Outcomes: | Arthritis Information

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Outcomes:

Sorry, it is not my intention at all to keep anyone in suspense (including Boney), it’s simply that it takes a long while to get my thoughts together at the moment and then transform them onto the page. My ‘brain fog’ is intense and I am battling just to put two words together. I keep having to have breaks too and naps so please bare with me as when I get it done, it will be useful to all and that is what is most important here…the usefulness of my experience.

Also, I wanted to let you all know that I was home as I know how many of you have been asking after me…and my welfare. Stephen has kept me updated there, which I so appreciate

I need to go and have another sleep soon so I thought while I continue to work on my other post, I would put up some quick outcomes from the whole hospital scenario for you all to consider while I nap and then write the rest of the post as soon as I possibly can.

I suggest that after you read this thread you throw up your questions on the board as posts as it would be interesting to see what this brings up for all of you. 

That is all I can think of for now…so feel free to think and post your responses here while I have some more nap time.

I am seriously trying to finish the other post as quickly as I can. It is just taking a while.

Meanwhile, I thought you all would enjoy pondering over these beautiful outcomes they have presented me with. I sure did. Lol.

HI Cords, the post of what they have offered you is basically word for word from the "PACE" pain management inpatient programme that I did.  The whole thing is identical, I still have all the paperwork.  So basically they believe in pain management through the channels you have explained and without drugs where possible.  They also told me that antiinflammatories would kill me if I kept taking them.  Hope you can sort this out as like me I could not accept it and found it absolutely appalling that they stopped my painkilling meds while in hosp and put us all on a psych drug!!!!  I understand their reasoning but in reality it is not possible, not for me anyhow.  Best of luck, Janie.  
Much Hugs! Glad to have you back!

Thanks, Joonie and hugs back at you as well, sweetie.

Well, done, Janie.

For a while there I thought I all of you may feel as speechless as I do. Lol.

No, actually, I am not in too bad a place with the whole acceptance thing because certain things I want are being considered.

First I will fill everyone else in on the basics...so they understand the conversation...

Manage Your Pain - Practical and Positive Ways to Adapt to Chronic Pain

by  Michael Nicholas, Dr Allan Molloy, Lois Tonkin and Lee Beeston

Description

This is a series of thoroughly tested techniques that enable sufferers of chronic pain to do something practical and positive to improve their lives.

If you have chronic pain and you are wondering if this book could be helpful to you, try answering the following questions. Over the last month or so how often have you:

Used pain killers to do something you know will stir up your pain?

Done an activity until it is finished (regardless of pain) then rested?

Found that pain is interfering with your sleep, work, sport and social activities?

Had one or more long rest periods during the day due to pain?

Had upsetting thoughts when your pain gets worse (like 'I can't go on'; 'it's killing me')?

Been concerned that your doctors have missed something?

Been told to 'live with the pain' but not shown how to do it?

If you answered 'yes' to any of these questions, then Manage Your Pain will help to improve your life.

In Manage Your Pain the authors have drawn on the latest scientific research and their extensive clinical experience to show you how to live with pain. Manage Your Pain will help you and your family to gain a better understanding of your pain and minimise the impact it has on your life. Manage Your Pain is a self-help book, but it can be used as part of a program worked out with your doctor, clinical psychologist and/or therapist.

Manage Your Pain is based on the well established and successful ADAPT Program at the University of Sydney Pain Management and Research Centre at the Royal North Shore Hospital. Dr Michael Nicholas, Dr Allan Molloy, Lois Tonkin and Lee Beeston are senior members of the multidisciplinary ADAPT team at the Centre. The program has now been taken up by other pain clinics around the country.

Pages: 176
Released: 2007

ISBN / Catalogue Number: 9780733320880

I have to purchase the book so I can use it throughout the therapeutic process ahead.

 

This book is the ‘bible’ of chronic pain management in AU it seems. Written by several experience medical staff at the Sydney Pain Management Clinic…this is the only way they see for me to go, using this book and the cognitive and behavioural techniques within it.

 

I suppose I don’t have any real problem with this because when I went to hospital, I had two goals in mind.



1.to get off Prednisone



2.to get off painkillers.

 

I felt and those around me felt there needed to be a detoxifying process here.


So when presented with this information…I can see it’s therapeutic value. I read the book while in hospital.


