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Introducing Myself-PVNS-Never ending Pain cycle

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Posted 3/30/2013 7:37 PM (GMT 0)
Hello Healing Well members! I am new here, wanted to introduce myself and say thanks for having aplace like this to help people when they have no one else to talk to.

My name is Marissa. I was diagnosed with PVNS in May 2012, which is a disease where tumors grow in the lining of my left hip joint. I've had 2 surgeries, have screws in my hip, and constant joint pain as well as sharp shooting pains with every step I take. After my surgery in July, I was in a wheelchair for 12 weeks because I had screws put in my hip. Since the disease came about when i was pregnant, it took quite some time to actually get diagnosed and get them removed, so i was on a lot of pain medicine for a long time, and my system was getting used to it, causing them not to work as well in my body. So I was on dilauded, oxycontin ER, Percocet, and Valium for the first 2 months after surgery, now i have weened myself down to just Vicodin 5mg.

My problem/question for everyone is about pain management. I have a wonderful primary care dr who gives me my vicodin, but my orthopedic dr, while a great surgeon, is quite mean, has no bedside manner, and really makes me feel like one of those "drug seekers" as they like to call it. Reading some of your posts, you list the medications you are on, and i was just wondering how you find a dr who understands chronic pain and doesn't make you feel like a criminal for wanting stronger medicine? I am so irritated at home because of my pain level, and my husband can't understand why bending over to pick up laundry is so painful, just an example. So it is difficult to be a good wife and mother when basic daily functions can't even be achieved.

Thank you for reading my long winded post!

Marissa B.
Posted 3/30/2013 8:27 PM (GMT 0)
Hello Marissa!...and a very warm and sympathetic Welcome to you!

Were so glad that you have found this chronic pain support forum, and we look forward to visiting with you! First off!...please know that you are not alone when it comes to understanding chronic pain, and we are very sympathetic to those who are suffering.

As I read through your post, one thing that stuck out is the fact that you are very young! (25yrs young)wink Dr's and PM's with poor bedside manners are a common problem all around the country, but we find even more so if the patient is young. I don't know if it is the fear that abuse is possibly greater with the younger patients or if it is something else.

Also, no one can really understand chronic pain unless they actually have experienced it or suffer from it. So the fact that your husband cannot understand is pretty common. This is where it is very important and helpful to join a forum that deals with chronic pain, like you have found here.

I really must say that this forum has helped not only myself, but hundreds.... if not thousands of members and or visitors around the world. Our members also have a broad range pain issues, and they are very knowledgeable. Many of them are in fact nurses with several years of experience in the medical field.

I would like to ask you if your husband goes to your appointments with you? If not, then I suggest that he do so. Also, if you have other family members who see the pain you are in...I would suggest that they also consider going with you.

Dr's!...oh boy!...there are some real buggers out there! Just be honest with them, and let them know that you are hurting...and it might be wise to bring a pain journal with you, if you are keeping one. If you are not getting the attention that you need concerning your pain, then you may have to seek patient care elsewhere.

Keep checking back here for replies from the members, and since it is a holiday weekend, it may be a little slow.

Again Welcome!...and Enjoy the forum!

SE
Posted 3/30/2013 10:59 PM (GMT 0)
Hello Marissa welcome to the forum.

It is kinda slow as Michael says,holidays. I agree with him as we see many younger Cpers with the same complaints as yours and I think they forget pains certainly has no age limits.

With all the hoopla going on with opiates these days they deem to not want to deal with anyone who might set off alarms. Sadly age does and your in that age group they say is the age of higher instances of drug diversion and abuse issues.

To answer your question,I pick my Dr like I would shop for a car. I get on this computer find the right category and specialty,check the AM A to see whether he is or ever has been sanctioned by any agency,has any malpractice against him,or has ever. Check to see if he board certified and then Google his name to see what jumps out. Take that part with a grain of salt as some people just like to complain right?

Make sure he takes insurance,Medicare,etc. Call the office and see what modalities he uses and offers and they won't generally tell you if he uses specific narcotics but most times if he doesn't. doesn't. See what I need to get a appointment such as referrals and get in for consult.

From there I see how the staff is,keep my ears open in waiting room as you hear stuff you know. Then just check him out. Is he rushed,to busy to talk,is he rude and not listening to me. What he has in mind for treatment options available.

Most of us don't find a fit on the first Dr. It may take several. Once you click with one you will know. My Dr is a part of a team that consists of me,him,the therapist,my pharmacy and insurance company. It takes all of us working together to keep me unhealthy and happy and we all have a common goal,achieving the best quality of life I can find.

Hope this helps and welcome.

