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So many people with Fibromyalgia
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crystalgreeneyes posted:
I have read about so many people here, both young and old, who are dealing with all of the many issues of fibromyalgia.
I personally do not know one single person who has this. No one in my family, neighbourhood, friends, co-workers etc. Yet it is common enough. I feel very much alone especially because I have no support. The only support I get is from this forum. Thank you everyone.
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booch007 responded:
You don't need them, you have us! We always understand this crazy disease we have all shared over time.

It is great if you can get your husband to the doctor with you and get him* to understand, as he will be your champion (behind your back) when you are having a bad day to defend you to others.

Validity goes a long way, since this is invisable.

That was a turning point for me. When my DH (dear husband) came and saw my first trigger point injection session......he was overwhelmed at the areas treated and the shots I accepted...

I have been doing that therapy now every two weeks for 10 years! It liberates me from the tight bands of neck muscles I have and I have range of motion and less pain in 2 days after, but it lasts only 2 weeks as I live a full life (kinda). I work and do as much as can.

A fighter forever. Never taking off the boxing gloves to not give this dragon one more inch of me. Attlitude is ALTITUDE.

I want to be as high and go as far as I can in a day. But I get flares and he puts me on my butt* . But I get back up up again in 2 days. I rest for 2 days and the out and up..........

I wish you all the best in finding your tools to work with this, never looking to be painfree as it is not attainable.....but the lowered levels are workable for a ife. Distraction is my last med I take in the morning. It finishes smoothing the edge to function.

Good luck, Nancy B
 
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Mommahonk responded:
My heavens! I know how that feels, the isolation...

I never told any of my family or my in-law family for a long time. My husband was not understanding my sickness, my kids did not... I was always super women! Now I am not!!!

Also though, I beat myself up for "being sick" I have never had to slow down.... and for me to accept this fibro, was very hard on me... I was too proud!

Please don't be afraid to tell people, like I was... I have learned it's better to say " I am sorry but I can't go today, I am having a bad day today....

Be honest with yourself and your loved ones Crystal....

We are here for you in this forum... but more than that, God is here for you... I finally learned to accept all of this sickness through God...

Peace, Love and Harmony to you,
Mommahonk
 
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crystalgreeneyes replied to Mommahonk's response:
Thank you for your kindness. It does help to have everyone here. My husband doesn't want to hear about my issues. Every day I cry - I try and try so hard to be positive, to accept and to go on but I don't know how to go on. I feel as though this is my life sentence. He came with me to one appt. after I begged. While there he sat not saying a word until finally, told the Dr. that I had been suffering from depression. The dr. focused on this depression and that was it, immediately talked about anti-depressants but no other treatment options. I know they are supposed to help with pain and anxiety as well as depression but I can't seem to tolerate any drugs. When I tried Cymbalta a few weeks ago, I was lying in bed for 3 days and I could barely move I felt so ill. No came to look in on me during that time. I don't tell anyone, they don't want to know. The only thing I take is a sleeping pill and some anti-anxiety medication and I feel better when I sleep but I want to take them during the day just so I can "check out", not feel, not think. I feel so afraid all the time. My fears overwhelm me. I went back to school a year ago because I wanted to start a new career. I was the best student in my class and I was looking forward to this new adventure (in my 50's). Now I have this and I cannot work and I have very little money.
I cry because of the pain and exhaustion and my husband will say "what is wrong with you now"? When I say I am feeling bad or I am in pain, neither my daughter or my husband will ask if I need anything or can they do anything so I have stopped saying anything. What is the point? I don't think there is any point to my life.
 
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Survivor2007 replied to crystalgreeneyes's response:
I'm here.....I want you to remember that depression is very closely tied to fibro. I am also going through the personal battle of how to let others know, and how to convince myself, that I am not just being lazy. My family has been on quite a ride with me over the past few years.....breast cancer 5 years ago, back injury.......and just not seeming to be able to get back to my old self again. I also went back to school in my 50's.....got my degree.....diagnosed with cancer 1 month after graduation. I have just lost my second job from fibro fog.....and I am not even diagnosed yet, having just realized that maybe it is not just me being crazy....me being lazy......etc. You see, so many of the same feelings that I am sure you are having.....about my self worth, and whether I have the ability to deal with this for the rest of my life. I know I can do it.....but I have some hoops to jump through first to get my diagnosis, disability,etc. And I am struggling with finances, family.....argh!!!! Please post back soon.....I do understand. If you feel that you are unable to shake the really gripping part of feeling depressed, call a crisis line. It will help to talk to someone who is willing to listen and validate how you are feeling.....
 