I get the basic principles and psychology behind it which is the following:

Pain relief cannot help long term for chronic pain

You need to learn how to manage the pain other ways which are more effective in the long term…movement, stretching, heat, meditation…

Pacing is about deciding on your baseline fitness level (considering your inactivity) and building up slowly on your capacity to manage more and more in your life.

Yes, they want you to do it without drugs. They prefer sustained release pain meds with no breakthrough usage. They prefer to see if the anti convulsants and the anti depressants will do the same job as any of the painkillers. They goal is very clearly to remove you from all opiates as soon as possible and keep you there.



 Now, I am definitely going to give this a go. I already am getting them to reduce my Fentynal patch as it’s a big problem in regards to using anything for breakthrough pain.


I know this won’t be easy, I shall need a lot of help psychologically which they have set up and happening.

 

What does anyone else think???

Hi Cordelia,
 
Glad you are back home.  Gentle hugs to you. 
 
My jaw was on the floor when i saw the outcomes you are being "offered"!  Still shaking my head in disbelief.
 
Sending you lots of positive thoughts across the miles.  So... what you are saying is that I have been managing my pain the right way for the last 3 years... good to know. Now I do not feel so bad about not taking my pain meds as prescribed. I am use to riding out the pain, that was the only way I knew since I was a kid. I have took pain meds within the last year, but that was because the pain was really starting to effect me mentally. Usually a couple of days without much pain using pain meds and I can go again dealing with the pain for a while without having to take pain meds. For me pain meds is like letting my mind have a break to be able to "breathe".
 
I hope this works for you. I am sure it will be a bumpy ride to get to the goal, but I know you can do it! I'm astonished by what you posted but not in disagreement to give it a try, but I'm skeptical.   I guess my astonishment is that there will be no chemical relief offered while you're processing PACE and getting psych. help to deal with the pain. 
 
No pain relief, no home care to help until  you to learn to manage your pain.  How are you supposed to deal with the day to day activities?  Am I missing something here
 
What are the success rates/% with this program?  Have you talked with others who have gone through this process?  Are you in less pain than prior to hospitalization or are have you learned and are using techniques to control the pain?  I'm sorry but I have so many questions.  I'll stop now until I can get a handle on this program.  Take care dear person.  Namaste, Lindy
HI Cords, I wish you all the very best and I pray that you are strong enough to cope, I believe it may have worked for me if I had been on the PAIN MANAGEMENT inpatient programme for longer than 2 weeks, and I feel you need a unique set of Drs and nurses, the shift changing and holidays that were going on left all 6 of us feeling like we were starting afresh daily to explain our situation and goals.  I really do encourage you to try it, but like LinB, I know you were in a terrible way before you went to hospital, how can you cope without pain relief in the meantime?  Sorry, I don't mean to be negative Cords, at least they are listening now, love Janie.XXX  It sounds like they are following the Gates of Pain theory.

Drs. Ronald Melzack and Patrick Wall developed a theory about pain in the 1960s.   The theory is called the Gate Control Theory of Pain. It’s an interesting theory that’s being studied closer as doctors learn to appreciate the close relationship between pain and the brain.

Basically this theory says that there are pain gates along the spinal cord. When your brain sends a message to a nerve telling it to hurt, the open pain gate allows more pain through. This theory says your thoughts and emotions can affect the opening and closing of the pain gate. If this is true that means you can control some of your pain by controlling your thoughts.   But medication is used to relax the mind when stress is causing the pain gate to stay open.


I hope this works for you....



HI Lynn, yes that is exactly what they are teaching as I have done the PACE programme and in NSW it is called the ADAPT programme, both are the same.  The gateway theory was drilled into us while on the course and a lot of the talks were very beneficial, putting them into practice is much more difficult.  I think Cordy is a very strong person so please God, she will be able to adapt, I certainly hope so as there is not much else they can offer us after this stage until new biologics are available and work for us.  Janie.

*LinB don’t apologise for asking questions, darling that is exactly what I wanted you all to do. I put out the outcomes to see where all of you would go with it…you all have such a vast experience of this disease, I see the AI board members like a ‘brains trust’ kind of pool of information and experience. PLEASE ASK QUESTIONS!!!!

*Janie, you are fine. I have watched you struggle with similar experiences and a similar health care/hospital systems etc.

