have problems w/ people believing you?

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flwrchild
New Member


Date Joined May 2005
Total Posts : 1
   Posted 5/19/2005 11:39 AM (GMT -7)   
Hi, I'm new here. I work for a Dr(FP) and have a hard time getting him to even listen to me. So I started seeing the PA in our office. I've felt so tired my entire life. And also felt joint pain for a long time. I'm 38 yrs old and feel 98.But ever since November I have felt extremely stiff all over. My joints feel swollen all over but especially in my fingers. My fingers hardly ever stop hurting. But I wake up in the middle of the night with hip and shoulder pain so excruciating that I can't get back to sleep.If I sit in my computer chair with my legs crossed for more than 5 min when I get up I can barely move every joint in my body is stiff as a board. My rheumatoid factor came out weakly positive 4 years ago but fine ever since. And my sed rate is always normal. Steroids do help some for about a week.The PA thinks I have RA and is sending me to a rheumy.If it's not RA I can't imagine why I feel this way.Sometimes I think my family including my husband thinks I'm crazy. But this is real pain.I shouldn't feel 98 when I'm 38.How do you get people to believe your in actual pain and not looking for sympathy,which I'm not. I just want out of pain. Thanks for listening. Rene`

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/19/2005 12:21 PM (GMT -7)   
Rene, first of all let me welcome you to the forum. Sorry for all the problems you are having. It is not easy convincing people that you are in pain. Pain is relative not quantitative. You can't measure it and it differs from person to person. That is the hardest part. Keep striving for answers. Once you have the name of the disease it will be easier to face the battle. I myself have psoriatic arthritis. There are no tests out there that can diagnose it. My rhumatoid factor and sed rate are fine. This diagnosis is made simply by a-having psoriasis with athritis symptoms and b-by ruling everything else out. Not pretty but it does get the job done.
Please keep posting. We are great listeners and there are alot of us who have been where you are now. You are in my prayers.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
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erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/19/2005 8:06 PM (GMT -7)   
eyes  hi there Rene,
first, go to school and graduate from the "I'm not Crazy nor Depressed University" and bring your diploma to your next O.V. ! tongue just kidding!
your words are all too familiar. i feel what you're going through believe me.  i was very very young when my illlness and symptoms started to show...had positive bloodwork, but the kicker is....my dr.'s still didn't believe i was ill even with super high RA serum, lyme titers, and the list goes on.  i'm in the medical field now that i' m older, and constantly faced with patients who have the same dilemma.
you have to be your own advocate! :-) i'de suggest:
1. write down the year this all started and what you noticed when and how and be specific.
2. get a good family history
3. i would stay away from any doc affiliated with the one you work for because you want an unbiased opinion and diagnosis. like a FRESH start!
4. know where the pain you're having is now. both sides of body, one side? joints only or muscles too? worse on exertion? feels better with rest? confused and take into consideration how it affects your daily life too!
docs need a little slap in the face every now and then when it comes to pain from unknown origin. nono many will blame it on depression or somatic disorders. remember, RA and a lot of disorders have no specific test. RA may be positive in people but they show no symptoms..others have negative RA but have all the symptoms and fluid and swelling.
you had mentioned bad fatigue also. at 38 feeling like you're 90 is not normal unless you do not sleep and work 22 hours a day....or there is really something wrong that needs to be addressed. i feel that with aggresiveness you will find answers.
most importantly...make that time line of your feelings and pain and specifics and actually give it to the doc. I've been told by many doctors that they actually are able to piece things together when a client has a paper to give them with everything on it about their symptoms..they're visually learners by nature!
be strong and never give up...being uncomfortable is no way to live! if you feel in your heart that there is something not right..you're probably right.
take good care,
erin

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13451
   Posted 5/19/2005 8:21 PM (GMT -7)   
Hi Rene & welcome to HW. This is great group of peeps here. We support each other, offer up some potential advice, but always remember this is an individual disease and can effect peeps in different ways.

Also, you should never sit with your legs/feet crossed when sitting.

