New and feeling defeated

Hello all…

I am new to the board.  A friend of mine told me how wonderful everyone was… and here it as at 2am in the morning and I have been in bed for the last 30+ hours trying desperately to find a position that doesn’t hurt.  I need to complain to someone who understands, so I created an account. 

My RA symptoms began in 2005 shortly after I started my second Lupron treatment for my endometriosis.  My Rummy is good and she has been able to keep me somewhat ok for the last 2-3 years.  But lately I feel like I’m getting worse.  My fingers and wrists always hurt.  My toes and ankles hurt a majority of the time.  And on occasion my knees hurt.  But lately my knees hurt ALL THE TIME.  But what it really bothering me is my hip.  My hip has never hurt before, and now I can’t remember a single day in the last month where it hasn’t. 

I don’t know what I could have done to injure by hip so I am reasonably sure that this is an RA related problem.  What I don’t know is… Is this just an REALLY bad Flair?  Is this my RA spreading?  Is there anything I can do to stop the pain?  It seems to hurt when I walk, stand, sit, and lay down.

Like all of us… I consider myself a pretty strong person who has a high tolerance for pain.  But I am feeling defeated.  Any suggestions?

Hi Kat, and welcome to the boards.  We can all relate to the pain you're going thru.  Does your Dr give you any pain meds? I need them myself to get thru rough patches like you are having now. Also, what RA drugs are you on? Sometimes you just have to find the right combination (which I'm still searching for!).  And, are you able to consider seeing a chiro for your hip pain? I know mine has eased me out of a few painful situations over the last 20 yrs! And when my hands and wrists are extremely sore he puts stim right on my hands and wrists, and then very gently massages each finger.  A friend of mine sees a massage therapist when hers are bothering her terribly.  Talk to your rheumy again. Or talk to your GP-and talk till someone listens.  Thats part of their job.  And don't worry about whining! I seem to do it all the time. Hang in there girl.

My doctor has given my Ultram.  I never ask for more then that because when my body is falling apart my brain is all that I have.  And the other meds make my head all foggy.  But right now I am about willing to take or try anything...ANYTHING!  My GP gets copied on everything but knows very little.  I think I have seen him once in the last 5 years.  My Rheumy is normally great she just can't fit me in until the 2nd.  I never thought about a Chrio... maybe I should add that to my list!  I also need to find away to get insurance to cover some of the massage therapy because that does help a lot. 

I just have to hope that I will be able to pull myself together by tomorrow morning for work.  Thank you all for listening. 

Hey Kat, welcome to the boards!

Are you on any meds other than Ultram, like the disease modifying drugs (DMARDS) that will help stop joint damage- like methotrexate, plaquenil, humira, etc? if not, you should really talk to your rheumy (or if you're really not anything you should get a new one, actually!). 

I hate taking hard core pain meds, too, they make me feel really woozy. But, I always have vicodan in the cabinet- for me its because if I do have a bad day, I usually end up having a hard time being comfortable enough to sleep, and when I don't sleep, I flare, so it becomes a crazy cycle. One night of vicodan can really stop a downward spiral for me! Its generally a last resort, because my regular meds have the disease fairly well controlled, but it can be a lifesaver sometimes! I only take it when I sleep though, because then I sleep through the wooziness.

Good luck getting some rest!

Previously wrote:

Hey Kat, welcome to the boards!

Are you on any meds other than Ultram, like the disease modifying drugs (DMARDS) that will help stop joint damage- like methotrexate, plaquenil, humira, etc? if not, you should really talk to your rheumy (or if you're really not anything you should get a new one, actually!). 

I hate taking hard core pain meds, too, they make me feel really woozy. But, I always have vicodan in the cabinet- for me its because if I do have a bad day, I usually end up having a hard time being comfortable enough to sleep, and when I don't sleep, I flare, so it becomes a crazy cycle. One night of vicodan can really stop a downward spiral for me! Its generally a last resort, because my regular meds have the disease fairly well controlled, but it can be a lifesaver sometimes! I only take it when I sleep though, because then I sleep through the wooziness.

Good luck getting some rest!

I have been taking Plaquinil for the last 2 years, and I believe that she wants to throw in some Sulfasalazine (sp) this time.  I am always pretty stand offish when she suggests another medication.  But the way I have been feeling these last few weeks... I will take anything she gives me.  Sleeping has been a big problem for me.  I can't get comfortable, and if I do I can't get my brain to turn off.  I am hoping that this appoint well help with it all. 

My problem is that I hate showing weakness.  So instead of limping in, being miserable, and telling her everything.  I use all of the spoons I have, walk in with my hea held high and say "Its nothing I can't handle"  then I leave the appointment wondering when exactly I will stop being such and idiot. 

Thank you all so much for being so nice!!!!

Kat,

Welcome to Creaky.  You need to remember several things with this disease the medications are ever changing and you might have a cocktail that works great for now but several years down the road you might have to change up. So have patiences. (i think that's the right word).

What you need to do is rely on yourself to know what treatments are out there for you. Your Rheumy will know about most of them but ask us what we are all on to see what is being used in conjunction with the other meds.  For instance, a lot of the folks on this site are on MTX as well as Plaquneil (two DMARDS) along with a Biologic and/or an NSAID versus two DMARDS.  Some of us have pain meds, some Steriods. It is all a matter of what works for you.