*Joonie, all our journeys here are similar but different. Only you can follow your instincts about what is right for you. -Remember, I never used any pain relief at all until 6mths ago…101/2 years of this disease I did with no narcotics, opiates etc so yes, it can be the right thing to do. Basically the ‘riding it out’ method you describe is what I used to get through that decade. I have done it before and I can do it again.

There is some chemical relief, LinB provided it comes in the form of sustained release.

I have now been on 5 different sustained release medications and have found them to be useless at best. But you cannot have any breakthrough meds whilst on them. They prefer that pain relief come through the anti convulsant/anti depressant sources and sustained release is okay but for how long, I am unsure?

You are NOT supposed to deal with your day to day activities…you just don’t have any of those…they can’t answer that. They claim that people have returned to most of their activities using this program including work. Unfortunately, now I am out of hospital, until I can purchase the book, I don’t have the information here to look up to answer your questions more directly.

Gates of Pain is kinda old stuff, I already knew about that…and I do intend to speak to people who have/are going through this program about success rates etc etc.

Am I in less pain since hospitalisation??? 

Nope. The same really. I am a little less stiff right now but since they are weaning me off Pred at a rate of knots…that could change at any time.

Have I learnt new techniques to control the pain???

Nope. I already had quite a few in the arsenal. Nothing new has been added yet. I still use all my old techniques of ‘riding out the pain’ that Joonie talks about. I have always used them even with pain relief in the past six months. They are ingrained in me after so many years of habit, sub consciously managing the pain without thinking about it.

Janie, I would love to do this program as an inpatient thing, I think that would be easier than as an outpatient.

Sorry, I have not meant to be clandestine about my experience. It is simply there is so, so much to tell you about…I am trying to bite it off piece by piece and I thought some outcomes might satisfy the goal oriented among us before I go back in and fill out more details.

Well done Cords, you are a great example to us all, the way you are giving us your information, I reckon is the best way as I don't know about the other lovely people, but I can't handle too much information at once.  Cords see if you can get on the waiting list for the pain management programme, it is thru the RBWHnd it is for 14 daysmon thru to fri 2 weeks later, you can go home at the weekend if you wish.  Love and hugs, Janie.XXX  Big kiss for Nevie X

Edited by me, pain on the brain!
 janiefx2008-06-01 04:18:55Cordelia- Not having walked in your shoes, I can offer no valid opinion. But I do wish you much success in whatever you choose. No one should have to suffer on a daily basis. I'll continue to keep you in my prayers.Cordelia 
 
I am reading your posts and trying to devour all that you say....  I really appreciate you taking the time to share all with us.  I'm sure that at some point in all our battles this pain management will be very helpful.  I'm giong to see if I can pick up the book cheap on AMazon.  Thanks...
 
and my very best to  you... and your little one..
hi cordelia.. i have to re read all this.. from the posts while you were
in hospital the thoughts were you may not have ra at all but some other
illness. are you saying you have refactory ra  Boney2008-06-01 05:17:37Is no one examining WHY your pain levels are so out of control?  Have they relooked at the RA diagnosis to insure they havent missed something.  Has a sleep study been done to diagnose the cause of your snoring?  do you use a CPAP machine.   Are there any pain studies you can get into that might allow the doctors more freedom in prescribing medication

Wow, Cordy.  You sound hopeful and optomistic about all this and I'm happy about that.  I think it can only work in your favor.  But let me ask (and maybe this is a stupid question), are you confident that your dr is correct and that this is your next step?  That every other thing has been exhausted and there is no where else to go?  Maybe another dr and a fresh start and no already formed opinion on your condition would be a good thing.  Either way Cordy, you're in my prayers.  I really admire your strength in dealing with this.

Wow!

I'm keeping my fingers crossed for you.  I know that the brain is a powerful force, and antidepressants, anticonvulsants, etc can work miracles at times. When I started taking Zoloft for "female" issues last fall (mainly the urge to reach out and punch someone once a month), I noticed a drop in RA pain. It took several weeks for that to happen.

I wish you the best of luck!!!!!
Okay, so here are some answers to the questions for you.

