How to know

Hello all,
I am really struggling.
Both pain and fatigue.
I don’t know how to do this.
I want to do all the things I have learned and live well with this but I
can’t even get off the couch.
When I try to live, and try to be me it’s like I am carrying this concrete
block with me everywhere I go.

I went to see my sister for the weekend.
The first night was great, I was pretty darn proud that I was able to drive four hours and still we shared some wine and laughed TIL midnight.
Then I go back to our hotel and it was hideous. The next day I could barley function. I sat as everyone chattered away and all I wanted to do was be normal, to be my happy interested self but I couldn’t.
My body ached and my brain was so numb I couldn't follow a conversation.

Every day seems the same, I do my very best to be human I love life and everything in it but I struggling so much to make myself human just wears me out.

I have always loved to spoil the little ones on Halloween.
My hubby and I decorate the house all up and make special little
goodie bags just like when we were kids. We remember what made it
fun for us and we give it right back.

It has darn near killed me!
I am so tired right now it frightens me. How can a body be this tired and not die?
Do people die from this? Can you actually get too tired and hurt too much that the body just goes to sleep and don’t wake up?

That’s assuming I could fall asleep, because I really don’t.
The pain just wakes me right back up.
The only sleep I get is from sheer exhaustion.
How the heck can a person live this way?
Do I have to give up my old life?
Is that what is not working? Me trying to be me?
Can anyone be who they once were with fibro?
Is that what’s wearing me out?

You know I catch myself often feeling like I just want to give up who I was and stop trying. It hurts terribly and the fatigue is unmanageable. But I am not in a coma and life goes on.
I asked my rheumy who says to take it easy, don’t do so much,...
“Well how do I do that? What about my work and obligations, never mind my interests and the fun things that make me me?”
She had no answer.

I guess my question is, is it inevitable that fibro changes who you are?
Should I stop the uphill battle to be my normal old self, cut myself a break and become who I must be now?
As sad as that sounds would I be better off?

My sister would have to understand I can’t come for a visit.
My little spooks would go without.
My work would go undone and going after life and all the fun stuff
would have to stop. I don’t much like the sounds of that.
Life as I know it would be over in favour of a new one that makes
much less pain and fatigue. I like the sounds of that very much.
That is quite the thought.
Tuffymason

Actually I am not depressed at all.
I am frustrated and angry.
Why in heavens name is this terrible illness treated like no big deal?
I have delt with chronic illness for a long long time and I have done very very well.
I am asked to help with a support group for chronic illness at my clinic.
But these symptoms are not something you can just carry on with.
Why do the people who suffer from it accept that?
For a physician to poo-poo the pain and all the other miserable symptoms, and then tell you to just curtail your life to it is ridiculous.
It’s like they don’t want to be bothered so we are put on a shelf.
Why is there not more respect and more research?
More assistance to manage?

I am not retired.
Why is it assumed that someone who works, is raising a family, going to school etc has to somehow “just take it slow” it’s ridiculous.
How do you tell a 2 year old “I’m taking it slow”? Or your professor or your boss?

I like your options, and in fact they are the first ones I have been given.
Why aren’t physicians doing that?
I was told years ago I had fibro but that it was just about pressure point pain...no big deal
Never was I told of the real fibro.
Is it because they don’t know?

Sorry you got the idea I am depressed, trust me I am not, I just expect far more from my well paid physicians than they seem to be interested in giving.
This is my life and many others out there too!

I started physio today and was told to wait on the swimming for now.
I am being given help with muscle strengthening exercises and core strength exercises.
The high dose Pred deconditioned my muscles so last year.
Why was I not told about it, and then at least not to try go on with my life without some physio?
Why is fibro such a darn big nasty secret?
Thanks tuffymason

Sherrine, that was an awesome and very inspiring post! One key thing that stood out in my mind was when you said "I try different ways of doing things that help me with fibro." To me, that's where the "START" button, so to speak, is.

