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Old Sep 21, 2008, 08:33 PM
cantstopcrying's Avatar
cantstopcrying cantstopcrying is offline
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I am in so much pain today!! It's so hard to tell whether it's the CMT or the RA. Oh, sorry, CMT--Charcot-Marie Tooth's Disease. It has nothing to do with teeth (Tooth was a last name of one on the "discoverers"). It falls under the Muscular Dystrophy umbrella and mine not only affects my feet and legs, but also the intrinsic muscles in my fingers. I also have rheumatoid arthritis. I'm taking Cymbalta to combat the neuralgia from the CMT as well as depression. Not sure how it's working on either except I do know I don't feel like strangling the next person I hear breathing when I take it so it must be ok. For the RA I should be taking Humira, but I can't afford it. And I do have insurance, but my co-pay is so high, that if I got all my medications I should, I would be paying $210/month; which, I know, compared to some is nothing, but to me it's everything. So I have had to stop the Humira and for the last two weeks the pain has been getting worse and worse. My hips are killing me, my fingers, elbows, back, on and on and on. I do wear my braces for the CMT for my feet, so those aren't so bad, but I almost fell getting out of bed this morning. Ooohhh, and if this isn't enough, I now have a urinary tract infection. AARRGGH!! I'm sorry for venting, as I know there a ton more people with much more serious problems, I'm just in so much pain, which in turns sets off the depression, which in turn sets off the comfort eating, which sets off the depression and self-loathing. I'm trying so hard not to cry, but it isn't working. If anyone does read this, thank you.
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"We can't talk at the same time! It doesn't work like that! I talk, you talk, I talk, you talk!!" ~ Peanut
CMT, RA, DJD--I feel like alphabet soup!

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  #2  
Old Sep 21, 2008, 10:01 PM
freewill
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major... gentle.. gentle ((((hugs))) just a whisper.. cause you are hurting so very much.....

a urinary tract infection on top of everything..... gezzz.. so not fair...

the standard.. the crandberry juice.. and even the tablets help... I grew up.. with those infections.... and.. the juice makes the tract inhospitable to the bacteria... at least that is what I am told....and.. it is stock... here... in my home.."just in case"....
you can also ask your doc.. and I believe it is over the counter for a drug.. that makes it more comfortable.. "prydinaine" (sp)... I am deeply allergic..... and you would want to check.. you can take it with other meds... but while antibodtics.. kick in... it makes the pain better....

is there any way... you can get samples from your doctor for the other med.. that you take... or get it directly from the manufacturer...I was getting Advair...which is like the 250....

Probably the last thing that you want to think about right now....

more healing (((hugs)))
  #3  
Old Sep 22, 2008, 02:50 AM
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multipixie9 multipixie9 is offline
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Cant Stop Crying

I am so sorry the pain is getting this bad. I have a saying that is so simple it sounds trite, "Pain is Pain". There is no real scale that matters except the one in your nerve endings. When it hurts badly it just hurts that bad. I wish that it were better for you.

I have found Cymbalta to be the first depression med that actually worked for me and it even helped the fibro-myalgia stuff as well. I really needed help and it came through for me. So, I'm really grateful for it.

I should think the point of these forums is to let it all hang out when the pain is overwhelming and just tell someone else how bad it is. It doesn't matter what anyone thinks or not, ultimately, you just need the relief of saying "the pain in wringing me out and jumping on my last nerve with hobnail boots and I'm contemplating acts of desperation and cookies! So somebody HELP ME!!!!!!!!!!!!!!!!!!!!!!!!!!!!!!" That was just in case you needed an example of how to stop being heroic about your pain. No one with RA should ever apologize about complaining of pain - that is an enormously painful inflammatory process!!!

I have found that "contstructive complaining" can be helpful. Sometimes it is good to be the "squeeky wheel that gets the grease". In a general sense we are taught, appropriately, not to go around complaining about our troubles to everyone. However, when you have a chronic, inflammatory illness that is excruciating, that is a different deal. I don't know who all is involved in your medical care but if there is someone who is a case worker or something they may need to see if they can help you locate help to get the RA med you can't afford. Along the way I lost any sense of embarrassment about seeking help for myself. No one else can advocate for me like me. I'm the one who has to speak up because no one can get in my skin and really know what its like for me. ALSO, I discovered that asking often gets me help; I lose nothing by asking and sometimes gain what I need or want.

OK, that was my 2 cents worth. I've been in pain a long time and I can truthfully say that compared to your RA I feel like a small-timer where pain in concerned , But ALL pain hurts, fatigues and robs us of life. I am very sorry this is happening to you. I hope that something turns your way soon and lifts your spirits.

Gentle Hugs,

Leslie and the Pixies
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  #4  
Old Sep 22, 2008, 05:53 AM
cantstopcrying's Avatar
cantstopcrying cantstopcrying is offline
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Member Since: Sep 2008
Location: MI
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(((((freewill & multipixies9))))) You guys just made me cry--in a good way, though. Thank you so much! You're right, just having somewhere to let it all hang out does help. I really appreciate you taking the time to help. Oh, speaking of cranberry--yesterday I bought 64 oz of cranraspberry and 64 oz regular and cranberry pills and loaded--started drinking right from the jar! I appreciate all the hugs and care.
__________________
____________________________________
"We can't talk at the same time! It doesn't work like that! I talk, you talk, I talk, you talk!!" ~ Peanut
CMT, RA, DJD--I feel like alphabet soup!
  #5  
Old Sep 23, 2008, 08:43 AM
vett55 vett55 is offline
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Member Since: Aug 2008
Location: Ok, USA
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i wish i could give you a gentle hug until the pain went away, i have crps/rsd and i know how it feels to hurt so badly my thoughts are with you. stan
  #6  
Old Sep 23, 2008, 08:48 AM
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cantstopcrying cantstopcrying is offline
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Member Since: Sep 2008
Location: MI
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Thank you, Stan. I wish I just be numb, but function. I was thinking the other day of what it felt like before I became sore all the time. That was probably 15-16 years ago. I was thinner, happier, prettier, not depressed, carefree. Oh well, them days is gone and new days is here!
__________________
____________________________________
"We can't talk at the same time! It doesn't work like that! I talk, you talk, I talk, you talk!!" ~ Peanut
CMT, RA, DJD--I feel like alphabet soup!
  #7  
Old Sep 24, 2008, 12:48 PM
cantstopcrying's Avatar
cantstopcrying cantstopcrying is offline
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Member Since: Sep 2008
Location: MI
Posts: 5,361
Update--UTI is gone, thank GOD! I am sooo sick of cranberry juice! Gimme a diet Coke, quick!! Thank you all for your kind and gentle hugs
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"We can't talk at the same time! It doesn't work like that! I talk, you talk, I talk, you talk!!" ~ Peanut
CMT, RA, DJD--I feel like alphabet soup!
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