Thursday, May 31, 2012

Sharing about me.

By tlaker Sunday, January 11, 2009

Hello, I just joined the site and i'm just looking for people to talk with and share interest and to complain with. and also learn about my disease and symptoms and all that good stuff.

 

I'm 19 and i have had RA for 2 years. it started in my hands and they would get stuck in a fist.  i figured i was sleeping on my hands or something...but it went on for months.  i am a procrastinator so i just kept dealing with this horrible pain and figured it would just simply go away.  i was also a waitress at the time so you can only imagine.  i just kept getting worse and the inflammation wouldnt really get better throughout the day. it always hurt SO BAD. finally my mom made me an appt. and told the doc what was wrong and decided i needed cortizone shots.  i got them and they worked for a year n a half before flaring up again.  About a year later after my cortizone, i started college. of course i was walking a lot more...and it started in my feet.  i would wake up in the morning and barely be able to move. even my feet being under the covers killed me. my roomate through i was dieing...we would joke.  my family just thought i was sore from walking so much, but i knew this wasn't that at all and that something was seriously wrong with me.

so i went to a foot doctor who was no help at all. he told me that the problem was the flip flops i had on because my xrays were normal. i was sooo upset...i didnt care what the xrays looked like, I WASN'T FEELING NORMAL. and also i had JUST gotten them sandals and it was the 2nd time i'd worn them. so please tell me again why the problem for the past 3 months has been my shoes i got 2 weeks ago!

it's still odd to me..but at this time i worked at a gym as a receptionist.  i got really into fitness and would do the eliptical. it would really get the blood flowing in my feet and i would feel better afterwards.  soon i started to run about everyday for 3 miles on the tred.  at first my knee started to hurt and my manager gave me a wrap for it and said it's prolly runners knee. that eventually went away. i really stuck out the pain....

even though it hurt really bad at first to run...eventually its like my feet became numb and i couldnt feel anything. and afterwards my feet would feel better.  it was just so weird that i could run for a half hour non stop..but walking would about kill me!

this year in may i got married and moved because my husband is in the air force.  when i moved i noticed my hands were acting up again..along with my feet. it was horrible. well, i went to the doc. and they did the blood work and thought this is what i had.  i eventually got in with a rheumatologist in august and got put on my meds.  the meds worked really well at first and takes away most of the pain...but definetly not all of it!! i still have swollen hands that are stiff for a good while in the morning and sometimes my feet really kill me.  i dont think i'll ever walk normal again. i get really sad...and i had to quit my job as a hostess becuase standing on my feet made me come home and cry as my hubby would rub my feet (God bless him!)

1/12/09 4:23pm

Hello! Your symptoms sound so much like mine. MY FEET HURT SO BAD!!!   I have always been active, full of life....a little ADHD (ok lots) and usually dont sit down till I lie down to go to sleep.....until Oct of this year.  It started in the summer.  Foot hurt-went to Dr after a couple of months of limping.  "Pinched nerve" they said gave shots.  Lasted about a day...started hurting again.  Then the other foot.  Still thinking feet problems continued getting shots.  No relief.  Next my knee--but thought it was from limping and shifting my weight (you know how you try to explain everything)--started chiropracter.  No relief.  Next shoulder...and so on. By this point I went to the Dr (a good friend) and he suggested osteoarthritis (getting older and my past--took a beating as a college cheerleader) but he wanted bloodwork.  In comes POSITIVE RA. Here I am about 7 months later feeling like a 100 year old woman. 

 

Well I am still ADHD and I am going around in circles in my mind because my body has failed me.  I go for my 2nd visit to the rheumy this THursday and I hope they start me on the meds.  At first I argued that I didnt want to take the sterroids (because of the side effects--& I am so vain!) but now I dont care what they do to me --I just want to feel like ME again! 

 

I am so sorry your have to endure this at such a young age.  It is so not fair. I am 34 and i feel so cheated...i know you must.  Hang in there. Sounds like your hubby is a GEM!  Keep exercising if you can.  Best of luck & welcome.  I just joined last month.  I dont post much but it really helps me see that I am not the only one---AND I AM NOT CRAZY!!!!! MDZ

Lene Andersen, Health Guide
1/15/09 11:53am

I'm sorry you're having a rough time, but glad that you found health central - we have a great and very supportive community of users on the site, so please continue asking questions and posting.

