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hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 10/30/2017 10:32 PM (GMT -7)   
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

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 10/31/2017 7:29 AM (GMT -7)   
Tuffy, I'm so sorry you are feeling so defeated by fibro. You CANNOT let fibro win this war for your body and life! Yes, you can live a normal life...with a few changes. Remember...what you think becomes your reality! If you get up and think how miserable you will be that day, it will come to pass. I'm a strong believer in the power of our minds and the power of positive thinking. (There is a good link in Fibro 101 about how to maintain a positive attitude when you have chronic pain. Do read it.). This, along with some medication and supplements and exercise, can get you moving along a much happier path in life.

For example, when I get up, I have pain and stiffness but I don't think to myself..."Well, here's another lousy day. I'll be in pain and spend every moment I can on the sofa. Man, I hate my life!" If I did do this, it would become my reality. Instead, even though I wake up in pain, I accept it as part of Fibro. I am happy that I have another day to live and I map out reachable goals I can do for the day. I look forward to this new day with anticipation and hope it's a really good day. This becomes my reality and I'm far happier this way.

It is a MUST to pace yourself. If you are the type of person who wants to be busy and active all day long. It won't work with fibro. You can do things and then take a break for about 20 minutes and start back in doing what you were doing. You can not work until you drop because that will put you out of commission for days!

My family each has a holiday at their house. My holiday is Thanksgiving and I usually have 14 people for dinner. I am a widow and live by myself in a large home. I have to do all the cleaning and preparation for this holiday. I have to plan waaayyy ahead for this and I started last week. I did all my fall yard clean up so my yard will be beautiful. I made the dressing and it's in the freezer. Today I'm making three ice cream pies for the freezer for the Christmas season. The remainder of this week I'll focus on my carpeting. I do my own steam cleaning and I do one room a day. Next week will be my tile floors, getting tablecloths and napkins together, and doing any finishing touches to my house.

I have also started planning out my menu and do as much ahead of time as possible...like peeling potatoes for mashed potatoes the day before and refrigerating them and making vegetable casseroles and refrigerating them up to two days before Thanksgiving. I take my frozen dressing out to thaw also. I even clean the turkey and put it in a clean garbage bag in the refrigerator the night before Thanksgiving. I put it on a small cookie sheet in case the bag leaks. I don't want to have to clean the fridge! On Thanksgiving day I only have to stuff the turkey and roast it, put the peeled potatoes on the stove to cook, put my vegetable casseroles in the oven or microwave to cook, and make gravy. All of that is easy and still gives me enough energy to enjoy my guests. I'm exhausted at the end of Thanksgiving, didn't get to visit like I would have loved to do, but Christmas is coming up and I can do all the visiting and none of the work! 😊

I know...you are saying that there is no way you could do this, but you can! I couldn't have done this when fibro first hit me but I found things to help myself feel better and learned the art of pacing myself. Now I live a pretty normal life in spite of this illness.

For help with my pain I use ibuprofen with food, vitamin D3, magnesium malate, krill oil, CoQ10, and a prescription muscle relaxer called Robaxin. The muscle relaxer really has helped me be able to sleep without pain waking me up. Since I'm getting better rest, my pain and fatigue is less also. I take folic acid to help with the cognitive memory problems and I don't fret over that either. I laugh it off. If I get upset about it, it only gets worse.

Lastly, I take a good multiple vitamin daily. My doctor checks my levels on iron (I'm anemic because of Crohn's disease) and he checks my levels in vitamin D and vitamin B12. A deficiency in B12 can cause the pins and needles feeling, fatigue, and memory issues! So do get that checked out.

Some of what I do might be very beneficial for you. But, what works for one doesn't necessarily work for another with Fibro. It's a trial and error type thing. I started out trying over the counter things and they worked for me. As you can see, I only take one prescription med...the muscle relaxer.