When I was first diagnosed, around 2003, I have very severe leg and foot cramping and could barely stand, much less walk. I honestly thought I'd end up in a wheelchair---and soon. But I started on a muscle relaxer (Flexeril) and Neurontin for the nerve pain/issues, found this forum, got some ideas, and little by little, I began to do more. I still have lots of issues, especially now that I'm getting older, but it feels good to do those little accomplishments I might have once ignored. I probably would have preferred and taken a nap. I think sometimes it's those little things that can give us a lift.

This forum is a 'treasure trove' of helpful hints, ideas, and info. They won't all help every single person here, but many of them will help at least some of us. I think it's important to never stop searching for that next little idea that leads to feeling better.

It IS easy to be angry with any chronic illness; yes--it's so frustrating at times. Diversion and lots of prayer and spiritual reading have helped me. Working on crafts, reading, and playing with our pets helps me forget my pain and stiffness for a while. Having a daily 'to do' plan helps me, too. It's an individual thing, but I think it's important to find just the right 'niche.'

Wishing you both the best!

Tuffy, I totally understand. I'll get things that the doctors don't know what is causing it or things they do know what is causing it but can't help me. 😂 I know it shouldn't be funny but I'm old enough now to just laugh at it. I refuse to let this kind of thing upset me. That only makes me feel worse.

If your doctors aren't listening to you, start looking for doctors who will. I tell our members to remember that 50% of the doctors graduated in the lower half of their class and yours could be one of them. I always make sure I have board certified doctors and most of mine are diplomates also. They have to take tests on the new things in medicine in order to keep the title of diplomate according to my Internist I had up north. I have found these doctors know more than the average doctor and I need all the help I can get! 😉

It's too easy to blame Fibromyalgia for everything but some doctors do. We even do that ourselves and have to be careful. When new symptoms crop up and are worrisome, you do need to pass it by your doctor to make sure it isn't something else. A few years ago my back was getting worse and worse and then my legs joined the party and I could barely lift my foot an inch to take baby steps. I was walking with two canes but yet I was blaming fibro. I shouldn't have since fibro is not considered a progressive illness! So I went to see my rheumatologist, he ran a ton of blood work, took many x-rays, and sent me for two MRI's. It turned out I had developed ankylosing spondylitis and sacroiliitis along with fibro. I was put on medication to help me and I'm doing soooo much better. I thought for a while I was going to have to sell my house and move into assisted living but, thank God, I have good doctors. I now feel better than I have in several decades!

You shouldn't have to get angry to get help from your doctor. You are paying them to care for you! I won't get angry. It only makes me feel worse. But I sure know how to dump the doctor! I've done it before and am pretty good at it. 😁

Well, I need to run. I have another doctor's appointment. This has become my social life! 😂😂😂. Have a good day!

Sherrine

Well, I am so thankful you good people are still talking to me.
I have been very loud trying to make my point.
My point has been taken and I thank you.

I have a nurse practioner not a family doctor.
She has told me she does not know fibro nor lupus.
Today I saw her about the horror going on in my head, so much pain.
My eyes feel like they will explode and there is a pressure that leaves no room for thoughts. Balance issues, memory is laughable, can’t remember words, and my movements are weird, kind of stiff....just on and on...I have a terrible time articulating it all to her even.

She believes this is anxiety.
She says I worry about what is going on and that I am trying to find answers where there are none...????
So no tests, no blood work no nothing, she just want ants me to start
taking antidepressants.
I don’t get it. How do you treat something that has not been investigated?

I went a year back in 1989, I was 28 years old, telling doctors that something was wrong. All I wanted to do was sleep, and I lost so much weight, I was so weak I could not function. PLUS my normally pink
complection was bronze....everywhere.
You have no idea how many doctors I saw that told me I was depressed that it was all in my head. Including my skin color ???
Finally Christmas Eve I went to see my gynaecologist, he was my last resort, I was that sick. My hubby all but carried me in.
He took one look at me and called an endocrinologist across town.
He was just closing his practice for the holidays but agreed if I went right over he would see me.
He was a nice man, very dark, from Nigeria I think.
He did some routine little tests right there in his office, leaves the room
and comes back and puts his Palm next to mine.
He says it’s the same. He was right the lines on my palms were as dark as his. Then he said you have a problem called Addison’s Disease.
He had made a call to the hospital and I went straight there ended up passing out from the fatigue, I just had nothing left, where I was put on a stretcher and an IV was put in. I spent Christmas there.