1. I am completely convinced of my dx. Obviously this is a question I have asked myself many times recently but the more I reflect on it and my situation, the more convinced I remain. There can be no other dx. I was dxed with seronegative (no RF) inflammatory polyarthritis (many joints). My dx took several months of eliminating every other possibility. The only thing they may have missed is that I have fibro also which is extremely difficult to tell with the RA being so severe.

2. I have RA. Simple. RA is the over activity of the immune system so it attacks the muscles and joints and causes inflammation. As far as I am concerned we analyze our diseases to death. RA is RA like OA is the breakdown and loss of cartlidge between the joints...RA is what it is.

Health professionals are very good at pandering about terms like erosive, undifferentiated, refractory etc etc. Personally, I think it is a crock. It is what it is. Simple.

My pain is from the massive amounts of inflammation in my body that should not be there. That inflammation is in both the joints and muscles, it's everywhere. It's been so high the inflammation has effected my speech, my ability to see driving...inflammation is inflammation.

3. Why are my pain levels so out of control?

Well, I don't know. They don't know. That's a huge part of the problem. They feel inadequate because they don't know. Usually at that point they turn it back on me and find some inadequacy of mine to blame it on...I drank one glass of wine in 2002, stuff like that. They don't know and it embarrasses the hell out of them.

Maybe because for eight years no one took any notice of me when I said something was wrong so it built and built becoming so out of control that it could never be harnessed back in again.

4. I snore when I have sinus. No, I don't use a ACAP machine. It's not all the time. They just seemed to think throwing in that thought of possible death would be helpful somehow.

5. I will investigate pain studies and see what is available.

6. Yes, I am sure. I want to get off the opiates anyway. I never believed that they were the answer. I survived so long without them, I can do it again. I do believe they are making the situation worse overall, as is the Prednisone. I want to get off both. That it will hurt is obvious. I don't have any illusions both these types of drugs are incredibly dangerous and difficult to wean. it is going to be painful. But I would rather just be on the DMARDS and a few other basics than spiraling with Prednisone and narcotics.

7. It has taken me such a long, long time to establish the relationships I have with my current doctors...the thought of starting all over again...is way too much right now.

8. I don't think it is any longer a matter of what I want...what I want is a ruddy fairy godmother to come along, wave her magic wand and make me all better...but that is not going to happen. No matter how much I wish for it, so for me the decision to eliminate two kinds of drugs that are making me feel worse rather than better and that are confusing issues.

9. What I and my rheumy would like,  is to send me to Germany, to an RA day hospital there, where they work with very aggressive patients like me on a daily basic until they get well,  but that is out of the question because of money.

10. So yeah, I am okay with the decision to explore pain management. I really don't see any other options at this time. And I intend to explore openly, with many many questions. I get pacing in theory, but I would like to see it operate in practice as I would the other cognitive and behavioral therapy components of this program. I want to talk to other people who have succeeded with it. Those who have failed etc and why. I intend to become the most annoying pain management participant in the history of the universe. They will be so so sick of me by the time I have finished with them, honestly Ah, sorry Boney, just to clarify so you know the score here.

I hurt everywhere...all the time...from my nose to my toes. Joints, muscles and everything else. I get pain in my ears, my face. My feet and hands feel like they are in fire. Everything goes numb. One day, even my forehead hurt. I was a tad angry at that. The least this RA can do is leave one bit of me alone.

So I hope that makes it clearer for you. Everywhere, all the time, in everyway possible. Achey, shooting, firey, sore...on and on it goes.

have your doctors considered Complex Regional Pain Syndrome ( formerly known as  Reflex Sympathetic Dystrophy) in addition to the RA or Fibro.  Something else MUST be contributing to your extreme pain levels and not just your typical inflammtion. some of the symptoms of CRPS are 
  • severe burning pain
  • pathological changes in bone and skin
  • excessive sweating
  • tissue swelling
  • extreme sensitivity to touch

    • This syndrome is extremly difficult to treat which may account for your lack of pain control with normal pain medications

