FAMILY UNDERSTANDING

[tessaflo]

Hi there I have had fibro for over 15 years and my sister in law has just phoned to to tell me that she saw a programme on tele about fibro and didn't realise I was actually in pain!!!!! She is kind enough to ask how I am but doesn't want to hear my complaining. How do you get people to understand.?

[Dizzytwo Moderator]

Good evening, it is sad when we have to try and educate our friends and family about our illness even when they want to know about it. But for those who make it clear they don't want to know I really don't even bother trying to be honest. I need every ounce of energy i have to get me through each day.

If your sister in law now knows your in pain and has made it clear she doesn't want to know then nothing you say will make her change her mind . Lets just hope she never has to walk in your shoes. xx

Mo

[Maureenclayton in reply to Dizzytwo]

Good reply

[Bobby16]

That's a difficult one unfortunately.

[Maureenclayton]

I am so sorry you have a sister in law like that, mine is very different and cares a lot. I hope you have at least one friend who cares, if not you always have us here. Take care. Xx

[grandmama16]

Only a few of my family realize the pain and fatigue I have. As for others I do not mention it except to a couple of women I know who have it. If my cane is mentioned by others I say it's for balance. No one wants to hear about pain and fatigue.....laziness. So many who are years older than my 70's are active. I want to DO things but I just can't....my house is enough of a challenge and hubby with PD who never complains. I feel as if there's a big wave in front of me that I can't hold off.

Has anyone heard of low dopamine in Fibro patients? I keep forgetting to ask my Dr. to include it in blood test. She discovered my Epstein Barr just on a hunch. It causes fatigue......anyone else? It's not going away after 2 yrs. I guess I should've put this in a seperate post. M.A.

[Mdaisy in reply to grandmama16]

Hi grandmama16

I was prescribed Pramiprexole for low dopamine .... and most research points to neurotranmitter levels either too low or way too high. Substance P (a substance excitably to pain) is apparently 3 times higher than healthy people and I definitely felt better when I used Capasacin cream. Links below;

drugs.com/cdi/pramipexole-t...

drugs.com/ppa/capsaicin.html

I had mono/glandular fever (EBV) back in 2001 for around 1 and a half years, I just couldn't shift it. It is thought this is what caused my Fibro. There is some thought that EBV stay latent and when body is weak appears to take advantage. I wrote the following post about it.....so it is an interesting theory but not one the DR's seem interested in !

healthunlocked.com/fibromya...

Interested to hear your thoughts?

Emma

[grandmama16 in reply to Mdaisy]

Interesting articles. Is the brand name Meripax? My husband decided against it as the secondary med. to Carba dopa Levadopa, because of ocd side effects...and others. My Dr. is open to theories. about Fibro. She tested for E. B. due to my fatigue. I'lltry to remember to mention dopamine to her. Thanks, M.A.

[Mdaisy in reply to grandmama16]

Pramipexole brand names are Mirapex, Mirapexin, Sifrol - since I have been taking L-lysine I seem to have improved, so would like to try more vitamins that are mentioned to reduce viral load in case this is having an impact - as I'd like to be able to walk about without dreadful fatigue. There is also possibly a thought coconut oil supplements that might help latent EBV. It is a theory that might help those who had previous mono/glandular fever maybe?

[grandmama16 in reply to Mdaisy]

Thanks for suggesting coconut oil. My son suggested it for cooking and for skin. I'll look for the capsules. M.A.

[Mdaisy in reply to grandmama16]

No problem I have been taking coconut oil capsules and I do feel it helps the symptoms a little

[DanielleGemma]

As hard as it is to deal with sometimes you just have to let negative people or people who are naive to this kind of thing just become water off a ducks back to you! Sadly you will never be able to change the ignorance of some people and it is never worth upsetting yourself over it 💗💗

[deejames]

It's good your sister in law phoned to tell you that she now realises you are in pain. It's difficult when nothing can help that pain so the person asking about you has nothing to add.

I work on a system of telling a pain score and we leave it at that. With my nearest and dearest they have said all there is to say. I know they care. I know they would do anything to take my pain away but words don't work !

Dee

[Mdaisy]

Hi tessaflo

I think most of us can empathise with this, as it seems many of us have had at least one person in the family who just doesn't get it! Ironically, my person has had Crohns for many years so should understand chronic illness but any ho!

In my experience, most people react to bouts of illness of healthy people more than someone living with a chronic illness as it becomes the norm.... but doesn't make it any less worthy of sympathy or kindness. It's strange why this happens..... when it should in my opinion be given more understanding.

I can only suggest trying to provide people with information in the hope they will be educated and then show understanding. If not, it may be they will one day realise and apologise ... it's so hard when you would love the support of family but sometimes only people living with it truly understand.

We are here to listen and offer advice as best we can.

Emma

[Matrix]

I totally agree with you it would be lovely but it's totally never going to happen in some of our cases so I expect nothing and I'm never disappointed they dont mean anything bad they just have no comprehension of how much it hurts and it's not just fibro many of us have many illnesses to cope with .I hope you're sister in law grows in understanding and loving concern for you . Take care of yourself and try not feel bad and don't let others make you feel bad either . Peace,love and light , im here if you need me xx 😇💕