Having the worst pain I've ever had....

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seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 2/20/2007 3:24 PM (GMT -7)   
I have AS and last night I was ready to just give up. I hurt everywhere. My ankles. My knees really, really bad. I could hardly walk, bend them at all. They felt like they were on fire and something was jabbing them. My hips hurt so I couldn't lay on either side and to top it all off, my back hurt on the right side middle. All I could do was cry. I've taken Vioxx, Bextra, Celebrex, Methotrexate, Sulfasalazine, ibuprofen, tylenol, and aspirin. The only thing I'm currently on is the aspirin. The sulfa gave me mouth sores and I took folic acid and the standard formula to swish with. The methotrexate I'd taken before and had no problems with it but it wasn't giving me much relief. So after we discovered I was allergic to the sulfa I went back on the methotrexate. This time around it gave me mouth sores, so I quit taking it. The aspirin isn't working, celebrex doesn't work etc. AAARRRRRGGGGGG!!!!! I can't afford to take Enbrel, Humira or Remicade. My co-pay, just the co-pay  mind you is $700 fricking dollars for each dosage. So out the window goes that. I don't qualify for the drug assistance program that Montel is an advocate for. We have health insurance, for which I'm grateful. I just don't know what else to do. I cancelled my appointment with my rheumy because I'm tired of being a laboratory. Any one out there had luck with something else? If so, I'll remake an appt with the doc and talk to him about it. As it is, my hubby is going to have to take me to the urgent care I think. This just sucks and isn't worth it anymore. I don't know how my Grandma did it. She had RA so bad, so bad. Yet I never heard her complain and she was always stretching and trying to move her joints around. She said it was helping to keep them from freezing in place. She had such a strong spirit. I miss her and would love to be like her. But I'm not. Instead, I'm a whiner.  
Take Care,
               Chelle
    "God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference."
  DX: ankylosing spondylitis, periferal neuropathy, chronic migraines/headaches, depression/panic attacks, bi-polar, hypothyroidism, hypoglycemia, sleep apnea
  RX: synthroid, estradiol, prozac, lamictal, inderal la, klonopin, seroquel, imiprimine, aspirin, (relpax, maxalt, phenergan, esgic plus, xanax, PRN for migraine)
  Surgeries: hysterectomy 1997, tonsillectomy 2001, deviated septum 2005, cataracts (both eyes) 2006
 
 


Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/20/2007 5:37 PM (GMT -7)   
Oh my, I'm SO sorry. I also have AS, so I can really understand. I'm flaring right now and haven't slept much all week. No matter what I do, I can't seem to find a confortable position. I can't sit, stand or lay down.

I have my first dose of Humira sitting in my fridge, but I have had a sinus infection and now it seems to be getting into my chest, so I have to wait until this clears up before I can even try it.

I think you need to see your Rheumy and talk to him about the possibility of getting you enrolled into a clinical trial. Perhaps that can get you the meds you need without the exorbitant co-pays.

I hope you find some relief soon.
Keah a.k.a. Wormy
 God helps those who help themselves.
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Keah
Veteran Member


Date Joined Nov 2003
Total Posts : 7314
   Posted 2/20/2007 5:42 PM (GMT -7)   
Do you have a Pain MGmt Doc? You really should get a referral to one. I don't think I'd have made it this far without the wonderful help that I've gotten from mine. He has been wonderful at addressing my pain and muscle spasms.

erin.K
Veteran Member


Date Joined Mar 2005
Total Posts : 3148
   Posted 2/20/2007 6:48 PM (GMT -7)   
dear chelle,
 
oh my.  have you tried calling directly the drug company that puts out Enbrel? (or whatever one you were going to use).
they have a private assitstance program.
 
but i agree with the above.  better pain meds & management.
 
i swear by Valium for the AS back pain & spasms.
 
the RA i have is quite severe & disabling and strong pain meds are needed.  if not...i would be going through what you had to go through...crying, suffering.  and i had to do that sooo many times.  needing to go to the ER a few times a month just for pain & my joints.
 
but the ER is necessary sometimes. even though we have a chronic condition...it spikes to acute phases where IV pain meds & steroid drugs are needed.
 
i'll be praying for you.
Arthritis Forum Moderator
Active Severe Rheumatory Arthritis. Crohns Disease. A.Chiari Malformation & right brain venous anomoly. Partial Complex Seizures (under control!). MVP & Tricuspid Valve Prolapse. Rheumatic heart & lung. Previous Lymes Disease for 10 years.
Meds: Remicade infusions 300mg Q3weeks; Intra-articular knee injections when needed; Mercaptopurine 50mgQD plus 75mg weekly; Mesalamine 4GramsQD; Prednisone 20mgQD mantainance; Entocort 9mgQD; Meclizine; Augmentin; Tigan 300mg; Reglan; LidoDerm Patches; Diazepam 5mg for AS back spasms; Restaril; Dilaudid 4mg tabs for pain. 


