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One year ago
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SMHamm posted:
One year ago my entire life changed. I woke up to get ready to go to work, went to get out of bed, and my legs and arms hurt so bad that I could not stand up. This happened on and off for about a month until it became an every day occurrence. Soon I was not able to cut meat, hold a coffee mug or gallon of milk or grip a pen. My body felt like It was dying. I would call in sick many times before taking my first leave of absence from work in November. There were times I would stand up but forgot how to walk. I couldn't send the message to my legs to move. I cried every day. My doctor was sweet and put me through every test she could think of over the next few months, but all were negative. I went back to work in late December but it was a very physical job and took short-term disability in late January. When I returned again to work in early march, I lasted 6 weeks before taking another short-term disability leave that would end up with doctors recommendations that I not return to work again. My last day of work was April 13. I have seen most specialists at the hospital, had all kinds of blood drawn, been to physical therapy, and have tried countless pain medications. Nothing helps to an extent where I can lead the active, pain free life I can hardly remember. Pain is part of every day. I cannot accept it. Fybromyalgia is not OK. I am 41 and feel like I'm 81. Just to wash dishes or do the laundry requires breaks and often a nap afterwards because little things like that are so tiring. I have two teenagers so I have to at least try every day but I am grateful when they leave for school and I can go lay down and cry and sleep. I haven't slept through the night in over a year. I have no sense of what "normal" feels like. I thank god every day for my husband. He is my best friend and biggest cheerleader and when I'm cranky, he let's me be and loves me anyway. There has to be an end to this. I can't imagine going through this much longer.
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Schrode responded:
Dear SMHamm,

I am so sorry to hear how badly you are feeling. I understand your grief, I went through it not long ago. You are grieving your health and the life you expected. You will eventually get through it and accept your new life. It can get better with the proper meds, and there is no one pill fits all for FM. I spent months only being out of bed for 2-3 hrs a day. Now I am able to stay up about 12 hours a day, sometimes with a nap. Just don't give up and give the meds your doctor prescribes a chance to work, unless the side effects are too much.

I got through the tears and depression with a supportive husband, a good therapist and an anti-depressant. The anti-depressant also helped my pain level. When you have FM you have to redefine what "normal" is now for you. I look at life as what I can do Just For Today. It seems to help me. Just for today I can do two loads of laundry and be awake for the scout meeting tonight.

My favorite quote comes from Caprice on this site:

We must let go of the life we have planned, so as to accept the one that is waiting for us. ~Joseph Campbell

Please check the tips and toolbox on the upper right side of the screen. Please come here again and let us know how you are doing. I wish you a day with low pain.

Soft hugs,

Deb
 
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KatmanduLou responded:
Welcome SMHamm to our FMily, tho' it's a family none of us wants to be in. I was dx'ed in March of 2005.

I'm saddened by your story, and I wish we had the answers that would make all of us feel better - like before whatever this is came into our lives. I hope you find friends here who will help you cope; some days that's all we can get.

I too have an awesome DH! He is my best cheerleader and advocate; every new symptom and new drug gets thoroughly researched and reported back.. He's not afraid to tell me "sit and stay!", because I can't, except on my worst days when he knows not to push me.

As Deb says, check out the links. You'll find MiMi advocates for having your Vitamin D checked; mine was low, and the prescription supplements helped me!

Have the best day you can have,
Lou
 
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DakotaWilsonFM responded:
Hi Hun... You sound like I was almost 30 years ago... I was diagnosed with something else then but I still think FM has been around for atleast that long... but not until the pain hit everyday for in ever did they say it was FM about 3 years ago now I think...

I have multiple illnesses and they all like to react to each other and flare at once... I wouldn't wish any one of them on anyone... especially FM... It is scary to wake up the way you did and not know why and then not find an end to it... But there is help it just takes time to get it...

I think the first step in getting help for me was helping myself... as in any of my illnesses I had to get beyond the anger and depression and accept this was the way it was... and having to deal with depression on its own without any other illnesses adding to it was hard enough... add MS and FM and Deteriorating bones and disc diseases... nerve and muscle damage... and that 's just the tip of the iceberg... given a wheelchair and crutches at 30... well... I had a lot of accepting to do... plus I had 3 kids to raise and they were small...

I have to accept it every day to keep my head above water and out of bed lol... some days I still don't get out of bed... but I have to work at accepting it... I think it is a life long task just like it is a life long affliction...

i know thru a lot of trial and yes tribulation we can find ways to live with this... and we can maybe not find our previous health but we can find ourselves healthier... and life liveable... My pain is 24/7 but it isn't so bad most of the time that I can't tolerate it... It took a long time to get a dr to listen and work with me to get me to this point and I am satisfied with where I am today... Yes I have to take pain meds and I take vitamins and I watch my exercise... I do sppend a lot of time in my wheelchair... but I still walk and don't run lol... nor do I dance anymore lol... but I can still bop to the music in my chair lol...

I still find it necessary to put a smile on my face and drink my coffee with my son every morning... and that is one of my pain times... I still hope to spend time playing my game with my other son in the evening.... and that is my other pain time... I try to spend time with my grandchildren when my pain isn't at it's worst during the day... and I try to have time for me when I am not hurting too bad to think too lol..

It is important to find the small things and smile thru them... make them routine if you can.. Spend good times just for you and keep as positive as you can... do something good for yourself everyday... do something to thank your loved ones for standing by you... it makes you feel better... and in this game everything that has a chance to make us feel better is our goal...

I hope you begin to feel better real soon... Maybe your dr will be helpful.. maybe taking up meditating... I love meditating...

take care hun... I will keep you in my thoughts....

Dakota


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