure you are getting a good nights sleep. I know it sounds basic but if I dont I am useless. Even then it isnt a guarantee but is a good start.

Here is a great letter that I found years ago and sent around to family and friends. It really helped my understand it a little more.


This morning I was fine, by 1 pm I lost all energy and had a hot bath, then I slept for 3 hours. I am SO grateful for a husband who "gets it" now.

(bolding in the letter are what I, personally, struggle most with)



Anyway, the post said feel free to copy and past to others. It really might bridge the gap


A LETTER TO THE HEALTHY WORLD FROM THE LAND OF CHRONIC PAIN AND FATIGUE

If you were born with healthy genes, you may know me but you don't understand me. I was not as lucky as you. I inherited the predisposition to chronic pain, fatigue and forgetfulness. I was diagnosed with fibromyalgia (FMS) after months, years or even decades of mysterious physical and emotional problems. If you have the time to read on, I would like to help you understand how different I am from you.

WHAT YOU SHOULD KNOW ABOUT FIBROMYALGIA

1. FMS is not the newest fad disease. In fact, it isn't a disease at all, and it isn't even new. In 1815, a surgeon at the University of Edenburgh, William Balfour, described fibromyalgia. Over the years, it has been known as chronic rheumatism, myalgia and fibrositis. Unlike diseases, syndromes do not have a known cause, but they do have a specific set of signs and symptoms which, unfortunately for the patient, take place together. Rheumatoid arthritis and lupus are also syndromes.

2. The many physical and emotional problems associated with FMS are not psychological in origin. This is not an "all in your head" disorder. In 1987, the American Medical Association recognized FMS as a true physical illness and major cause of disability.

3. Syndromes strike life-long athletes as viciously as they do couch potatoes. They can be disabling and depressing, interfering with even the simplest activities of daily life.

WHAT YOU SHOULD KNOW ABOUT ME

1. My pain - My pain is not your pain. It is not caused by inflammation. Taking your arthritis medication will not help me. I can not work my pain out or shake it off. It is not even a pain that stays put. Today it is in my shoulder, but tomorrow it may be in my foot or gone. My pain is believed to be caused by improper signals sent to the brain, possibly due to sleep disorders. It is not well understood, but it is real.

2. My fatigue - I am not merely tired. I am often in a severe state of exhaustion. I may want to participate in physical activities, but I can't. Please do not take this personally. If you saw me shopping in the mall yesterday, but I can't help you with yard work today, it isn't because I don't want to. I am, most likely, paying the price for stressing my muscles beyond their capability.

3. My forgetfulness - Those of us who suffer from it call it fibrofog. I may not remember your name, but I do remember you. I may not remember what I promised to do for you, even though you told me just seconds ago. My problem has nothing to do with my age but may be related to sleep deprivation. I do not have a selective memory. On some days, I just don't have any short-term memory at all.

4. My clumsiness - If I step on your toes or run into you five times in a crowd, I am not purposely targeting you. I do not have the muscle control for that. If you are behind me on the stairs, please be patient. These days, I take life and stairwells one step at a time.

5. My sensitivities - I just can't stand it! "It" could be any number of things: bright sunlight, loud or high-pitched noises, odors. FMS has been called the "aggravating everything disorder." So don't make me open the drapes or listen to your child scream. I really can't stand it.

6. My intolerance - I can't stand heat, either. Or humidity. If I am a man, I sweat...profusely. If I am a lady, I perspire. Both are equally embarrassing, so please don't feel compelled to point this shortcoming out to me. I know. And don't be surprised if I shake uncontrollably when it's cold. I don't tolerate cold, either. My internal thermostat is broken, and nobody knows how to fix it.

7. My depression - Yes, there are days when I would rather stay in bed or in the house or die. Severe, unrelenting pain can cause depression. Your sincere concern and understanding can pull me back from the brink. Your snide remarks can tip me over the edge.

8. My stress - My body does not handle stress well. If I have to give up my job, work part time, or handle my responsibilities from home, I'm not lazy. Everyday stresses make my symptoms worse and can incapacitate me completely.

9. My weight - I may be fat or I may be skinny. Either way, it is not by choice. My body is not your body. My appestat is broken, and nobody can tell me how to fix it.

10. My need for therapy - If I get a massage every week, don't envy me. My massage is not your massage. Consider how a massage would feel if that charley horse you had in your leg last week was all over your body. Massaging it out was very painful, but it had to be done. My body is knot-filled. If I can stand the pain, regular massage can help, at least temporarily.

11. My good days - If you see me smiling and functioning normally, don't assume I am well. I suffer from a chronic pain and fatigue illness with no cure. I can have my good days or weeks or even months. In fact, the good days are what keep me going.

