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Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127
Hi all,
I hate doing this but I need some comforting words.
I posted the other day that I was going to see a psychologist.
Well today I had to go to my GP to have the referral written and a care plan drawn up. Before my GP could do this he needed the letter from the pain management clinic I have been going to.
So I was waiting for my app and the receptionist asked if I wanted a copy of the letter. So I got one and was reading it, I got so angry it wasn't funny and decided that to hell with everything. I felt like I was so alone medically and wanted nothing more to do with any specialists, doctors etc.

I got called in and when I sat down my GP asked me what it was we were doing today. At this point, with tears rolling down my cheeks I said nothing, don't worry about it. He was beautiful and talked me through it. After he read the letter from the pain clinic he literally threw it to the side and told me to do the same and completely forget about the pain clinic. He even said they have no clue what they are doing as far as treating people like me. His opinion is if you don't fit into their neat little "mental" pain box or the load you up with opiates box then they don't know what to do. My GP does not think I need to see a psychologist he just thinks I need consistent treatment. Not having different specialists changing or adjusting my diagnosis.
Did I mention I love my GP?
He thinks that I can easily overcome my medication anxiety by taking new medications during the day, not at night and when there are people I trust around me and even suggested I take my enbrel injections at his office for a few weeks.
Yes he has suggested I go back on the Enbrel as we both think that my reaction may have been brought on by my anxiety and the death of my grandfather at the same time.
So things do seem to be moving in the right direction.

Now in case you might be wondering why the pain clinic letter upset me it was for a number of reasons.
1) I was diagnosed with Nociceptive pain. Something that in the 2 years I have been going to the clinic, no one has ever bothered to tell me, nor explain.
2) Most of my axial pain is neuropathic pain and basically brain pain.
3)They say that "I" (not them) feels that the pain is not very significant or debilitating. (FLAT OUT LIE)
4)Patricia's function remains very good. (What feckin planet is he living on?)
5)She under went some knee surgery recently. (that was it, no mention of the ongoing pain or stability issues, not even a mention of the type of surgery. Just some knee surgery WTF)
6) She complained of this, she complained of that, no suggested treatment or investigation, nothing.
7) She complains of cervical and thoracic pain but MRI shows no stenosis or nerve root compression. NO mention of the disc bulges, degenerate disc disease, large schomols nodes that go 3/4 thickness through the vertebrae, no mention of the annular tear, the thickening of the ligiaments or the multiple hemangeomas(sp). None of that could cause pain. Oh no not possible.

8) Lovely little diagnosis of
Adjustment disorder
Anxiety
Depression
Non of which was diagnosed by a psychologist and non of which they bothered to tell me about or even suggest treatment for.
Or maybe that is what they were thinking they might treat be deceptive tactics and tell me the gabapentin and similar meds they pretended would help with "neuropathisc" pain.

Add to this at an unrelated app at the hospital where I went to the pain clinic, I read my records where they recorded. Patient denies using illegal drugs, however says this is because she has seen what they have done to her family/brother so this may need to be re questioned. (or something along those line. Basically inferring that even though I deny talking illegal drugs, I probably do.)

I must say I did suggest to my GP that maybe I do need to see a psychologist because I feel like I want to blow up the pain clinic.

I am frustrated and feel like I have been completely deceived by the pain clinic.
Basically after 2 years, 5 appointments and a stupid changes course. each trip to the hospital taking 1 1/2hrs travel each way. All I have got out of it was more pain and and being told It's all in my head. GRRRRRRRRRRRR

Thanks for allowing me to vent.

Thank god I have everyone here who knows what it is really like.
Much love to you all


Joined: Oct 2007
Posts: 1,728
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naj Offline
Diamond_AS_Kicker
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Diamond_AS_Kicker
N
Joined: Oct 2007
Posts: 1,728
So hard to invest energy and trust and feel so let down. Not fair. Your GP is truly what doctors are supposed to be like: patient centered, collaborating, holistic in the truest, oldest sense of the meaning.
Hugs to you and take good care!


______________________
Jan
(naj)
Joined: Jul 2010
Posts: 1,190
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Steel_AS_Kicker
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Steel_AS_Kicker
V
Joined: Jul 2010
Posts: 1,190
Hey Aussiegirl,

I am sorry you had a rough time. Sorry about the letter, I would've broken down too if I read things like that in a letter. Being in pain 24/7 is so hard you don't need more problems from the pain mgt place, gosh.
What kind of treatment did you want from the pain mgt place? Did you ask for a certain medicine and did they say no?
I hope the psychologist can help you and I hope he/she is understanding and caring. Have a nice weekend.


Diet change has improved my RA. I feel best eating raw veggies and some fruits and avoiding grains, sugars, nightshades, beans and dairy. Sed rate dropped from 65 to 19, but it took over a year.
www.fatsickandnearlydead.com

excess fat/oils = pain for me
recipes for raw food on Youtube "raw food romance"
and "healing josephine" Josephine is in remission from RA after two years by change diet/exercise
Joined: Jan 2008
Posts: 21,346
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Very_Addicted_to_AS_Kickin
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Very_Addicted_to_AS_Kickin
Joined: Jan 2008
Posts: 21,346
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I know exactly how you feel, or at least I think I do. I've gotten letters like that, the kind that made my rage boil over.

