Trouble explaining illness to family

Hi, everyone!

I've been lurking for a few months now and decided this seems like a positive community and decided to officially join.

I've been seeing all sorts of specialists for the last year after ending up in the hospital with a phantom pulmonary embolism. It just turned out to be the costochondritis I've had for years flaring up big time. Now I've got all sorts of symptoms and pains flaring up which is leading my rheumatologist to believe I have fibro or am in the beginning stages of lupus.

I'm stuck in this cycle of needing rest because of the costo and needing to keep moving because of the fibro, add to that all the pain, fatigue and confusion that comes along with fibro and myself constantly in the midst of partially done chores and projects and a little stressed out. I feel like I've explained this to my parents, but they're just having flash backs to my lazy teenage days.

Well, I feel pretty lazy, but it takes two days to wash and put away a load of towels because if I do it all in one day I will be incapacitated the next.

Did anyone else have trouble convincing people they were sick?

Hi SpaceCadet, and welcome! Another lurker! I was a lurker, too, once upon a time. We have wonderful members who love to help one another and, as a bonus, we really do care about each other, too. I think you will like it here.

Well, very rarely do family members and friends understand what we are going through. I have lost two long time friends due to this illness. One was a friend for 32 years! I now pick my friend carefully and do have wonderful ones who understand as much as possible without having the illness themselves.

But, we can't choose our family, can we? I can just see myself doing the same thing that your parents are doing....if I didn't have fibro. My children are all adults now. But, we do have a thread called Fibro 101...the first thread on the forum....and there are some links that you can print out that might help your parents understand more of what you are going through. I would suggest the links called, A Thorough Explanation of Fibromyalgia and Doctors Respond to New York Times Article. These both are very good. Many members like the link called The Spoon Theory, too. This might help your parents put in perspective what is happening to you. Do read Fibro 101. All of it is good.

I use magnesium malate and vitamin D3 to help with pain and fatigue. There are links in Fibro 101 about these, too. Also, I take CoQ10. I have been taking it to help with muscle pain and to help protect myself from heart attacks since I'm also diabetic but just found out it helps with fatigue, too! I don't seem to have the horrible fatigue that many members have to maybe this combination is why. On a site I was reading it said the "CoQ10 is found in the mitochondria (power centers) of your cells where it is involved in making ATP, every cell's principal energy source." So this is something to ask your doctor about, too.

I'm looking forward to getting to know you better. Don't hesitate to ask questions because we are here to help you. Hope to hear more from you soon.

Sherrine

Welcome to the forum! It took years to finally get my husband to understand how fibro works. Educating yourself and your family is the best way to go about. Offer them reading material and sit down with them and talk it over.

This is a great place to learn some helpful tools to managed your fibro. I have learned so much here that I finally have a good treatment plan for me. You can pick up some great ideas here. Many things are trial and error method. We are all so different here and many here have numerious health issues besides fibro. Once you figure out what works for you life will be much easier. When your young it can be harder to adjust I would think.

My favorite thing I learned here is do things in moderation. So try not to do a days work at one time. I use this tool in everything I do. This keeps me from over doing it. Fibromites tend to have delayed reactions. Sometimes it takes another day to feel the consequences of your hard work.

Pain and fatigue are usually on top of the chart for most of us. Learning how to managing these can be difficult at times. I just read post frequently and learned from others. I hope we see you around again. Feel free to ask questions. Good luck with teaching the family about fibro. So many things on line that you can share.

Hi spacecadet,

Often we do not look nearly as bad as we feel!! Thank goodness!

But its deceptive..people always think if you do more , you will feel better.with fibro this is not always true. We need to push, but if we push too hard, our muscles push back!

I was feeling better and way overdid 1 week and spent a week trying to recover...so my body said..that was too much!!

This week i am pacing myself a bit better...the weather is also lovely which really helps me..

your parents sound great, so just keep communicating.it takes a while..my husband said, there's no cast, to remind me it hurts.

Lj

Hi Space Cadet
Welcome - Im a new member as well.

I have had a lot of trouble with people believing I have physical health problems. Despite often missing family events, outings with friends, my family still doesn't understand. I look healthy despite being malnourished and fatigued, but people think if you r sick then u look sick.

I've tried to educate my family, without sounding like I'm whining ... But it is difficult. Bc I can't work the family thinks I just choose not to work, and sit home eating Bon bons or something? I recently had to clean my dad's basement that flooded (he has Alzheimer's and doesn't live at home anymore) I cleaned it all by myself... And I told my sister I was angry she and my brother didn't help, and told her "maybe you think it's not a huge thing for me to do, but it took me a week in bed to recover from that"

I've often told my husband that if I had cancer then friends and family would be sympathetic and validating, even helping me out, but that's never happened. I often am told that I look great, I'm walking fine, (I have had multiple fractures including both hips), and I know it's meant as a compliment, and I always say thank you... But

Like you, I CAN do activities, but I pay for it the next day(s). People never see me in bed with heating pads and ice packs... They don't see my tears when I miss another graduation or wedding... Your parents hopefully can see that, and will support you. Give them literature or show them this website. I read my husband part of your post - about paying for your activity the next day... That's what happens to me! It's hard when u can DO something but suffer for it. People don't understand.

I understand, because that's exactly what happens to me. I can't work, bc even if the first day I could push myself to get the job done, but I won't make it to work the rest if the week bc of it.
Take care
Jfer

In so many illnesses, if you push harder, you improve...so people often think we can just push more and we would be fine...

If only that were true.....then we would not have fibro!!

Its a fine line, because if we do not keep moving, our muscles get so tight and more painful. But if we do too much,our pain makes us stop and rest...its hard to find the balance.

I could push a lot more , til my vit d crashed...then it was impossible for a while...now that that is improving i go two steps forward and 1 back...

We have all had people who do not get it...and some who do not wish to understand it...

It took my husband a long time to get it... And especially with a wicked flare one day, and good the next...its hard to understand .

So we keep trying to get those around us to understand the best they can.

Hi Space Cadet:

If our pain was not so invisible we would be understood more.

There was a time when I would clean up the house and do work outside in the garden all in one day. Those days are gone. It is just my Husband and me. He is still working. I have to prioritize chores. Many don't get done for a long time but some chores must be done. I had to change the way I was in wanting everything to get done. I told one Doctor that when I am stressed I clean. He said my house must be spotless. Not quite and for sure not any more. Not so stressed now. Chores are always waiting, pick one a day. Do find tools to make life easier.

Loring

Osteoarthritis in Multiple Joints, Fibromyalgia, Neuralgia, Chronic Daily Headaches, I.B., Hard of Hearing...

Thats nice your mom could help you..you sound like thats a really bad flare of the rib pain...

Does anything help it? Like heat or topical pain products?

I clean mine about twice a week..

@lmj

It's a really bad flare. I've never experienced anything like it before. It's been constant for the past year and a half with no repreave for more than a few hours. My rhuemy thinks my fibro is what is making it so bad. She hopes that once that comes under control the chest pain should go away. It's What stops me from just about everything. The fibro pains actually aren't so bad most of the time.