An Open Letter To Celia

Oh. my gosh, Celia your symptoms (aside from the breast infection (?)) are classic Fibro. I was going to say so, but went on to read about everything else you have going on and I felt it best to wait for that resolution. Awful as Fibro is, you are dealing with much larger issues right now.

A primer on Fibromyalgia (by CJ, my opinion, my experience only):

• You may or may not get the impression that it is "all in your head" from the first doctors you see. There are still some doctors who believe it is due to depression, unresolved life issues, and "soccer mom" syndrome. I recently saw another neurologist who was of that opinion. RUN, do not walk, away from them as fast as you can.
• Your GP should be able to refer you to a Rheumatologist who treats Fibro. The search for an appropriate doctor may take awhile. Be prepared and try not to become too discouraged. They can say things that can beat you down, but stand firm until you get a reasonable diagnosis and treatment plan. There are some wonderful doctors out there that truly care and want to help you manage your symptoms and reclaim at least some of your "old" life. Take copious notes! Or have a trusted family member or friend keep them for you. But, you stay on top of them.
  
• There are many approaches to treating the symptoms of Fibro. Some use natural or non-traditional treatments, herbs and the like. They may or may not work for you. Before trying any herbal remedy check with your doctor. One of the problems with herbs is that they can have very, very bad consequences when mixed with traditional medications. I am not dissing a natural, non-traditional approach at all. I am not promoting a traditional approach only. My experience has been that I AM IN UNBEARABLE PAIN. But, you need to know that I have at least two other serious incurable conditions that also cause chronic pain. I personally take four medications daily to manage my pain. Note I said "manage", I am still in pain each and everyday. The meds make my life livable (most days). I have tried both non-traditional and traditional treatment and I am using a combination of the two. How do you manage the unpredictability of the level of pain from one day to the next? Well, hopefully you have a "break thru" pain med that you do not take daily, only when you are experiencing a particularly rough day. This might be Tylenol 3, Darvocet, Vicodin, or Percocet. Take notes. Keep an up-to-date list of all of the meds--Rx or OTC--and the dosage you take with you at all times.
  
• Yes, the fibro drugs can make you a stumbling zombie. Try and give your body time to adjust and give any meds a fair chance (within reason, of course.) Warnings are included with all medications: READ THEM. Log your symptoms of possible side effects and report them to your doctor. The pain meds for nerves cause sleepiness. It may take a few weeks or more to adjust to them. These meds can be dosed for once a day, twice a day, or three times a day, with one, two, three, or four pills each time. As I say, it takes time. BUT, do NOT ignore side effects. They need to be reported ASAP! Take notes.
• You will probably need more than one doctor to manage this disease. Presently I have only two, my rheumatologist and my GP. But you may also see a pain management specialist, a physical therapist, a physiatrist (a doctor who specializes in physical medicine and treats the whole patient, not just the symptoms - I had a jewel of one, then insurance and finances stepped in!), or any of several other specialists.
• Now the hard one: "When will the pain stop?" The truth, probably never. However, you will find success stories of people who have come almost full circle and rarely experience the fibro pain. Unfortunately, these are hard to come by. The pain can, however, be managed. Some days quite well, some days not so much.
  

I hate, truly hate, that I have made this sound like doom, defeat, and despair. But, Celia, it is one of the most incredibly difficult, exhausting, and depressing struggles a person can face. Now, before people start throwing things at their monitors: of course there are more serious, complex, and pain inducing diseases. But, this is not a contest. There is no reason to say "You think you have it bad?" Believe me, Fibro patients heap the guilt upon themselves about this all of the time. We know there are people out there facing much more dire diagnoses with much less positive prognoses. Fibro is not fatal. We know all of that. But, Fibromyalgia is a serious condition. It is chronic and incurable. It is extremely painful and exhausting.

I am praying for you in all manner I can think of. I am here for you. I hardly know you, Celia, but you have touched my heart in a very special way. I care and I would like to help in any way I can.

Gentle hugs with fondness,

CJ


A Disclaimer to anyone else reading this: I am not a doctor. I am not prescribing nor am I diagnosing anything. I am a Fibromyalgia and Chronic Fatigue patient. PLEASE, see your doctor if you have any concerns or symptoms.

Living with Someone Who Has Fibromyalgia

Living with someone who has Fibromyalgia: a fate worse than Fibro?

1. Is it okay to still participate in activities and sports that you used to do together?
2. Can you accept invitations to get-togethers and activities that were for just the two of you, for ones that are for the whole family?
3. Can you still have your standing Saturday morning golf game, followed by lunch with the guys?
4. Is it okay to be upset that the house looks like hell and you haven't had a decent meal in, you can't remember when?
5. Is it alright to be mad when you work outside all day Saturday doing all the yard work and you come inside and find your chronically ill spouse laying on the couch watching TV--AGAIN?
6. Can you ever think or feel anything, ever again, without feeling guilty?

Well of course the answer to all of these is ---well, we all know what we want the answer to be. And, believe it or not your chronically ill spouse would agree with you---she wants to agree with you. She wants you to do to all the things you used to do, all the things you want to do. But, she wants to do them, too!

So there is a tug of envy and jealousy. There is some button pushing. There is some martyrdom. There is some lip quivering. But, honestly and truly she wants you to go, she understands why you're mad. All of that stuff is because she is mad at her disease. She is tired of always hurting and being tired. She is sad that she can't come with you. She is sad that you can never share many of those things ever again. She is sad that she can't even do the simplest things--like clean the house, fix dinner, pull weeds.

So, you both need to keep talking. But, even more important than that, you both need to LISTEN. Listen to each other when you are talking, really listen. Try and put yourself in the other person's shoes. This is no picnic for anybody. It is excruciating -- for everyone.

Life never will be the same. But it doesn't need to be a death sentence. It doesn't need to be the end of everything your life used to be. Through the pain and through the fatigue, and through the confusion and the questions a new life can be formed, and adjusted, and re-sized. There will be tweaking along the way, new information and new symptoms and new feelings means the conversation needs to be ongoing.

There needs to be talking. There needs to be listening. There needs to be an everlasting discussion.

Happy Fibromyalgia Awareness Day!

Fibromyalgia really isn't an invisible illness if you just take the time to listen, if you take the time to try and understand, and if you truly take the time to believe what the fibro patient is saying. Yes, we do seem "normal". We "don't look sick." Aha, but yes, we do. Look in our eyes and you'll see it...pain that never ends, fatigue that goes deep inside to our bones.

You will also see perseverance. You will see determination. You will see someone that doesn't have a low tolerance for pain. No, just the opposite, you will see someone who has incredible tolerance because we live with this pain and fatigue all day, every day.

We wake up with the pain. We wake up feeling like we never slept -- chances are we didn't get much restorative sleep. We are awakened 10--20--30 times a night. We go through our day with the pain and the fatigue, watching the clock to see how long it is before we can take more pain medication. We may sneak a nap because we can't keep our eyes open one more minute.

Fibro really isn't invisible. Not if you take the time to listen. Not if you take the time to care.

So, Happy Fibromyalgia Awareness Day!

To all of you that live with this scary and daunting disease, bless you. Bless you all ten times over! Fibro's not invisible and neither are we. Please, just take the time and have the patience to care.

Hugs,
me
CJ, in time