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losing friends, your spouse and even family members?
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michmorn posted:
Has anyone else experienced the loss of most, if not all your friends? It seems once I told them I have fibromyalgia it was as though I told them I had leprosy. That and many of them got tired of me having to back out of events last minute because I woke up that day unable to move. People stop asking or coming around. Family does not understand. If I say I am sick that day...I get things like "do you have the flu?"....even though they are well aware of my disorder. I respond with..."no...it's Fibromyalgia...it is ALWAYS fibromyalgia" ...Also, ended up losing my husband only one year after he vowed to love me in sickness and in health. I've lost everything. Especially my pride and self-worth. Now living in a 400 square foot apartment which is dark and it's driving me insane. I do have a wonderful boyfriend and he tries to understand and be supportive...but I can not stand that he has to do the most simple of things for me like open the toothpaste cap because my hands aren't working right. I feel very alone at times even when I am not....until I found this community. Thanks to all of you. I've been reading as much as I can...and feeling much more hopeful.
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Teelady1 responded:
I'm sorry that you have experienced so much loss of your friends and your spouse! I have been fortunate in that most of my family and friends have been very understanding.

Sometimes I feel bad that I have to say 'no' to doing things - but I know that it's for my own good. I have learned if I try to do too much and overdo it, I usually pay for it later.

I'm glad that you have a supportive boyfriend!

I'm also glad that you found us.
 
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michmorn replied to Teelady1's response:
Thank you Teelady. I really am glad I found you all. Thank you for your kind words as well. I am learning what my limits are too...and trying to just accept it. Also, if friends or family can't accept it...that is their problem, not mine. Much less stress for me. Have a good weekend!
 
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1wareaglefan responded:
Oh, I'm so sorry to hear what you've been through! I say your husband didn't deserve you, if he'd treat you that way. My family doesn't understand either. My husband is in denial about it still, after 4 years.

I recently had a knee replacement, and he keeps making comments about how after it gets healed, I'll be able to do all this stuff he has planned. I don't understand how he (and many others) think if you get your knee fixed, everything else is magically made well!

This is the toughest illness, b/c it's not understood. That makes it so hard to live with. We're fortunate to have sites like this one, where we can get the understanding and support we need.

I'm glad you found us, and I hope your doctor can help you with your meds to give you some relief.

Take care!
Hugs, Elizabeth
 
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michmorn replied to 1wareaglefan's response:
Thank you Elizabeth. I agree about my ex husband not deserving me, I didn't think so at the time....but now I do. He's now remarried to a woman who makes lots of money and I remember the look on his face when I was first denied disability. Like he was so disappointed in me.

I'm sorry you aren't getting the understanding and compassion you should be. And, no... Fibromyalgia is not very well understood. If I said I had MS..people would get it. Not Fibro though. Doctors have dismissed me too. I do feel so fortunate to have found this site..and people like yourself. Otherwise...depression would take me right down and I don't know if I could go on. Now I know I am not alone....and I will go on.

You take care too...I hope your knee heals quickly and as painlessly as possible. I know recovering from surgery with fibro is much more difficult. My thoughts are with you.

Michelle
 
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booch007 responded:
Hey good morning,
This is I think one of the toughest diseases to live with because of the lack of understanding there is. Those few commercials helped us a bit. But we have a long way to go.

The other thing is we are all different in our levels of disrepair, that some are so much more functioning then others, so it is confusing to the normals.

My break through was bringing my husband to the neurologists and seeing my trigger point therapy. When he saw how many needles I needed and how many muscles were in trouble, he was OMG......I was liberated when she told me what muscle was making what symptom and I was vindicated finally in all their eyes (as my DH told my children...I was not crazy) He had gone to other docs and the answers were crazy......I cried alot.

He has stood by me, though when he is overwhelmed at the store and I am in a low...I can see it is straining on his spirit to carry me too. I try not to actually complain, I am just slow....

The complaining is done here. People don't want to know what is up with us. I saw a patient in the office a month or so back, I have to say...if she said. Fibromyalgia once she said it 900 times. Be careful to lay me down I have Fibromyalgia, I have to go to the bathroom again because I have fibromyalgia.....
The whole 4 hours she was with us. NOW EVEN FOR ME, the empathetic nurse...the one with FM....I was ready to throw up. If I heard the word again.

Everyone is different but you have to be strong in this, bring all the issues to the gang here, leave the family alone. Use other reasons for not attending. I have a headache, diarrhea...must of ate something bad. They get that so much better.

I just don't even try to get the crowd to GET IT. They can't.

Forgivemness is the greatest asset here. Yes I have made my world small, I do few things as I work full time..I have just enough of an 8 hour wellness window to do that. If the day is light and I get to rest in there I can do more.

My spirit is always willing to do things, it is the body that puts me in fear. Sometimes I say no to do things because of fear. That I will not make it through the event, or the head won't have support and it will trigger the hands and arms to hurt more. So I say no not tonight.....

For sure you have to get the house changed a bit, get light in there....change it up to brighten your spirit. To tune your head up takes talent and time. It is a game of stimulation. Doing things you like, listening to good music, reading books that you love. Making a list a small things you CAN do and not looking at what you can't.

Get out of SAD and get into MAD...that will give you energy to fix a few things. You are free to do it all now. No DH to hold you back. get a positive spin on this.

Sitting and brooding will bring more pain. Believe me that when I do a project here and cross the line, I fair much better in the end with my body....so execise and movement is a MUST. I grade the pain I have and don't push at a 7/10....or if I can feel a headache coming. I know QUIT and STOP. Rest up and start again if I can later. I also medicate.

So, long winded and all it really is , is bring the junk here...leave the family alone. They will NEVER get it. We do.

We are open 24/7. Dumping it here sometimes is all you needed. rather then hit someone you love with your frustration you heap it on paper here and you feel better.

Good luck and get light into your life. Flowers on the table and sun on your head......it is agressive therapy that you can do to brighten YOU. I always feel better after a little sun and my nails done....or a massage. I do it FOR ME!

YOU ARE VALUABLE....treat yourself that way, you are a gem! Good luck, Nancy B
 
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michmorn replied to booch007's response:
Hi Nancy,

Feeling a bit tired today so can't type a long response..but I wanted to say thank you for all the excellent advice. You're absolutely right. I'll come here to talk...I'm new here and already I'm feeling better. Also I will do what I can to make the best of my little place. I've decorated it as nicely as I can..and I do have flowers.

wishing you a pain free weekend. hugs.

Michelle


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