Have Had all the PAIN I can take

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moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 10/27/2008 4:04 PM (GMT -7)   
I have such severe Dejenerative Joint Disease, and have had both hips replaced and both knees replaced, as well as four back surgeries, on the 13 of NOV 08 I will have my left shoulder done and then my right, also my jaw has severe TMJ. HOW does one continue to deal with this pain? I can't take NSAIDS any longer as it has caused 3 ulcers. I have taken pain meds as needed over the yrs, but now it is pain 24 hrs, 7 days a week! I am going to a Rheumatoligist for the first time on Wednesday. I am so DONE with the pain. I can not get out of bed without crying, or stay in bed without hurting. can not stand or sit long periods. Can not walk without a cane. what are my options, a wheelchair???? I hope not, as I am only 57 yrs old> can someone tell how you deal with so much pain?
Thank You
Patty

Post Edited (moondancer) : 10/28/2008 11:35:00 AM (GMT-6)


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 10/27/2008 5:03 PM (GMT -7)   
scool  PS I have tried every type of anti inflammatories available over the yrs and have taken anti depressants for the pain for many years as well. Looking forward to hearing from some of you. Thanks

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 10/31/2008 8:50 PM (GMT -7)   
Patty, I'm so sorry to hear what you are going through. It sounds like you need to see some new doctors who might have a new perspective on this problem. Why has it taken you so long to see a rhuematologist? What meds are you on? Who have you been seeing for the degenerative joint pain and all these surgeries? Are you getting enough sleep (probably not)? Are you drinking enough water with your meds? Are the doctors suggesting anything other than more pain meds?
 
You should not have to live like this. I would assume that you have not tried any of the biological drugs out there yet if you haven't been to a rhuemy yet. Was your appt this past Wed? How did it go? Do you have a  night guard for your TMJ? That thing is a life saver. You get that from your dentist....and it helps two-fold...it helps the TMJ, but the stress and pain you are incurring is probably causing you to clench your jaw making the TMJ even worse.
 
Sorry it took so long for someone to get back to you. Hopefully once this weekend passes, people will be back online a little more.
****

 


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 11/1/2008 4:56 AM (GMT -7)   
CaMama, Thanks for responding. I did go see a Rheumatolist for the first time this past week. and in answer to some of your questions. My Family Dr is very young and new, and I am new in town as well. I have only been going to Ortho Drs when the pain became so overwhelming and I needed another joint replaced. The reason it took me so long to go to a Rheumy is because ( and this sounds stupid & silly) but I thought a rheumy was just for RA. None of my docs over the years have ever even suggested it. My family Dr is very young and new as an MD, he seemed offended when I told him I was going to a Ortho Dr for the pain in both rotator cuffs recently, and gave me a shot of cortizone on his own.(didn't work) I did go to a Ortho, and of course now I am scheduled for 1st surgery on the 13th of Nov, for yet another degenerated joint, My family Dr just looked at me when I told him about the jaw and both rotator cuffs hurting and popping, and asked me if I had ever been to a phsyc dr and if he had ever diagnosed me with a "Personality Disorder"??? what that has to do with pain I am not sure, but of course I told him I had been for counseling way back in '90's and was diagnosed with DEPRESSION because of pain. and thats why I was taking prozac 80 mgs. (duh)
Now I am pleased with the Rheumy I went to, as he made me feel human and not crazy. He said NO ONE should live with the pain, and even though there was no medicine to cure or treat me, like he could if I had RA, I would be more comfortable on pain meds and gave me PLENTY of Vicadin without making me feel like a drug addict that was asking for pain meds. He gave me a referral to an excellent Pain Management MD and I AM GOING TO GO TO HER! I am sick of Doctors, but I am sicker of the pain.
Do I get enough sleep? Oh heck NO. I have had insomnia for so many years! the family Dr gave me Benadryl to help sleep. (not working) I was in the hospital for 4 months last year for a hip replacement revision and infection and was given Ambien, but my insurance won't cover that now(medicare).(I sit on computer most nights and play games). years ago I was taking Clonazapam for the anxiety. but I have not brought myself to go see a Phsyc Dr since moving, for that medicine (too many Drs already) I have severe Muscle spasms that start at the bottom of my spine and in waves go to the neck. It takes my breath away. BUT again my Dr thinks I just want drugs, or I am crazy. I can not stand long enough to wash the dishes or cook. Hoping the pain management Dr treats me for all of this!
I have also finished all the necessary procedures to have lap band surgery to take some weight off my joints. waiting for insurance to approve it.
TMJ thing. No I don't have a night guard. It mostly just bothers me when I chew or talk. It pops so much. I contacted a maxiofacial Dr. and they wanted my Family Dr to order an MRI of the jaw.(to save me a copay for him to write a prescription) and when I asked him to do that, he got furious and told me he couldn't do that for ANOTHER DR. So I just left that in Limbo for now. I am too overwhelmed to even try to deal with that at the moment.
I know I need to change Drs, But he has all my entire workup papers for my lap band surgery and I need his referral letters for that. So I am stuck for now
What Bilogical drugs can I try? I will try anything that works right about now. The pain meds have been working, but they make me so sensitive and emotional and even sometimes nervous and mean to my husband.
OK I will stop rambling on and on. I just needed to vent all of this as I have never had someone to talk to, that understood PAIN. I thank God I found this Forum because just reading about other people with the same thing as me is comforting to know I am not a freak! Even my Rheumy has not had a patient with ALL joints replaced, especially for a 57 yr iold woman
I appreciate all the advice and suggestions I can get here and THANK YOU so much for responding.
I am sure I won't be posting this long of a post again. (sorry) Thanks for listening or reading (ha). sorry if I sound like I am feeling sorry for myself!! I just feel so overwhelmed lately.
God Bless, and hope you have a pain FREE day.
Patty
_____________________________________________
 Degernative Joint disease, Depression from pain, Hypertension, Ulcers_____________________________
 Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
 Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Angiogram, Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery
 The hardest lesson in life to learn...Is which Bridge to cross and which one to burn.
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/1/2008 9:16 AM (GMT -7)   
Hi and I'm so so sorry you are in this much pain sad I read your post regarding your primary care doctor and while I realize he is young that is no excuse, please look around and find one that is better suited to your needs.  If you have to go to certain doctors on your plan that is fine, make a list and go until you find one that takes your needs seriously.  Your doctors behavior is appalling and not okay.
 
