new member needs help plz tell me whuts wrong with me!

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samual
New Member


Date Joined Dec 2005
Total Posts : 10
   Posted 12/5/2005 6:41 AM (GMT -7)   
hi i am new to the forums but have been reading for awhile now so please excuse me for i have a whole handfull of questions.
a bit of background before my questions.
i have had chrons for about 10 years now and several years ago i started having way more back pain than usual i actually was in a acdent and at 1 time felt that is were i hurt my back but now having second thoughts because i have had a few xrays and all they show is a some deteriotion of one of my disks doc says nothing sticks out to explain my pain but sometimes thats the way it is, bummer cause they really cant seem to do anything about it?
now recently ive read that chronies get bad arthritis annd between that and the fact about 6 months ago my foot for no reason started being in mayjor pain all the time and pains and  aches in certian joints slowly getting worse im now wondering if its arthritis as a friend has suggested as well?
So i was wondering could it be causing that much pain that i cant even get out of bed at times its so bad or stand walking on my foot?i get oxycodone for the pain and its still kicking my butt through the meds?i know people with arthritis that say jus deal with it,i cant beleive they have what i do cause they wouldnt be saying that i feel, its jus to life altering.
I have always heard people complain of there hands and fingers my worst are is my back and butt and foot does that sound possible?
how do i get properly diagnosed?how common is it for cd to have it?and what can be done?if it is are pain meds not the answer if so how the heck do u live with that constant pain?my pain in back is always there at a pretty high level but also can be easily tweaked so im bed ridden if i lift anything heavy or jus move the wrong way.rain doesnt seem to make a difference.anyone having the time to respond i thank u in advance and im sorry about the spelling and long story.between the chrons pain and back pain my life sucks without pain meds can anyone else relate or am i alone?i kno i need to see a rheumy?

Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/5/2005 7:56 AM (GMT -7)   
Hey Samual - welcome to Healing Well... Boy does your story sound a lot like many of us here on the forum. There are blood tests that your doctor can do to to determine if you have arthritis or not. Are your joints that hurt swollen and red? Those are also indicators. Your best bet, like you said, is to see a rheumy... do you have an appointment scheduled? I know before I got put on Enbrel, I didn't think that I'd ever be the same, but I am almost good as new... still have bad days, but the good out weigh the bad now... I hope you come back to visit and please let us know how you are doing - Duck
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel

Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant

Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
 
Current Meds -  Enbrel/Prevacid/Synthroid
 
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/5/2005 9:10 AM (GMT -7)   

Dear Samual,

As I was just talking with my GI doc on Thursday, he was telling me that people he treats that have Crohns develop some form and degree of arthritis 80% of the time (that was his stats...not mine).  The arthritis from Crohns is in a category of itself; you may not show up with positive Xrays/MRIs and positive hallmark arthritis/RA bloodwork in that matter.  Crohns arthritis really hits the hands, back, and pelvic girdle hard and other places as well. 

Not only do we need a GI, but a rheumatologist as well.  They work hand and hand.  My best advise is to ask your GI the rheummy he's familiar with (they'll converse over the phone a lot, since they share mutual patients). 

Sometimes it turns out that a Crohns patient's MAJOR problem is not the Crohns....BUT THE ARTHRITIS PAIN!! mad
 
What are you being treated with now for the CD?  I know you are on pain meds.  What about steroids?  On Humira or Remicade?  (Humira is in the process of being approved for Tx of CD)....{{they just have to figure out the dose.}}
 
I know how you feel.  I have to take Darvocet or if really bad Morphine for joint pain.  I have had RA since a teenager, but never treated for it till 2003.  Have Crohns as well.  The joint pain is tremendous Samual...I know.  Like last Thursday, it took 8 hours to get from my bed to the bathroom the knee pain was so bad, and forget about eating/showering...that took till nightime.  It's terrible.  I'm 24...I never say,"I just deal/live with it..."  like you heard people say.  When it's that bad, you can't just live with it!  I end up at the ER a lot too!
Was on Enbrel for a year...it got me "good" enough to finish a semester of school.  None of the NSAIDs or COX2's worked because, of course, with the CD I bleed bleed bleed! and barf occasionally!  yuck....
Prednisone of course helps with my joint pain (but I hate the drug & the effects of it)...but what can ya do??  It helps break the pain and a flare pretty well.  The opioids dwell the pain...but even sometimes the joint pain is so bad that the strongest stuff barely takes the edge off.
On Humira now...I take it every week for RA and CD.  Adding Immuran and sulfasalazine soon (taking Penatasa too).  And starting Remicade in January (hopefully if my immune system is OK).
 