12. My uniqueness - Even those who suffer from FMS are not alike. That means I may not have all of the problems mentioned above. I do have pain above and below the waist and on both sides of my body which has lasted for a very long time. I may have migraines or hip pain or shoulder pain or knee pain, but I do not have exactly the same pain as anyone else.

I hope that this helps you understand me, but if you still doubt my pain, your local bookstore, library and the internet have many good books and articles on fibromyalgia.

Author's note: This letter is based on communications with people throughout the world, males and females, who suffer from fibromyalgia. It does not represent any one of the over 10,000,000 people with FMS, but it can help the healthy person understand how devastating this illness can be. Please do not take these people and their pain lightly. You wouldn't want to spend even a day in their shoes... or their bodies.

Oh binny, thanks so much for posting this. I was almost ready to give up. I don't trust Drs labs or anything anymore. They dx me in 96 but but dermatologist told me 2yrs ago I had combination of autoimmune diseases but he broke his hip and retired so now I have been going to rheumatologist and she just won't listen. She took me off BP meds saying that's what makes my skin sunburn but my skin is this red all the seasons so of course now I'm having TIA's. I wish I knew how to copy this. It explains it all. Thanks again and prayers are being said for all of you going thru this painful disease.

 

[disney kid at heart]

I have to admit...binny's fibro letters brought tears to my eyes too.

 

[tigercat]

Wow that letter was something. I didn't know about the heat. I know that I can'ts stand heat and can stand cold better but not on certain parts of my body. I am under a LOT of stress right now and I hurt. It doesn't help my dh or kids help me out though. I don't know what to do sometimes because I get so tired even with an afternoon sleep. My house is a mess and I don't have the energy to clean. I have been told by others that I just have to get to it. No big deal. But it is. Also, I can't change Dr's because there are not a lot of Dr's in town so if you have a Dr already and a new one comes into town they will not take you. In Canada is fibro a disability? Does anyone know?
tigercat

 

[binny]

are you stinkin kidding me??? I actually fell asleep HERE at my desk. How does that happen?????

I woke up and realized that I ha dto go lay down so I made it to the couch where I slept for 2 hours.


What the heck is going on? I am not usually this bad.

 

[disney kid at heart]

Heat is horrible for me and I'll sweat profusely even when the temp is 50degrees. Good thing I drink a gallon of h2o every day. Hugs to all.

 

[Brianne]

Have any of you heard of Post Tubal Ligation Syndrome?

I've had the fibro diagnosis for about a year now, but I think it was just a "catch-all" diagnosis in the end. I was tested for lupus markers, the whole nine yards, and nothing was found.

PTLS seems to have a lot of the same symptoms as Fibro, but goes a lot deeper into women's health issues---cycle problems & such---which seems to be happening to me more and more. I had my tubal done almost 8 years ago, and in looking back, that's when a lot of my problems started, within the first 6 months after the surgery. It's been downhill for me since.

The doctor's having me get all of my hormone blood work done now, so maybe there's hope that there'll be a real answer for me soon. I hate feeling so miserable all the time; out of all the medications I've tried, the only one that helps is the Ambien CR. I look forward to being knocked out at night because that's the only time I don't feel any pain.

 

[TLSnell1981]

Have any of you heard of Post Tubal Ligation Syndrome?

I've had the fibro diagnosis for about a year now, but I think it was just a "catch-all" diagnosis in the end. I was tested for lupus markers, the whole nine yards, and nothing was found.

PTLS seems to have a lot of the same symptoms as Fibro, but goes a lot deeper into women's health issues---cycle problems & such---which seems to be happening to me more and more. I had my tubal done almost 8 years ago, and in looking back, that's when a lot of my problems started, within the first 6 months after the surgery. It's been downhill for me since.

The doctor's having me get all of my hormone blood work done now, so maybe there's hope that there'll be a real answer for me soon. I hate feeling so miserable all the time; out of all the medications I've tried, the only one that helps is the Ambien CR. I look forward to being knocked out at night because that's the only time I don't feel any pain.

I have had hormonal issues for years. All tests came back normal for a long time. I started going through perimenopause at 37. I was told TWICE I was post menopausal.....last year I was told I was starting to go through menopause....I'm 49. I think back and realize my hormonal problems were present when I was having an "episode" or whatever you want to call it...with fibro. I know fibro affects your endocrine system which includes your thyroid, hypothalamus, pituitary and reproductive glands. No wonder we're all messed up.

 

[Brianne]

I have had hormonal issues for years. All tests came back normal for a long time. I started going through perimenopause at 37. I was told TWICE I was post menopausal.....last year I was told I was starting to go through menopause....I'm 49. I think back and realize my hormonal problems were present when I was having an "episode" or whatever you want to call it...with fibro. I know fibro affects your endocrine system which includes your thyroid, hypothalamus, pituitary and reproductive glands. No wonder we're all messed up.

No kidding, eh?

