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This irritates me so much! Does anyone else deal with this?
16 Replies
klambert17 - July 18

Hello
I have been recently diagnosed with FM. Now that I know the symtoms I believe I may have suffered from it for a few years. Anyway, I am the type of person that does not complain! I keep my symptoms basically to myself. I do not want to be a burden on someone by being a constant nagging complainer. So alot of people don't know the extent of my suffering.
This is what just gets under my skin. IF I do complain, the response from other people is, oh join the crowd, I ache today, or my coworkers or even my own husband thinks that I don't know what pain is about. THEY don't suffer from FM, they don't deal with constant pain, they don't deal with fibro fog that is embarressing, they don't deal with being fatigued so much all you want to do is sleep! Sorry I'm venting. lol If I tell my husband I am in pain, he will say why? DUH!!! I have FM! lol.
I have given my husband some information about it, and he did read it and we talk about it but I don't think it has settled in. My memory is the pitts..and people just don't understand.
Just had to vent to people that really understand. I still work, and function to somewhat of a normal person. Some days I can clean the whole house then other days I just want to sleep. I am an RN, used to work on the floor but had to stop because of my back. Now I sit at a computer for 8 hrs. Even sitting hurts my legs so bad. I could not even imagine if I told my hubby one day I might not be able to work. He would laugh.
Thanks for your understanding.
Karen

 

Noca - July 18

I have wide spread body pain and fatigue from FMS and MHE. I try to explain the pain that is caused from FMS but no one believes me so I just tell them its from my bone disease MHE and they seem to get it.

My mother is an RN and deals with dying people everyday so I guess my pain isnt really comparable so she doesn't seem to care. My father just thinks I'm lazy because I don't work and am on disability.

Not many people seem to understand FM out there.

You on any medications?

 

Kiwigirl - July 18

Hi Karen
You are certainly not alone, I think we all deal with this type of response. The most common one I get is " but you don't look like your sick!!"
That really gets to me, when I am in so much pain, I feel like we should have a flag we can wave in someones face that says " I'm in lots of pain today" or something to that effect.
Co-workers are the worst, especially if they think you're not pulling your weight. Sorry I don't have an answer for that one, I had to leave my job several years ago and took my employers to court for the way I was treated. ( I won!) but that didn't make up for the treatment I got from them.
The best advice I can give is, learn to pace yourself, you can't just live life like there's nothing wrong anymore, you have an illness and you have to learn how to manage it, and being the sort of person who likes to keep their pain to themselves, well, you will have to remind people now and then that you are in pain and can't do as much as you used to.

Good luck and take care

 

ufdacentral - July 18

Hi Karen. I think it's great your venting and what better place to do it then in here! It's a strange thing this FM--I have always told my sister--if I were walking around with a broken leg, or some part of my body missing or something people could visibly see--I think they would have a tendency to understand a little better. I think the people in the USA (as a general rule) are so much sicker now then they have ever been before--so if I mention I have FM they don't really give a hoot. It's like they give me this look that say's-- tell me about it lady--we have our own troubles in this world. There are some days the pain is so bad I could stand outside (in one of our farm field's) and scream my head off--(if I had the strength)lol
My husband is allot more understanding then when I first got FM---I guess after his heart attack his compassion level elevated.
Between the pain and the fatigue it's difficult to accomplish much sometimes---I don't work out, I'am headed for retirement--I hope! I was never able to get disability---so I worked until I couldn't work anymore.
I'am not on any medications for FM---I suffer from med sensitivity. I do mostly supplements and heating pad and whirlpool tub and rest when I am able to. Other then that I just try to find a way to cope! Haha I guess I have just vented some too. Keep in touch okay---everyone with FM needs a place to go to let off steam or get some help. I just found this forum not long ago and I think it's a great place to connect with others suffering with this horrible disease! Blessings.

 

klambert17 - July 19

Hi,
Thanks for the responses.
Noca, I'm only on pain meds, I refuse any other meds. I want to treat it with proper food, exercise, and just good judgement of what my body needs, and strength from God. I do not like taking medicine. lol.
Kiwigirl, sorry to hear about what happened at your job, that is awful. People just don't know until they are in your shoes.
Ufdacentral, I agree 100%, people now are sicker than they used to be, so they don't wanna hear your complaining..lol. I haven't tried the heating pad. I try to swim when I can in my sister's pool. When I was on vacation a month ago I said ok..lets try to work all week in the yard and push it to see if it really would ease anything...haha, (I guess I was trying to see if it was something else..like just unexercised muscles and weight gain) HA! was I wrong. It stayed..lol. Guess I was in denial and a little mad, and thought I just needed to get back in shape. NOPE it's FM. lol.
Thanks for the support. One question, if you squeeze your muscles or I guess pinch them with your hand, do you get this intense pain afterward more than it should be, like lingering pain? Is this normal?
Thanks God bless you all.
Karen