Something has got to give.  Can't imagine living like this.  It's torture...but be aggressive, and you will get somewhere with these docs.  And sometimes you try a med and it doesn't work well....go onto the next one. 
 
My heart goes out to you.
Let us know how you're doing today.
Erin
 


samual
New Member


Date Joined Dec 2005
Total Posts : 10
   Posted 12/6/2005 8:29 AM (GMT -7)   
thanks for your reply. by no means am i glad someone else has these problems, but it sure feels better talkin to people that can relate it is funny how much that can help,ive learned so much here .my doc is always in such a rush to get rid of me and has never once had the time to jus sit and listen to all my problems, he wants me there once a week for a 2 min convo {obvously getting paid be the visit not the time spent in the visit}.bums me out, i talk a mile a min jus so i can get as much out as i can.
 
ive even stuped to trying to talk to several pharmacist and thats a joke soon as i mention im using pain meds they look at me like im a crackhead and treat me like scum.id feel so much better if i just knew what was wrong even if nothing could be done atleast thered be a name i could call the monster.
 
it sucks cause he never wants to give me a long lasting script for the pain meds, so i end up eating horrible amounts of tylonol and advil which i know is horrible for the cd.i tell him im eating large amount of otc pain meds and instead of discussing gettin long term pain meds he only perscribes me when im bed riddin from the pain, thank god for that atleast.i know with the cd i shouldnt be eating these types of meds at all i need something cleaner no?he should no this, and he never suggested the pain could be arthritis related .doesnt tell me to see a speacialest for anything the cd or the rheumy,i asked for pain speacialist and he scoffed at it sayin he didnt think i needed one.
i didnt know what a rheumatologist was until reading it here!i dont kno mabye he doesnt think it could be arthritis leaning toward damage from accdent,i guess i didnt either until the foot started,ive had that xrayed and nothing! and the pain is so bad i was betting people i was walking around with a broken foot, i was shocked when the xray revealed nothing i mean how could i have that much pain and there be nothing wrong? the only advice i got was wear a good shoe inside the house.the pain is so bad i can barley walk on it with strong pain meds! goin on 6 months now with the foot.i hate goin there all i leave with is a cold or flu from sittin in the lobby with 100 sick people.
 
it is effecting my life in every way,i am uneducated, i had a son when i was very young so i joined the workforce early so i am basically a labourer no matter where i work thats what iv always done and now i cant lift anything without hurting myself bad and my personality was a happy energetic person now im a unhappy sloth that cant do anything and spends every morning on the toilet for a hour with the d and cramps that contract my whole body from the cd and since my back is at it worst in the morning its quite the joy ride joltin back and forth.if it was say a week on a week off with the pain mabye i could take it but day in day out for years....arrhhhh.
 
when im on the pain meds i can live a semi normal life no d, no cramps, pain in back is managable and foot is walkable life is decent.id rather them be able to fix the problems but if nothing can be done i cant go on forever without meds.im at the point were its causing spirtual damage.the whole pain killer epidemic in this city has really diminished the ability of legit pain patients gettin proper treatment,a friend recently had his hand stuck in a peice of machinary and it was chewed to hell and they would even give him t3s.and on the other hand i have friends that got scripts {before the epidemic}that could provide pain relief for a small town!it seems if ur just tryin to get pain meds now your out of luck.on top of that half the city cant get a doc never mind switch docs because u feel hes not helping cause ul end up without one.i am also overweight by about 50 pounds aswell i imagine that is not helpin the old bones any either.
could the rheumy or the gi get me on a steady script so i can stop with the otc all toghter?
what is Prednisone is that a steroid or a pain killer or a anti inflamatory?is it addictive?
i cant eat or drink milk products,i imagine that effects the bone probs does anyone take suplements in that regard?
can arthritis be passed down?
its great to talk with people with the same or similar probs is there chats ever or chat on irc im missing out on?do u guys comunicate in other ways besides the forums?
any other suggestions info or stories would be great to hear from you all, thanks for taking the time to be involved with my situation
 