Vickie
Posted 4/4/2013 12:23 AM (GMT 0)
Thanks to both of you. My husband used to go to all of my appt's, now that I try to drive anywhere I can, I just go by myself. He does seem to understand my pain, but I think it's the constant excuses of why I didn't do this or that, that he gets frustrated with. It's very difficult to not talk about something that consumes your life. That's why right now no one is sure if my tumors came back after my surgery, there's really no way to tell without diagnostic surgery, so pain control can at least help me live life and not just survive it between procedures...

I do need to go Dr hunting for a new specialist, especially after dealing with him this whole tine just to tell me at my last appt that he is not qualified to handle thus disease properly. Those were actually his words. It's so bizarre I can't even make that up lol

Thank you very much for your help so far, and again, I hope my long posts don't scare you away.

If there is anything I should be doing differently in this forum, please let me know so I can stay welcomed here!

Hope everyone had a great Easter weekend! It was my 21 month old's first egg hunt!

Marissa B.
Posted 4/4/2013 2:24 AM (GMT 0)
Lots of doctors tell patients that they aren't equipped to deal with a particular problem. And you condition is rare.
However, that statement should have been accompanied by, so I talked to some of my colleagues and everyone agrees that so and so at such a hospital or so and so at such a clinic are the best in the field.
Person A takes your insurance so if you would like I will call over there and get you an appointment and send your records over.

Or something. Without that extra part the doc is just a jerk.
Posted 4/4/2013 11:26 AM (GMT 0)
Hey Marissa -

Along w/ everyone else, I want to welcome you to the CP forum of HealingWell. First of all - long winded posts are just fine, lol... I do it all of the time :) No worries.

The others expressed many of my own thoughts re: your situation. I definitely think you need to find a doctor that is kind, compassionate and that understands pain issues.

The biggest encouragement that I can give you is to know that there is nothing wrong w/ taking medications to treat chronic pain. Just as you would treat any health/pain issue - from high blood pressure to diabetes - it's the same type of thing. You have a painful diagnosis.... and there's nothing wrong w/ seeking treatment for this!

As SE said - there are many doctors out there that just do not understand the treatment of chronic pain.... and that are prejudiced about using narcotics. Those are NOT the doctors you need.... You need to seek someone out that will listen to your issues and treat you appropriately.

So - just be confident and advocate for yourself. Be open and honest w/ the new doctor.... let them know about your pain issues - and how they affect your daily life.

I personally would seek out a referral to a pain management doctor....

Good luck to you... and look forward to getting to know you better. Hope you had a good Easter, watching your little one hunt for eggs :) I have twin daughters that are 2 1/2... and it was fun watching them, too!

Take care and keep posting! --Tina
Posted 4/4/2013 2:08 PM (GMT 0)
Hi Marrisa & I too would like to welcome you to the forum. I am sorry to read that you are still having so much pain. After two surgeries you would hope that the pain would be at a minimum. Yes, you sure do need a new ortho. You can check with your heath insurance hopefully online and see who is available and call the ones listed to see who treats your condition.

Also, careful when you are trying to get in with a pain mgt dr. There are two different types, one will do injections & procedures only-no medication rx'd. The other will do the same but will also rx meds. If you get an appt with one, call before your appt & make sure he/she will rx meds. Just tell the person answering the phone just what I have written here. You will not sound like a druggie asking this either

Its tough when the spouse or family does not quite get it when we have so much pain. I am betting with you having surgery he thinks like alot of people that everything is suppose to be fine and you not be in so much pain.

That is great that your PCP has been good about rxing your pain meds. Most surgeons will not rx meds long term so its good you have been helped. I think someone mentioned you being young and so many drs will not rx something to someone young. The problem is pain has no age limit.

Anyway, I wanted to pop on & say hello & welcome aboard...Susie
Posted 5/28/2014 12:57 PM (GMT 0)
Hello im new here,im looking for anything i can on pvns,since i was 19 iv suffered with it in my right knee (im now 39)i was told for years n numerous xrays n doctors it was arthritus,it wasent till i moved and changed doctors 4years aago i had got to the point then that most days was painfull and sometimes unable to leave the house,she sent me for an mri scan where they found it.since then i have had two ops to remove it one worked for 9months the second for 7months,it comes back worse each time,im unable to have a knee replacment or radiotherpy as i am too young the ills that could help i was refused funding for as course is expensive,im refis there anyone that can give me tips on whats worked for them with the pain n stiffness ??
Posted 5/28/2014 3:11 PM (GMT 0)
dv just to let you know Marrisa has not been back to the forum since her post above. Since this is an older post please start a new thread on this so there is something more current.

Thanks.
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