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Posted 7/2/2008 12:01 AM (GMT 0)
hi everybody...good to see your post, bear, very exciting to see your pretty green post, erin.

a couple of months ago, i injured my knee in a very minimal way but it got screwed up quite a bit and i have been trying to walk on a rubberized running track and doing the swimming too. also working on some poetry. am very beat and think it has been the pain. my doc gave me this tramdol stuff (50 mg) which i will use very sparingly and try to use it just at night. the tens unit has really helped with the post shingles pain...but the darn old knee keeps acting up. will be seeing a physical therapist soon for instructions on possible use of the tens unit for my knee. am also using voltaren gel on my knee.

i have rice krispie knees...snap, crackle and pop.

yally...thanks for your great email. would you please send me your email address or include it on a post so i can respond? i have a cheapie computer and it does not get me the email address.

well so long everybody!!!!!!!!!!
Posted 7/3/2008 11:52 PM (GMT 0)
Okay, what brilliant pencil pusher at some insurance company decided it was a good idea to put PCPs in charge of the health care of people with chronic illnesses? If they really need someone to decide if you are really sick enough to need to see a doctor they can pay some teenage minimum wage to screen people.
I went to see my new PCP today her brilliant suggestion was that I need to get allergy shots-She made this brilliant suggestion right after I told her I was on two immune suppressent drugs. When I pointed out (quite politely I might add) that it was counterindicated she said "I still want to send you to an allergist because they can do skin tests to find out what your allergic to so you can avoid it."
What part of immune suppressent drugs did she not understand! I'm not giving up my arthritis meds for six weeks or more to find out I'm allergic to tree pollin-which I already know-how am I supposed to avoid that go live in the antarctic.
With a little more guidance from me we decided I was going to take singulair (I can't take antihystimens).
Although I have researched this drug as much as possible and went to the appointment wanting to get a script for singulair I am almost as afraid to take the first dose of Singulair as I was to take the methotrexate but I just took it so hopefully it will work and no nasty side effects.
Thank you for letting me rant-I had specifically called my rhuematologist for specific recommendations for a PCP so I would get one that had treated an RA patient before-none of them were taking new patients so I got this one instead.
Oh, everyone enjoy the fourth.
Sj
Posted 7/4/2008 10:12 AM (GMT 0)

My Gosh, Jody.  With all you have going on and you still remember my birthday...?!  Yup, 55 this month and still smokin' hot.  How is your mom?  She is in my daily thoughts and prayers.

We leave for the lake today for my family reunion and return on Sunday morning for the tail end of hubby's family reunion.  He's being a trooper, bag and all, packed to go.  He knows how much this means to me.  I'm so happy to get out of town for a bit.

Happy Independence From The British Day (Bear, hee hee)

Boo 

Posted 7/4/2008 1:41 PM (GMT 0)
sjkly...i am a "very allergic" person and have been taking singulair for years and believe it has helped me a lot. the only known side effect is headaches but you might coincidentally get a headache so really give the medicine a chance. it works at the root of the problem with all those t-cells or whatever they are acting up.

i guess my knee got bad because i walked up a bunch of stairs at the mall. i am supposed to walk but guess it was too much.

the insurance industry is the biggest lobby to congress and they seem to wield great power.

happy 4th and peace to all of us on the planet.

Post Edited (Joan M) : 7/4/2008 7:44:16 AM (GMT-6)

Posted 7/4/2008 1:53 PM (GMT 0)
Joan, I took singulair for the first time last night-I know it takes a while to be really effective but I do think its going to work. I am a little amazed this is the first time I have ever found a non steroid allergy medication that I could tolerate at all. I did not get a headache but did have a little trouble falling asleep. My doc also increased my flonase to twice a day so hopefully I will get rid of some of this allergy crud soon.
The not so good thing is they weighed me in the doctors office and I lost 9 lbs in the six weeks since I saw my rhuemy. I see her again on Monday-between now and then I get to eat everything I want. (which if I wanted to eat I would not have lost 9 lbs)... My main goal right now is to not be taken off the plaquinil-It is nice though to know that I can eat whatever I want at the 4th of July parties and not feel guilty.
Everyone enjoy their holiday.
Sj
Posted 7/4/2008 2:25 PM (GMT 0)

Happy Fourth Everyone!