Well, I'm looking at all of the requested lab work right now. Have I ever mentioned how much I hate having blood work done? It hurts so badly, even with a butterfly needle, and I end up with a major bruise for about a week. They really do try to be careful but it can't be helped.

So, they're testing for these---is there anything missing that I should ask my doctor to look into, or will this be a good start?

• FSH, LH
• B12/Folate
• TSH
• Prolactin
• CBC with Diff/Plat

The B12 has to be tested--I already know the issues with that (well below normal; it may have to go to shots instead of pills eventually). And I know the CBC is pretty standard.

But are the other ones going to be enough, or am I going to need to request something else? I have an appointment scheduled for a couple weeks, so I'll know more at that point, I guess.

I feel like such a dunce dealing with this stuff and I hate going into it all unprepared.

 

[TLSnell1981]

The blood work looks pretty standard to me. My results were all over the place from visit to visit. I also bruise easily and have small veins....they have to use a butterfly. I get B12 shots regularly....about every couple of weeks. They do seem to help. I concentrate on supporting my immune system and try to get a lot of rest (which is why I spend a lot of time on the Dis). I am also aware that any infection or illness I get it...is twice as hard on my system. I don't mess around....I go to the Dr. and take care of it .... immediately.

 

[tigercat]

I went for blood, urine and EKG today. I hate going for blood work as it seems that I don't have any veins. They finally were able to get one on my wrist that just gave them the sample they needed. It took 2 of them. They have to use the butterfly on me as there is no way an ordinary needle would work.
tigercat

 

[Brianne]

Do they ever look at you like you're crazy when you ask for the butterfly?

I always have to tell them they can only get blood out of the left arm (right arm is harder to do), they've got to use a butterfly needle, and they NEED to stay to the side. I have an involuntary reflex---when they put the needle in, my leg kicks out. It sounds ridiculous but I've caused bruising before!

TL, I know what you mean about the resting. I figure if I have to sit, I might as well have something to do. I work from home most of the time, but some days it's hard to even do that.

 

[TLSnell1981]

Hmmm...all of us have no veins. It usually takes two or three tries to get blood. I used to have one good vein but, the tech blew it during an IVP.

 

[mommasita]

Binny, I hope you did not delete it because of what I said . I actually took solace in it. It felt good.

On another note, I am having one of my worst days all around. Tired, sore, tired sore. I think the cold is getting to me. I spent too long Sunday night at the COLD football field, and then I pay the price.

to everyone.

 

[TLSnell1981]

Binny, I hope you did not delete it because of what I said . I actually took solace in it. It felt good.

On another note, I am having one of my worst days all around. Tired, sore, tired sore. I think the cold is getting to me. I spent too long Sunday night at the COLD football field, and then I pay the price.

to everyone.

I'm sorry you are having a bad day.

I also liked Binny's letters. I saved them. I read them to DH last night. I started crying after about the 3rd sentence. I didn't realize how much emotion I have built up over the fibro. I know I have to be strong. I refuse to give up. It felt good to have a nice boo hoo.

 

[binny]

I thought I deleted before anyone had read it, it was depressing me but i will repost them if they helped.