    Cordy, your post brought tears to my eyes.  How awful it must have been to hear that difficult prognosis.  A weaker person would have been brought to their knees.  What cheered me a little, and what I'd like to share, is the stories I've heard of others who were successful in controlling their pain through mind control.  It seems this is one of the avenues you'll be exploring.  Because the mind is so powerful when harnessed properly, you can absolutely achieve the relief you need.  There are even documented cases of people going through surgery without any anesthesia.  Hypnosis was the key.  Granted, you will need to be well versed in either self-hypnosis, bio-feedback, or both, but I truly believe, based on what I've read, that there is a light at the end of your dark tunnel.  A person with the right frame of mind can do this, and you sound to me like just the person for this therapy.  Hugs and a kiss on the cheek to you my friend.  You can do this and I'm so looking forward to hearing how you stared down the "devil" and won.  Cordy, I am happy that you feel positive about the outcome of this hospitalization, but I must say that I am very concerned.  I feel like this is just another example of the medical community not having the answers and shifting the responsibility back to the patient.  IMHO, they need to keep searching for the answers to the underlying problems, and not rely solely on "Jedi mind tricks" to help you with the pain.  I'm not saying there isn't a pyschological component to our pain that could be useful, but because it is not the underlying cause, it can only do so much.  It also sounds like they're trying to use scare tactics, which I don't believe have a place here.  Finally, it upsets me that no home aide is available to those with disabilities who are not elderly.
     
    All that being said, I do hope you find this program helpful and that you find some relief.  I will still be here, cheering you on!
     
    PS - Don't rush to post everything for us.  You need to take care of yourself first.  If you want to share it all in your own time, we will still be here.
    hi cordy really sorry you are in so much pain...

    but i still dont get it.. make me dumb here but you say this is due to ra
    and inflamation.. you allso say
    Health professionals are very good at pandering about terms like erosive, undifferentiated, refractory etc etc. Personally, I think it is a crock. It is what it is. Simple    quoty  thingy cordelia

    refactory ra is ra that has failed to respond to meds.. is this not you
    you allso say you want to stop pred and painkillers and just use
    dmrds.. oh foregot to ask if your ra has not responded to any of the meds
    how much damage has this done to your joints muscles and internal organs
    do you have vasculitis..

    Boney
    cordy, wow, i'm soo sorry !!
    thats all i can say..

      there is One thing, tho, that really stood out, for me..

    That you had this for 10 yrs and took no pain meds..

    to me thats a sign, to Take pain meds, asap.. w/ this illness..

    (hey no judgements about you at all .. ok, i wouldn't do that!!)

     

    I think w/ no pain meds, nothing got reduced.. and the illness progressived soo much, ... that this is where it ended up...

    thats simply .. imo... from what i can see, today... .

     

    I still think the Drs ought to be able to DO something for you and i think you should stay on some meds!!! i really do..

     

    I'm wishing you the best for you and not to get a provider, blows my mind.. i think you need to get a lawyer, tho, it sounds soo hard, w/ all you're going thru... but theres got to be a way, that you can get the help you need..

    I feel for you,  you're in my prayers... don't give up, i still believe theres something missing that could help... has to be!

    ((((((((((((((((((((cordy)))))))))))
    you're an incredibly strong women...sooo unfair...    Hi Cords, I would love to be your fairy godmother with a majic wand, I would take all your pain away, give you a 24/7 Brad Pitt lookalike housekeeper/personal assistant, a live in chef, No not Gordon Ramsay!  I would have a wonderland in the back yard for Nevie!

    Your Drs would be on call for you 24/7, and a George Clooney lookalike masseuse, how would that be?  Love Janie.XX I am off to nap again but found your answers and questions so very interesting...I shall reply when I can, dear friends...thank you for your creativity and curious minds. I so need the brainstorming.  Cordy,
    sending best wishes and positive thoughts
    lorrie2008-11-23 23:27:16Is medicinal marijuana an option??

    Well, I have had some sleep and thought I would reply while I am up and about for a bit...

    Buckeye – I have recently come across Reflex Sympathetic Dystrophy in some of my research so I went back this just now and had another look. I absolutely agree that I could have that in addition to the RA and Fibro. They symptoms certainly fit.

    Jesse88 – thanks for your kind words and reminding me of what is possible. I feel I must explore all pathways.

    InnerGlow – well, I didn’t mean to give the impression that I am happy about these outcomes, Inny…I am capable of facing them but not in anyway happy.

    InnerGlow said:

    I feel like this is just another example of the medical community not having the answers and shifting the responsibility back to the patient. 

    Yep, yep and yep…it is typical moron doctor garbage in my opinion. We don’t know the answers so we throw the blame back on the patient. Charming, isn’t it.

