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livseyfam4 posted:
Does anyone know of a hotline someone can call. I really would like to talk to someone about things. I keep getting referred to sucide hotlines.
My husband although he is a great husband does not understand how I feel. Yesterday was a bad day and when I fell last night he wanted to take me to the hospital. I am having trouble with people believing I hurt and everything associated with this because I look healthy. I did go to the ER a couple weeks ago with cramps in hands, arms, feet and legs and I could not feel my arms. I was diagnoised with a headache.
I called the rhuemoloogist the following day and explained what had happened and the first available appt is Aug. 28th. I was told all other appts are reserved for patients in pain. I am trying to get into another Dr but that will be awhile.
In the meantime, I have no one to talk to.
Any help would be appreciated.
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RacerLady503 responded:
I'm not sure what I can say to help you, however - as a new community member myself, I find it very discouraging when we post something and NOBODY responds..... I guess some of us come here for some sort of support or acknowledgement.

Keep your chin up. My md has referred me to a Rhuematologist and I am unable to get in until September 9th..... Very frustrating - but I as well have heard that the Rhuematologists (at least here) only take appointmetns by referral so I really don't have much of a choice.

The pain can definitely take a toll on each aspect of our lives. Unfortunately "we" don't realize it until damage has been done. My daughters suffer greatly.... I'm not a bad mom, however, pain keeps me from wanting to do anything "fun" with them. I do what I can. My youngest (9) tells me that I'm not like "normal" moms and why can't I be? That I don't smile or laugh and I always hurt or have a headache...... Her saying that was a bit of a wake up call to me. Enough at least that I try to focus more on my reaction to my kids and my family.

A cure for this would definitley be of great help! You can only see so many doctors and take so many pills before you're just "burnt" out on appointments and pills. I'm there - however, they're relating my diagnosis to car accidents (2 in three weeks) back in 2008. We are still in litigation over these and have our trial date soon. I am not in a situation where I have time to wait for new dr. evaluations. I have to have this stuff noted and documented for my lawsuits. Future medical is going to break me and none of the settlements will be any good to me if I have a stroke from the high bp first....... Viscious circle.

You can vent anytime!
It only gets the best of me if I let it
 
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mrahoe responded:
hello and welcome livseyfam4

i dont know of any hotline but we are always here to listen. . you might want to reas and print out the links i will post here and that will give you something to have your hubby read so he might better understand what it is your going thru..

http://www.fmscommunity.org/lettertonormals.htm

http://www.butyoudontlooksick.com/articles/written-by-christine/the-spoon-theory-written-by-christine-miserandino/

http://www.fms-help.com/fibrowheel.htm

also come here anytime as we all understand what you are going thru and will be more than happy to listen. .

hope this helps. . & again welcome

john
Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind.--Dr. Suess
 
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livseyfam4 replied to mrahoe's response:
Thank you both. I read the links. I started typing a response but it hurts too much. That is why I have been looking for someone to talk to
 
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mrahoe replied to livseyfam4's response:
well if it hurts to much to type do you have yahoo mesenger ot any other chat program andf a mic ? if so my email is in my profile here please send me an email and let me know what program you have and we can try and set up a chat. .

john
Be who you are and say what you feel, because those who mind don't matter, and those who matter don't mind.--Dr. Suess
 
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hollycriss69 responded:
I was searching for a hot line I could call also. I have a wonderful doctor. but unfortunately there are limited treatments he can do for me. this is no surprise since I have been dealing with this since 1998. I am suppose to see a ra in july not sure they can offer much pain relief either but atleast it a step forward. if I could just get daily massages pd for by insurance it would help me tremendously! ben battling this for some time. there are few helpful treatments and doctors. the only pain relief I get is 10mg of hydrocodone at 6 am and 10mg of hydrocodone at 2 pm. I can get through the day with this. but government or someone has cracked down on this drug so hard that it is impossible for people who benefit from it to get it.
it has become a street drug and that is not fair to some!
they say you will always have to go up in mg for this to help but for 3 to 4 yrs I have been taking the same mg and have not had to increase. I know my body better than anyone else. I know what helps and what doesn't. tired of trying every anti depressant on the market!!!!!


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