• Lisa DiProfio Lisa DiProfio
    November 29, 2010
    I present as having rheumatoid arthritis with no factor in my blood. I had a flare that presented li
    Lisa DiProfio Lisa DiProfio
    November 29, 2010

    I am a 44yr old woman, 206lbs. Know that i need to lose the weight to help with the pain. I am now (unsucessfully) on Methotraxate.(nausea, vomiting). What can i do to help myself? I'm trying to get answers, but still have none. I don't know if there are specific foods i should be eating to make me feel better. I take fish oil twiced a day, a multi vitamin, calcium with magnesium & folic acid. Does it really take this long and this large amount of money for the doctors to get an answer?

    How much longer till they find out what it is? This is very depressing when you can't do some of the normal things in your life. People in my personal life are skeptic because i "look fine".

    Can anyone help with any of my questions?

    Thanks

    Lisa DiProfio

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FROM OUR EXPERTS

  • V
    V
    Health Guide
    December 01, 2010
    V
    V
    Health Guide
    December 01, 2010

    Hi, Lisa. Welcome to our community.  This is a great place to come for information and support. People who do not have chronic pain do not understand. I guess it is really too much for us to ask them to understand. Rest assured, people on this site "get it".  I don't have much to add to what Ronie said. I call her Ms Merck.....the medical manual.....because she has so much helpful knowledge and experience. I need to check this w/Ronie, but I am pretty sure they have injectable MTX for those who cannot tolerate the oral medication. As far as exercise goes...I have a DVD of Tai Chi for Seniors. LOL I am 56 but this is a great DVD for me.  Lots of stretching and gentle exercise, and it helps me immensely.  Just an idea. Hang in there and try to take one day at a time. Things will get better.  Peace, V

    • Lisa DiProfio
      December 01, 2010
      Lisa DiProfio
      December 01, 2010

      Thank you for your input. The dr said that if splitting up of the methotrexate into 2 days didn't work for me i could get the injectable form, since that doesn't go through the tummy. I just have to be un-squirmish enough to give myself the shots. Thank you for the thoughts on the Tai Chi, at this point I'll try anything at least twice!

      Thanks again to all of you. It's really nice to have support out there.
      Lisa

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    • ronie
      December 01, 2010
      ronie
      December 01, 2010

      I have used the mtx injection and they are a lot easier on the tummy.  The nausea was more tolerable. The formula for mtx is just yucky period.  Only way around it is to not use it.  After years of my complaining they finally invented Arava for me.. LOL. It is a daily dose and has not given me any side effects at all.  I love it and would willingly become a spokes person for it should they ask.  LOL

       

      I do recomment the Tai Chi.  Unlike yoga there is not floor exercises.  And you would be surprised at how much work your muscles go through to move extremely slowly and methodically.  I love it.  I took Karate classes as a child and Tai Chi is the closest I can come to keeping up with those techniques. 

       

      Sorry by my spelling sucks today.  I think.  I dunno if I am spelling this stuff right or not..LOL

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FROM OUR COMMUNITY

  • Dana December 01, 2010
    Dana
    December 01, 2010

    Welcome Lisa!

     

    I so understand the questions that come up! I have myriad isses- chronic pain from a rollover car accident that jacked up my neck & back, FM, CF, RA or IA depending on what the bloodwork shows at the time (wish the docs could make up their minds). And I don't "look" sick!

     

    Regardless of where you are with finances, the little things can make a BIG difference. If I don't stretch daily, I have trouble walking, so while I would love to take some classes to learn more on yoga or Tai Chi (my personal fav), my budge runs toward borrowing a video from the library.

     

    My favorite alternitive treatment is massage therapy. I'm lucky (while I have insurance) that it covers it, so it's affordable with just my co-pay.

     

    Another item to think about is the pain issue. If your doc is not comfortable prescribing, ask for a referral to a pain management specialist. I did and while I fought taking paid meds, I realized after several years of trial & error that I was making my self worse by not taking things as directed. Once the pain was under control (a 6 instead 9 with spikes), I was able to live again, not just exist from day to day. Lene has some amazing posts that refer to this.

