arthritis and lupus,

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adree
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Date Joined Jan 2006
Total Posts : 14
   Posted 1/15/2006 12:01 PM (GMT -7)   
I was diagnosed with lupus 2 years ago, and the first symptoms i had were similar to having arthitis, currently my doctor doesn't give me anything for my pain, so i had to go to physical therapy which, worked for the strength of my muscles, but i stilly had pain, the only medicines i take are for blood pressure, prednisone,. I have asked my doctor for somenthing for my pain, since i do a lot of activity thorughout the day, and he gave muscle relaxants (that only put my to sleep but dont work for the pain), and he recomemended tylenol, (but it would make me really sleepy, i would take several dosis thourout the day, because everytime i need more pills to control the pain) im currently going to a chiropractor, and he offered "alternative medicine", which i believe could work, but i still dont know what to do, i'm 16 yrs old
i have already gotten used to walking in a certain position to feel comfortable,(ehich my family and friends think is funny) and im in school, so my hands give me a problem writing, i dont know what to do (this has really given me a lot of trouble)
thank-you  
have a nice day
 
adree

Ducky
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   Posted 1/15/2006 2:37 PM (GMT -7)   
Hi adree and welcome to healingwell... sorry you are going through so much at such a young age... you need to see if your doctor will send you to a rheumatologist... so that you can get diagnosed properly.. in the mean time, have you tried taking Aleve? I know a lot of people have gotten positive results from it... good luck to you, and let us know what happens - 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


curley
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Date Joined Mar 2005
Total Posts : 4305
   Posted 1/15/2006 7:55 PM (GMT -7)   
Hi Adree,I have to agree with Ducky.You need to get your pcp to referre you to a Rheumatologist I know that this has got to be a hard time for you and at 16 I cannot imagen going through this at that age.Please let us know how it goes.
Thanks
Curley......
a.k.a.Mela...........


adree
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Date Joined Jan 2006
Total Posts : 14
   Posted 1/15/2006 8:55 PM (GMT -7)   

thank you so much, for the advice,

 but i forgot to specify that my doctor is the rheumatologist

yea he is actally a lupus specialist and rheumatologist on children, i also have a rheumatologist

have a nice day!

and thank you for reading my post!

god bless! 


adree
New Member


Date Joined Jan 2006
Total Posts : 14
   Posted 1/15/2006 9:01 PM (GMT -7)   
yea sorry,
let me start again i have 2 rheumatologists, Dr. O, and Dr. C, okay. Because Dr. C is in another city , my local doctor is Dr. O. However, only Dr. C. is a lupus specialist, and rheumatologist for children, he is the only one that can prescribe because he knows more about my illness, however he is the one that i was talking about in my FIRST post,
it's a bit confusing but tell me if i made a mistake
God bless!

Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 1/16/2006 7:07 AM (GMT -7)   
hey adree... you need to see if you can go to another rheumy... seems as though he's prescribing you the wrong meds... See if you can get a second opinion... - 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


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 1/16/2006 10:03 AM (GMT -7)   
Hi adree. I'm really surprised that neither of your rheumies have given you anything for pain - do they say why? I know that I would not be able to function at all without any type of pain med. My stomach doesn't tollerate anti inflamatories very well, so I take tramadol (ultram) for pain which doesn't totally take care of the pain, but usually makes it bearable. I also have a low dose of hydrocodone that I take every so often if the pain is unbearable. Being in pain everyday really stinks. I don't know if they are being more careful with pain meds with you because of your age, but I also think they should try some different things to give you some relief. I agree with Ducky about a second opinion or maybe a referral to a pain specialist. I hope you are able to get some relief. Take care
Dx:  Suspected Lupus 2004, CFS 1991
Meds:  Plaquenil 400mg, Tramadol 100 mg 3x day, Amitriptyline 10mg, Neurontin 300mg


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/16/2006 3:00 PM (GMT -7)   

dear adree,

this stinks huh?  i too got ill quite young.  joint pain started at 13.  was never treated for the RA until i was 21.

i know what you're saying regarding the pain.  some rheummies are reluctant to Rx pain meds.  can he give you an NSAID for pain?  like ketorolac or naproxin?  i know my rheummy does not Rx narcotic meds. (i can't take any NSAIDS...so he's really no help to me regarding pain). 