    InnerGlow said:

    IMHO, they need to keep searching for the answers to the underlying problems, and not rely solely on "Jedi mind tricks" to help you with the pain.  I'm not saying there isn't a pyschological component to our pain that could be useful, but because it is not the underlying cause, it can only do so much.

    Of course, there are psychological components but pain is a message that something is not okay. That is what I have always believed anyway. It’s the body’s way of communicating…like crying is a baby’s way. Nature is solid and simple in it’s approaches, I believe.

    And Inny, really…I must be the most psychologically open person on this board!

    Right now though, I would be happy with a few “Jedi mind tricks” if they actually worked!!!

    This is all about causal stuff. What is behind all this causing this amount of pain?

    That I am soooooo stressed now too is not helping that just compounds and magnifies the pain.

      InnerGlow said:

    It also sounds like they're trying to use scare tactics, which I don't believe have a place here. 

    I have never met such a bunch of bullies in all my life. These guys should be in the military in Iraq…they would make the most hardened soldier give up their dearest secrets.

    No, this is not the place for scare tactics…it should be a place of safety, warmth and compassion.

    You start to distrust yourself and your discernment within that kind of environment.

    Boney – dearest Boney…okay if refractory RA is what you call RA that has failed to respond to meds then that is what I have. I am on Rituxan. The only thing left is Orencia except for some old ones I don’t think my RD will want to try.

    Are they working? Nope.

    Three years since dx and I am yet to be stabilized in anyway.

    Only since my Rituxan infusions has Pred worked at all on me so yes, I think it is a very, very dangerous drug and I want off it.

    The narcs well, they bother me too…especially the sustained release ones that are supposed to work and just don’t. I want off them as well, yes, since I only started using them six months ago.

    To you it may not make sense but it’s how I feel. I have been sorely tempted to yank myself off the DMARDS too – Rituxan, Plaq and MTX since they don’t work either. In fact, the whole goddamn lot could go in my opinion.

    I feel very ‘med muddled’. I honestly wonder where I would be with none.

    Would I feel better?

    Worse?

    How much more crippled would I be?

    Could I survive it?

    I am completely sick of the whole thing…of treatments that don’t work…of analysing my disease to death…of the stress that comes with it all…of not being able to live my life.

    I am now to the point where I hate the whole goddamn process with such a passion. And no, I am not at all amused at being sent home with a DIY video in pain management.

    As for damage and vasculitis…no idea but no I have basically not responded to any of the meds for any length of time. With my first Rituxan infusion, I got five good weeks out of 6 months. Humira – 2 weeks. Triple therapy – 3 months. The last two years has been one long flare with smaller flares within it. Fun, hey?

    Whispered –

    Whispered said:

    there is One thing, tho, that really stood out, for me..

    That you had this for 10 yrs and took no pain meds..

    to me thats a sign, to Take pain meds, asap.. w/ this illness..

    I couldn’t agree more. My thoughts have been they have never had me on enough actually – 100mg Fent patch and 4 5 mg Oxycodone for breakthrough. I always thought the breakthrough was too low. I think pain meds are absolutely essential to our sanity with the experience of chronic pain.

    Whispered said:

    I think w/ no pain meds, nothing got reduced.. and the illness progressived soo much, ... that this is where it ended up...

    Exactly. I couldn’t agree more.

    And it’s my responsibility too. I am stoic. I don’t complain. Obviously I should have complained more until someone heard me but I didn’t. So now, like you say, nothing got reduced and it’s progressed to madness.

    According to the docs, all that’s left is Methadone and they won’t do it because I will never get off it.

    What a nightmare!!! Lol.

    I am still on pain relief. I have reduced my Fentynal patch to 75mg because there is nothing they can use for breakthrough pain which matches the Fent patch at that amount, even morph.

    They put me on Oxycontin 30mg in hospital which is the sus release form of Oxycodone. It being my fifth sus rel med I was not impressed and asked to be taken off it and put back on Oxycodone 10mg every four hours. They agreed but weren’t happy. The sus rel med is exactly the same.

    So I am still on the Oxycodone 10mg 4 hourly it just takes the sharpness and edge off the pain, lowers my discomfort a little. The Fent patch is still at 75mg.

    I am also still on 37.5mg of Pred until next week when I see my rheumy.