Nice and quiet on the homefront this morning...no little ones today, even got to sleep in a bit..Thanks to all of you for your thoughts and prayers for mom, she has good days and bad it seems, but guess that it to be expected with all she's been through.  Eating seems to be kind of touchy for her, still finding what foods are ok, and which will cause her some problems.  I imagine her body will take time to adjust to everything.All in all, she is amazing though.  Boo, of course I remember your birthday! More toward the end of the month though, isn't it?  Ducky's too?  Yally made all those cool cyber-birthday cakes lol...wish I could do all that stuff she does with al the cool colors!  Yally, how are you, did baby girl leave for her trip? Anyway, Boo, have a great time at the lake dear, will e-mail you when you get back.

Sj, I'm on Singular, too, have been for many years. I can't take most of the regular anti-histamines, they make me too jittery, and just like Joan said, my doc told me that singular works differently.  I've never had a problem with it.  Use flonase too( or let's just say I'm supposed to), and in January the rhuemy added allegra, for my own personal allergy cocktail.  I hate taking all of these, but must say I'm much better than before, and haven't had to use an antibiotic for sinsus infection since.  That is some kind of record for me! In Florida mold and mildew is always a big problem, plus there is ALWAYS something in bloom here.....allergy nightmare central.  Ah yes, Joan is so right about the wonderful insurance industry...one of my biggest pet peeves.  Fought with them for years over coverage for my son's needs.  They won't cover the great new technology to help keep his diabetes under good control, but they will cover him later if he has kidney, eye, or circulation complications  ughhhhh. Oh well...that's a whole other soap-box.

Going to try and get to the grocery store before the rest of the city decides to go shopping....then off to a cook-out at some friends.  Will be nice to actually go somewhere instead of having the whole gang her for a change.

Have wonderful holiday all.....Love, Jody

Posted 7/4/2008 4:38 PM (GMT 0)
HAPPY 4th of  JULY!!! and thank you to all of our members here, especially you our dear Ducky, who serve in the armed forces, military, national & local security, marines, officers, firemen, emergency response persons and to all those who have risked their lives helping & volunteering their time to help the many devastations, both natural & man-caused, that have occured here in the states & abroad over the past few years.  those are whom we thank for our independence each day.

 

sj....an allergist? hmmm, ya' know what, take the doc's referel and JUST DON'T GO. tee hee hee. but so you know, if your allergies are quite severe, the shots can be OK as long as they are not "live".  personally? i wouldn't screw with any shots either.  our immune systems are not the normal joe's & i feel it can go awry when we start to introduce foreign vaccines. especially when it's not "CRUCIAL" for survival.

so GOOD LUCK!  i hope this doesn't turn out to be a pain in the arse & i hope you can form a compatable relationship witht he Dr.

 

ok people...here's what the old erin is doing to "remedy" the RA:

i took my drunk raisins. so today is my 3rd treatment.  THEY ARE NOT BAD!!!!!!!!!!!!!!  they don't taste like crap! (nor Gin either).

i have been on 30C X6pillules 4 times/day of belladonna for inflammation & intestinal colic (Crohns)

CorOmega Fish oil 2.5G X4/day

800mg CurcuminX4/day

Gas Crisis tea for the Crohns & abdominal pain

 

hah! well...whatever right!?!

i saw my pain management doc yesterday. so we've upped the oxycodone 40mg to 3 times/day & dilaudid4mg X4/day.

the joint pain has really increased since i no longer can use prednisone...stinks but i ain't riskin' going psychotic again any time soon.

my painting has been going great & i've struck genius with an idea for a showing. it's in the works...so in about a few months i'll make a gallery online too so i can show you folks here!