You are quite depressed right now and that definitely can cause the extreme fatigue. Please see your doctor about this and get some medication to help you. I became very depressed when my husband died suddenly and I could barely put one foot in front of the other. I had had fibro for 10 years at that point. We were in the process of a move when he died so I had just moved to a new area and didn't even know how to get around town plus my Mom was in intensive care with a stroke and I HAD to help her. So I had to keep pushing myself. Because I am basically a positive thinker, I was able to work out of the depression but it took many months. But, I was very fatigued and would go to bed at night asking God to take me because I didn't want to be here anymore! Boy am I glad He didn't listen! Since those bad days, I've done a lot of traveling, have had so many wonderful times with my children and my friends, and just have flat out enjoyed my life. So, yes, you can feel better and have a good life in spite of what you think right now.

You asked if you could die from fibro and the answer is no. It s not a terminal illness. That is a good thing! You will be glad about this, especially when you find what helps you with the lousy symptoms of Fibro. But you do have to stop the negative thinking. Stop thinking about how you feel and focus on good things in your life and things you are trying to accomplish. Learn new things, meet new people, go out with friends even if you don't feel like it. All of this does help with maintaining a good frame of mind. As I said at the start of this novel, how you think becomes your reality!

I hope this will help you start living the life you want and deserve. And, yes, continue to visit your sister and encourage her to come and visit you also but pace yourself. Don't stay up so long after a long drive. You can visit the following day and, while on the trip, stop a couple of times to get out and stretch. All of this is included in pacing yourself and working around fibro to do the things you want to do. Yes, it is very possible! I am living proof.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Post Edited (Sherrine) : 10/31/2017 9:06:53 AM (GMT-6)


hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 10/31/2017 1:55 PM (GMT -7)   
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
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 11/1/2017 2:57 PM (GMT -7)   
Unfortunately I think the anger and frustration is making your symptoms worse. Your muscles tighten which causes more pain and that also causes more fatigue. I know the anger hasn't helped you at all either. For you, fibro is like the straw that broke the camel's back.

Fibro isn't treated like it's no big deal. The problem is they can't come up with a cause. There are a lot of doctors and researchers studying this illness and trying to figure it out. After all, the only symptoms that most fibro patients have is the chronic pain, fatigue, and brain fog. Then there are numerous other symptoms we can have and no two people with fibro are alike in symptoms and what works to help with one doesn't necessarily help with another with this crazy illness! Can you see the problem doctors are having?

I have two fabulous doctors...an Internist and a rheumatologist...that are affiliated with a medical school here in the Tampa Bay Area. These doctors are exceptional and they can't do more than most doctors. Doctors have started using Lyrica, Savella, and Cymbalta fairly recently. They do help some and for others these don't work! Most illnesses have specific medication to take to help with symptoms or in some cases cure illnesses. But that isn't happening with fibro and it won't until they can figure out what is causing this illness in the first place. Once they do that, trust me, the pharmaceutical companies will be jumping all over this illness. They will be able to create medications to really help with our symptoms. But it is a waiting game right now.

Doctors aren't gods, even though some think they are. 😂 Their hands are tied right now and they can offer the above medications and that's about it. I chose not to try these because I didn't want to mess with my brain chemicals. Cymbalta is an antidepressant and Lyrica and I believe Savella were used for seizures. Studies have shown these can help but, as I said before, they don't help everyone. So I decided to try over the counter things and good supplements that our bodies need in the first place. I'm not into herbs because they can spell trouble...especially with certain medications. But the supplements I take are very useful for my body and they are helping to lessen my pain, fatigue, and cognitive memory problems. The only prescription medication I take is Robaxin (methocarbamol).

Why do we accept our illness? We have no choice. Support forums like this one are very beneficial because you can talk to people who are in your shoes. We all try various things to help ourselves and then pass this on to members on the forum. This way you have many things to try to see if it helps you. No matter what illnesses one has, we should be active participants in our healthcare. No one wants to help us more then ourselves.