You can have access to all of your medical records from your doctors office without ever making another appointment with him or ever going back to that office.
 
Again, I'm sorry you hurt so much, but please find another doctor you don't deserve to be in this much pain and I think you asked about the biologics? they are used for RA, psoriasis,and some other inflamatory conditions.  I take it for my RA and it has helped and they are usually taken when patients have exhausted other medications such as the DMARDS, (Plaquenil, Methotrexate) etc and they need something more.  That was the case for me, I was on both of those and they just were not enough and my joint pain was increasing.
 
Let us know how you are doing

moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 11/1/2008 4:20 PM (GMT -7)   

Thank You so much momto3,for the kind words. I assure you I WILL find a different Dr. as soon as my lap band surgery takes place.it has taken me almost 8 months and I just finished up all the pretesting procedures and 6 months of weight ins with this DR.

Let me ask you a question. Will a Pain Managment MD give me what ever it takes to ease the pain, should I not be afraid to ask for what it is I need? and exactly what do I say when they ask me what kind of pain pills I want? I did not know which ones to request when he asked me/

What are my options besides vicadin? that might work better?

Thanks again.



momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/2/2008 9:04 PM (GMT -7)   

Hi there,

I don't know if a pain management doc will give you whatever you ask for, but I do think if you go see one you need to be honest and upfront about the level of pain you are in and what you are currently taking and that it just isn't working.  I've taken a lot of pain meds over the years due to surgeries and some for the RA and vicodin/darvon are fairly weak pain medications.  Yes, it is okay to ask for a certain medication.  This is the issue today, so many fear they will look like an addict if they are in pain and ask for pain medication.  While it can be easy to cross the line of needing the pills when you are no longer in pain, I think there is such a stigma in society that it prevents some patients from getting the pain management they require.  I  have a prescription for darvon and a couple of months back I had it filled.  Well a couple of weeks ago I was having terrible joint pain so I called in a request to have it refilled but I waited as long as I could because I was afraid it would look like I was just wanting pain pills, even though it had been a couple of months, I worried that it wasn't long enough and that someone would think, she just had a script for those a couple months back!