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dollbug replied to crystalgreeneyes's response:
Hello....MiMi in NC...I wanted to comment to something that you stated....crying is not a good thing...and you probably need an anti depressant to help you through this period of time....I am saying this since I have been there done that...a few years ago I could cry for no reason...no joke...it was almost unreal to me...I had no idea what was going on with me...I think now that it was a mixture of *issues* that I was experiencing...the doctors do not even *understand* what we, FMers, go through...so IF they do not understand then it is hard for them to actually know what to do with us..

Your family and friends can not possibly know either how we feel....they do not have a clue....I do not think it is that they do not care....they have no idea what we go through...some might be willing to listen but they still do not know what we face each and every day....I have 3 grown children...a daughter and 2 sons...my daughter has had chronic pain before so she does understand, to a point...the boys have no clue...my DH does not understand either...heck...there are days when I don't even understand what goes on with me...so how in the world can I expect someone else to know?

You need to try whatever your doctor wants you to do...you have to experiment with this since it requires a *trial and error process* of whatever the doctor *thinks* might help...and this also takes time...you have to allow at least 6-8 weeks of trying whatever before you should make a decision to whether or not something is working, unless, of course, it is making you really sick...
Cymbalta did this to me and I was determined to take it...I took it for almost 2 weeks and could not even put one foot in front of the other foot, when I finally called the doctor...there is *no magic pill* for all of us....it would be so good, IF doctors actually knew what would help us cope better...but they don't know either...

You have to decide to *take care of yourself*....do what you can and leave the rest...do not push yourself to do things...you will only make yourself worse off...allow yourself time to figure out what might help you cope better...

Sleeping all the time is not a good thing....try to put yourself on a schedule and stick to it...I think most of us are the ones who normally do *everything* for our family members....and we *forget* that we are no longer able to do this...we have to figure out what is important as far as our health is concerned and do what we can to help ourselves...

You have to *accept the fact that we are no longer the same person we once were*....whether we like it or not...

I hope things get better for you soon.

Take care and good luck...


MiMi
IN GOD WE TRUST....MAY GOD BLESS AND GUIDE AMERICA....

My personal exchanges are Vitamin D and Pain and Wrath of the Dragon....if you care to visit..
 
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crystalgreeneyes replied to dollbug's response:
Dear Mimi and Survivor. Thank you so much. I know I have to deal with the depression but as I have tried a host of medications, everything either for pain or for depression has just made me feel so ill. When I tried Cymbalta as I said, I felt so sick, I couldn't even get out of bed for 3 days and it kept me really wide awake on top of that. Medications that would knock other people out cold have barely an effect on me. Drugs for pain often make my pain increase. I keep going to the dr. and getting nowhere. How can I struggle for 6-8 weeks when no one is here to support me. My husband "doesn't believe in" anti-depressants or taking any drugs. He doesn't know I am taking the sleeping pills - he would be angry if he knew. Not only that, I cannot afford therapy - he doesn't believe in that either, and I cannot afford all the different medications. We are struggling financially because I am not working and I am sure he resents me for this. I feel so acutely alone because there is not a single person I can go to, to ask for help and that scares me. I sound like I am making excuses but I live here, my husband is "fed up" with my "behaviour". I have tried and tried to make him understand but he doesn't so I have stopped trying. I want to go away somewhere far away and never come back.
I made an appt. with the rheumatologist that I saw before. She wasn't very helpful the last time I went and advised me to take Gravol to help me sleep??? but I am willing to try again.
I do keep as busy as I can - I am sometimes amazed at the amount I do considering all of this but most people will say that the more you do, the more will be expected of you. I just finished decorating the entire house for Christmas, although I was in tears looking at my daughter's little handmade decorations from when she was a child. It tired me out considerably but I did although no one is coming over..
It's easy for people to say therapy will help, massages will help, yoga, swimming etc will help. I cannot afford these treatments but I would be the first to go if I could. When I feel so hopeless, I write here...I will call the helpline.
Take care and know that I appreciate your kindness and concern.
 
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Survivor2007 replied to crystalgreeneyes's response:
crystalgreeneyes......I hear you. I have also been in that place where I did not have even a few spare dollars to do the things that I need to do to take care of myself. And I have felt the guilt of not working and not feeling that I am being a supportive and contributing member of my household. I am blessed that my husband is supportive, but to be honest, I have not really told him a lot about what is going on with me.....I do not want to be a burden. I fake it pretty well most of the time, and when I can't fake it, he seems to understand as best he can.
It sounds like dealing with this has forced other issues in your marriage to come to the front. Have you been able to provide your husband with information about fibro? Can he go to the doctor with you so that the doctor can explain the symptoms and what you are doing to try to treat them? Can your daughter help you to talk with him?
I do hope that you call the crisis helpline. And keep talking to your doctors about medication and support services. Please know that you are not alone. Sending you caring support.....


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