Also, accepting our illnesses helps us move forward with our lives. Right now it seems you are stuck in this anger mode. It isn't helping you at all. You have to accept fibro and try some things to help yourself so you can move forward and enjoy life again.

Every time I turn around, another illness pops into my life. I have so many that if I list them to someone else, I will sing "And a partridge in a pear tree." 😂 Sure I could waste prescious energy being angry and really ticked off but that's never helped me. Instead, I face my illnesses head on and figure out how to work around them to lead the life I want to lead. I've done this with fibro and have ended up with a full and enjoyable life in spite of this illness. I try everything and never say I can't do something.

One time on a trip, people were parasailing. Oh...I wanted to do that so badly but was very hesitant. I have an ostomy from losing my colon to Crohn's disease and I was concerned about the straps and my stoma plus, with fibro, I didn't know about landing back on the deck of the boat. A hard landing could put me out of commission for quite some time. I watched and watched and decided I might never have this opportunity again so I signed up. I LOVED it and I now know what it feels like being a bird! And my landing was smooth as silk. I could have told myself I can't do it but I didn't. This is how I run my life with fibro.

I try different ways of doing things that help me with fibro. One time my back was so bad and I couldn't lift my laundry basket. I had an idea! I have a cane so I slipped the cane handle in the handle of the laundry basket and dragged it easily to the laundry room. Just stuff like that helps me work around my pain and I manage to get things done.

I was very sick with Crohn's when my kids were toddlers. You have a lot of pain with Crohn's too plus I was anemic from blood loss with Crohn's. I set up a child's table and chairs and put crayons and coloring books, Play Dough, books, puzzles, etc. there. It was their special table. When I was fading and needed to rest, I'd have the kids sit at the table and choose whatever they were interested in doing. I would also read to the kids. This didn't take much effort at all. They were occupied and I was resting all at the same time.

When my kids were all in school, I took a job at a photography studio. I would take the kids to school, work all day until it was time to pick them up, and then go home and fix dinner for the family. Yes it was difficult. My sweet husband cleaned up the dinner dishes while I was helping the kids get ready for bed. I was exhausted by the time I headed to bed but was also happy with what I had accomplished while having chronic illnesses.

Some members have had to leave their jobs. It depends on what your job entails. I used to teach but had a severe hearing loss and I couldn't hear children's voices well at all. I left teaching to be with my kids until they headed to school. Then, I was fortunate to find the photography job because I could sit a lot and move around as needed. The boss stayed in his office since things were going smoothly and I could come and go as needed at home. It was a perfect job for someone with fibro and also with small children.

I sometimes wish our doctors got to live in our skin for one week. Then they could understand what we go through. But I honestly feel they are doing the very best they can with the limited knowledge about Fibromyalgia.

Water exercise is wonderful for fibro. It's low impact but yet you are moving. Walking and yoga are two other good gentle exercises good for fibro.

Prednisone doesn't usually help fibro because fibro isn't an inflammatory illness according to the National institutes of Health, the American College of Rheumatology and others. If it did help you, you could have fibro and other things going on. The ibuprofen helps me because I have several inflammatory illnesses but fibro isn't one of them. Many of us have fibro and also other illnesses. If you were on that for a while, do start taking calcium. Prednisone can be a cause of osteoporosis. You want your bones strong. I take Citracal twice a day. It is calcium citrate and is more easily absorbed that Caltrate (calcium carbonate).

Well, it looks like I've written another novel. Whew! I hope some of this helps you and I hope you can get rid of the undercurrent of anger running in your life. You will be happier and more peaceful if you do. You will be totally in charge of Fibro then and can face it head on and live a good life.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Luvzminis
Veteran Member


Date Joined Apr 2008
Total Posts : 2656
   Posted 11/1/2017 5:39 PM (GMT -7)   
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! smile
"Pray, hope, and don't worry."

