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[weredIgo]

You brought tears to my eyes. Perfect, perfect words.

Thank You,
C

[Dove]

Because it attacks the skin, could be that what it is really trying to attack is the nerve endings. If I rub a painful area, I can feel a connection to another part and I sort of follow the pain line around my body. I massage the area and sometimes I expell gas. Depending upon where I massage determines which way the gas will leave. The gas smell is not normal and it seems to follow a path along the lymphatic system. It has even come out of my ears.

Maybe someone could shed a little more light on this. The lymphatic system and the chakras.

My back pain gets so bad, I can not stand up, also, not sure, but, I think there are times when I pass out. I get this uncontrollable urge and have to sleep, like my body is shutting down. A feeling like half conciousness and half twilight zone.

[Dove]

Thank you for the beautiful poem.

One thing I have not been able to do is to talk about this with any family member. They have no idea how much I struggle to keep it together.

What does everyone here say to friends and family when they ask "what is wrong with you?"

[Katinka]

Hi Dove,
For my opinion YOU CAN NOT GO ON LIKE THIS anymore....it will "chew" you up..believe me I know from my own experience.
The best thing to do is tell the truth and show your family members your feelings about this. I am sure they will understand..maybe not all..some will not believe you..but if you show them your symptoms (I don't know which you have) and show them facts from the internet they will start thinking this could be true. My family tried to comfort me when I first got this..said that I do not have this..but never laughed at me. After time when I showed them morg pictures and the "thing" I have found they could see the similarity. Today they all try to support me and understand my daily research. My mom thought it was all in my head..due to the death of my dad and me being so upset about that but as my brother told her once more that this disease is real she's convinced and asks me almost every day how I'm doing.
I can not imagine that your family wants to see you suffer..but keeping it to yourself won't help either. Seek the support of your family that's important.
It is to me and I think for you too. Remember you have people here at this forum who feel just like you..we have all gone through this I guess..but together we will defeat this terrible monster.
Katinka

[Dove]

Thanks!

When I say family, it is not that they live with me and also, it is relatives like cousins, niece, etc. My immediate family members all died.

It sounds easy, but, when they found out I no longer worked they called it early retirement, rather than disability. No matter how many times I stress the fact, that, I receive disability.

Only one niece has a hint as to what is going on and she does not really understand it, but neither do I.