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Living With Fibromyalgia - Online Support Group

Explanations for Friends and Family

#1

For me, barely a day goes by that I don't think or ponder ways to explain what we feel and what this frustrating debilitating illness is really like. I find that I have become more and more silent as time goes by because I feel that it all just sounds like whining and complaining. It seems almost impossible that anyone could suffer the myriad of issues that we do and not be dying or at least headed in that direction.

Recently my Hubby has had a bad bout of osteoarthritis in his knee and he is on his feet at work all day so it has been no small problem for him. While thinking about that this morning it hit me that maybe he could understood, while he is in pain, a simple explanation of what this is like. I think we all have wished that in some magical way we could place a hand on a loved one and just for a few minutes they could feel what we feel. I wouldn't take long to make quite an impression.

Since that isn't possible - I saw an opportunity to help him envision it. Here is my description and keep in mind that each and every one of us is very different and our symptoms and daily issues differ greatly. This is just my example and you could easily fill in the blanks personally.

So -here goes. Well you have this pain in your knee from osteoarthritis and I completely understand that it is debilitating and makes it difficult to stand, sit or sleep. Very frustrating. While that knee is throbbing, add to that a dull headache that you have most of the time - sometimes worse but fairly constant. Along with the knee and the head, both of your shoulders have pain in the trigger points along with osteo pain, one of your hips has joined in with a dull ache and at times sciatica runs down that leg and into your foot; add to these elbows that throb on and off - not entirely sure if osteo or fibro are to blame for these; you have a bad disc (as do many of us) in your neck at C6 & C7 and from that you have shooting pains, popping, cracking and bone on bone pain most of the time with difficulty finding comfort or sleeping; just to keep the others company the L4 & L5 pain throbs while sitting or bending and the excessive bone growth at the end of your spine causes continual pain and issues sitting or every time you move. Still with me..... Both feet scream as well and the left is especially troublesome and pops and cracks with pain with every movement; your hands are riddled with pain 24-7 from osteo and Dupytren's Contracture which is slowly causing them to curl and become claws. You itch with stinging itching all over your body - sometimes faint and at other times to the level of a bee sting and no scratching will alleviate the pain. Much of the time you are a bit dizzy and unsteady on your feet, easily sweat and or cold much of the time. Add to all of this mental confusion and clarity issues, word finding problems and just plain trouble with conversation. Nausea is the norm and most of the time you must go to great lengths to deal with the A to Z issues with your stomach. Most of the time there is a continual buzzing, ringing and other noise going on in your ears. Much of the time you will have bloating and urinary urgency.

Okay I have hit the highlights here and by no means is this completely inclusive of everything we experience. This is not a scenario we go through every now and then - this is our daily life. I hope this does not come off as whining because this is surely not my intention. If you could see all of this going on inside our bodies it would be, in my mind, a constant nerve ending flare and misfire back to the brain.

I know each and every one of you have other symptoms - things you live with on a daily basis that you can add to this list. I hope this is a helpful start on looking at how we live. Every day, I am just so thankful that I get out of my bed and put one foot in front of the other.

#2


This picture best shows what we feel in a realistic way.....

#3

dear linniepies. i dont think you are whining or complaining at all.. ( even so, I surely wouldn't blame anyone for doing some of that some of the time!). As I would say 'Just reporting the facts!" I am very blessed that the people in my life have always validated and supported me, shown me compassion and love. I always hope and pray that others have this support or are able to gain it from their true loved ones. Certainly serious illness is hard on all members involved. On the occasion that my husband became seriously ill or had some serious pain he nearly cried thinking how i have been living this way for 28 years. I wish he did not even have to experience such...sigh all the best to you on this very difficult journey . i send to you BIG HUGGGGGGGGGGGGGGGGGGGGGGGGs

suzie

#4

Good to hear from you and this was a great way to explain it. So what did he say?

#5

Thanks so much to each of you. My Hubby tries hard to understand but I believe it is still very difficult for him to grasp it. I have 4 boys and only one really understands but they are all kind. For me I get quiet because I just don't know what to say to make those around me understand. So very thankful that I have a place like this to vent because this is so very difficult to wrap your brain around unless you have been through something similar. Love and Hugs to you all.

#6

You are not whining! People think I’m just complaining all the time and that there’s “just always something conviniantly wrong with me”…people don’t understand and iv never tried to explain it because I thought I was crazy but now I know I’m not. I’m here if you need to talk. Hugs<3

#7

I'm so done trying it just has caused me so much pain and loneliness, I am tying to recover from a major setback and the last thing I need is 1 more negative thought from hurtful comments from those I love and knew no matter what they would always be there for me, if nothing more than say its going to be ok I better protect my self by coming here and expressing how im really doing both physically and mentally . and building a personal relationship with Jesus with the only one that understands and can help me day by day and if somebody wants to know what it feels like got a new one i heard from someone in a group. just imagine some one taking a bat and beating your body all over from head to toe Imagine that and

the pain and stiffness soreness Now you get the picture or do you still think I'm crazy? I don't want to become bitter and withdrawn and I have tried so hard to even be polite about my expressing how horrible this is for us to live with and i do my best at not telling the whole list, It's my emotions that gets me this disease can take you under if you are not strong I ask now that I learn how to forgive them for not knowing or understanding to those who care but don't know how to help so they just stay away or do not call and for those who could care less and and add more hurt by not believing you. I need to use my energy and focus on how to survive and get better how to we help find a cure I know Awareness is Key but trying to convince family and friends let them go!!! God Bless You and I thank you so much for this discussion you did a remarkable job explaining and almost every last one except a few here and there describe my tortured body!! hang in there!! Gentle Hugs, Bobbye

#8

Hi Bobbye - I am so very sorry you are suffering so and I so completely understand. Over the 20+ years that I have been dealing with this monster, I have run the list of feelings including anger and frustration to the point of now wanting to talk to anyone. Unfortunately for us, being lonely and alone is not helpful for our health and just complicated everything. I agree with you that we can't force others to understand or accept us. We have to love ourselves and be our own advocates as hard as that may be at times. I am trying hard to accept the fact that most people will never get it, can't get it or won't even try. Having a place to vent and be understood by others who know the path we travel is so very important. I have given up many people in my life who don't feel that a relationship with me is important to them. I have learned that there was never a solid relationship to begin with. I have a poem that I clipped years ago and I will post it for you. Love and Hugs to you and know that you are understood here.

#9

Well put. All the frustrations of my day today. Brain fog so bad! Huge argument with my boyfriend that I can mix up my words not my thoughts he says. That doesn’t even make sense first of all. My words come from my mixed up thoughts. No one understands everyone thinks I make excuses. Why dies no one believe me. I’m not a liar!!