Good Luck Today Karen (Ouchyk)

[MikeK]

Hi Everyone,

The pain from her PA has seriously diminished Karen's quality of life. So much so, that her rheumy has referred her to a pain management clinic. Her appointment is today. From what Karen tells me, this particular clinic:encompasses a multidisciplinary team that includes specialists in anesthesiology, neurology, physical medicine and rehabilitation, internal medicine, psychology, nursing, physical therapy and complementary medicine.Source: http://www.psoriasis.org/forum/showthread.php?t=18088.

I'm hoping and praying that they can help Karen and that her pain becomes nothing more then a painful (pun intended) memory.

Mike

[alexnhaileysmom]

good luck karen i pray for you a pain free life. I hope these drs can give you something that helps you feel more comfort than pain. (((((((((((())))))))))

[Geffy]

Wow! Best of luck! I'll be thinking of you!

Geffy

[quickcobra2003]

Karen,

I hope the best for you, let us know how it turns out. My Dr.'s have a standing offer for me to go to a pain management clinic. I have resisted (stubborn) but know I will end up there sooner or later.

[alli]

Best of luck today! Hope this program offers some relief for you. We're eagerly awaiting details of your day.

[SandraJean]

Karen,

Thinking really good thoughts for you today and am anxious to hear all you learned and get a report of how much it will be helping you!

Take care,

Sandy

[ouchyk]

Hi,

Thanks for all the kind words. :) The appt took a lil over an hour, I was seen by three doctors. They all decided that my pain was PA related :p :eek: :p .

I had to fill out reams of paperwork, they had a chart with a body where you had to make x's where your pain was. No, I didn't color the whole thing or put a giant X on my entire body lol. I did make lil x's where I have pain and then made a bigger one going across my lower back.

They had all my MRI and Xray reports as well as comments from previous orthos and my rheumy. I was gone over from head to toe.

We are going to work on the worst part of me first then go from there.

The plan is to have a block done for my sacro, a cortisone injection done by flouriscope on March 8th. Followed by intense physical therapy with manipulation and then exercise. They would do it sooner only I have other health issues that need to be dealth with.

There is a fly in the ointment as I need to get clearance from my hematologist and I honestly don't know if she will okay this proceedure I certainly hope she will.

I am also worried that the block wouldn't hold but she told me it should with proper follow up. Not guarenteed but what in life is?

Regarding medication I'm staying on status quo, they said I'm on the right regimen, we will re-visit after the block. We talked about nuerontin ( sp ) and some other drugs, I'd rather save those for whenever if ever at all. If I think I'm in big trouble I can call.

As far as CAM I was told I am doing and have done everything that they would recommend for now. PT, heat/ice, jacuzzi...I thought I would walk out of there with some herbs, accupuncture, bio-feedback, etc. I was a bit disapointed with that. Perhaps they are saving those treatments for a later date...Right now they want to get to the root of the primary pain and go from there.

One step at a time.

Thanks again everyone, Happy Valentines day to you all.

Big hugs,
Karen

p.s. Jesselou thanks for your insight I sincerely appreciate it.

[crimekate]

I sincerely hope the pain management folks can help you, and I don't want to discourage you at all. But I have been there and back with pain management approaches, and my experience has been that it's really all guesswork. (I've been to three different pain management centers as a patient, and a few more for consultations - all trying to find SOMETHING other than fentanyl and percocet that would help my pain).

There is a lot of research on pain, and most of what they actually *know* (about nociceptors and such) is of no clinical use. What they actually do is all trial and error, and in large part, myth. For example: anticonvulsants (e.g. neurontin, depakote) and tricyclics (elavil/amitryptiline, desyrel, pamelor) are the new "revolutionary" pain drugs - they work on *some* types of pain (specfically neuropathic pain). No one really knows why, but there are theoretical mechanisms of action proposed (the anticonvulsants supposedly work by relaxing neural spasms). The problem: most of the PA pain that most people experience is NOT this kind of pain, so these meds won't work. But the pain people will have you try them! (and sometimes, make it out like it's your fault when they don't work. For the record, I did not try neurontin - too sedating. I did try the tricyclics - no effect whatsoever. Thankfully, they didn't make me gain weight - a common, and not exactly benign side effect - and one that could make things worse for some - if your knees and ankles are affected, for example).