I think if we didn't get so mad about them, that would be sign that something was wrong with us...or at least getting mad over stuff like this is, IMHO, perfectly normal.

But too, I've found, so long as I have at least one medical advocate (doctor, chiro, etc) in my court, with him or her, I could find my way through the medical maze.

So glad you have that wonderful GP.

Try to put that pain clinic behind you...though I know that's hard. I haven't been to the rheumy who tried to convince me I had no inflammatory arthritis for a few years now and I'm still bitter toward him. I know its not healthy for my health to feel that way; I'm only hurting myself, not him, with those emotions, still its natural for those wounds to take a long time to heal. But now I have a rheumy who is helping me, so that's I think what we have to focus on: the good.

Focus on your good GP. Focus on trying enbrel again. Focus on all the good things.

And just try (easier said than done!) to forget about that pain clinic.

But so so sorry you had to suffer through all of that nonsense. What a waste!

Too, remember, we're here for you hugss



sue

Spondyloarthropathy, HLAB27 negative
Humira (still methylprednisone for flares, just not as often. Aleve if needed, rarely.)
LDN/zanaflex/flector patches over SI/ice
vits C, D. probiotics. hyaluronic acid. CoQ, Mg, Ca, K.
chiro
walk, bike
no dairy (casein sensitivity), limited eggs, limited yeast (bread)
Joined: Jul 2013
Posts: 1
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Lurker
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G
Joined: Jul 2013
Posts: 1
So What if you broke down at the doctors today; bless you Aussie girl and smile!

Some of these docs have no bedside manners or manners at all; so forget and forgive them. Go to another psychologist and pain management doc each having empathy and caring attitude and who deals with helping those of us who suffer in pain. I had a similar experience when told my troubles were in my head and I should see a physio doc. I actually ended up seeing a psychologist who specializes in pain management. He taught me that our mind controls our pain; difficult to believe but after many, many sessions of practice you know what for the most part his procedures work. What has worked for me is to limit my care to just two physicians; my G.P. and my rheumy. Then I eliminate all of those unnecessary driving treks, sitting in all the waiting rooms only to be treated rudely by assistants who don't know which end s/he should sit on the toilet! I don't have time for that; I just caulk them up as ignorant, non-caring, lack empathy for my particular situation and don't care about me as person and never-the-less as a customer that s/he don't deserve my hard-earned paying insurance premium, co-pay and/or any portion of my annual deductible! Most physicians are not familiar with A.S. and the many side issues it causes!

So don't let those who don't understand A.S. and it's many side effects get you down, Aussiegirl! Just turn around knowing you know what you are experiencing they don't and move on and wipe that experience from your mind 'FOREVER'. As they are exhibiting by their very character and "know it all" attitude just how stupid and their lack of empathy truly are!

Eventually you'll find you own path surrounded with people who love you, care and share empathy for your plight.

God bless you and keep laughing! Gene smile


After a
Joined: Aug 2013
Posts: 215
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Second_Degree_AS_Kicker
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Second_Degree_AS_Kicker
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Joined: Aug 2013
Posts: 215
Im sorry to hear about how awful the pain clinic treated you. I wish people had more compassion for others, and actually did their jobs correctly. It hurts when the people we go to for help, because we need them to prescribe us medicine, make our lives worse with their uncaring, inadequate, and substandard care. I think they become jaded, are just in it for the money, and act unethically because they can get away with it.

Keep your head up. Keep fighting the good fight. The world is harsh, cruel and unfair, but it is also full of beauty, love and kindness. Just dont let the bad things drag you down and know you are a better, more compassionate person because of your struggles. I hope things improve for you.


Everything is okay. Trust yourself, and do not live from a place of fear.
Joined: Apr 2013
Posts: 278
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Third_Degree_AS_Kicker
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Third_Degree_AS_Kicker
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Joined: Apr 2013
Posts: 278
I broke down out side of the gynecologist office once. If you are female you know that your pain is very often attributed to "female issues" I had all the tests and sonograms which showed no problems and I was just making things up. NO. The doctors were all failing me. And sending me chasing in the wrong direction while I was paying out of pocket w/no insurance.


Be kind, for everyone you meet is fighting a hard battle.
Plato
Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127
Thank you naj and yes I do feel so let down.


Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
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Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127
Hi ValsMum, Long time, hope you are well.
No I didn't ask for medicine as such. When my rheumy referred me he said I would see a number of different specialists and combined they would come up with a plan. In the 5 appointments I only ever got to see a different pain specialist each time and spent 30mins going over the same stuff as the last appointment and that was it basically apart from the one specialist who basically was threatening me into taking medication they use for epilepsy. Oh and I was sent to the "changes" program that was all about dealing with neuropathic pain. The way they described it at the program was that it was pain that occurs even when there is no mechanical problem. Ok part of my pain may be neuropathic but most of it is mechanical either being caused from active inflammation or arthritis and damage of my joints/spine.
I never got the promised appointments with the other specialist, physio, OT etc.
You have a good weekend too.


Joined: Feb 2010
Posts: 1,127
Steel_AS_Kicker
OP Offline
Steel_AS_Kicker
Joined: Feb 2010
Posts: 1,127
Dear Sue
Thank you for your support yet again.
Yes having followed your posts you would understand very well what I was dealing with.

Are you still taking LDN? I am thinking of going back on it now I have a little more funds.
Take care


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