A year it took, I went from hiker, canoeist, outdoorsy newlywed to flat on my back in a hospital bed.
So why was I told for a year it was all in my head by several different doctors. I was bronze for heavens sake. I don’t believe depression causes skin colour changes???

So now I am right back there again.
If I had a dollar for every physician over the past 35 years that just took the “depression” way out of a difficult appointment....
I know something is wrong.
Something very different.
I am not foolish, I know this fibro thing is new for me and there’s
allot I need to learn. But depressed? I just don’t think so.
But at this point I am just to tired to keep fighting for consideration and
possible other reasons.

So for the fist time in my life with this crazy health history I have I am conceding out of sheer exhaustion to take mind altering medications that I am not convinced I even need.
How stupid, ridiculous and abusive it that?

I guess I think what can it hurt, maybe it will help the fibro symptoms
anyway.
I give up, I don’t know what else to do. You can imagine how proud I am with myself tonight.

Thanks for allowing the tough conversations on your forum.
Tuffymason

Tuffy, out of curiosity, are you under the care of an endocrin. for the Addison's disease? The reason I am asking is because some of your symptoms are the same such as fatigue, muscle & joint pain to name a few.

Just wanted to bring this to your attention.

I have been a chronic pain patient for a very long time. Some drs will rx an antidepressant because there is a depression component to chronic pain. And many have found the antidepressant helped their pain. I am not saying oh you need an antidepressant, just wanted to put that out to you.

I have what is called seasonal allergies that I deal with 6 months out of the year. These lead to sinus infections & often upper respiratory infections if I am not careful. I have to keep a close eye out because of the infection. Much of what you are describing sounds like what I go through when it hits. The pain is just incredible & the pressure. I use plain Mucinex for the pressure & throbbing in my head, ears & such. The regular one is dr approved because much of the sinus stuff OTC drives my BP up. I use Flonase during my allergy season. Also, a neti pot helps me so much. This is things you can do on your own that will do one of two things, help you or not help you.

I suggest that you go to the MayoClinic.com & print out the info on Addison's disease for this NP to read. Addision's does not just go away once you have it, you need to be referred to an endocrinologist. I am gathering you have limited access to medical care. Knowing you have a prior dx of it, you may not have Fibro.. I would go to the next town for care. I live in a very large city with thousands of drs. My gi dr is 62 miles round trip. Worth every mile I drive to see him.

Take care.

Sorry I didn’t mean in general, just to shut “me” up.
I tried over and over to explain the pain and cognitive problem in my head. Pain was sharp, heavy and deep inside. Like a deep, heavy, dull
headache. Pressure inside and like bruises on my scalp.
It hurts my eyes especially in light and deep in my ears too.

The cognitive stuff was short term memory and just a lack of intellect
period. Kind of like a floating feeling. Forget scheduling, multi tasking,
or thinking period. My mind was exhausted. Like I was lost.
I felt this was due to constant hideous pain and lack of sleep.

She would not hear and decided it was emotional not physical, but anxiety and worry.
I guess because I was trying so hard to learn and to get relief and find to myself again.
To me the fact that I knew this was not an emotional feeling but a
physical went unheard.

Needless to say I refused the antidepressants.
Not that I don’t believe in them, just not for me, not now.
I went back to my own tool box.
First I have learned that my rheumy was right, for a while I needed total rest. Sometimes determination isn’t the answer.
That is what I have learned about this new DJ of fibro.
I also went back on my low dose nortriptyline for now. It has helped me sleep really well. My head feels almost normal.
I have also done some things I just enjoy, walking, an old movie, a nice drive to some shops today with my hubby.
And Tylenol.

I cannot believe the difference.
From where I was to now is almost night and day.
I am though a bit nervous of it happening again.
Wondering if I can ever get back to where I was physically.
But I think for now lower expectations and lots more letting go.
Thanks everyone,
Tuffymason