Ditto on the nerve blocks/cortisone. I was literally FORCED to have cortisone in my spine (fluoroscope procedure) before my rheumy would let me have Humira - I personally feel like my pain management guy knew it wasn't going to work - especially since we discussed it when I first started seeing him 8 months before - he didn't want to do it then because he didn't think it would help. It didn't help, and in fact made my pain MUCH worse for about 3 weeks (thanks, doc!), but he got to bill my insurance 10 grand. Nice little thank-you kickback between docs. (The pain guy referred me to the rheumy initially).

Physical therapy was also idiotic. I already exercise, and it helps my overall sense of well-being, but my pain is deep inside my spine - it's not an injury/ muscle/skeletal. Physical therapy is a HUGE racket in my opinion (for anything besides injury rehab).

As I've said - I really really hope that this all works for you. I just don't want you to put too much faith in something that's basically 19th century medicine. I also don't want you to let them put you through invasive and unpleasant things - or make you feel responsible when a treatment modality doesn't work - because they act like they know what they're doing. They don't. It's certainly worth trying different things to find what works best for you - but that's all it is.

I've been through all these things to try to not have to take narcotics - and now, all they can do for me is give me the narcotics. It's taken me a long time to accept it, and I suppose having gone through everything else, it makes the docs not hassle me about it. I have to go to the "pain center" once a month (prescription requirements, of course - can't have a renewable scrip). My doctor sees me for about 90 seconds each time. He's a drug dealer. No more, no less. For a while he was forcing me to see a psychologist (who herself wrote in her evaluation to him that I did not want and did not seem to need therapy - once I got the fatigue and pain controlled I was able to get back to my life, which was the only thing I wanted) because it was part of their "comprehensive pain management plan", but he shut up about that after the spine injection.

I have also tried various alternative strategies (acupuncture, TCM, polarity, TENS unit, massage, vitamins). None really helped me with the pain or fatigue, but I would certainly recommend trying these things. (Massage is always nice, no matter what!!) They are much less risky than some of the things the doctors want to do, and at least in the case of acupuncture/TCM, the practitioners will at least ADMIT they don't know how or why it works, just that it works for some people! I do take a huge amount of vitamins on the orders of the rheumatologist - I'm not sure it helps, but I figure it can't hurt.

Again: I REALLY hope you have a different experience than I do - just do your own research and be appropriately skeptical/set limits - and don't let them make you feel like your pain isn't real. As anyone with severe PA pain will tell you, sometimes it's more than "mind over matter".

[nla]

Hello, Karen! I'm sure you are feeling totally overwhelmed from your visit today. That's sure a lot of information to digest from 3 doctors in one hour :eek:

I'm sure you will find something that will help with your pain. You are a well spoken, well educated patient which I do believe can sometimes be half the battle. As much as I have always leaned towards the more "traditional" side of medicine, one thing that I have also firmly believed my entire life (way before this PA stuff hit) is that attitude is a lot of it and can help or hurt in each person's perception of pain. I'm guessing it might be termed more "mind over matter" but I definitely think it is one of the things that you eventually will look into. But, you can only try ONE thing at a time. It's a slow and delberate process but sounds to me like you are in excellent hands for this new journey.

Please take care and try not to get overloaded with all of this. I'm really confident you have found the place you need to be right now and it will all work out. I'm sending zillions of good thoughts your way!

Nancy

[RichJ]

hi karen,
i hope they will find some thing to help your pain. i wish you the best my friend

try and have a good night all

richard

[makeitgoaway]

I'm so glad today finally came for you - Better days are ahead!

[nesielheum]

Karen,
Here is hoping that this 2006 Valentine's Day is the day you remember that your PA took an about face.

[littleangel]

karen,
i hope this all works out for you. keep me updated!
miss you tons!