 

fibromite.u.k. - July 19

Hi there Klambert, I know exactly what you mean and I think we all do. Nobody except for those of us who have fibro, really understand the extent of our suffering. If I had a penny for every time someone says "but you look well", I would be very rich. At the moment I seem to be going through a particularly bad time with it, pain just everywhere, can't think properly, feel as if I am in a daze, eyes won't focus, you name it, I have it, and that is apart from all the other health problems I have. My husband is quite good now, but to begin with he was totally uncaring about it. Even now, when I say I am feeling very unwell, the kind of response I get from him is "So what's new?" or "Well, it's something different every day with you". At Christmas I sent out a newsletter to family mambers and one cousin put on his card "We know you have problems, but keep your chin up and don't talk about it". Some time ago I broke my ankle and was in plaster and using a wheelchair and I got so much attention and sympathy because people could see something wrong, but I wasn't even in pain with it at the time. The trouble is that no one can see how ill we are, I like the idea of waving a flag to say we are ill. Maybe we should wear a t-shirt saying we hurt all over! Is there a fibromyalgia group you could join where you could meet up with others who will understand? I belong to a local group and it has been a lifesaver for me. I have made one particular good friend and it helps so much. We have already been talking on the phone for over an hour this morning. Anyway, at least there is this forum where people will talk to you and understand. Gentle hugs to you.

 

ufdacentral - July 19

Hi Karen--the answer to your question is a big YES. anytime I pinch or rub on a spot that hurt's...it makes the pain in those spots increase and linger! I haven't a clue why...but it does..everytime.
It's good you got a chance to spend some time in your sister's pool. Water seems to be so comforting---at least it is with my FM. About three weeks ago I was in between super severe flare ups, so thought I would do some extra things on the farm. I pushed mowed some grassy areas and planted some garden with my hubby...I helped mowed grass at my moms. Guess what, after a week of excerise...I threw myself into a huge flare up, just about that time, some stress barged into my life and then the weather got hot and humid...oh boy talk about weeks of severe pain and fatigue. I have always heard we are suppose to excerise through our pain and FM would start to get better. Oh ya RIGHT---NoT--at least I haven't found that to be true in my case. I sure hope you can find somethings that help you tolerate the pain--keep hanging in there and I will say a prayer for you if that is okay? Blessings.

 

klambert17 - July 20

Ufdacentral, sure prayer would be very thoughtful, I will do the same. :) He is the only one that gets me through my days and truly knows what's going on. Oh how I love my heavenly father. My pain hasn't been severe...I would say moderate. It's worse than it first started 2 yes ago.. I just wonder if it will get worse. Thanks for listening.
God bless,
karen

 

cheri21157 - July 20

ufdacentral what kind of supplements do you take and do they help. I am on lyrica and it doesn't work for me and the side effects I get just isn't worth it for me to take.

Do you or any one else on here get out of breath when you have done some kind of work (carrying laundry downstairs or just cleaning your house)

 

fibromite.u.k. - July 21

Hi Karen, it is good to know that you love the Lord in the same way as me. I don't know how I would get through the days without Him by my side. When I am having a particularly unpleasant thing done to me at the hospital (as I have done this year), I imagine Jesus laying by me and holding me in his arms, it helps so much. People have said to me how can I believe in God when I am always ill and so on, but I answer that if I didn't believe in God then I would never get through it at all. God bless you.

 

klambert17 - July 22

Fibromite.u.k.
Honey just remember through all the sufferings his strength is mighty in our weakness. He for sure doesn't want us to be sick, but we live in a fallen world and sickness is unavoidable. We all have different problems...but as we walk with him in faith he will mold us through trials and sufferings for our good and to bring him glory. We have to walk through alot of fires but it is refining us for the best.
Remember too, he will never give us more than we can handle.
Trust me I have had plenty of trials! haha. I always think too that things could be alot worse. I am thankful I can still work and function to a reasonable level on most days. I walked a mile this morning and did some water exercises this afternoon.(yay for sister's pool). I may have over did it, I guess I will find out in the next few days. A hot bath usually helps me too. I have to work on cutting out the sugar..that is my downfall..lol.
Take care and God bless you, hang in there!
Karen

 

mm30 - July 22

Karen, i was sitting here feeling exactly the same as you do.After a long time suffering i have also just been diagnosed. Although i hate to think you are going through this too as many are, its a relief to know that i'm not alone. After reading i guess it helps to think im not surrounded by uncaring people. This is just a natural response from those that dont have it. My dad used to sing a song that used to go along the lines of "don't tell me your troubles ive got troubles of my own". It comes to mind when im in this situation and i try to see the funny side. Some days are lighter than others if you get me. thank god i come here and read experiences, share and vent.
god bless :)

