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christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 6/30/2009 4:29 AM (GMT -7)   
I am in so much pain... skull I know I am speaking to a group who relates so I am putting it out there..there is it! smhair

Seriously though; I am trying my very best to maintain balance, not be angry at doctors who don't get it, not look for a Rhuemmy (but I think I may have to), not act like I am the doctor..because I am NOT. nono But my doctor is really confusing me and I know this is a confusing illness. However, I think one of my greatest issues may be not having a Rhuemmy who can make up her mind about me!! I am starting back at my graduate program in the fall which I have dragged out a little bit; now I am not working for the past year. The pain is manageable now because I have a supportive husband, kids, and parents. I suppose the medication is okay...but possibly if I had a clear diagnosis..or even just a consistent message from my Rhuemmy I may be tried on a different treatment option. I believe there is something more to help me; I have not yet had severity of certain organ complications where I think I need to be in the position where I am unable to work. But I have truly have not been able to work. Even on prednisone and plaquinil I could not work. The fatigue and pain improved a little on the combination, but not too much. However, Prednisone made me almost crazy!!! I am just one of those people. I have some brain involvement and at am prone to anxiety. On prednisone I become paranoid. Thank God I had the insight to realize at times I was paranoid... it was very frightening but I am grateful to have experienced that side of fear. It grounded me in knowledge that I am actual sane!!! cool

I have wondered if methotrexate may be something worth trying for me. I have had a hystorectomy, no more kids. I am in so much pain and know the risks. I really need something to give me a chance to work again. My Rhummy seems to not understand or believe the level of pain I am in. However, she is quick to want to put me on disability! She will also sometimes write my DX down as Lupus and other times write it down as CTDU. If I am not on Plaquinil, I would not be able to function, literally! When I am not on it, I am in so much pain and have various symptoms I can not get out of bed to shower-let alone go to doctor for blood work to see if she can capture something in my blood work or look at the rash on my skin that keeps coming and going. Even on the plaquinil..this happens if I actually have two normal days of activity, meaning I don't sit down or rest.

I am sorry for the vent. But thanks for "listening".. I am really not sure if I am asking anything or not.... I suppose if someone reads this and relates or feels compelled to provide some feedback...than that would be great!! If not, thanks for reading!!!!! :) turn
CTDU/Probable SLE- (I am pretty sure I meet thee SLE criteria-have not gotten the offical DX yet) Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, flare brought on in sun, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflamation at onset of illness, however, no markers have ever shown up in blood, ever


Plaqunil 600mg x day, Topomax 200mg day (neuropathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),

~nothing is impossible~


elcamino
Veteran Member


Date Joined Sep 2005
Total Posts : 1744
   Posted 6/30/2009 5:30 AM (GMT -7)   

I'm sorry you're having such a difficult time right now.  My rheumatologist has not fully diagnosed me with anything, except RA (I do have lupus leanings).  Although it was hard for me to continue the drill without a diagnosis, he consistently reminded me that it's far more important to treat the sx than to hang a diagnostic label on something.  Now, I don't actually care that much about the dx. 

Methotrexate, after a couple of months, became a wonder drug for my joint pain.  I was on plaquenil, and it did nothing for me.  It took the combination of methotrexate and enbrel to put the joint pains to rest, and even now I still have breakthrough pain and stiffness.  I highly recommend you talk to you doctor about mtx and just see what she says.  And most importantly, be patient.  It often takes weeks to months for any of these DMARDs to start working.  I took tramadol/ultracet while I was waiting for the drugs to kick-in.  If you can handle NSAIDS, those drugs might be more effective than tramadol.  I avoid prednisone if I can help it.  I was only it once (a high dose) for a week.  It was a great drug for me, but I'm scared to take it longer than a week or so.  It should be used as only a bridge drug, a drug to take while waiting for the DMARDS to work.

El


Current dx: Rheumatoid Arthritis
Suspected dx: UCTD/Early Lupus
Current Meds: Enbrel, Plaquenil, Methotrexate, nexium, tramadol, nasonex,Tylenol PM
Past Meds: Relafen, Vioxx, Mobic, Voltaren, Sulfasalazine, Entocort, Prednisone, Humira, Reglan, zyrtec, zegerid, aciphex


christine_rightbrain_writesjunk
New Member


Date Joined May 2009
Total Posts : 17
   Posted 7/9/2009 6:38 PM (GMT -7)   
I did not even see this post until now. I was so sick the day I wrote my venting post I forgot I wrote it!!! But thank you!!!! Ironically, I just took my first dose of methotrexate tonight..and posted about it. I am hopeful!!! I agree with you too...the dx is not as important as the treatment..I really just want to have a life back.... I want to work and stuff.. you know!! I can't take predisone for too long.. I did that once and went a little nutty!!!!! :)
CTDU/Probable SLE- (I am pretty sure I meet thee SLE criteria-have not gotten the offical DX yet) Peripheral Neuropathy, Partial Complex Seizures, Severe and chronic joint pain/fatigue, Sun sensitivity, flare brought on in sun, butterfly rash, vitamin D deficiency, skin rash in sun, Skin rashes, mouth, lip, nose sores, Hair loss, head sores, some muscle pain, Muscle cramps, Vascular: Raynoids syndrome, Hx of Pericarditis x 4, Severe Dry mouth, persistent, Thyroid Disease, hx of moderate asthma, lung inflamation at onset of illness, however, no markers have ever shown up in blood, ever


Plaqunil 600mg x day, Topomax 200mg day (neuropathy), Ultram 100mg (prn) pain, flexaral, pm for feet cramps, Synthroid .50 micro, estrogen patch, lexapro 5mg, (mild anxiety),

~nothing is impossible~


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/9/2009 6:51 PM (GMT -7)   
Hi Christine, I don't think we've met yet.  I've been a bit MIA lately!
 
We do know what the pain is like and how it completely hijacks our lives.  Some of us have to live with Fibro pain as well.  Makes me want to scream and have a fit....
 
I've heard really good things about Methotrexate as well.  I've never been on it though.  It just takes time to start working.  I noticed you're also on Plaquenil.  It will help too.  HOw long have you been on your meds?
 
I had a hysterectomy last November!  We're hyster-sisters wink .  i had a LAVH.  Only thing I kept were my ovaries.  BEST decision I have ever made!  Are you glad you did it too?
 
Keep searching for that one great rheumy.  I think most of us have had to go through more than 3 to find a good one.  I'm starting a new one because mine has moved to another province mad .  So here we go again!  In the meantime, if you need a specialist to help you organize all your meds, symptoms, pain, etc, etc, an Internal Medicine Specialist would be extremely helpful.  They know everything!  I love mine.  She's my medical angel.  I know I'm well taken care of in the interm of not having a rheumy. 
 
Hot baths (if you can tolerate them), gentle massage, and relaxation all help with the pain.  They're not perfect, but a little relief goes a long way.  Hope you have a better evening,
 
Blessings
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in to be content.Phillipians4:11-13
35 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety, Chinook migraines. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 Co-Moderator for the Lupus and Fibromyalgia forums

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