     

    Also, from a work perspective, you might want to check into FMLA. This protects your job to a certain degree in that it can cover absences, dr appts. or specific working accomodations (ergo set up, breaks,etc.). But read up carefully so you know what is covered and that your doc is very specific. HR generally hates open ended accomodations and will question this.

     

    And, last but not least, is sleep! I sleep in 3 hour increments now but it used to be 1-2 if I was lucky. I was fortunate to get a TempurPedic mattress which helped dramatically.

     

    This is a wonderful site as you've found and there are great resources here to help. Whether it's RA or IA, it can be overwhelming but it is manageable!

     

    Dana

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  • ronie November 30, 2010
    ronie
    November 30, 2010

    Hi Miss Lisa, Welcome to the community. 

    It is completely understandable that you have loads of questions right now.  You did not mention when you started having symptoms and how long you have gone without proper diagnoses. 

    There are many cases of sero-negative RA (meaning you meet several RA criteria but have no common bloodmarkers).  Diagnoses for RA can take a while and it is very frustrating. 

    How long have you been on mtx?  Many of us suffer through nausea and other yuckiness, but if you are actually vomiting, ask your rheumatologist to switch meds or lower the dose.  There are other DMARDs on the market.  But mtx is usually first line. Are you or have you been on any other meds.  Like an anti-inflammatory or maybe prednisone?  It usually takes a mix of meds to get things under control.  Then you can work from there.  Have you had xrays or any MRI's?

    I understand completely about how friends and family do not "get it."  Because I was an athlete and complete active free flying person, it has been very confusing for my family to see me move in and out of a wheelchair or on my crutches.  Because my meds do their job very well at controlling my swelling right now, people do not understand that I can still be in pain (especially because I am not one of those whiners who bitch and complain all the time.)

     

    Let's see, what can you do to help yourself?  truthfully, anything you can find that helps.  wraps, braces, exercise, breathing exercises, stretching, heating pads, a warm neighborhood pool.  It is also important to learn to modify some of you exercises and daily activities in order not to hurt yourself.  You will eventually learn how far you can push yourself before you reach that "I have overdone it" point.  Sometimes (or at least in my case) it takes a while to get that one through a thick head like mine.

     

    We are hear for you to vent to if you should need it.  We share our accomplishment as well as our downfalls on this site.  And we welcome all who are willing to listen. 

     

    Keep your chin up!! it takes a while to get to a good point sometimes.  I best advise is to be a self advocate and not allow a slow moving doc to keep you in too much agony.  Pain cannot speak for itself so you have to find that voice for it!! 

     

    Check out our articles on how to handle the first stages. Up at the top of the page is a section on Newly diagnosed.  There is also a book on what to expect the first year by Mcneil.

    The First Year: Rheumatoid Arthritis: An Essential Guide for the Newly Diagnosed

     

    Let us know if there is anything I missed or you have any other questions. We are here

     

    Ronie

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    • Lisa DiProfio
      November 30, 2010
      Lisa DiProfio
      November 30, 2010

      Hi Ronie,

      Thank you so much for writing. The worse thing right now is feeling alone.