 

ciao ciao

love you all

erin

Posted 7/4/2008 7:29 PM (GMT 0)
Erin, nice to hear from you. It's wonderful that you're painting please do share the pictures when you're ready. A friend of mine has tried the gin soaked raisins for RA and she swears they work so hopefully they will work for you.
I plan on seeing the allergist if the singulair doesn't help-even if my PCPs recommendations were poorly informed it doesn't mean the allergist has to be an idiot-it is possible he could think of something else to provide symptom relief. My rhuemy would never let me do allergy shots my system is already whacky enough. I am hoping though that she will call the original doc she wanted me to see and get him to make an exception for me then I'll have a decent PCP.
Jody, my last PCP talked me into trying allegra by saying it won't cause you to be jittery or have little balls of energy crawling around under your skin-its so safe airline pilots can take it when they fly. Lets just say its a good thing I am not a pilot. 36 hours latter I was still wanting to claw my skin off and my house had never been so clean.
So far I'm okay with the singulair.
Posted 7/5/2008 1:56 PM (GMT 0)
moanin everyone....... soooooo many posts to catch up on!

 

sj sounds like you got a winner for a doc?!  I think you need to run fast out thta door!

 

erin great to read your post!  hugs to ya babs

 

Jody jody jody!  sorry been mia - yep sent my baby off yesterrday morning and she wont arrive to India til about 1 pm today!

she is on her final flight from Amsterdam to India and it is over 9 hours long-  she lands in India at 1030 pm their time.  between the

18 hours of fly time and like ......7 hours in layovers it will take her over a day to arrive!

mom still doing well?  so when we redoing the bday party?  did you ather for the forth? 

 

ducky how was the first week?  hope the peps are friendly and the job better than just a job.

 

joan i will send you another email as soon as i get off hw!

 

m23 on vacation?  cant recall..... i know camama is back from her trip and enjoying cali i am certain

boo sounds like she will have a great weekend too

 

as for me- i am finally feeling the effects of no meds.... i hurt soooooooooo bad i guess i finally allowed myself to hurt aybe?  been so busy?

arms and legs are just screaming.  have so much to do beofre tomorrow.  i had my carpets cleaned professionally on thursday and the machine broke

and the guy has to cme back an my house is still upside down. 

 

well even y elbows are hurting tryong to type not just hands so i best be going.  hope something makes me feel human again.  hey i slept til 930! i NEVER sleep past 6!

Posted 7/5/2008 5:32 PM (GMT 0)
good for you yally...i am sure you looked like the fame sleeping beauty tucked away in your bed.

well the good news is that i don't have the polymyalgsia rheumatica (however you spell it) do still show a vitamin d deficiency. I think the voltaren gel helps but I am very tired and just ate and need to nap and do 1000 things of which i have forgotten 999 of them.

so long gang!
Posted 7/7/2008 2:11 PM (GMT 0)

Gin soaked raisins? where do you get these??? Are we talking raisin raisins?? :-) Well, count me in!! I will try anything to get rid of this inflammation that doesn't involve another pill or injection! I had to give up the Enbrel and now back on it and just can't seem to get my flare back under control. Normally the Enbrel kicks back in right away..two injections later and still yucky joint pain in the hips and knees.

My daughter has allergies and we use the Allegra for her..but Sj..I wouldn't go for the allergy shots either..I agree your doctor is a bit whacky.  My husband went through all of the allergy testing and he ended up with the same medication as my daughter.  I'm going to agree with Erin on this one.

Yally..no not on any official vacation.(I wish)Just never ending housework and I'm trying to decide on a color to paint the inside of my house.  It has been close to four years of the same yellow so it is time for a change.  I just can't seem to decide on a color.

Jody..I'm glad your mom is continuing to heal, and that you had a restful holiday, you deserve it!!

Have a great Monday everyone

Posted 7/7/2008 10:01 PM (GMT 0)
I may have very bad luck with PCPs but I have the worlds best rhuemy. I went to her office today and her plan for the day was for me to cut back to one plaq a day and then if that went well to stop taking it. I asked "Do we have to do that?" She gave me the long version of the reminder lecture about plaq and eye problems and said that as long as I get my eye exams I can stay on the two tablets of plaq a day. (I love plaq).
Momto3, You make your own gin soaked raisins. Take a bunch of your favorite raisins and soak them for a while (I think its like a week but you would have to ask Erin for specifics) in your favorite gin. I don't know how many you are supposed to eat. As for the allergy shots if I were going to let people poke me with needles I think I would opt for the Enbrel rather than the tree pollin. Luckily the Singulair, flonase and nasalcrom seem to be helping (I am now officially on more meds to treat the allergies than the arthritis).
Posted 7/7/2008 10:20 PM (GMT 0)

Sj...I agree about the poking..who needs more needles eyes My husband also has the flonase and it works really well if you take it on a consistent basis. I think if I had to take any more shots, it would send me over the edge!! I'm up to two a week and that is my limit! Sorry to hear you have to give up your the plaq...but I will admit I have noticed a difference in my vision since I have been taking it and not for the better.  At my next appointment I will have to taper as well..good luck to you!!