I always recommend going to www.arthritis.org get a membership for 20.00 you get the Arthritis Today magazine included in that donation.  Also purchase on their store the 2009 drug guide.  It has all the latest drugs used for the AutoImmune diseases and what to expect from them, side effects etc.  Very informative.  LEARN EVERYTHING you can about the disease, if you don't know something ask us, we are all full of information.  Some of research so much it drives our doctors crazy. 

I keep all my doctors in the loop as well as ensure that all tests and studies are also  sent to me. (My Gyn stated to me, only the doctor that's letter head is on the report can send you (the patient) a copy of that report).  So becareful on what you rely on your doctors to be able to supply to you. 

Keep track of all your symptoms every day and tally them up and review them with your Rheumy at every visit.  What ever you discuss with your Rheumy make sure you inform  your Primary, educate your Primary if necessary on the disease.  Let me share with you, my primary didn'thave another RA Patient until I came to her practice.  After knowing and researching a lot of my care on her own she was able to determien one of her younger patients had JRA and got her to a Rheumy.  So remember you are helping them also.

I am also the first Klippel Feil patient my PMR and Chiro have ever had so there are those of us that are here to heelp the medical professionals learn. 

So if you need to know of any websites let me know...  tdemarc1@verizon.net.

Check out Single gal with RA site she is a hoot.

I'm all set up for my June 2nd appointment where I will be begging on hands and knees (who am I kidding... Its been a long time since I have been able to do anything on my hands an knees).  Right now I just have to get though the next few days with everyong telling me how aweful I look, and asking me whats wrong, and avoiding me like I have the freaking swine flu just cause I'm limping a little bit.  It seems like everyone around me is going out of their way to point out my pain and suffering.  Is it wrong to hate them all right now?

Kat,

It is not wrong to hate them, even though you really don't....  You will understand and learn how to handle those kinds of comments and stares as  you go through this.  Once you are on the right meds and/or treatments that work for you, you won't get them as often.

I spent today with a woman that has Lupus and was just diagnosed with RA last week. We sat and shared pain stories even to the point we needed to go up a flight of steps and we both were looking at each other to see who would go first.  Well all we did was stand there and laugh at each other. 

Hang in there you will make it through this flare and you will have good day's and you will have not so good day's..just remember you have a group of folks here that all understand waht your going through and for those that don't show them this site have them read some of the stories.  I know after 34 years with this disease you learn how to tune others out when they don't understand...  

Keep us posted on your appointment.

Tess

Kat,

These ladies know their stuff!  I would listen.

You are the second person to share the Sulfasalazine (Sp?) with me.  I will have to look it up.  Anyone else using it? Success?

I have to share this too - Last night, I went to the kitchen to grab a coke to take my pain pills.  Somehow, someone must've dropped an icecube on the floor and didn't know it.  So here I am struggling along anyhow, and my right leg shoots from under me.  Well, the screaming pain in my right hip joint was so bad, I literally screamed out.  See, my right hip happens to be my worst area of pain at the moment.  So I end up calling out for my husband, "Chris, come quick.:

So he scoops me up and carries me to bed, which is sweet, but the worst part was that we passed my mother in the living room on my way to the bedroom, and I swear that when she saw my hubby having to carry me, she about broke out in tears.  She was very attentive for a while after that.  The honest truth is that things like that seem little anymore to my husband and to me.  We are excited that I make it out the door to my internship most days.  Hooray for Remicade!  But my mother, having only been sharing a house with me for a few weeks is shocked by all she sees, I think.  If you think about it, we all always talk about how people would be more informed if they could follow us home.  So I just try to tell myself that it is no big deal, but I can completely  see how Kat could be bothered by the reactions of others.  It makes you feel worse to see the ptiy reflected in their eyes.  Sigh...oh well.  That is why we have each other.  Yuck, imagine if this was like 1971, and there was no internet for the creakies!!!

Hi

All I can say is "don't give up."  I have been in your shoes and it stinks.  Being in pain all over all day is horrible.  Speak to your doctor.  Maybe they need to tweak your meds.  I like Tremadol for pain.  I have no fear od adiction to pain pills mostly b/c I have JRA since I was 4 and am now 37.  So far I am not hooked and only use them as needed.  Massage is great as are jacuzzis.  Movies are also good to escape reality.

Good luck.

Previously Kat wrote:

Hello all…

 

I am new to the board.  A friend of mine told me how wonderful everyone was… and here it as at 2am in the morning and I have been in bed for the last 30+ hours trying desperately to find a position that doesn’t hurt.  I need to complain to someone who understands, so I created an account. 

 

My RA symptoms began in 2005 shortly after I started my second Lupron treatment for my endometriosis.  My Rummy is good and she has been able to keep me somewhat ok for the last 2-3 years.  But lately I feel like I’m getting worse.  My fingers and wrists always hurt.  My toes and ankles hurt a majority of the time.  And on occasion my knees hurt.  But lately my knees hurt ALL THE TIME.  But what it really bothering me is my hip.  My hip has never hurt before, and now I can’t remember a single day in the last month where it hasn’t. 

 

I don’t know what I could have done to injure by hip so I am reasonably sure that this is an RA related problem.  What I don’t know is… Is this just an REALLY bad Flair?  Is this my RA spreading?  Is there anything I can do to stop the pain?  It seems to hurt when I walk, stand, sit, and lay down.

 

Like all of us… I consider myself a pretty strong person who has a high tolerance for pain.  But I am feeling defeated.  Any suggestions?