I agree about seeing a different dr that is not part of that group, but wait and see what the rheumy says. Keep us posted on how you are doing. Susie


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 5/19/2005 11:55 PM (GMT -7)   
Rene, I can completely relate to your situation. Being "tired my whole life" pretty much is me also. I had JRA as a child, but in my 20's when I started having problems again, the doctor's poo-pooh'd the idea of RA because my tests kept coming back fine. I was unable to walk for a few years and went to numerous so-called specialists who, soon as they realized they couldn't look at a test result and help me, said, "I don't see anything wrong though I don't doubt you think you are in pain. Maybe you should consider seeing a shrink." Oh, if I had a dollar for every time.......
 
I went through numerous rhuemy's here and they got frustrated because tests were fine and regular anti-inflammatory meds did nothing for me. Finally it was a podietrist who said, "you most definitely have psoriatic arthritis..." and it went from there where I finally found a decent doctor who pointed out all the signs I had for it where other's failed to do so.
 
My point, keep searching for answers. Yes, there are some other things out there that can cause these symptoms. But, that doesn't mean you don't have RA or one of the hundreds of forms of it that are out there. If a doctor is unwilling to help you find out what the problem is, find another doctor until who will and as hard as it is, don't get discouraged and don't let them get you down, which is easy to do when you are in constant pain.
 
Good luck to you and know that there are people out there who care and are willing to listen. I found this forum just a couple of months ago, and they have truly been a lifesaver for me emotionally and mentally. I hope you get the same success out of it.  

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/20/2005 8:42 AM (GMT -7)   
:-)  CaMama you're great! i loved the way you responded to this post!  it's really something how similar all of our journeys have been. it's like a universal phenomena! 
i have to keep reminding myself all of the time "medicine is a practice"  because so many times people go to specialists and they leave not feeling any more at ease as when they go in. sometimes i even feel MORE confused after a visit. 
i used to hate when they would bring up the "are you depressed?" question. it feels like an attack sometimes...kinda like not validating anything objective i've shown them.  but i've learned that over the years this is something they really have to ask everyone! it's part of their assessment now.
i hope everyone gets some answers and relief soon.
this was a very important post that was started because it brought up an important issue that everyone at a time experiences.
take good care to all!
erin

txsweet
Regular Member


Date Joined Feb 2005
Total Posts : 29
   Posted 5/20/2005 11:44 AM (GMT -7)   
Ya know, I too had similar symptoms, varied bloodwork, some good some off a little, but stiff and as I explain to my husband "I feel like the air is heavy as molasses." I was working at a bone and joint clinic of all things, they were unsympathetic and too interested in money to be of any help to me. That was in 2000. I have been to 4 rheumy's since then two pcp's 3 gi doc's and 2 eye doc's and an oral surgeon that fixed one of my sinuses. all in the span of 2 years and now i have stayed with the same rheumy for a while. Seems to me, (sorry guys) I didn't get any REAL help until I started seeing female doctors exclusively. Could be coinsidence but women doctors usually don't tell ya to go get a new hair do or some thing like that. I have had one tell me that before. I had a hard time getting even my hubby to belive me ....I told him that I did not go to school for years to up and stop working right when I was getting where I wanted to be.....duh. Then, I got the malar rash of Lupus. Sneakiest disease, here one minute gone the next. My hands, my hip and my low back ALWAYS hurt even though I take alot of narcotic pain meds, nsaids, steroids, ....dont give up....I went to wal mart and bought a parafin bath to put my hands in, it is better than sex when you hurt like that LOL Best of luck to ya be sure to write your questions down and take them to the office in your hand and don't let him /her out of there til your satisfied. You are your best advocate!!!
txsweet @>---
 
 
 
 systemic lupus erythematosus 2000 fibromyalgia 2000
 irritable bowel syndrome 1985 depression 2001 chronic gastritis,
 total ab hysterectomy at age 24 ,  osteoporosis
 
 