Okay, I'm ready to try to the raisins..I can't seem to get my flare under control and I'm having miserable joint pain today, even after starting back on the Enbrel.  I have two preds left from my husband and tomorrow will take those.  I guess I will have to call the rheumy and tell them I'm in pain and I need help.  My mil had some pain pills over the weekend and they seem to help. In a bit I have to muster up the energy to take my daughter to cake decorating class, we are learning to decorate cakes, and hopefully my hands will cooperate!

I hate RA mad

Posted 7/8/2008 12:20 AM (GMT 0)
hi...erin glad to hear that your painting is coming along (told ya so!). got another acceptance for my poetry. am busy with all the stuff i have to do and feel tired often. the weather here is very humid and it knocks me out. have lots of chores to do so will close now.

erin do you have any left-over tubes of voltaren gel? i wil reimburse your expenses for shipping it to me. it is not against the law to mail it because it is not a controlled substance. my medical expenses are bad and everything else is pricey too. just if you have extra, i'd appreciate it.
Posted 7/8/2008 2:59 PM (GMT 0)
wassup'
Joan: really? if so...no sweat! we get quite a few tubes from the medical reps who bring the office lunches & all...so this is fine with me. email me...it's in my HW profile.
i'll be away till friday (going on holiday with my hunny to Ocean Grove NJ!)
ciao!
Posted 7/9/2008 11:51 AM (GMT 0)

I wanted to hop in and give an update.  I was arround for a whild in the winter when the shock of diagnosis hit me and untill the meds kicked in.  I then fell away while I was in school and had good contol over the pain.  I was able to contol it with just plaq and Extra strength TY and 800mg of MO leaving me with just milk 'twinges' in my knuckles, toes and knees.  Awhile ago I added  ALEVE (naproxin solfate) to the mix, but it just kept getting worse.  The 'bad' days kept getting closer together till it was every day.  My pain tolerance got overloaded.  Yesterday my regular doc put me on prednisone and darvacit.  I am back to feeling only minor 'twinges' through the meds.  He suggested I go off the TY and MO and ALEVE while on the script meds.

Annyway, I am back.  I need my support group again.  My whole sorted story is on the thread "increased pain after taking medications" go take a look at it.  You might have some ideas on how to live like this.

WHen I felt good, I wonderd if I had made up the pain that I had been in before.  Had I just overeacted?  Then this happened.  I am NOT overreacting.

I had better get ready for my summer math class.  I'm going to request to work with another student to limit the writing I need to do- typing has made my hands hurt even with the scipt meds I took 2 hours ago. I'm afraid to grip a pencil.

Posted 7/9/2008 4:05 PM (GMT 0)
I wanted to give you an update as to what is happening now.  The doc called and got me into a rheumy on july 15.  He says I can take either ALEVE or MO 800mg for breakthrough pain.  He redduced the prednisone from 40mg 2X a day to 10mg 2X a day per the new rheumy's instructions.  I don't get it- why decrease the antinflamitory?  I feel loopy from the pain meds, in less pain, but still in pain.

My hands feel better typeing, but when I stop, they hurt worse and stiffen up.  My knees just scream.  My back hurts, but that's from being tight from stress of pain. I don't know what to do about this- do you just live with it?  Is there no way to compleatly eliminate the pain in a flair?  I need tools to cope.

Posted 7/10/2008 1:15 PM (GMT 0)
Yesterday was one of the worst days. Even with the darvacet (sp?) Prednisone, and 800mg MO I was still in a lot of pain.  I wouldn't want to know what my day would be like if I didn't have the pain meds.  Last night I went to church, they found me a plush chair to sit in, but by the end of the night felt worse then ever.  The irritation, burning, stabbing pain in every joint was unbearable.  It was even in my neak and jaw that last night.

