advice on pain and dialysis and ra, and,and, and....?

[gothiclovemonkey]

I wasnt sure if i should put this here or in dialysis discussion...
I need some advice or something....

Recently, I have been diagnosed with RA, and we are still trying to find a med that will work for me, since i have other health issues that prevent me from taking half of the available meds out there...
I am in so much pain, its ridiculous, and here lately it has really been effecting every single aspect of my life, including dialysis...
I know that I havent exactly been the ideal patient since starting dialysis, BUT i am trying, and I do think that should count for something?! But, ive been having to cut treatment short nearly every single treatment, mostly because NOONE will listen to me. I start cramping, they think its from taking fluid off, but it isnt.. I cramp like this at home too and the docts are still trying to figure this out. So they try to give me fluids, i tell them to do a little, just in case but if that doesnt work, i dont want to end up overloaded. and they, of course, wont let me stand up because they dont want to have to stand there and watch me. So, really my only choice is ama and getting off just so i can stand up to relieve the cramping.
Which as most of you know, is a completely terrible idea... not to mention, Ill never get a transplant at this rate, because im "non-compliant" due to this.

What the heck am I supposed to do? These cramps are horrible, to the point I cant control myself, and start crying - sometimes screaming in pain, to which the techs and nurses 'politely' tell me to calm down and stop yelling......... ('scuse me? but its not like i can help it, you try having mutiple  cramps at one time, and feel like its literally breaking your bones!)
I kid you not, when it happens its typically in more than one area, leg, foot, arm, chest, etc

I obviously cant continue to do this, we know what could happen. my labs are not looking too great (although i have seen them worse!) and i feel like crap most of the time.
I really dont know what to do.
there has to be something that can help me get through the treatments at least?!

I have an appointment on the 11th of Oct. I really hope he can do something, but im scared.  i dont want to die because of this crap. and i certainly hate being in pain, but id suffer at home, if i could just have something to get my through dialysis!

any advice?!?!?!?!

[hillary]

Jennifer, I read your post and I can really relate. I get extremely severe cramps in my thighs, calves and feet overnight that do make me cry and scream in pain. When I get them while on the machine, the first thing they want to do is stop pulling fluids and adding more back to me. I never want more because I'm afraid of overload as well. Anyway, when they stop pulling, the cramps just do not miraculously go away. I had a huge fight with a tech the other day because he insisted there was no way I was continuing to have cramps because they were pulling nothing. I ripped him 10 new ones, screaming at him about how he knows absolutely nothing about ESRD, and asked him to explain to me why I get cramps all day and night sometimes when I'm not at dialysis and no fluids have been pulled?? He could not answer this of course. It really makes me angry that the people who are supposed to be your advocates and supposed to be understanding really know nothing at all about your illness. Sorry that I do not have any advice for you, just an empathetic ear.

[dialysis.sucks]

I've mentioned this on another post, but it might be worth a shot in this instance as well. I can't sit still for 3 hours straight, even reclined. Heck even when the Niners are on TV  I need to get up and move around. With that said what I've found is if I get a shot of benadryl (diphenhydramine) {I prefer directly into my line) at the beginning of dialysis and at the middle point, 1.5 hours in... I sleep all the way through. I completely avoid cramping and because Im asleep I avoid the constant looking out the window at what a beautiful day it is while being only 5 miles from the Beach... Now that's just what works for me. Ask your doctor, but even Davita carries the Benadryl in liquid form. A LOT of patients are on it. Next would be Norco from there. 10/325 is what I take because I want the crappy feelings and pain to go away quickly, but don't want to kill my liver with too much Acetaminophen. It took me 7 years so far to figure a lot of this out, unfortunately I had to do a lot of it on my own. I wish you the best in your search to find a way to deal with this Hopefully this might put you on the right direction.

[obsidianom]

Have you tried Cymbalta? It is an antidepressant that is now FDA approved for pain such as athritis. It would not be an issue with kidney disease and dialysis. It is fairly safe and may reduce the spams as it calms the nervous system also. Ask your nephrologist or rheumatologist about it.  The other option is Lyrica which is also approved for pain and nerve issues.

[Rerun]

Drink a cup of Tonic Water before dialysis or during.....  It has Quinine which is a natural muscle relaxer.

Just try it.

[cassandra]

I would like to tip increasing your bicarbonate on your machine too, and your sodium.

Good luck hon,

Love, Cas

[bjp81757]

I use Enbrel for arthritis. There a several biologics on the market now that work well for RA. Talk to your Rhuematologist about them.

[gothiclovemonkey]

I use Enbrel for arthritis. There a several biologics on the market now that work well for RA. Talk to your Rhuematologist about them.

i was on that for a while, it wasnt doing a thing, so they wanted me to switch to humira, which i still plan to, but ive had some surgeries, proceedures, and other crap come up they wont let me start it yet. this has been since april... one thing after another so im not being treated for my ra at alll right now