RA symptoms-did they start out not so bad | Arthritis Information

Please forgive me, I was a little "off topic" for this particular thread last night.  I was in so much pain and so beside myself that I'd needed to just "write it out" somewhere.   I now recall having  difficulty deciding where to write that note. 

I did fall asleepin a chair (reclined) for about 90 minutes.  That was about it!  I was in too much pain.  I am still weiting for the doc's office to call me back to see if they will agree to pain med increase.

Lovie, thanks for the kind words.  I really have never "told it like it is" for me in a forum, until last night.  I usually am much more concerned with how others are doing, etc.  I am trying to learn to accept some support.  Also trying to learn to be honest about how much pain I am in.  I have often tried to "protect" my husband and/or relatives, as they often feel helpless...I don't want my pain turn into their pain!

My illness came on with extreme fatigue and some intermittent arthritis.  Over the years, my condition has progressed relatively sloly, as it had started 22 years ago.  It has always had me "totally medically disabled" though.  Yet, docs still trying to find out more.

I am in a "bind" as i have GI bleeds with NSAIDs.  I have been on prednisone for a few years now, consisitenly.  (Just 5 mg.  Could use more, but the side-effects are so nasty!)  For several years, I'd just needed short courses of prednisone.

(Some days, I would give an large amount of money for 5-10 days of prednisone!  What a relief.  Yet, it had also started to become very "toxic" for me.  "Had to" get off of as much as I could.)

You are so right, Lovie, I should use as many pain relievers as they'll allow.  I try to use them "sparingly, as I'd like to have them "work" well for me later on, too!  It seems many meds that initially are very helpful, also "burn out" of being helpful.  Has anyone had that experience?

Doctors are still trying to "nail down" the exact diagnosis between lupus, RA, etc.  (In the meantime, I take Plaquenil, morphine, dilaudid, Soma (if needed), coumadin/warfarin and using a topical Ketoprofen/Bupivacaine cream on joints, neck, etc.  Have other meds, too like synthroid, clonazepam, etc.  I am just listing the ones prescribed by the rheumatologist. She did diagnose me with the "Antiphospholipid Antibody Syndrome, as well ;  that is what the Coumadin is for.) 

Each of us here knows how the chronic pain can be.. some days worse than others. 

I'd really like to get a better "handle" on this!  I am tired of all of the pain!  I have tried adding various anticonvulsant meds to also help with the nerve pain.  I cannot tolerate a single one of those!

I have the best rheumy in this area.  I just need to be more patient!

Hope many other board members are pain-free right now!?

I need to go back to my bed... I feel quite ill.

Please take care!

Hopeful, I wish you better times. I don't have any suggestions except to give into the rest and use the whole arsenol to deal with the pain.

Hopeful; This is the one place you don't ever have to be the strong one....and you can be open and honest about how you're feeling on a daily basis without worrying about how your situation will affect others.

I know what you are saying about the Meds. DMARDS are the same way. I haven't had that problem too much with pain meds; but every DMARD treatment I've used over the years eventually wears off. I'll be on something for a year....to three years and slowly but surely it will lose it's effect. We'll add more until that doesn't work anymore then we'll try something new. Sadly for those in our position we just have to accept that as part of the treatment. Don't avoid medication.....or use too little for fear of this happening. When it does happen; they will try another medication instead. Every problem has a solution; it's just finding that's the hard part.

Try real hard to keep that "Hopeful" spirit. It's brought you a long way so far Sweetie. It will continue to be your greatest asset.

Hang in there.

Hello to All!

Please forgive me for not responding earlier!  I have been thinking of you all... and keeping you in my prayers.

I have been struggling with a "relapse!"  Most likely the story of every members' lives!   My doctor did increase the morphine, which has helped some with the generalized pain.  I do not sleep very well when I start an increase in morphine.  Any of these drugs actually give me energy most of the time.  So... I did not sleep for two nights.  I was, at the same time, a zombie.  THe pain was getting better, yet a was cognitively gone!  (Well...mor than usual!)

I did get some sleep, finally, last night.  Just 6 hours though!  I hope I accidentally get 10-12 hours tonight!  (I do not work.) 

My husband and I had been "in the process" of looking at real estate.  I know I should not complain...as we are fortunate that we can look at it.  I am grateful it might be an option, as we had sold our home near the ski areas (the mountains) and have moved in closer to civilization!  We had bought a very small place until we'd decided where we'd wanted to live and whether we'd wanted a single family or a duplex for income, etc. 

He is pushing so hard!  I am saying, "Hey, we do not HAVE to move right now...or even this year!  We are fine right here!  It IS a little small, but it is beautiful.  So... if there's something that we really want and it makes financial sense, then...we can take a look.  Otherwise, just slow down!

I am soooo tired!  I am the one who works ou the details with the realtors, the banker, etc.  So...cool it!  I have been having to rest and then get up, shower, and then go to see "homes."  (While in a relapse.)  I usually do all of the "communicating," etc.  I do not mind...IF I am not in the middle of a relapse!