Letter to people that don't have FM and/or MPS:
Having FMS/MPS means many things change, and a lot of them are invisible. Unlike having cancer or being hurt in an accident, most people do not understand even a little about FMS/MPS and its effects, and of those that think they know, many are actually misinformed.
In the spirit of informing those who wish to understand ...
... These are the things that I would like you to understand about me before you judge me...
- Please understand that being sick doesn't mean I'm not still a human being. I have to spend most of my day in considerable pain and exhaustion, and if you visit I probably don't seem like much fun to be with, but I'm still me stuck inside this body. I still worry about school and work and my family and friends, and most of the time I'd still like to hear you talk about yours too.
- Please understand the difference between "happy" and "healthy". When you've got the flu you probably feel miserable with it, but I've been sick for years. I can't be miserable all the time, in fact I work hard at not being miserable. So if you're talking to me and I sound happy, it means I'm happy. That's all. It doesn't mean that I'm not in a lot of pain, or extremely tired, or that I'm getting better, or any of those things. Please, don't say, "Oh, you're sounding better!". I am not sounding better, I am sounding happy. If you want to comment on that, you're welcome.
- Please understand that being able to stand up for ten minutes, doesn't necessarily mean that I can stand up for twenty minutes, or an hour. And, just because I managed to stand up for thirty minutes yesterday doesn't mean that I can do the same today. With a lot of diseases you're either paralyzed, or you can move. With this one it gets more confusing.
- Please repeat the above paragraph substituting, "sitting", "walking", "thinking", "being sociable" and so on ... it applies to everything. That's what FMS/MPS does to you.
- Please understand that FMS/MPS is variable. It's quite possible (for me, it's common) that one day I am able to walk to the park and back, while the next day I'll have trouble getting to the kitchen. Please don't attack me when I'm ill by saying, "But you did it before!", if you want me to do something then ask if I can. In a similar vein, I may need to cancel an invitation at the last minute, if this happens please do not take it personally.
- Please understand that "getting out and doing things" does not make me feel better, and can often make me seriously worse. Telling me that I need a treadmill, or that I just need to loose (or gain) weight, get this exercise machine, join this gym, try these classes... may frustrate me to tears, and is not correct... if I was capable of doing these things, don't you know that I would? I am working with my doctor and physical therapist and am already doing the exercise and diet that I am suppose to do. Another statement that hurts is, "You just need to push yourself more, exercise harder..." Obviously FMS/MPS deals directly with muscles, and because our muscles don't repair themselves the way your muscles do, this does far more damage than good and could result in recovery time in days or weeks or months from a single activity. Also, FMS/MPS may cause secondary depression (wouldn't you get depressed if you were hurting and exhausted for years on end!?) but it is not created by depression.
- Please understand that if I say I have to sit down/lie down/take these pills now, that I do have to do it right now - it can't be put off or forgotten just because I'm out for the day (or whatever). FMS/MPS does not forgive.
- If you want to suggest a cure to me, don't. It's not because I don't appreciate the thought, and it's not because I don't want to get well. It's because I have had almost every single one of my friends suggest one at one point or another. At first I tried them all, but then I realized that I was using up so much energy trying things that I was making myself sicker, not better. If there was something that cured, or even helped, all people with FMS/MPS then we'd know about it. This is not a drug-company conspiracy, there is worldwide networking (both on and off the Internet) between people with FMS/MPS, if something worked we would KNOW.
- If after reading that, you still want to suggest a cure, then do it, but don't expect me to rush out and try it. I'll take what you said and discuss it with my doctor.
In many ways I depend on you - people who are not sick - I need you to visit me when I am too sick to go out... Sometimes I need you help me with the shopping, cooking or cleaning. I may need you to take me the the doctor, or to the physical therapist. I need you on a different level too ... you're my link to the outside world... if you don't come to visit me then I might not get to see you.
... and, as much as it's possible, I need you to understand me.





and then the letter from Fibro: (this is the really depressing one!)

A LETTER FROM FIBROMYALGIA

Dear Miserable Human Being,

Hi, my name is Fibromyalgia, and I'm an invisible chronic illness. I am now ‘velcroed’ to you for life. Others around you can't see me or hear me, but YOUR body feels me. I can attack you anywhere and anyway I please. I can cause severe pain, or if I am in a good mood, I can just cause you to ache all over.
Remember when you and Energy ran around together and had fun? I took Energy from you and gave you Exhaustion. Just try to have fun now! I also took Good Sleep from you and in its place gave you Fibro Fog (a.k.a.)Brain Fog.
I can make you tremble internally or make you feel cold or hot when everyone else feels normal. Oh yeah, I can make you feel anxious or depressed, too. If you have something planned, or are looking forward to a great day, I can take that away too. You didn't ask for me. I chose you for various reasons: that virus you had that you never quite recovered from, or that car accident, or childbirth, the death of a loved one, or maybe it was those years of abuse and trauma.

Well, anyway, I'm here to stay! I hear you're going to see a doctor who can get rid of me. I'm ‘ROFL’ (rolling on the floor laughing)! Just try! You will have to go to many, many doctors until you find one who can help you effectively. In fact, you'll see many doctors who tell you ‘it’s all in your head’ (or some version of that). If you do find a doctor willing to treat this ‘non-disease’, you will be put on pain pills, sleeping pills, and energy pills. You will be told you are suffering from anxiety or depression, given a TENS unit, told if you just sleep and exercise properly, I will go away. You'll be told to think positively, poked, prodded, and most of all, you will not be taken seriously when you cry to the doctor how debilitating life is for you every single day!

Your family, friends, and coworkers will all listen to you until they just get tired of hearing about how I make you feel, and that I'm a debilitating disease. Some of them will say things like "Oh, you're just having a bad day", or "Well, remember, you cant expect to do the things you used to do 20 years ago," not hearing that you said "20 DAYS ago"! Some will just start talking behind your back, while you slowly feel that you are losing your dignity, trying to make them understand, especially when you are in the middle of a conversation with a ‘normal’ person, and can't remember what you were going to say next!

In closing, you've probably figured out that the ONLY place you will get any real support and understanding in dealing with me is with Other People With Fibromyalgia! They are the only ones that will understand your complaints of unrelenting pain, insomnia, fibro fog, the inability to perform the everyday tasks that ‘normal people’ take for granted.
Remember, I'm stuck to you like Velcro – and I expect we'll be together for the rest of your life.

Have a nice day!! (ROFL),

Fibromyalgia
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as for me today has been one of the worst in a very long time. I used to love Fall. Now I am not so sure.