what about consulting with a pain management Dr?  i'm trying to find one myself.

the best to you.

erin 


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 1/16/2006 10:58 PM (GMT -7)   
Hi Adree,

I'm sorry to hear about your pain. I was diagnosed w/JRA as a child as well. You need to get your mom involved and possibly find another rhuemy as suggested for another opinion. I was not nearly in as bad as shape as you are when I was a teenager, but I do know my doctor at the time would not Rx numerous meds for me because of my age. So, in turn, I was in a lot of pain most of the time when a flare hit. My rhuemy at the time would not perscribe anything beyond a NSAID, which do absolutely nothing for me.
 
I would do as much research as possible, and find out what types of meds are out there and the pros and cons of taking them at such a young age. Then talk with your doctor and parents about the fact you are in just too much pain and need to have a more aggressive action taken to help you through this without "knocking you out" like the muscle relaxants do.
 
Please beware with the unnatural walking. Years of walking improperly caused me a lot of grief over the last 10 years (I'm 35 now.) Although having psoriatic arthrits (which affects the feet) did not help my situation - nonetheless, the mechanics of my feet were so poor that they both retaliated a week apart from each other and I was laid up for many years afterwards.
 
Take care and good luck.
**


 

Post Edited (CaMama) : 1/19/2006 7:20:27 PM (GMT-7)


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/17/2006 11:37 AM (GMT -7)   

what happenned exactly to your feet?  you might have spoken about it previously but i forget exactly.

yeah, isn't this sad.  {{{{{{{{{ hugs for Adree }}}}}}}}}}}}

i feel so bad. sad it's a sin how Dr.s make patients suffer.  it's like abuse!  seriously. 

Adree, with the Tylenol remember to be careful with that too.  it can be very very harmful to the liver.  what i hate the most is that Drs don't get it?  i mean, would they rather have people taking half a bottle of tylenol a day?  don't they realize that "proper" pain management whether it be narcotics plus tylenol, or nsaids and breakthrough opioid management is SAFER?  or is this just the nurse in me talking? 

when i was in the hospital we would ALWAYS at least every shift, assess a person's pain.  on the nursing charts, there are like 10 boxes dedicated to pain assessment!   just to make sure the patient is recieving proper management.

i truthfully told the doctor a few weeks ago how much tylenol i was taking...and i told him that it HAD TO STOP...it's not right nor healthy.  the darvocets i was on for 3 years were not working any longer.  grew tolerant to them.

so Adree, muster up all the guts you have!...you have rights as a patient to recieve proper treatment.

be strong, don't give up. 


adree
New Member


Date Joined Jan 2006
Total Posts : 14
   Posted 1/17/2006 4:27 PM (GMT -7)   
Thank you very much, erin k, well my next appointment is in 2 weeks so im pretty sure ill ask the doctor again, but, i know hell just give me another muscle relaxant, but now that i know a few number of medicines
ill mention them to him!
:)
THank you and ill let you guys know what happens!

BloodTear
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 1/19/2006 7:09 PM (GMT -7)   
I'm sorry to hear about your condition. sad
 
My doctor won't give me anything for pain either other than muscle relaxants, which I can't take during the day because they make me too drowsy and I feel "weird" on them, like I'm drugged up or something. He claims there's nothing else he can give me besides the MR's. So I know how you feel. Maybe look for another doctor. I've been meaning to do that too - I don't like the doctor I have now. eyes
 
In the meantime, I take Equate ibuprofen from Walmart. It's the only brand of ibuprofen that does anything for me, but it doesn't work that well, especially when I'm really bad. You might want to try that. :-)

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 1/19/2006 7:28 PM (GMT -7)   

Erin - my feet, when I was 25, started getting very sensitve to anything other than wearing sneakers. I started getting horrible cramps from toe to ankle that would last 20 minutes or longer. I would feel like I was bulldozed for days afterwards and my feet would just pulsate in pain threating to cramp up again...it doesn't sound like anything, but it was the most awful torture. The pain would get so bad I'd come close to either passing out or vomiting. One day, it hit so hard that I couldn't walk the next day. The following week, my other foot was just as bad.