      I have been having joint pain for the last 5 years. It wasn't until 1 1/2yrs ago

      that i was having stomach problems and told me GP about it. She asked if anything had changed and i told her since i was in pain i had inadvertantly taken 8 ibuprofen one morning and started to feel better. I had just basically started doing it all day long since it helped. She was so upset that she hadn't REALLY been listening to me. I told her i had assumed the pain was coming from age and gaining so much weight in a short amount of time. I thought my body was just protesting. Well, she started me on some tummy pills because she was pretty sure i was destroying the lining of my stomach. She then made me an appointment that day with my rheumatologist. He did all of the blood tests and did see some physical inflammation at the time. Although the blood tests came back without the rh factor? he said my symptoms were very much like RA. The pain mimicked each side. ie. if one wrist hurt the other hurt. Basically he said although he couldn't diagnose me with RA (for insurance purposese) without the factor being present in my blood, he would have to write down "an inflammatory arthritis", we tried 2 different anti inflammatories, the first made me nauseaus and so we started on Meloxicam. A couple months ago, i woke up with pain in my left thumb on Sunday. I ignored it, Monday it started to hurt worse and Tuesday it was double in size with a big knot on the first knuckle. THAT had never happened to me before, i had never had that kind of inflammation and it scared me. He saw me immediately and did more blood work, put me on prednisone. Prednisone i started Wed morning and the pharamcist said to take it before 9 a.m., which i did. After that i didn't sleep until Sunday night! Let's just say i was rotten for work all week. Let alone trying to do computer graphics with one good hand and one that looks a catchers mitt. The lab results came back with really high inflammation but no rheumatoid factor. So, he said that particular flare looked like psoriatic arthritis but there's no patches on me.  We started Methotrexate 6 tablets on Friday night with supper. Well, i went to see him after more blood tests on the Methotrexate and the inflammation was too high and he wanted to give a higher dosage. He said he couldn't do that since my stomach wasn't handling it. Now i've started (this past weekend) taking 3 on Friday night and 3 on Saturday before 24 hrs is up. This has still made me nauseaus but not thrown up. He said that breaking the dosage apart like that didn't help the next step i could try were shots. I guess i messed myself up by not wanting to complain and waiting too long. But, i honestly thought it was due to my weight and not taking care of myself. Now, i don't know if i'm headed in the right direction with this, do i need to try the shots, try a different dr or what.

      He doesn't want to give me anything for pain, thinks it's "too early to get into that", that was the only thing i did not like. I'm not asking for drugs, but if you see a hand that looks like a catchers mitt wouldn't you think i was in pain?? Especially when you barely touch it and i cry?

      Thank you Ronie for responding!

      You are my first shoulder to lean on and it more deeply appreciated than i can ever convey to you.

      Thank you again.

      Lisa

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    • ronie
      November 30, 2010
      ronie
      November 30, 2010

      The insurance issue is bs by the way.  Yes there are millions of people out there who have sero-negative RA.  Inflammatory arthritis is an actual disorder but how I interpret all the medical books i have and all the info on the web is that IA is the umbrella term for ongoing pain, swelling and stiffness that they cannot pinpoint.  (in actuality all arthritis isn inflammatory at some point.) What he should have said was that HIS insurance would not allow him to give you the right medications until he makes a diagnoses and he is has not dug far enough yet.  There are guidelines he has to follow to get your insurance to pay for things but with a little paperwork on his part (or by his nurses), things like xrays and such will be approved.  He just has to provide answers when they ask why he wants to do things.  Usually, the right wordage the first time around will get stuff passed.  

       

      Now Fibromyalgia can also cause all the same symptoms without the RA factor as well.  However, with things being symetric sounds like RA to me, but keep in mind I am NOT A DOCTOR, I just play one on the computer..hahaha.

      Have you walked through the website for the American College of Rheumatology?  They are the ones who set up the criteria for diagnoses. 

       

      If you are not satisfied with your doctors work, get a second opinion.  In doing so, try not to badmouth your current rheumie because that just causes issues.  Let any doc that you go to know all of your symptoms no matter how small you feel they are.  They need to know to make an acurate diagnoses.  Make a journal so that you can show them in writing your daily or even hourly issues so that you do not forget the little stuff between visits at might mysteriously come and go. 

       

      Most of the time first line meds are prednisone, mtx, and/or plaquenil (depending on your response to mtx) and a anti-inflammatory.  From there, they mix and match doses.  Yes alot of our meds tear up your tummy and we take meds for that too.  If you are really not tolerating mtx, ask your doc about Arava. 

      It usually takes a few months of trial and error and lots of bloodwork results to send to insurance companies.  If nothing is working by the 4-6 month mark, yes you can consider shots.  Enbrel is a good one to start with. 