[emarie]

I am so glad you finally had your appointment. It sounds like you got a good once over and some thought put into your future treatment. The plus is that they have agreed with the diagnosis of PA. As you know, my docs so far will not call it PA even though all the symptoms are there. I think you have the first step in the road to recovery with doctors who know what you have and will work "together" with each other and with you to find a solution. They won't have a cure, but if they can reduce pain to comfortable that would be a great start. My thoughts are with you. I am looking forward to travelling with you to D.C.

[PJ66]

Karen,
As you always remind me- Baby steps!!!
I hope they help you find something to help your pain.

xoxo,
Polly

[Patchsigns]

Karen...

My faith runs deep. You know how much I would like to see you go without pain. Really, if I can take some of it away from you... I would.

Hang in there, my friend.

Know that we care.


Blessings,
Joe

[arlcollins]

Karen, Hopefully things will start to improve soon. As for me, shots worked really well, although it was only one knee. Anyone with PA knows how debillitating the disease can be- physically and mentally.Hang in there and try and think positvely. Don't be afraid to ask for anything. You are your best advocate. We will all be praying that this will help.
Anne

[Saxmom]

The man I was in pain clinic with had a block done and it worked great for him. He had bulging discs due to hip replacements.

I felt pretty much as you do after my evaluation. I was wondering when they were going to suggest something that I hadn't tried on my own. They never did, but I continued with the clinic. If nothing else it was great to be somewhere where everyone understood pain and its effects on life and living.

Good Luck, Karen!
Paige

[tmartha]

I'm glad you've finally had your first visit at the pain management clinic, Karen, and hope there will be something there that will help. As Paige says, I bet it is at least a good thing to be somewhere where people acknowledge the life-changing effects of pain and are trying to help...

Made me teary to see all the warm wishes of the people here for you - you have a lot of support and people who understand here - we are lucky to have found each other.

Best wishes -
Tani

[Ihurt]

Karen: You know my situation with my former boss. What you don't know was that he was a board certified Pain Managment physician.

I saw the patients on a daily basis. I was a patient who underwent two epidural procedures under the conscious sedation. I know the benefits of the procedures, especially nerve block, and facet joint procedures or SED. The patient's thought my boss was a wonderful man who saved them from extreme pain, and in many cases he did.

Better than this I traveled to a huge pain management facility to help them with their billing in June. This was in Pheonix AZ. Again, the patients received so much relief that their lives were forever changed.

Moral to the story-YOUR IN THE RIGHT DIRECTION. Pain management is a relatively new specialty with a mix of neuro, ortho, Physicatry and non invasive surgery. Many of these physicians are gifted and very talented, and most are anesthesilogists first before they enter the realm of Pain Management, so they are uniquely knowledgeable about the nervous system and the brain and neurotransmitters. Stick with it and Im positive it will benefit you in the long run. I've seen living proof of it on a daily basis and I know first hand about these procedures. Good luck my freind and I wish you all the best.

Elaine

[ouchyk]

Hi,

Thanks again for all the well wishes, kind comments, PM's & phone calls. My hematologist sent a letter ok'ing ( is that a word? ) the proceedure along with my bloodwork etc. So I'm good to go.

I'm hanging in there...contemplating doing prednisone for a few days to get me thru Capital Hill Day... :rolleyes: ...I know ...not a good idea. * sigh *.

Thanks bunches. I sincerely appreciate your support.

Relief soon.

xo,
Karen

[arlcollins]

Karen, I know that some people hate prednisone but it worked for me in Dec. when I couldn't walk. I tapered off slowly and had no rebound or side effects. If you've taken it before and it worked maybe you should consider taking it for a brief time. My mother has horrible Osteo Arthritis and she took it for 10 days last summer tio get her through a much anticipated trip to Ireland and England. She had a great time and gradually weaned herself down to 5mg a day which she is now on. It improves the quality of her life tremendously. She is 78 years old and she probably would be in a wheel chair if she didn't take it.

[sunnymay]

*big hug for u*