SISSY TIGHE
New Member


Date Joined May 2005
Total Posts : 5
   Posted 5/25/2005 10:25 PM (GMT -7)   

tongue  HELLO MY NAME IS SISSY AND FOR 4 YEARS I HAD NO INS. AND COULD NOT GET THE TEST I NEEDED TO PROVE THAT I HAD RA AND THE DAY I GOT THE TEST AND IT COME BACK THAT I HAD THE HIGHEST RA FACTOR MY DR. HAD EVER SEEN I CRYRD NOT BECAUSE OF HAVING RA BECAUSE I NEW THAT BECAUSE NOW I HAD PROOF THAT I WAS NOT CRAZY . AND THAT THEIR WAS SOME THING WRONG WITH BE AND IT WAS NOT ALL IN MY HEAD . IT WAS A LONG TIME COMMING yeah YOUR BODY TELLS YOU WHEN SOMETHING IS WRONG AND YOU NO THAT SOME THING ANT RIGHT DONT GIVE UP KEEP TRYING TO FIND OUT WHAT IS WRONG WITH YOU. EVEN THOUG I AM STILL SICK MY MENTAL HEALTH IS BETTER SINCE I FOUND OUT FOR SURE WHAT IT WAS. I SHOWED THE PAPER TO EVERYONE LOOK IT WAS NOT ALL IN MY HEAD I AM REALLY SICK PEOPLE THAT DONT HAVE RA DONT UNDERSTAND IT AND HOW BAD IT HURTS I WOULD GO TO A DOCTOR NOT THE ONE YOU WORK FOR.

SISSYTIGHE@aol.com


oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/26/2005 8:11 AM (GMT -7)   
Hello sissy tighe. Glad that you finally got the results that you've known in your head for a long time. It feels great to finally be able to say "see, I was right, now don't you feel like a heel for not believing me" Hope that now that the Dr has proof you can get on a treatment program that can get your RA in check. Keep up the fighting.
Gentle hugs.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 5/26/2005 7:42 PM (GMT -7)   
effie,
your round of testings were most likely to rule out all other neuromuscular and immune diseases/disorders. sometimes the only way to diagnose is to rule out everything else. don't think of it as a waste....at least you know for sure! i think we all went through the same ordeal at one point. i remember they were testing me for parkinsons, lou gerhig's disease, AIDS , cancer and a whole array of conditions....just to make sure they were not missing anything.
have a good night! take care
erin

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 5/30/2005 9:21 AM (GMT -7)   
Effie, Erin is right. Often the best way to a Dx is to rule out everything else. PA is an auto immune disease (like most diseases) Our symptoms are similar to many other diseases that are far worse. They need to rule out the others in order to come up with the "definative" Dx. Believe me, PA is not a definative Dx. To me all it means is the absence of everything else. I have psoriasis, joint pain, swelling, fatigue, bone errosion and joint "itching" therefore I have psoriatic arthritis. They never looked any furthur for me. Once the orthopedic surgeon (I was dealing with Baker's cysts in my knees and was looking to have them removed) saw the joint swelling and bone erosion he sent me to a rhuemetologist. Rhuemy saw the x-rays and the psoriatic plaques and said you have PA. After that he kept saying that I had RA. I kept correcting him and all he said was same thing. They both attack the joints the same way so therefore you treat both the same way. about 4 years later I left him and found a rhuemy that attacks each type of arthritis different. He is at McMaster in Hamilton. Very nice. But he sticks with the Dx. No other tests. He says my case was very easy to make the Dx because of the "typical" symptoms. Bilateral joint swelling, active plaques and bone erosion.
Sometimes when we are referred to a "group" doing research studies we tend to get more tests ordered just for the sake of science. Maybe that is why you received so many tests. They had to rule other diseases out so that you could be included in their study. At this point I would say be thankful you are in Canada. Otherwise you would be on the hook for paying for all those tests. Sometimes our health care is good for something.
What the Dr. probably meant when she said she could "cure" you is that with some of the biologics there is a "chemical remission (cure)". You could end up essentially symptom free. Most people who see me do not know that I have psoriasis and PA. The Enbrel has allowed me a visable remission. I still have fatigue, small plaques and joint pain but nothing that if you didn't know me you would see. People are often surprised to find out that I have severe PA but it is only the drugs that allow it. If I were to stop the enbrel, within 2 weeks my joints would start swelling and the psoriasis would get considerably worse. I am not cured to the worlds standards but for me I consider it darn close enough.
Hope all is well with you Effie.
Oreo
Worry not for tomorrow, for tomorrow will take care of itself.
 
Remember healing comes one step at a time, sometimes it seems that its one forward and 2 back but ultimately, always in a forward direction!!!
 
Help HealingWell continue to help people.  Please donate today.  Every little bit helps.  To donate go to www.healingwell.com/donate
 

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