       

      Please don't think you have caused yourself issues by gaining a bit of weight.  That has nothing to do with your hands.  Since you say you do computer work, it wouldn't cause you much knee or hip pain either unless you jog at night.  You cannot do anything to actually cause arthritis.  It causes itself.  It is your inner chemistry. 

       

      A lot of doctors will not give painkillers like Vicodine.  You will get familiar with the term, "treat the disease, not the symptoms."  And "if the medication is doing it's job you won't need painkillers."  Alas, I cannot help you with that.  I have a list of ailments as long as my driveway and not a painkiller in the mix.  And I think over 25 years into this, I am past the newbie stage and know when and why something hurt.  But truthfully, when I do get a few painkillers from a sympathetic doc, I tend to hurt myself because of the pain relief.  Nothing like pushing yourself to the point of realizing you have overdone it...LOL..So I do a lot of self massage, breathing and laughing.  Laughing is great medicine.

       

      Let us know whether you can get into another doc.

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    • Lisa DiProfio
      November 30, 2010
      Lisa DiProfio
      November 30, 2010

      wow, so much information that i didn't know and so much to think of.

      I have my next appt the 2nd week in January unless something bad happens between now and then. i am going to try writing down everything i can think of

      that may or may not help. I tend to think the little things don't matter, but maybe

      they actually do. Thanks for giving me so much to go on. Do you have any

      ideas on what to do when hip aches are so bad when you go to bed. I just keep re-heating this thing they call a bed buddy. Should i be sleeping differently or

      need a different type of mattress. Right now my biggest problem is walking at work.

      i get stuck sitting for so long at my computer that the old hips don't want to co-operate when i do get up. I am seriously considering either telling my workplace that i have to get up and walk every so often, or get a dr's note telling them the same. I don't want to give up on my dr yet, he does seem to be trying, i just seem to stump him!! He's also used to seeing much older patients and i'm not sure he is sure what kind of "bedside manner" he should be using.

      I watched a show on PBS last night that was Peggy Cappy Gentle Yoga for Arthritis, it seemed very interesting and it may help ease the pain after sitting all day. Thanks again for all of the info and all of your support. I'm feeling so much better just knowing there is someone out there that understands! Thank you!

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  • MarieH May 17, 2011
    MarieH
    May 17, 2011

    I am also 44 and have been dealing with lupus and rheumatoid for about 17 years. this past year has been absolutely aweful, dont seem to be responding to treatment. one of the few things i still struggle with is that no one can ever pinpoint exactly what is going on. But recently (i know...its taken me a while...im slow!) i have learned it really is one day at a time. I got through yesterday and i will get through today too. Try to look at how your doing over longer periods like the week or month and not hour to hour as i did for so long. It doesnt help! Know that there are alot of people dealing with the same pain and having the same questions. I wish we could all get together and figure it out!

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    • Lisa
      May 18, 2011
      Lisa
      May 18, 2011

      thank you for your perspective Marie. I too get caught up in how i feel hour to hour and i guess i should change that. I should probably focus more on the better days than the worse days. sometimes its just hard to stay positive when other peope don't understand. But, i guess that is why we have this forum. So that people like you and so many others can help each other feel better or change their way of thinking. Thank you for your response, i hope that you have a good week. Also, like you, i think if we all got together we could win this thing.

      thanks for writing.

      Lisa

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  • Flaregirl January 04, 2011
    Flaregirl
    January 04, 2011

    Lisa hi.  I just have to say you and I are really very similar in our quest to get answers... and everyone keeps telling me I must be patient!  I am not one who can deal with not having control of my own well being.  It is so frustrating to hear you have RA. but your bloodwork after a year is coming back normal now.  So, here I sit and wait to see what will happen next.  I guess you could say I am scared, just as anyone here who is dx.  I hear kiwi, strawberries, blueberries, watermelon,(good for inflamation) just a few I can remember now.  I too weigh 212 lbs. and need to lose weight.  But, some of these dang drug they put you on don't really help with that fight.  Well, I will save you to my home page.  Hope to reconnect and see how your doing.  Try to stay strong. I know it's hard.  But that's why we're here. Right? Laughing

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