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/6/2005 2:00 PM (GMT -7)   
Hi Samual,
 
OK, as hard as it might be...it sounds like you need to change/find a new place to get help for what you're going through.  The Dr. you described sounds like one of those idiot HMO 15 minute-bums rush appointment docs who could care less about anything and everything.  I've had em' too.  And 15 minutes is a LONG TIME!!  Lucky  to get 10 minutes?
 
Do you have insurance?
Are there any University or teaching hospitals in your area?  Sometimes going to a university hospital is good for a consultation and second opinion/evaluation.  They are updated on all new things and treatments and are very affordable (they have programs of assistance if one has to keep cost down) and the copay to be seen is kept small.
 
I really wouldn't take any more Advils or NSAIDS though....I have CD and RA and stick to tylenol or narcotics for pain.  The advils and aspirins will make the stomach and intestines worse.
I think everyone has trouble with pain meds.  Docs can only write a certain amount at a time...it's frustrating, but that's why we have to keep being seen in office just to have scripts renewed. 
Pain mangement is important.  And it needs to be addressed.
Do you need a refferral to see a pain management doctor?  If so, and your doc scoffs you...heck, demand one!!!  It's your money you pay to see him!!  And pain docs do more than just prescribe, they give physical therapy and alternative therapies as well.
This really sounds like it's totally messing up your quality of life.
I would really try to see what can be done to be evaluated and treated by another doctor and a specialist.
 
Let me know how you're doing
Erin 

oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 12/7/2005 9:16 AM (GMT -7)   
Samuel, I answered some of your q's in the thread on RA questions. Check it out if you want. Hope all is going okay with you.

Oreo
God will never give us more then we can handle, I just wish that God didn't trust me so much.
 
Remember healing comes one step at a time, sometimes it seems that its two steps forward and one step 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
 


CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 12/7/2005 9:28 AM (GMT -7)   
Hi Samuel, I also answered your other post, but I wanted to reiterate something. You said your feet just started hurting, but your back has been bothering you for a few years. I think in addition to seeing a rhuematologist, you should see a podietrist (foot doctor) and get some orthotics. Having been through the pain of having poor mechanics in my feet for pain compensation, I know the importance of taking care of that - it may cost money, but if the podietrist says you could use adjusting, then do it. Also, if the podietrist suggests stretching to help it along - do it!  I actually had to use crutches for a while, it was horrible and though I'm only 35 now, I often feel like I still need a cane to walk when the arthritis acts up in my feet. If I wear shoes w/o my orthotics in them for more than 2 hours, I'm crying in pain.
 
Many doctors don't think of or scoff off the notion that you need another kind of doctor, so you may have to insist from your Primary Care Phsycian to get referrals to both. I think it is important and many docs won't give you referrals or Rx's until you insist you need them.
 
Your story sounds so familiar...I think every one of us can relate. We have found solace and help here on HW with people who are dealing with the same issues. We know the trials each other has to go through getting help and treatment for our problems.
 
Good luck and take care.
**
 


oreo
Veteran Member


Date Joined Feb 2004
Total Posts : 528
   Posted 12/7/2005 9:39 AM (GMT -7)   
Ditto!!!!!!

Oreo
God will never give us more then we can handle, I just wish that God didn't trust me so much.
 
Remember healing comes one step at a time, sometimes it seems that its two steps forward and one step 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
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 12/7/2005 7:44 PM (GMT -7)   
Well said Mama! :)
Diagnosed January 2005 - Psoriatic Arthritis/Spondylitis
-Currently taking 50mg shot weekly of Enbrel

Diagnosed May 1998 - Graves Disease
-Complete Thyroidectomy September 1998 - While 11 weeks pregnant

Other Complications - GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes
 
Current Meds -  Enbrel/Prevacid/Synthroid
 
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots


erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 12/7/2005 8:05 PM (GMT -7)   
I do agree indeed!
:)
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