St. Padre Pio

Post Edited (Luvzminis) : 11/1/2017 6:42:17 PM (GMT-6)


hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 11/1/2017 8:52 PM (GMT -7)   
Thanks for the reply’s.
So sorry for your suffering.
Seems that these illnesses cluster like grapes.
Me too.
I have been getting one diagnosis after another for 30 years.
I have done really well though and have my own tool box and hat full of tricks that keeps me going.
Really I do not dwell until it becomes impossible to live, like it did
these last few months.

I get that these conditions are complicated and there are many questions and not near as many answers.
But I do not tolerate poor healthcare over and over.
How could a person go through an entire summer, visiting the doctor, specialists several times with new problems and still go unheard?
Trust me I would not be there if it was any kind of bareable.
Ridiculous!

Yes I have a colourful health history too and it seems as though what ever new problem I am having gets attributed to that alone.
Nothing else ever gets considered even though I am experiencing
new and horrific symptoms and repeating that over and over.

But here when I end up at the ER because I have tried everything
and have gotten nowhere, well that’s when my physicians hear about it.
Then all of a sudden something gets done.
This is what I am angry about.
This is terrible hurt, you know, and for months...
Who has the right to dismiss a patient when they are knowledgeable
about their health, are coming in time after time and struggling.
Why did it take a note from the ER doctor to get considered!

So suddenly a phone call for an office visit, listening ears are on and so finally things are much better, very manageable and on I go with my life.
True, while not new a partridge in my pear tree, it is a much bigger one.
At least I now after all this struggle know what I am dealing with.
Would have been nice to know way back then..
Sometimes getting good and fed up even angry gets things done.

Look forward to continue learning and appreciate your help.
Tuffymason

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 11/2/2017 10:09 AM (GMT -7)   
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


Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

Samij226
New Member


Date Joined Oct 2017
Total Posts : 3
   Posted 11/2/2017 11:37 AM (GMT -7)   
Your post really resonated with me. I often tell my husband "I wish I was a real human". I often feel angry and like I'm forced to alter my life. And I do think I am a different person now, though some of the changes are positive, in a way. I often think that God finally found a way to humble my stubborn prideful self and accept help from others. I don't want to let this "demon" (I have many different names for it) control my life, but I now understand I do have to adjust. When I have a good day, I get this feeling inside, like a lightness, happiness. And I try to remember that on the bad days when I can hardly move.

I am thankful to have a primary care provider that doesn't take what I am going through lightly and has been moving heaven and earth to not only try and mind the problem but help treat the symptoms. I changed my major today because I don't think I can have a 9-5 job, especially with 4 children. So I am going to pursue my passion instead of some type of career that I chose for the $$. School is a great distraction.

My family lives 612 miles away and I'm angry that I can't do the 10 hr drive to see them all like we do every year, but I know it's for the best that I don't push when I know the consequences are too severe. I would love to be able to just get my house under control without suffering the consequence, but I have to accept I can't. I am fortunate that my husband sticks by me and listens to me rage, cry, and just be near.

I wish I had some grand wisdom for you, but I'm still finding my way, In fact, just last week I had a large meltdown and posted on here also. I hope you get some good days. I hope you can feel that lightness, even though sometimes it doesn't last long. I am glad to have found this forum, to know I am not alone. I feel what makes this so hard is that the "normal people" can't truly relate to the level of suffering we go through, though they try, and it leaves this wedge. And if one more person tells me "A body in motion, stays in motion" I will motion my fist into their mouth and suffer the loss of what little energy I have. I am looking for inspiration and now that I am looking I see it out there, so I just hope and it's one day at a time.

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 11/2/2017 4:33 PM (GMT -7)   
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

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 11/2/2017 6:40 PM (GMT -7)   
Doctors are using antidepressants...Cymbalta primarily...to treat fibro...not depression. Cymbalta has shown it can also help with fibro. Many with fibro do have the depression and anxiety too. Lyrica was used for seizures and they found that it also can be used to help fibro patients! So if they are suggesting antidepressants, that doesn't necessarily mean they think you are depressed.