I understand sticking it out with the one doctor until you get your surgery and hopefully that will ease some of your joint pain.  I would see a pain specialist, you have had a lot of surgeries! Don't be afraid to advocate for yourself :-)


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 11/3/2008 3:25 AM (GMT -7)   
momto3,
again thanks for the information. YES I am calling the pain management Dr that the Rheumy referred me to, TODAY, for an appointment Your words of advice help me in want I want to ask her. I am not going to be afraid to tell her the level of pain I am having and that the vicadin doesn't work. I have a pretty high tolerence to pain meds. I have taken many over the yrs and as you said I always knew when to draw the line between "NEED" for pain meds, and "WANT" meds due to an addiction. only one time about ten yrs ago I thought maybe I was "becoming" addicted and they went FLYING out the car window. now it is simply because the pain is so overwhelming that I just want to have some quality of life, and be a little more compfortable. It seems that Drs. have NO problem not letting a patient cancer suffer. so what is the difference. we are all IN a different level of PAIN!
I hope you are felling much better and again Thank You
_____________________________________________
 Degernative Joint disease, Depression from pain, Hypertension, Ulcers_____________________________
 Prozac 80 mgs, Synthroid, Ultram, Metroprolol, Lipitor, Norvasc, Vicadin, Benadryl (for sleep)__Vitamin D&K
 Bilaterla hip replacements, Bilateral knee replacements, Titanium Spine Fusion (L4-5)(4 spine surgeries)Angiogram, Oblation for SVT(supra ventricular tachycardia) Biopsy of left Optic Nerve, left shoulder surgery
 The hardest lesson in life to learn...Is which Bridge to cross and which one to burn.
 


momto3
Veteran Member


Date Joined Nov 2006
Total Posts : 1331
   Posted 11/3/2008 11:33 AM (GMT -7)   
Hi there,
 
This is true, there are varying degree's of pain and I've never had cancer myself but for those patients who are terminal, yes I think that is an entirely different level of pain that we cannot even begin to imagine.  It is good that you have an appointment with a pain management doctor and I'm sure she will have more up her sleeve than the traditional vicodin since that is pretty puney compared to some pain meds!  Thanks and I am feeling better...as long as I stick to the Methotrexate and Enbrel, although there are days when the injections get the best of me,  my pain is bearable for the most part, but I don't ever see myself waking up magically pain free rolleyes Which is what we all hope for :-) I had almost reached this while also taking the plaquenil but had to discontinue it due to eye issues.  Now there really isn't an answer as to how to get my joint pain under control so I share  your frustration!  It is something I'm learning to live with as the years pass as depressing as that sounds, and I'm only 37 so I have to think, what will I be like at 50, 60 even 70? sad I can really work myself into a tailspin if I think about it too much!
Hang in there and hope the pain management doc has an answer for you :-)

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 11/5/2008 12:32 AM (GMT -7)   

Oy, I hear you! I'm 38 and wonder what the future holds for me and my mobility as well. I had such excruciating pain at 25 that I could barely walk for years. I spent 6 months going from specialist to specialist trying to figure out what what was wrong, tons of tests, x-rays, and bone scans, a variety of cocktails to try for the pain...all to be told by each and every specialist that I must need to see a shrink since they can't find the problem. Talk about a deep depression after being in so much pain and told I was crazy!

Patty, I suggest you see your dentist about the jaw as well. A good dentist should be able to take care of TMJ. Wearing the splint/nightguard will help the popping. They can be expensive if not covered on your insurance.

I agree with Mom that you need a new primary. The biologicals are for RA, but if they don't think that your problem may be stemmed from a form of RA, they may not do anything for you. You may have to try a variety of pain meds before you find the right one/mixture that help you best. 

Don't let their negativity get to you - when they have no idea what's wrong, it's the patient that is always crazy. Be persistent, stay aware, do your research, and ask questions. We're here for you any time you need to vent. Keep us up to date on your situation.

***


 


moondancer
Regular Member


Date Joined Oct 2008
Total Posts : 68
   Posted 11/6/2008 2:05 PM (GMT -7)   
Well CaMama, thanks for the input and my new Rheumy says all there is to relieve OA or degenerative joint disease is pain meds..so thats what I am doing for now. I am going to go to a pain management Dr soon and see if they can regulate the type of meds I am on . Today is an especially painful day for some reason. Again thanks to everyone for their support

CaMama
Veteran Member


Date Joined Mar 2005
Total Posts : 1884
   Posted 11/7/2008 9:17 PM (GMT -7)   
 i'm sorry to hear you are in so much pain, I hope the pain mangement doc is good and helpful for you. It's hard to believe that with all the meds they have out there all they can say is 'pain meds' is all they have. I hope that changes soon.
 
Hang in there and let us know how your visit with the new doc goes.
***
 

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