I'd told him on Sat., that was it for the weekend!  Others can wait!  Thought today would be "restful" and "peaceful."  No can do!  Today, he thinks we need to look at cars.  That was an outright no!  We have 2 vehicles that are just fine!  They are all paid off and have been very well taken care of.  Well...that made the rest of the day "sulkie."  I'd finaly said, "Look, you need to think about chilling on the ideas of spending.    If you want to move so badly, we need every cent we have to handle that transaction!    (He has not been able to adjust to that yet...It's ^:30 PM EST) 

Getting maried brought me more financial security, in some ways.  It has also brought more of a different type of stress.  I am very god at handling money, as I had lived for eight years on my disability pay only!  I had my own apartment, etc.  It was tough...many of you know just how tough!  I did not know how I was going to pay much of anything.  I just took it day by day.  It taught me to appreciate and to respect money.  I was never materialistic.  It taught me that if I can, I need to do a better job of handling our money so we can give more to others.  Seriously.  If I can find a multifamily where the "numbers" are right, I will have mpre money "freed up" to give to those in need.  At least my hubbie and I agree on that.  He just tends to get lost while heading for a goal, aspecially a lon-term goal!  I REALLY, REALLY want to be able to do that.  I am going to make it happen. 

I do know what it's like to not even know if I could buy my meds, food, clothes,anything at all.  My Heavenly Father took care of me.  He did ot "pour" money upon me or anything like that; yet, i'd never lived on the street or in a shelter, etc. 

So..anyway...I guess I was saying... please allow me to rest when I am in a relapse!  He is usually very good about that.  (We have been together for 14 years.)  Lately...maybe it's a "moon phase or something?" 

To anyone having housing and fiancial difficulties due to illness, I send up prayers for you every day.  I know it is so very difficult , disparaging, cruel, sad.  Please do share those struggles.  Learn to "reach out" to places that can help.  That can be very difficult...learning to reach out!

Hopeful,  You are such a wonderful addition to the board.  You are so hopeful - it is refreshing and you are a good reminder of what is really important.

My RA was overnight, then hospitalized.  It has been aggressive.  I have barely worked since onset, even though I have attempted to go back to the job I love three times.

When you describe your bursitis it makes me think of my muscle pain.  Most of my muscle pain is shoulders, upper arms, butt, thighs.  Could it be bursitis and if it is - is there anything they do to treat bursitis?

My RA is under control if I do not push myself.  Limitations are difficult for me but I am getting better at them.  The fatigue is the worst for me.  It used to be the pain.  I have taken very strong pain relievers, now on percocet, and it does mess with your sleep.  I have been lucky lately as my sleep has been good.  Wake up sore but I do pretty good after an hour or so.  I hope your relapse is short and you get some relief.  Stressful situations definitely aggravate ra.  I just accept that and try to go with it until I can relax. 

Hopeful; I agree with Roxy. You're a great addition to this board and I have no doubt you'll continue to inspire me to keep the faith even through difficult times.

Hi Roxy nad Lovie!

Thanks so much for the warm welcome into this lovely group!  I appreciate it!  I do try to remain hopeful.  I do not succeed every single day!  One day... I will be down and out and you two can show me "hope" when I need it!  A deal?

Roxy, bursutus occurs around joints.  There are sacks of fuid around joints  These are bursae sacks.  With bursitis, they become inflamed and full of fluid!  They are most noticeable by vision at the knee joints.  You may have swollen areas:  above the knee cap, below the knee and slighlty to the inside of your leg, etc.  Ankles swell just below the ankle bone.  It actually looks like a little "sack" of water sitting there.  (It is not "transluscent.)

People also tend to have bursitis around their shoulder joints.  THe ACV joint, approximately where your arm feel attache to your body... on the top of your shoulder/arm "joint area."

Bursitis is very painful.  It is most painful at rest.  It does not bother some people at all during the day.  Yet, it will throb all night long!  It is often burning pain.

Bursitis is often caused by joint "overuse."  Yet, persons with various types of arthritis may experience chronic bursitis without any "overuse."  (For example:  If I walk arounf, intermittently, while completing errands and am on my feet a bit... my bursitis rages! Strange.  I do not have to do much of anything to be in "overuse!")

Your doc can check for bursitis.  Also, most physical therapists, chiropractors know bursitis sites and can check on this for you!  I am reticent to say if this is likely for y ou or not.  It is more likely than a person withoout RA or other inflammatory arthrits diagnoses.

Treatment?  Yes!  Treatment involves ice, ultrasound treatments,  prescription NSAIDS by mouth OR by topical cream.  Also.. if it contiues, thereis another treatment in which a steroidal crea is deeply absorbed by your tissue if it is applied with an "ultrasound-like" device.  I cannot recall the word for this right now!  I will let you know once I recall it!

I have chronic bursitis.  It never goes away.  It fluctuates in severity.  Sometimes I'll have ultrasound treatments, etc.  Personally, if that does work at all, the bursitis becomes very active again once we have stopped ultrasound treatment.  I use a topical prescription cream, four times daily.  THis is a combination of ketoprofen15% and bupivacaine1% and is made by a compunding pharmacist.  It does wonders for me!

It does not hurt to inquire about this whenever yo unext see a doctor.

Tomorrow is the big day for you girl!  You are in my prayers as you "sign the papers!"

Thank you both, Roxy and Lovie for your uplifting comments.  I h ope to stay with this "community" and to share with one another...for a very long time!  I pray for the entire community here.