I wish I could give better advice. I suffered from anxiety big time but then realized it was really fear after a teaching in church one Sunday. The scripture that was used is in my signature. I put it there because it has helped me a lot throughout the years with my illnesses. I had heart palpitations, pain that ran up the back of my heat, shortness of breath and I thought I was going to pass out. I actually thought I was having a stroke because of the head pain. All that was caused by anxiety.

No, fibro is not all in your head. It's very real but we can help you learn how to live with this illness.

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15177
   Posted 11/2/2017 6:53 PM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 11/3/2017 5:53 AM (GMT -7)   
Hey Straydog, no I have no endo.
I was referred to one two years ago and nothing ever got done.
Our healthcare system may be free but there are no physicians just wait
times that don’t end.
All I have at the moment is a rheumatologist but I can’t just see her when I am in trouble. I can only see her every 4 months or so.
My nurse practioner clearly has no idea. I know more than she does and I feel pretty much like a guinea pig.

Why not a neurologist, or MRI or something?

There was a new family doctor that joined my clinic who was taking patients but when I wrote to her asking to become a patient my nurse was given the letter and she called me and freaked out on me. She said it was not possible because of proticoll.

Again I am getting to tired to fight. And I know that’s not good.
I feel like the antidepressants are just a labottomy to shut me up.
I have no information that antidepressants are used for this kind of pain
and confusion. She could not give me a shred of evidence. Nor could she tell me exactly what is happening to cause such head pain.
She said when I see her in a month she would have something then.
How stupid is that.
She also told me not to talk to you folks, like you are a bunch of
uninformed hypochondriacs.

My symptoms are heavy pain in my head, in my face, jaw, and eyes. My scalp is so tender it’s painful to lay down and I have a never ending headach that makes my ears hurt deep inside. My sinus’s also hurt and burn.
My cervical spine way up at the top of my neck hurts so bad I can hardly move my neck, and it hurts my skull behind my ears.
I think this is allot to expect antidepressants to fix let alone passify.
Shoot the other day my head hurt so bad I could hardly see and I forgot how to answer the darn phone! Could not figure out what button to press to answer it! Lots of weird things like that.

I will do some reading today and see if I can find anything that supports antidepressants doing anything more than passifying the problem.
I just don’t like mind altering drugs especially to be used as a band-aid.
It is a concern that giving antidepressants to someone who isn’t depressed, but experiencing CNS issues, just making issues even worse.
I will also put a call into my rheumy’s office.
If I speak with her, she will listen, and if after me telling her what’s going on she thinks the antidepressants can help the symptoms then and only then will I try it.
Thanks everyone. Have a good day. Tuffymason

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 15177
   Posted 11/3/2017 7:15 AM (GMT -7)   
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.
Susie
Moderator in Chronic Pain & Psoriasis Forums

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 11/3/2017 9:35 AM (GMT -7)   
Cymbalta is use daily to help fibromyalgia. They don't give it to you to shut you up. Fibromyalgia patients have gotten help with this medication.


/www.webmd.com/fibromyalgia/guide/cymbalta-for-fibromyalgia-treatment#1

Sherrine
Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7

hanginin
Regular Member


Date Joined Jun 2008
Total Posts : 38
   Posted 11/5/2017 7:55 PM (GMT -7)   
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

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17501
   Posted 11/6/2017 9:37 AM (GMT -7)   
I'm so glad to see you are feeling a little better! Remember...one day at a time.

Sherrine

Forum Moderator/Fibromyalgia

Fibromyalgia, Crohn's Disease, Ostomy, Autoimmune Inner Ear Disease, Diabetes, Osteoporosis, Glaucoma, Scoliosis, Ankylosing Spondylitis
************************
God does not give us a spirit of fear, but of power and of love and of a sound mind. 2 Timothy 1:7
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