up with-pain

[Jena]

good morning,

difficult child fell asleep last night by 2 and than i was up with pain for the next hour. Past year it's been getting worse.

dr. thinks it's rheumatoid arthritis, we are just waiting for my health insurance to kick in before we go doing blood work to confirm. my joints will swell so badly, it starts in my feet makes it's way up to my neck.

joints in my hands last night were so swollen i had to pop 4 motrin and use ice packs to bring it down and kept hands elevated because it was so painful. it's funny too always on left side of body than right side.

we took kids to coney island other day, and two hours into it i was done ankles totally swollen, knees just sat on a bench elevated feet.

i've been looking into some at home remedies assuming this is what it is till i confirm with-dr. just says hot showers, fish oil can help which i already take. anyone else use any remedies??

 

[TerryJ2]

Hi Jena, I will ask my husband.

I am so sorry! I would be icing, too, although if it's RH, icing doesn't always help and may sometimes make it worse. It's not like regular arthritis; it's a strange animal.

Blood tests will definitely help.

I have several friends who cut out wheat, and were able to stop all their painkillers. I know we harp on it a lot for our Aspie kids on the General Board, but it works for other things, too.

 

[Jena]

hey,

thanks, that's an idea. my dr. said it's triggered by stress also. probably due to lack of sleep and difficult child lately. this morning i got up in pain. trying to wait it out to see where i can take difficult child today on her day off. umm i feel old suddenly lol. i need the blood work yet we'd rather not lay out more money and trying to wait out insurance app to go thru.

 

[Mattsmom277]

I know that my aunt spoke to her doctor when it got to a point that it affected her sleep. I hope that your insurance is in place soon.

I know she used to do some things to ease things. Warm baths helped, the feet elevated thing helped. She used to have me help her with medicated rubs such as IcyHot and A535 etc. I know myself with MS that when the ache is deep and lingering and keeping me up, the medicated rubs are so soothing.

I forget the supplements names (Glucosomine and something or other, google would come up with it quickly) but they are said to be quite beneficial for a lot of people.

 

[Mamaof5]

Try glucosamine (sp?). http://www.troohealthcare.com/joint...tin-100mg-msm-50mg-vitamin-c-60-tabs-739.html

 

[svengandhi]

I have had RA since I was 18 (more than 30 years now). Please have them check for Lyme disease because it's relatively rare for RA to be diagnosed in people who are past 30. Not impossible or unheard of but far less likely than in people between 18 and 26.

I have been through many flares and remissions over the past 30+ years. I took Naproxen when it was an experimental drug back in the late '70's. It helped my menstrual cramps more than my RA, which was apparently a common finding! I've taken gold shots in the butt and later on, in the arm. I've had courses of prednisone, methotrexate, sulfa drugs, penacillamine and many others that I can't recall. I have been fortunate in that my last flare in 2006 was beaten into submission by gold and I didn't have to try Remicade or Humera, etc.

Once I went to a nutritionist and she told me to give up members of the nightshade family. I had no problems with mushrooms (I tell waiters I'm allergic to them because I hate them so muc) but I couldn't give up tomatoes.

I have never found any herbal supplements or the like to be as effective as the medications I have taken. I do try to take fish oil tablets but they are so huge and give me reflux so I often "forget." Personally, I wouldn't waste my money on any of the supplements, etc. I spent plenty over the years and nothing helped.

I do highly recommend starting every morning with a shower as hot as you can stand it for about 10 minutes, letting the water hit your joints. Don't forget your hands - I keep mine under the water and flex and release them. It helps keep them more limber for writing and typing. I use thicker pens and sometimes sleep with a wrist brace though I haven't done that for quite some time.

When my flares were their worst, I used to keep a diary of symptoms for the doctor.

I have had my knees drained many times, also my ankles (not as much) and even my elbow once. I have been very lucky - when I was first diagnosed, I was told that I would be in a wheelchair by age 25, I am twice that and still walking.

Good luck and please feel free to ask any other questions you have.

 

[Star*]

Jena,

See what marriage does to you!? (roflm diamond ring off) -throw it my way.to meeee. Okay if you saw MY hands this morning you would SWEAR that I have full blown rheumatoid or spasms or that I was a contortionist. Last night I went to sleep as flexible as a bendy straw and then this morning I wake up and I can't even zip my own pants, or hold toilet paper, or grab a cup - let alone open the cabinet - my hands were completely contorted. My (oh why list it nearly everything) aches and my joints are sore yadda yadda =yadda. I'm tired, and there's no rhyme or reason for it. I went to Doctor A. I have full blown rheumatoid - puts me on Celebrex. Then I think they banned it. I go to Dr. B. He says I don't have it, and offers a ritual of herbs and supplements. Neither made me feel better. I stretch, move even though it hurts like Hades and in about an hour I'm zippin my own pants - and the 'show' is over for everyone. Good thing I can't turn the knob on the door - Know what I mean?? lol. ahem. I wish I could tell you it's a food trigger, but for me? It seems to be (and don't laugh) ceiling fans, air conditioners, bad shoes, unusual movements that I was unaware I did - like bending over picking strawberries all day or moving boxes and not thinking I couldn't do it....Sometimes it happens, sometimes it doesn't but when it does? It hurts, and for me moving seems to be the best medicine.