Today I decided to skip class.  I'm using my voice recognition program to check in, I just want someone to know how I feel.  My husband is caring, and does anything he can, but I can tell that he is frustrated that he can't affect the pain.  I wonder if he Feels I am being a big baby?  I'm not. He says that some people just have lower pain tolerance than others do.  He doesn't understand- I have a high pain tolerance, expecially after living with this condition for awhile.  Every day hurts somewhere, some days more than others.  I still go about my life, survive each day, but when the pain levels reach this high, and stay there this long,anyone's tolerance would be overrun.

I wonder about the type of pain that I have been having.  In the morning, right when I wake up, it feels more like stiffness than pain until I move.  But after a few minutes of being awake it's like my joints "check in" with first a twinge of discomfort, then true sharp pain.  The pain tolerance is higher in the AM, simply because I have had all night in blissfull (medicated) sleep, but as the day wears on, I can take less and less of it- and it doesn't lessen all day.

If I move, it hurts, and increases in pain the more I move.  If I say still, it's still painful, but I go all stiff, so if I flinch it shoots pain though my body, and when I have to move to release the built up pressure of stiffness, It hurst the most.

I have noticed that my veins hurt in my hands and forarms.  They throb, expessially when I have increased pain in my fingers and wrists.  It brings the pain all the way through my elbow.  I have not heard this as a condition associated with RA, do other people get this too?  They are not red or warm to the touch, but when they hurt they seem huge, puffed put, and bright blue.  ( I have VERY fair skin)

Anyway, thanks for letting me rant, the house is waking here, so I need to get to work, such as I can.

Posted 7/10/2008 1:47 PM (GMT 0)
SORRY THINGS ARE SO BAD FOR YOU CHRISTINA!  HOPEFULLY SEEING A RHEUMY DOC WILL HELP,  PAIN MANAGEMENT CAN BE GOOD AT TIMES TOO.  JUST DON'T GIVE UP.  IT CAN TAKE MANY VISITS TO SORT THROUGH THE MESS. MOST OF THE PRIME CARE DOCS CAN'T HANDLE RA OR OSTEOARTHRITIS.

thanks erin, i emailed you with all my information.  hope you get it ok.  your red white and blue post is very pretty and very patriotic.

yally where are you, are you still doing your sleeping beauty thing???  yeah yeah yeah

Post Edited (Joan M) : 7/10/2008 7:52:02 AM (GMT-6)

Posted 7/10/2008 10:03 PM (GMT 0)
Christina, the morning stiffness and pain as you become fatigued (which happens fast when you're stiff and sore) definetly sounds like me during a bad flare. By the way my hands feel the same way when my ELBOWS are swollen. Fluid in my elbows make my hands and wrists hurt everytime I try to move. I hope you get your meds sorted out so you start feeling better soon.
Posted 7/11/2008 1:18 PM (GMT 0)
Good Moanin' everyone.

I am starting to feel like I might survive this.  Yesterday we took a family trip to the gym, where I was able to spend some time in the whirlpool, then go float in the swimming pool, then go back to the whirlpool.  I went back and forth for 2 hours. (the worst part was getting out of the water when gravity 'started working')  It did make me feel better, but by the time I had been home for an hour I was right back to being stiff.  At least it was relief.

Last night I felt good enough to walk down to the end of the drive and watch so my youngest could ride her bike.  I got to sit and talk to a neighbor for a while, and that was great.  I was feeling so isolated.  I also felt good enough to stand up and cook waffles for dinner instead of ordering in like I thought I might have to if I didn't feel any better.

Today- I'm improving.  I was able to shuffle around the house for a bit and get some things picked up before my husband got home from work this AM.  I got a couple dishes washed before my hands decided that they were done.  When I feel up to it I'm going to go make a couple of heat packs (old pair of socks filled with rice and put in the microwave) to use on my hands and knees. (the 2 worst places today)

If I continue to get better I might be able to show up to my exam on Tuesday without being on "the good drugs".  I'm making stupid mistakes because I'm not thinking the math through to the end of the solution- things I could do before I started the script pain killers.

I appreciate all the support that I got here.  It does help to know that I am not alone, and that I have read through your situations and have seen you live through it. Thank you.