 

klambert17 - July 22

mm30,
Yes this is a good place to share experiences..and vent..lol. I only know of one other person in my life that has this. It is a coworker, and she has it so bad just touching her skin gives her extreme pain. Thank goodness the medicine she is taking helps. Mine is not quite like that..yet. Hopefully it will not get that bad. You really have to put a little pressure on my skin to feel tenderness. I get the sudden pains that shoot down my arms and my joints ache like arthritis. The other day I couldn't hardly get ready for work because of arm pain. I think out off all my feet hurt the worse. I guess it's because we constantly use the muscles and work the joints as we walk. When I wake up in the morning they feel stiff and hurt, esp the first walk to the bathroom, then they just burn the rest of the day.
Honestly I would not be surprized if more and more people were diagnosed with this. So much stress..I think it's system overload..and your nervous system just frys..lol, maybe not. But I know for years and years I have had trouble with anxiety and some panic attacks, and I think I just frazzled my nervous system.
I don't take meds for anxiety, I put my trust in the Lord now and turn to him, his peace and care is much more worthy. However, the pain sometimes calls for meds, at times it gets to intense to bear. I usually only have to take a 800mg of motrin a day or two during the week. All other times I just deal with it.
Ya know I read an article the other day that just touched my heart. We don't always see how bad things are in other places and how bad some people really have it. Poverty, no food to eat, family dying from curable diseases..etc. I just sat there and looked around my home, at all the stuff I do have and that I thank the Lord for daily. His gracious mercy is more than we deserve. So while my FM maybe a problem for me, it still keeps my humble and thankful of what I do have.
Just thought I'd share my feelings.
Take care and God bless :)
Karen

 

ufdacentral - July 22

Hi Cheri
The name of the supplement is Combination 23, it has 23 herbs that have been useded in china for inflamation and arthritis. I am unable to take any prescription drugs for my FM I always end up with an awful side effect. I also take two supplements for stress...one is called stress tranquell and the other is sleep tranquell. While nothing seems to totally take away the pain...I look for anything natural that may afford me a measure of comfort and this does. I like the sleep tranquill, it helps me get a little more sleep at night. I also do very warm whirlpool baths..and the heating pad!
To answer your second question about being out of breath...yes I am frequently out of breath. The other day I needed to carry my 5 month old grand-daughter about the length of a block and oh brother I thought I would need oxygen when I got back to the car...ufda. In my case I think part of it is my FM and I am over weight and I don't get enough excerise to build up my stamina.
I hope this helps answer your questions. Take care and Blessings to you.

 

LAWANDA - July 25

i know how you feel! no-one in my family seem to care. my fibro has gotten so much worse this past year. when i tell my fiance im in pain then he tells me somthing that hurts on him. i just give him a look. he doesnt understand at all. he says he does but he doesnt. i went today to get an mri of neck and spine. the lady doing the mri asked what was it for. i told her that my pain specialist ordered it because i have fibromyalgia and she said oh i have that. i think its phycological. i couldnt believe it! like i wasnt in pain or anything. does anyone have problems with their feet hurting and burning? i have had it in the last month but its been really bad in the last 2 weeks. i am going to see a foot specialist on wednesday. just what i need. another problem. i didnt know if its part of fibro or not. sorry but these last few months have been very painful. i still work fulltime and am not looking forward to going and being in more pain

 

Stacey373 - July 26

Hi Lawanda! I think it's actually worse when people do "sympathize" with you. Like when they say "oh I know, I have aches and pains too". My Mom is in her 60's and when ever I mention I'm not doing good or aching or whatever....she will tell me how she's feeling the same way. And I'm sure she does have aches and pains for her age...and to not sound like this is a "competition"...but she really has NO IDEA what I go through every day. (She even told me at one point that she too had fibro...but thankfully that didn't last long!) She can sit for days doing beadwork or she can run everyday all day long for a week straight and never be in pain or have extreme fatigue because of these things. And then she doesn't understand when I tell her I can't do those things because it would kill me!
When she comes to visit she wants to run every day with me (shopping, etc) and I live out in the country about 30-45 mins from town. so even "running to the store real quick" is at least a 2 hour trip. And I just can't do it everyday....so I usually save all my errands for 1 day a week. This drives my Mom nuts!

any ways....I'm rambling...sorry....LOL I have been having the foot pain lately too. I have had different stuff going on...extreme sudden pain in my heels like a muscle spasm, my heels and ankles killing me all day for no reason, and the last few days it's been every morning when I wake up I can barely walk. Alot of times it feels more like arthritis....and on the rainy days I can understand that being the reason...but like these past few days I'm still hurting and it's been hot and definitely not rainy! So I don't know what's going on!

I hope you get some answers when you see the foot specialist. Take care, Stacey :o)

 

bagee222 - August 26

Hi Karen, hope you feel a little better today. The response you get is typical of people ignorant to the fact! I feel lucky to have my husband who was and still is very understanding from the onset of my symptons, he continues to support me every day and reads all posts and forums he can. We keep looking for that miracle cure on the horizon. Some friends thought it was all in my head to begin with but recently one of them has been diagnosed and now she knows just what i meant. Hope you get understanding soon, take care

 

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