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Please support our families.
2 Replies
Olivia - April 3

I had a look at the family support board today, and noticed a large number of questions that had not been answered. My husband had told me that he did not think it was worth him posting his queries, and now i know why. I will be more vigillant in checking this from now on, and was wondering if you would all mind doing the same. I know he feels guilty some times about the things he just doesn't get, and needs to be able to talk to others that understand what i am going through, and what he is going through. I hope that if we all support this service, more of our family members will be able to get the support they need. Thanx.


jean - April 2

This is a terrible disease for any of us to hande and family members are caught in between because they do not know what to do to help. No one wants to see their love ones hurting and in pain but with this disease you have to fight back even though you hurt. As the pain waxes and wanes and new symptoms come aboard it is only natural to assume that their must be something else going on. In some cases there are but in other cases it is just the FMS and CMP making your life miserable until you educate yourself , family and friends to conquer the affects of Fibro and MPS. Be strong and keep moving and keep supporting your loved ones for this I say again is a terrible thing to go through and I still haven't found any research that suggests the cause or the cure, I just know that when you have it you must fight it physically and mentally in order to survive. Even your doctors do not know what to do that is why there are so many sifferent treatments and why some doctors have found this disease to be a great money maker with medications and tests, etc. I'm just as frustrated as everyone else but you just have to fight it.


Olivia - April 3

Thank you Jean. I noticed that you constantly give help on the family support board. I hope I didin't sound to critical. I have had this syndrome for most of my life and have reached the point of acceptance, most of the time. But I have only been maried for 23 months, and am going through my first reall bad time since then. My husband has to be one of the most accepting and supportive people you could meet, and he is getting depressed at his feelings of powerlesness to help me. I didn't think it would have such a big efect on him. I lived on my own for three years before we maried, and had become very self contained in dealing with my pain. I did my best to help him understand that what i needed from him the most was just that he takes care of himself, and when i got bad, perhaps a nice cup of tea and a cuddle. But I underestimated his love. It hurts him when i suffer. He has taken over all the household duties, except the evening meal, he takes me to do the groceries, and rubs my back when I start to fidget with pain. He gives me all the support I need, and yet he feels useless, because he can't take away the pain. I am trying to stay strong, but I feel like a burden pulling him down with me, and as much as i would like my own pain to stop, I don't want to see the man i love suffer either. Sorry, guess i just let it all out. thanks again Jean, you are a jem, and I will keep fighting.



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