I watched my Mother and Grandmother suffer with both Osteo and Rheumatoid most of their lives. My Mother is a ballroom dancer who had a cruciate ligamate replaced and a hip socket ground down, and something done to it and is back dancing after a year sabatical. Her suggestion? Take care of yourself always. She said if you don't keep moving even if it hurts? Nothing else you take is going to help. Water aerobics helps a lot - you're weightless and moving. She takes Move-Free supplement and it helps. She takes Boniva once a month. drink plenty of water too - and get on a diet that is healthy and a good mutli vitamin - not a crustly bad cheapo vitamin either - they are NOT all the same. Believe me.

Sorry you are hurting - OH and this miracle in a bottle I love so much? STOP PAIN - it's natural - wouldn't be without it - comes in a roll on or a spray and I have both - it gets a teentsy bit hot - but so worth it. About 10.00 a bottle but again - SO worth it. Blue and white bottle with a stop sign on it and worth EVERY SINGLE NICKLE. Sold at most Rite Aids.

Gentle Hugs......

 

[Josie]

I agree to look into the Lyme Disease. Didn't you have a positive test a few weeks ago that another doctor said wasn't Lyme? You should know there is a huge controversy over Lyme treatment. Almost everyone agrees the tests are not always accurate. Some doctors think false positives are the usual problem while others think false negatives are a big problem. Some think a few weeks of antibiotics will cure you and you are left with Post Lyme Syndrome if you still have symptoms while others think you can give more antibiotics and see more improvement. You need to figure out for yourself which position you will take and not just blindly trust your doctor. Whatever you decide, at least you will have made an informed decision.

 

[Mamaof5]

You have to think about carpel tunnel syndrome as well and possible an injured Brachial Plexus (the set of nerves that start at the base of the skull, down the spine, up around the blades and shoulders and branches off into nerve bundles like the carpel tunnel, elbow and even the trimingal nerve in the face). When you injur the brachial plexus you can have many many different symptoms. Some resemble RA, lyme disease and even IBS and fibro symptoms. It can drain you, exhaust you and run you into the ground with a brachial plexus injury. A captured nerve can hurt the whole body too (gets stuck between the joint or captured in a tunnel like the carpel tunnel or wrist tunnel).

 

[Star*]

yeah.........what Mamaof5 said.....your plexusisamexus......

 

[Jena]

mamaof5 wow you have your hands full, huh...?? thanks for the link and carpal tunnel syndrome good call yet dr said not that.

sveng wow good for you. that's huge that the dr. said that and look at you!! that's awesome.... the hot showers are great you are soo right. yet funny thing is if i'm in the heat i swell up like a balloon. what is the draining like?? my knees are soo bad. also do you get nodules?? i have them now on my hands and also my arms the inside part. got them on my feet the other night. i heard sometimes they stay and sometimes they go away.

 

[Jena]

Star

thanks and that's very cool about your mom a ballroom dancer, so that is where you get your talents from??

i will def. look for that btl. as far as doctors with diff diagnosis's umm not shocking at all!!!!! today was a good day for me, except when i was riding horse today my feet swelled up and fell out of stirrups and i couldn't get them back in lol. guys like put your feet back in,, umm i can't lol.

for me it's stress. i could be having my mini difficult child meltdown that yes i do in the privacy of my bathroom. you know how i love to escape there on the floor. i even moved up in the world and now have a tiny stool in bathroom i sit on lol. as soon as i stress i begin to blow up. you could attach a string to my **** and float me!!

thanks!!!!

 

[svengandhi]

Jena -

I haven't had nodules. I am not sure why, but I'm glad. The draining is not so bad. They numb up the area with a shot of lidocaine and insert a needle to take out the fluid. Then, they usually put in a dose of cortisone to help keep the swelling down. I can tell when I need a draining because the joint, usually the knee, gets swollen and hot to the touch.

I can't take the heat like I used to. This summer was very bad - the walk from Penn Station to my office was horrific many days. However, it's the cold that really gets to me, I hate it. My dream is to leave NY and go someplace where the only snow is on TV.

As for the feet swelling, try to lie down with them elevated above the level of your heart.

 

[TerryJ2]

I'll second the ideas for water aerobics and a test for Lyme disease.

Still, no matter what your diagnosis ends up being, you've already pinpointed the fact that stress is a factor. Stress can bring on pretty much anything, or make it that much worse.

Best of luck!