 

Methotrexate takes about 6-8 weeks to hit full impact and it can be really difficult while you wait for that to happen. The good thing about where you are in terms of treatment is that methotrexate is at the bottom of the hierarchy of DMARDs (disease modifying antirheumatic drugs) and there are many other medications and combinations of medications that you can try if methotrexate doesn't work. When you get to a point where you disease is well controlled, your energy will increase and your pain will be less, although you may need to take painkillers on a regular basis. However, getting their may need a period of trial and error until you find something that works for you.

 

Living with a chronic disease can be a difficult adjustment. My latest posts outlined some of the tools that can help you adjust and find your way back to enjoying your life - you can read that here.

 

1/15/09 12:03pm
Hi there, I have recentley been diagnosed with RA (gggrrrr!)and have now started treatment on 7.5mg Methotrexate weekly I have taken 4 lots now, but havn`t felt any different YET!! I am being sooo patient though honest... I am very new to this site and am so glad that I can find people who have the same things as you and realize that no, we are not going mad :-/ I am 47, but at the moment feel 147 and probably look it too, but then tomorrow I could feel totaly different!! This disease has a lot to answer for!!! anyway I feel better for that hee hee Thanx for listening, and I will be in touch ANGIE x
1/15/09 9:05pm

oh yeah, i hear ya. i just got bumped up on methotrexate from 6 ea. week to 10...but i'm only taking 2.5. so mine must not be as severe as you....and i feel like i'm dieing some days so i can only imagine what you feel like with your meds being so high. :(  but yeah, i was walking two days straight with no problem at all and feeling great...and then yesterday and today i feel horrible and hurtin all the time! it just sucks but at least we have people to complain to right?! ;)

 

take care!

tori

1/16/09 5:16pm

I can totally understand howyour feeling. Ive had ra for 30 years. I was 19 when i came down with it and am now 47 years old and in a wheelchair. ive been on every med known to mankind and it has only helped me for a little while. I am now facing surgery on my hip as its gotten so bad I cant get in any position comfortably. Ive also tried alternative treatments,such as accupressure,massage, supplements. I dont really know what else to do. I think you should ask your doctor about starting on biologics such as enbrel or humira as these should work better for you as you dont have all the damage to your joints yet. When I got this disease they didnt have much you could take for it,so thats why Im in a wheelchair. I dont want to see other people end up like me,as I know many people with this disease but no one as crippled as I am. I hope this helps .

1/16/09 10:09pm

wow! that is so sad what happened to you! it seems the past couple days have been better for me but that always ends w/ a flare up of course. i keep wondering why i'm not on embrel or something like that... but i guess my rheumatologist knows what she's doing! i hope so!.... she said she wanted to try this first...but i still wake up in the morning really stiff and takes about an hour to feel better.

 

one thing that REALLY scares me, and sometimes i joke about it w/ my friends and family...but i'm just afraid of being crippled when i'm 25 and have a cane. even though i joke, it is something that gets to me sometimes and i worry A LOT.

 

i just hope one day i'll go into remission if that is even possible. i love to take a good jog every now n then, but i dont dare do it now because i'm so afraid it will trigger a flare up in my joints.  its just so unfair that every step i take, i'm reminded about how much pain i feel compared to other people that can walk without any care.

 

but i gotta keep my head up high and be thankful for the meds that at least make it a little less painful!

 

 

Anonymous
Malena
6/23/09 12:01am

I'm  sorry you are also living with RA.

To start my day , before standing, I perform stretching exercises in bed.  I also give myself a massage to my extremities , back and buttocks using a cream with similar consistency to Vaseline ; then I take a warm shower, and tell myself "I'm going to have a good day" eventhough I know that might not happen.

Since you are in 10 tablets of Methotrexate, I Just want to be sure you are taking Folic Acid daily, having  laboratory tests (CBC and hepatic function)  every 3 months, and yearly  pulmonary test function.

Tori, I'm please you have an understanding partner in life.

Malena

6/24/09 12:28pm

thank you for your comment Malena. i have not had the 3 month checks i dont think. i will have to talk to my doctor about that on my next visit.

 

i'm now taking humira as well and i feel amazing. the only time i'm in pain is if i do any exercises that involve stretching my right toes, they are still sore...but i dont notice the pain anymore when walking (which is amazing!)

 

stretching in the morning definetly would help me on the days i dont feel my best!

 

Tori

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By tlaker— Last Modified: 12/26/10, First Published: 01/11/09