What it came down to were (and this took a couple of years to put all together) - the mechanics of my feet were completely messed up from years of compensating years of knee pain. I also had developed mortin's neuroma, the psoriatic arthritis was settling in, and during that time I was also experiencing Raynaud's syndrom. Forigive the spelling errors, which I am sure are there! tongue

Basically I was laid up for a long time - many years. They tried numerous specialist, drugs, and therapy. Nothing was helping. I was thrown in to a terrible paranoia and depression which was worsened when they tried steroids (deltasone) on me. I went so crazy on them that my husband almost left me. about a year later, I FINALLY (after asking numerous times) got some muscle relaxants and anti-depressants. I was given Flexeril (strong, but it worked and I was in numb heaven!) and Paxil a few months later (awesome stuff as well.) In time, as I got better, we moved down to Ultram from the Flexeril and I took it at night only with the Paxil. I still have a lot of issues, I never wear anything but sneaks w/my orthodics and when I get sick or the weather turns, they are the first to tell me something is wrong.

***


 


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/19/2006 7:50 PM (GMT -7)   
Welcome BloodTear
isn't that terrible that dr.'s at times only Rx muscle relaxants for pain?  makes no sense to me at all.  i too agree you should see another doc.  what is your condition?  it's good that if you have an inflammatory disease that you're at least taking an NSAID.  just be careful about your stomach with them.
 
hey Adree!  hanging in there? :-)
 
thanks CaMama for your reply about what happened.  when i was first starting to get treated for RA and pain my neurologist & PCP had me on Ultrams and Flexeril.  i was better off swallowing tic-tacs really.  Ultrams did nothing except make me naseous and vomit & get car sick.  Flexerils just made me dizzy...so yeah B.Tear, i know what you mean by "feeling drugged and weird".
for pain management right now i'm taking dilaudid @ 2 or 4mg.  even at that it really does not make the joint pain stop.  if i'm lucky...can get at least comfortable enough to lay down.
pain's no fun...think we all agree on that.
the only "good" pain i ever had was getting my 2 tattoos!  and even that technically didn't hurt. hmmmm? perhaps i should get another tattoo?? tongue
take good care,
erin
Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.


adree
New Member


Date Joined Jan 2006
Total Posts : 14
   Posted 1/19/2006 8:50 PM (GMT -7)   
WHOA!
I was taking Flexeril too,
didnt work...but i still dont know, today my kneee hurts very bad,
and when my doctor asks when does it hurt?? mmm in the morning or at night?? well...
does it hurt veryday...welll not every day, but most of they days,.....or How does it hurt?? how long does it last>?>, ,,,, well sometimes all day sometimes hours, I DONT KNOWW
it just hurts a lot,!!! and its not like...yea my knee hurts every day for 3 hours and 45 min..oh wait no only on tuesdays and thursdays....fridays and sundays is the right knee JUST KIDDING!
THANK U!
adree

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 1/19/2006 10:03 PM (GMT -7)   
You too are funny. What can you do but have humor with all this. I get frustrated too trying to answer those questions, Adree!
 
Flexeril was my life-saver. Aside from joint pain, you have to remember I had these horrible muscle spasms, cramps, and pulsating pain. I felt like I was living in a torture chamber for 7 months! It was very strong and did make me dizzy/drugged up and tired, but the first day I took it man, I remember telling a friend on the phone, "I can TELL my feet are pulsating in pain, I KNOW they are killing, but I can't feel a thing and I don't care! It feels so good to NOT be in agony for once!" I remembering going to bed every night prior that for months wishing I just wouldn't wake up the next morning. I had no kids and my marriage was severly suffering - I figured, nothing was holding me back, I would rather be without the agony.  Ultram didn't work nearly as well, I did take it before bed - but I was tired of being so tired and I needed to get back to work and couldn't drive on the Flexeril. They added the Paxil around that time and that helped me a lot as well - at least my coping abilities when the pain would flare improved immensely.  Like I said, prior that all I did try steroids and THOSE made me a nut case. Never ever again!
 


adree
New Member


Date Joined Jan 2006
Total Posts : 14
   Posted 1/19/2006 10:07 PM (GMT -7)   
who i get really big mood swings ever since im on steroids and all these pain killers but i have ever wondered if thats the reason...

CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 1/19/2006 10:14 PM (GMT -7)   

Well, I can tell you about 48 hours after I STOPPED the steriod, I felt like a big cloud lifted and I was let out of a glass box. Looking back over my time on it (not long, a few weeks trial) I said, "who the heck WAS that person!" My husband was about to leave me due to a fight we had while on it (all my fault pretty much being a complete jerk - to put it nicely.) I apologized to him up and down and explained what happened - he was my chauffer since I was unable to drive, let alone get around on my feet. So, he HAD to listen to me on the way to my follow up.

Paranoid, mean, freaky, up and down...you name it, I was insane. Thank goodness it was only a drug trial (Docs tried a new one on me every month looking for something to lessen the pain) and it stopped when it did. I had no idea what was happening to me until it was over!

**

 


 


BloodTear
New Member


Date Joined Dec 2005
Total Posts : 4
   Posted 1/19/2006 10:33 PM (GMT -7)   
erin kachmar said...
Welcome BloodTear
isn't that terrible that dr.'s at times only Rx muscle relaxants for pain?  makes no sense to me at all.  i too agree you should see another doc.  what is your condition?  it's good that if you have an inflammatory disease that you're at least taking an NSAID.  just be careful about your stomach with them.

Hi, and thanks for the welcome. I've been browsing for awhile and haven't got up the nerve to post. cool

My condition is Rheumatoid Arthritis, among other things. I've had it since I was two years old. My pediatric doctor at the time had me on prednisone, which caused a bunch of worse problems for me, inlcuding a cataract in my eye that I needed removed. I don't recommend going on prednisone at all. The side effects are not worth it, even though it does wonders for pain.

I'm on Enbrel for my RA now, but I still need pain medication. You'd think you're asking the doctors to perform a Herculean feat by asking them for pain medication! mad


erin.K
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Date Joined Mar 2005
Total Posts : 3148
   Posted 1/20/2006 5:21 AM (GMT -7)   
Hey Adree, CaMama & BloodTear,
 
Gee that's great mama that Flexeril helped with that!  What a lifesaver.  Just goes to show that not every medication works the same on everyone.
I agree with you B.Tear....prednisone unfortunatley does relieve joint throbbing and pain and helps to get out of a bad flare....but long term use is NUTS!  mad I haven't slept AT ALL yet this week!  It keeps me awake!  Terrible!
So did you have JRA as a child Tear?  Camama, you did right?
 
Adree, a good answer to the pain question?  "I'm in a constant pain ALL OF THE TIME...with periods of ACUTE & severe pain." That covers all bases!  Hit them with that the next time.  I hate that question too. I also don't appreciate when a doc passes the comment, "I understand you are still having discomfort." 
                                                         confused  ??DISCOMFORT??   confused   
Having your underpants ride up your crack is DISCOMFORT.  Sleeping on a bad mattress is discomfort!   eyes   Geesh. eyes
What Dr.'s forget is pain is just not subjective...it is very objective as well.  If you are a good practitioner, you can see pain and measure it.  The pulse & blood pressure is elevated, there is a chronic pain posture you can see, even in someone's eyes you can see.  Dr's nowadays are not doing something very minimal yet VERY IMPORTANT...and that is paying attention and LOOKING.
 


Active, Severe RA. Crohns Disease. Chiari Malformation & Right Brain venous anomoly. Emphysema. Rheumatic Lung. MVP and Tricuspid prolapse. Had Lymes disease for 10 years.
Meds: Humira 40mg every 4 days; pred; Pentasa; Imuran; dilaudid; diazepam & too many others.

Post Edited (erin kachmar) : 1/21/2006 11:29:42 AM (GMT-7)


CaMama
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Date Joined Mar 2005
Total Posts : 1884
   Posted 1/21/2006 10:09 AM (GMT -7)   

Very good answers, Erin!

Yes, I was diagnosed at 11, my mom started investigating my complaints when I was 7 or 8 I think.

**


 


Ducky
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Date Joined Mar 2005
Total Posts : 3199
   Posted 1/22/2006 3:46 PM (GMT -7)   
I love the definition of discomfort!

Discomfort: Having your underpants ride up your crack... HA HA HA HA
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

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