curley
Veteran Member


Date Joined Mar 2005
Total Posts : 4305
   Posted 2/20/2007 7:31 PM (GMT -7)   
I feel for you cause I can remember times that I could not afford to get my meds so I know where you are comeing from. When I was put on Humira I was in bad shap to the point I could no longer walk and there for I winded up in a wheel chaire. I told my Rheumatolagist that I could not afford Humira because even thoe I had insurance my co-pay was $150.00for one shot so that was $300.00 so with that and all of my other co-pays it was impossible to do.So my Rheumatolagist told me that she had some Humira that she could give me and the first time she suplyed me was three months worth and what it was when people would come in and get there first shot and winded up not being able to take It. they have to do something with it because they did not want back and the Pharmacutial co would not take it back either, so they tried to help people that needed but could not afford it.So you may want to ask your Rheumy if they could help you out,you may be surprised.I also agree with Keah,if you are not seeing a Pain MGM you may want to do so.They can help you get your pain under control and that is what they are there for is to get you on pain meds that will help you have some what of a normal life.For me I'm on Oxycotin and fentanyl pain patches I'm currently on the 50's in the pain patch.I do hope that you get some relief soon. Oh and i thought I would tell you that if you don't all ready have a heating mattress cover you may want to get one.I turn my on low and it helps ease my joints and for me it is better that a heating blanket.
Curley
.........
 


Savvy63
Regular Member


Date Joined Nov 2006
Total Posts : 450
   Posted 2/21/2007 1:41 AM (GMT -7)   
The folks above have given excellent suggestions. I just wanted to say that I hope you find some relief soon and to offer my support.

{{{{{{{{{{{{{{{{{{{HUGS}}}}}}}}}}}}}}}}}}}
God Bless!!!!!~Savvy~ 
depression                                                Alleve
DDD- MRI confirmed                                    probiotics
Arthritis-xray confirmed                               
disc slippage in neck-MRI confirmed               Oxycodone-10mg 3xday
Fibro- night sweats                                     B-12
IBS-D-gas                                                 
Ulcers-endoscopic confirm                           
dishydrotic eczema                                     
Costochondritis                                          
 


yalinda
Veteran Member


Date Joined May 2006
Total Posts : 1179
   Posted 2/21/2007 3:04 AM (GMT -7)   
((((((((((((((((((((((HUGS))))))))))))))))))))))))

AkiPuppy
Regular Member


Date Joined Feb 2007
Total Posts : 52
   Posted 2/21/2007 2:07 PM (GMT -7)   
*Hello,
I am so sorry you are experiencing so much pain. I have been there and done that. Everyone had suggestions. I pray you can find one that helps you. Take care and God bless.
In God's Love!
AkiPuppy

seechell
Regular Member


Date Joined Sep 2006
Total Posts : 362
   Posted 2/21/2007 5:36 PM (GMT -7)   
Thanks to all of you and for your advise. I'm going to make an appt. with my rheumy tomorrow and hope I can get in soon. I'll talk to him about all the options and see what he says. I'm just not dealing well with the AS flare and my bipolar is on the rampage too. So I'm a mixed up heap of I don't know what. I'm trying to tread water until help comes!

Take Care,
               Chelle
    "God grant me the serenity to accept the things I can not change, the courage to change the things I can and the wisdom to know the difference."
  DX: ankylosing spondylitis, periferal neuropathy, chronic migraines/headaches, depression/panic attacks, bi-polar, hypothyroidism, hypoglycemia, sleep apnea
  RX: synthroid, estradiol, prozac, lamictal, inderal la, klonopin, seroquel, imiprimine, aspirin, (relpax, maxalt, phenergan, esgic plus, xanax, PRN for migraine)
  Surgeries: hysterectomy 1997, tonsillectomy 2001, deviated septum 2005, cataracts (both eyes) 2006
 
 


Ducky
Veteran Member


Date Joined Mar 2005
Total Posts : 3199
   Posted 2/21/2007 7:49 PM (GMT -7)   
Help is here.. it's us! :) Hang in there Chelle.. we will get you through this... Did you get a hold of your rheumy? When is your appt? Thinking of you...

Duck
Moderator of Arthritis/Epilepsy Forums
Confirmed Diagnosis of - Psoriatic Arthritis/Spondylitis/Graves Disease/GERD/Scoliosis/Hiatal Hernia/Graves Disease of the Eyes/Chronic UTIs
Current Meds -  Enbrel/Prevacid/Synthroid/Nitrofurantoin
Past Meds - Inderal/PTU/Prednisone/Voltaren/Feldene/Mobic/Cortisone and Steroid Shots
Additional Supplements - Multi-Vitamin/Bromelian/Acidophilus/Green Tea
 

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