    And they added an antidepressant Endep for pain and sleeping. Definitely helping with the sleeping but…

    Tamazepam (Normison) up to 40mg for sleeping.

    But do you have any idea how much you are on, Cordelia????

    Nah, I thought you were giving me Tic Tac’s!

    Janiefx – change the guys to Viggo Mortenson and Jonas Armstrong and you have a deal, girlfriend.

    KatieG – thanks for the thought but medical MJ is out due to some other medication I am on that could react badly. Nor will my docs consider methadone.

    Lorrie – thanks for being my wonderful MH. You are the best.

     



    Cordy, sorry I misunderstood.  To tell the truth, it was scaring me that I thought that you thought this was a positive thing.  I'd like there to be positive things for you, more than anything, but it sounds like they just don't get it.  I don't know how your medical care system works...do you have any flexibility in going to different doctors, maybe starting over?  And don't let them get you to doubt yourself.  I know it's hard, very hard, but I know you are strong enough to stay true to yourself.
    Boney2008-06-02 11:02:29Hi Cordy
    Just checked in. Hope you are managing.
    Sometimes there are no more words.
    Just a kind thought and the knowledge
    you have friends,
    Tim
    Hi Cordy, Sorry honey that the hospital and Doctors cant give you any more help or hope than they have done. I am certain that they are missing something here though. I had a doctor who told me that there was nothing else they could do for me as the meds werent working so I changed doctors and now my new rheumy is trying all sorts of things and willing to look at different possiblities, that in its self makes me hopeful at least. How is your lovely little girl coping with it all?Definitely not positive, Inny...I am so, so annoyed especially with the Pain Team who are supposed to be able to help me...they just don't get it although some of what they are trying to achieve is reasonable and useful. With a more collaborative approach, it could definitely be useful.

    Yes, I somewhat have the option of changing doctor's. I am thinking of admitting myself to one of the bigger city hospitals where they have a rheumatology dept etc but it's just an idea at the moment. My RD and GP I am very happy with because they are collaborative and there is not much I can't negotiate with them.

    Boney - please remember I am snappy and cranky at the moment due to pure frustration and so much pain. I did not mean to sound annoyed with you at all. Yes, I have refractory RA as you can see from my answer. It responds to very little.

    Pinny - Neve is with my brother and family right now. One of the blessings that came out of this scenario is that my brother and his wife 'got it' at last and realised how sick I am. They also realised that Neve needed them so they have stepped up, thank goodness.

    Appletown - thanks, friend. Your words mean so much because there are no words.


    Hey girl---I am sorry that it has gotten to this point. At least your family finally has a clue. Mine has been the only thing to keep me sane and going during some of the rougher times.

    How much was your rheumy involved while you were in the hospital? Does he agree with the other dr's? I guess I am hoping that he will have some other ideas when you see him again.

    You are one strong girl. It is obvious that you are an awesome mom by your comments regarding your little one. You found her a safe place to be while you gather the pieces that these doctors left you with. I wish there had been an easy answer. Actually, any answer at this point! Have they mentioned a pain clinic? The nerve blocks that I have received have been a life saver for me. Granted, you are in a totally different situation RA wise. I am just trying to find something...anything.

    I just read your last post more carefully. I am 100% for you getting another opinion from another Rd. If you have a good relationship with your current dr, he should support you. Especially with the options being presented. Just what if there is another answer out there? Most dr's welcome a second opinion. Rebecca,

    Thanks so much for your input...it is always appreciated.

    I now have a Pain Team not just a clinic...I also have a psychologist who is working with me to learn to manage the pain better...he is one of the few people around with experience working with chronic pain sufferers and chronic illness. He is fab. I am going to enjoy working with him. I saw him in the hospital and he comes for a session here at home tomorrow.

    Are the nerve blocks only useful for targeting particular areas or for an all over treatment?

    I know they have helped you greatly.

    For me they have worked on groups of areas.  Ex:chest wall pain, rt. shoulder, neck--treated by a series of three blocks.  Now we are working on the rt. shoulder.  So, not for all over pain but it can target the worst areas.  Not sure if this is a viable option for you.

    I hope the dr. has some ideas tomorrow.  Get yourself some big strong guys over and duct tape him to a chair.  Not allowed to leave without a good plan!!

     

     

    Great suggestion, about the duct tape.
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