 

[DammitJanet]

There is also a Non- ana positive RA or something like that. Or it just might be another auto-immune disorder. I once thought mine could be lupus but I dont have all the symptoms there either. My knees are horrendous. Now my fingers are going to the dump. This has just started in the past 9 months or so. Before that they were ok. I did have an ulner nerve impingement but we knew where that came from.

Billy has psoriatic arthritis which is RA with psoriasis. He is on methotrexate and something else I cant remember.

I have done the knee draining, the arthroscopic knee surgeries on both knees and had cortisone shots in various places in my body. I have also had halogyn shots in both knees 3 times. So much fun!

 

[Jena]

oh man janet the joys of growing old?? young?? maturing?? becoming wiser?? sheesh......what can we call all this fun *** we gotta go thru?????????????????

 

[TerryJ2]

So when does your health ins kick in? I'm just chomping at the bit (excuse the expression) to get that bloodwork done.

 

[DammitJanet]

If you have RA it is actually better. The medications can actually help stop it or reverse it. Im stuck. Mine is degenerating at an alarming rate and there is diddly squat anyone can do. I keep going to the doctor and they do nothing but increase my medications.

That does nothing but cause arguments and grief in my family. No one at my home believes I am actually as sick or disabled as I let on because if I was, surely to god, I would be getting medicine besides pain medications and psychiatric drugs. So that must mean it is all in my head and I am just a junkie. It has gotten so much worse here for me since I got started on methadone...the drug they give to heroin addicts. Sigh. That just gave my family the ammo they needed to really hit me where it hurts.

So now, I have to fight that war to attempt to do what little bit I can do not listen to all the complaining about how I am a lazy POS who doesnt understand what it is like for people who really work and hurt from a long day at work. What garbage.

 

[Star*]

OOh Jena.....

Riding Horse with RA???? NOT GOOD. Bouny Bouncy Bouncy Bouncy Fun Fun Fun Fun Fun? (Maybe for Tiggers but NOT for RA patients) AND if you are having swelling of the lower extremities? Dangling your legs for ANY period of time, or sitting without taking breaks every 15 minutes WILL CAUSE YOU TO SWELL. Typing without taking breaks every 15 minutes? Causes swelling and carpal tunnel. Sitting in a non-certified task chair - or CHEAPO ElCRAPPIeO desk chair? NOT approved for periods of certain times? Causes back pain, arm pain, swelling, neck pain, eye pain....shoulder pain. Check into a REAL office supply store and see what they recommend for the amount of time you spend at a computer terminal. Does your chair have arm rests? Are they padded? Are your feet slightly elevated at an angle or do they dangle? GET THEM UP!!!!! A lot of times just putting a phone book under them will eliminate that cut off under your thighs. I have a $300 task chair. It has lumbar support, arm support, butt support - this is a very nice chair. People have often sat in it at work and said "OMG where did you get this?" I told my old boss that I HAD to have it. He freaked out 10 years ago - but I was worth it. I also had a foot rest angled - but I lost it in the move. VERY IMPORTANT. When I got the new job I tried to get a new task chair and elCHEAPEO said no dice. So I took lots of breaks. - Had he paid for a decent chair? vs. the breaks I took - in three years he could have come out WAYYYYYY farther ahead.

Also how high is your monitor? I'm tall - so my monitor is up on a platform. These are all things we don't realize that contribute. My mouse has a gelled wrist pad, so does my 10key and my keyboard. If I'm going 'marathon' shopping? I take 2 ibupropin BEFORE I go 30 minutes prior. I have muscle relaxing exercises, and I have the new way of life and have lost 130 lbs -----helped immensely. The best water weight loss pill for me? Aldactone. Differs from person to person. Without it? My leg swells up like a stump. Don't have fibroids.....don't have heart problems.....no reason for it - just does. Also I have Raynauds. Check that out on Google. It's a PITA. But a lot of people with RA also have co-morbids of auto immune diseases. (so I'm told) - mamaof5 is extremely knowledgeable, you can double check with her - the woman is medical incredible in my book! Everything she has told me has been aces. Even that I am adorable ----I um......made that last part up.

Hope you are feeling better
I was going to say GET OFF THE HORSE.....but then that sounds like you're buckin' for methadone......so I'll just say -no more horseback riding.
Hugs
Star
(oh I know - she ain't right, she aint RIGHT)

 

[Jena]

Star

your are funny lol. yup everything you said is right yet i am an ODD mom and umm well not be taking your no more riding horses advice!! riding a horse even though the swelling is my fix, it makes me feel like nothing else can make me feel and soo worth the pain that follows.

i cant' tell you how many times this week i just flashbacked to that day on that horse and how it made me smile. i'm looking to head back to screw up my body again next weekend when difficult child is with her dad. and sounds like your set up well with-your chair and all your other gadgets. good 4 u! me, umm not at all but u already knew that lol. i sit ontop of my bed with-my labtop on it and lean over. yup bad, bad, bad..........

and mamaof 5 sounds great!!!