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"Systematic Lupus,Sjogrens Syndrome,,Chronic pain" (Bennett1229)

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04/01/2012 11:00 PM
mem6526

I just watched the trailer for the movie and it is adorable.

It looks like such a feel good movie. I am gonna get the DVD and watch it.

Thanks! You have a good attitude. I hope that it can rub off on me..LOL Laughing Laughing Laughing

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04/01/2012 11:03 PM  Top
younghopeful
younghopeful
 
Posts: 74
Member

Thanks. Oh believe me, it is hard work and I am trying so hard. I also do feel like giving up a lot but thankfully I have been doing better(emotionally). Yes the movie just gets me dancing and laughing through the whole movie. I am not one to watch movies over and over but I think this might be the one.

Previous discussions I participated in:
Withdrawals
Tips to remember medications
YOUNG FIBROMITES

04/01/2012 11:06 PM  Top
mem6526

This is a great support group. Unless someone is going thru this they really don't understand how we feel. It is an invisible chronic illness and so difficult to explain to people. Don't give up. I totally know what you mean tho. It is like why can't I just wake up 1 day without pain? It is beyond frustrating. I just take life literally 1 moment at a time. Otherwise it is too overwhelming. Make sense? Whistling

04/01/2012 11:17 PM  Top
younghopeful
younghopeful
 
Posts: 74
Member

Yea it makes sense. Honestly, I think I am one of the luckier ones. I have really bad fatigue and a lot of pain, but i am sure my pain could be worse. I also sometimes don't have hardly any pain. Like for a while I will feel a lot better. Some days my legs shake when I walk down the stairs. Has that ever happened to you? It is quite scary how weak I get sometimes. Like sometimes I fall. I just completely collapse. Luckily this hardly ever happens.

Previous discussions I participated in:
Withdrawals
Tips to remember medications
YOUNG FIBROMITES

04/01/2012 11:22 PM  Top
mem6526

I have horrible fatigue too. Just zero energy. I always have pain. It is just to what degree the pain is at that moment. I try my best to avoid steps but I know what you are talking about with the legs. It is a very scary feeling to say the least. Simple things that most people take for granted and don't even think about are exhausting for me. It sucks cause in my mind I want to do things but the pain does not allow me to. Has your Boyfriend been understanding? Has he read about it? Ermm

04/01/2012 11:28 PM  Top
younghopeful
younghopeful
 
Posts: 74
Member

My boyfriend is pretty much the best I could hope for. He is kind, he does things for me. even if he groans about it says a lot. I am planning on going to wisconsin for school but am rethinking it because of how much I will miss him. He still has a lot of growing up to do and some of the things he does makes me want to leave him. I know that sounds terrible because he really is a nice guy, but when he hardly spends time with me it upsets me. I don't have any friends so whenever he gets home I just want him to spend time with me. He puts up with all of my crap. I just hope he doesn't turn out to cheat on me because we don't have sex (it hurts me). I am actually worried about that at the moment. He is getting better though he puts an effort to spend time with me, which is hard because we have no money and he hates board games. I don't like spending too much time watching tv. Sorry rambling Smile

Previous discussions I participated in:
Withdrawals
Tips to remember medications
YOUNG FIBROMITES

04/01/2012 11:29 PM  Top
younghopeful
younghopeful
 
Posts: 74
Member

I don't think he has read about it but I have described what it is like.

Previous discussions I participated in:
Withdrawals
Tips to remember medications
YOUNG FIBROMITES

04/01/2012 11:36 PM  Top
mem6526

You are not rambling at all. It is hard to explain to a Boyfriend how this feels. I would tell him this..ask him if he remembers the last time that he had the flu and he felt like crap and then tell him imagine feeling like that everyday and then multiply that amount by like 10 million and add to it muscle pain and joint pain and being tired but you can't sleep cause you cannot get comfortable and everything takes a lot of energy that you do not have. That would be a good beginning.....W00t W00t

Does it hurt you to have intercourse? Like down there or because of the body pain? If you don't wanna say it here you can send me a PM. Wink

Post edited by: angelonearth, at: 04/01/2012 11:39 PM

Post edited by: angelonearth, at: 04/01/2012 11:40 PM


04/02/2012 12:05 AM  Top
gerinaz
 
Posts: 413
Member

Angelonearth........you have given younghopeful good advice. it saddens me when I see young people being diagnosed with this disorder. Young hopeful...you do have a great attitude. while I agree with most who say you need a rheumatologist, however, my salvation has been with a pain specialist who understands fms. that is the key. it can be an internist, a g.p. or rheumatologist, but they have to be knowledgeable.

my doc and I (yes, it is a team) have spent many years trying different meds, treatments, etc. I am now taking Opana and Cymbalta. my only complaint with the Opana is that it does not last quite as long as the manufacturer says it should. that has been the complaint from most patients and i am told they are looking into that. when i feel it wearing off, sometimes i will take a percoset . this combination has been the best so far. the list of meds I have tried is mind boggling: oxycontin, ultram, lyrica, fentenyl, tramadol, kadian, avinza, neurontin, baclofen, oxycodone, (and more) in addition to every antidepressant on the market. I HATE taking meds !!!! my doc always suggests that i increase my dosages, but i am ultra-cautious. this list represents years of trial and error. everyone has different needs and everyone responds to drugs differently. all I am really trying to tell you is that you need to have an advocate(besides yourself) who will work with you in an effort to alleviate as much of your pain as possible. for a very long time I lived at a pain level of 7 or 8 at all times. now, there are days when I am at a decent 3 and can function. it is a difficult journey but you can't give up........geri


04/02/2012 05:43 AM  Top
broken
broken
 
Posts: 9223
Group Leader

always remeber your pain is your own and though someone might have worse pain they dont have yours..it is great to have people who understand what flair means ran over by a truck and Im so tierd...keep fighting the good fight
we all have alot to give if one gets the help then some of this suffering is worth it..

remeber I am not a doctor I just say what I think
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