Posted 7/11/2008 5:39 PM (GMT 0)
good christina...glad things are a bit better. pain is very isolating and that's why it is good to go to the boards and meet others with similar problems. pain is also distracting and can make you forget what you are doing. the meds can stiffle your thinking too. just do the best you can and hopefully things will improve for you soon.
Posted 7/11/2008 8:54 PM (GMT 0)
Busy Busy Busy!  Joan so sorry i have been not around. 

welcome back christina!  sorry you need our support but so happy you are back! i will try and find a moment to read your other posting on meds and pain i think you called it?

 

anyway so joanie you got a poem published! whoo hoo yeah    and erin is painting me a mona lisa!  such talented people we are!   or shall i rephrase, you are. 

my talent is shopping lol!  but i gotta stop!  i have spent all my monies for now.

 

i wasnt sleeping i doing the tourist thing locally.  we had a young lady up from the carolinas (your way ducky) and we did the buffal niagara falls and niagara on the lake things.  Niagara on the lake is so pretty i just love all the shops!  the girls did the jet boats in the niagara river by the whirlpool.  i guess it was a blast!  i didnt go on it for 2 reasons one it cost and arm and a leg and second i wasnt certain if my arms and legs could do it! lol  anyway been real busy. 

 

i took the humeria and other than complete exhaustion that day which could have been non related i am doing rather well on it. 

 

Hubby is still real ill went back to doctors today and he never does that.  i thought he was doing better but i guess it was all a front for me not to worry.  hope his lungs get better soon. 

 

well heres to a pain free weekend! hahaha i can wish cant i!

 

oh we are taking in an exchange student from italy for an entire year!  i cant believe i am doing this!  crazy no!  a 17 year old boy!  i hope i am not getting into more than i can chew!  i am kinda excited though.  of course he gets your room you know!  sorry and i just redecorated it for you!  girly looking too! hahaha

 

hugs all yally

Posted 7/12/2008 1:27 AM (GMT 0)
Well, we made it to yet another Friday night...thank goodness, maybe I can sleep in tomorrow???  Been a busy week here, like always.  mom is doing better, still no word on whether or not she'll be able to make the trip next Friday or not.  She sees the surgeon on Tuesday, and he will tell her yea or nay.  Don't want her to push herself, but in a way I hope she can go.  The trip is so important to her....she really wants to spend time with my sister and the rest of her family.

Yally!!!  You gave away my room????? Now what am I supposed to do? lol...I guess if it's to a 17 year-old Italian boy I have to understand heehee...reminds me of Boo's cabana boy(wink wink).  Seriously, I think that is great, what an awesome experience for all of you.  Someday, I really will make it to Buffalo, then you'll have to show me all that fun touristy stuff, ok?  So sorry that hubby is still sick..what did the doc tell him?

Hi Christina....I've just been catching up on posts....so haven't read everything you've written....but am so glad that you a feeling a bit better.  This journey we're on is certainly not an easy one, but know that we're all here to give a cyber-shoulder when we can.  Joan is so right, pain is so isolating, knowing there are others out there who understand is a life-saver most days for me.  How old are your kids?

Boo...how are you, dear?  How was the trip to the lake?  Wanted to drop you a line, but it's been one of those kind of weeks.  What can I say?  Hope you're doing ok.

Ducky...how's the job, and the new schedule?    Erin, you back yet?  Going to try and corral the momma kitty and get her in to get spayed.  Found a spay and neuter clinic right near to me, and can get her all taken care of for about $65.00, which is way less than half the price of our regular vet.  Just hope I can get her into the carrier without losing a lot of my skin to her claws!

Mom you around?   How's the summer going?  Thought I read you were out of school now...I really have to go back and catch up on posts....so far behind what everyone has been up to!   Camama  how are things out your way?  Are those horrible fires close to you again?   Sj, you seem to be doing great these days...so glad!

Well, think I'll go and pop in a movie....nice night to curl up with a nice cup of coffee, and maybe some chocolate, or some ice cream, or some cookies......or......hmmmmm 

Have a nice night all,

Hugs, Jody

Post Edited (babyplace) : 7/11/2008 7:30:15 PM (GMT-6)

Posted 7/12/2008 4:06 AM (GMT 0)

Moanin everyone,

Yes, I am still alive!!!!!  I've been without a computer for almost a month.  Going to catch on reading the posts and will write back soon.  Hope all is well.

Raven

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