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Posted 3/3/2011 4:48 PM (GMT 0)
Hello everyone!

I hope today finds all of you feelling well!

I just had to vent alittle bit as I am at my wits end with all of this pain!

Every day I wake up in hopes it will be better... only to find that is is not!

Tuesday I had a pretty good day... got alot of things done that I have not felt like doing.

It was a great feeling but on Wed when I woke up I was miserable. The fatigue and pain was terrible!!!

Is this a normal thing? I have suffered for years with generalized weakness, fatigue and joint pain but nothing like this!

My hat is off to all of you that have suffered for a long time with this painful way of life.

I am suppose to start on plaquenil  to slow the progression but does it help with pain? I am on Mobic and Tramadol and neither one is taking this pain away. Sometimes it helps alittle but never does it completely relieve my pain.

I have noticed that some of you are on neurotin... My brother takes this and he gave me one to try when I was getting no relief and it seemed to help me. It made me feel alittle wierd at first but then it seemed to dull my pain.

I know you shouldn't self medicate or take someone elses medicine but I was desperate for some relief!

Any suggestions on pain management? What works for you???

Thanks in advance for any feedback!

Hugs to all of you!!!!

 

Posted 3/4/2011 5:00 PM (GMT 0)
The million dollar question!!! Plaquinel can be very helpful. it takes a bit to get in your system.

Routine, not overusing your energy when you have it, (good luck i am terrible at that one), sleep quality sleep at night is key, discuss it with your dr. if you are not getting good sleep at night it makes everything worse in the day. Neurotin is for nerve pain, i am not familiar with mobic. Massage and physical therapy help me. The meds that help me the most are ones that deplete my immune system so it isn't over active i guess that is a simple way to put it. methotrexate one time a week and orencia which is an infusion i do one time a month. i don't know where u are with your challenge, and i have several and honestly today i do not have the best attitude.

It sucks learning to live within your limitations. and so many things can trigger what a good or bad day can be. keep a journal to see if you can figure out what some of your triggers are. i know stress can put me over the top. : )

Feeling weak and tired is very defeating. it is ok to give into it. set a timer and take a nap try an hour. get up and do something for 15 minutes. sometimes brushing my teeth and showering seems like a triathlon other days i get by.

Hugs to you, may you find joy even on painful days. even if it is something simple really take it in. : ) I hope today is better for you.
diana
Posted 3/4/2011 9:13 PM (GMT 0)
(((Diana)))

You are so sweet! Thank you for your reply. I am learning so much here from all of the wonderful people! I can so relate to everything you said about the limitations and your advice was wonderful.
It is such a terrible feeling when the fatigue and weakness has a grip on you. I feel guilty for feeling this way and think... Geeze Rhonda, you are so lazy! I get so down on myself and get so tired of complaining about the way that I feel. I have learned to just say I feel ok even when I don't because I don't want to sound like a constant complainer!
I guess as far as the meds go... I will wait to see how the Plaquenil works and ask for something to help me sleep. I have not slept through the night for weeks now. That in and of itself is enough to throw a person off!
But on a lighter note...
This forum and it's members are my saving grace at times!

Thanks again for your advice Diana! I hope you have a great weekend!

Hugs!!!

Rhonda
Posted 3/4/2011 9:22 PM (GMT 0)
I agree, feeling weak is very defeating. It's hard not to get down on yourself when all you can do is lay down on the couch all day...
A good night's sleep is so important! I have been trying a natural formula, Calms Forte, to help me sleep better. I'm not sure if it really works yet lol but I figured it's worth a shot.
I also try to do a few things every day to make myself feel better - even if it takes all day to get them done - I wash myself every day (shower or bath if I can't stand for that long), and do my makeup. Seems a little silly maybe, but I find I have a better attitude about life if I feel like I'm at least presentable.


Kathryn
Posted 3/5/2011 4:31 AM (GMT 0)
I tried all scripts for sleep meds expensive and not very effective for me. Melatonin otc is effective for a lot of people and not expensive.. i would ask dr before doing anything. the drug i take for sleep is more for anxiety but is not as habit forming as most benzodiazapines... it is called Klonapin, there is a generic form the nice thing about it is it helps relax your muscles, your mind a little, I have restless leg and so it helps with that as well. I have found i still get up but even before i was sick to be honest i have never been a good sound sleeper. i still get up but if i pace a little go unload dishes, hug an animal or two. i can go right back to sleep. : )

Schedule is huge for me.. up at the same time if possible and to bed the same time if possible. if i can't sleep i get up for 20 min. go back to bed. my husband reads for about 15 minutes. my eyes hurt too bad lately. I am a prayer, constantly. everytime i wake up and go to sleep. sometimes short or long i pray from things i am thankful for, Gods grace his plan, to praying for my enemies domestic and foreign (military), govt, family and friends.. so this helps my brain relax...

well my dog is by me and is telling me it is time for bed. : ) if you want to talk about someone with real anxiety issues it is our 4 year old lab/rott mix... he is like a wound up little ol man and molly our st bernard complete opposite not a care in the world she is 2 and still plays with toys.

with love and hope thank you all so much for sharing. I wish i could alleviate everyones pain on this web site. i truly believe people want to be productive citizens. and we can be we just need to find out in what way, even if it is in a teeny tiny way.

God bless all of you... Diana
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