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Posted By: aussiegirl Broke down at the doctors today. - 08/30/13 09:55 AM
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
Posted By: naj Re: Broke down at the doctors today. - 08/30/13 04:37 PM
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!
Posted By: ValsMum Re: Broke down at the doctors today. - 08/30/13 11:32 PM
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.
Posted By: Sue22 Re: Broke down at the doctors today. - 08/31/13 12:59 AM
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
Posted By: gene Re: Broke down at the doctors today. - 08/31/13 02:36 AM
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
Posted By: Smiletoday Re: Broke down at the doctors today. - 08/31/13 03:43 AM
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.
Posted By: Pezami Re: Broke down at the doctors today. - 08/31/13 04:59 AM
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.
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 08:46 AM
Thank you naj and yes I do feel so let down.
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 08:57 AM
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.
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 08:59 AM
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
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 09:08 AM
gene,
Thank you and God bless you also.
The changes program was about how the brain controls pain and that part was interesting however this is not the be all and end all.
Like I said in another reply, most of the benefit from those types are programs are seen in conditions where there is no mechanical reason for the pain. For example, on going pain after an injury that has healed/fixed. But just meditation, and changing the way your brain sees pain will only help so much when you have actual damaged joints and on going inflammation. For some reason though the pain clinic tend to treat ALL patients the same, that our pain is all in our head but as you know that is not the case with AS. After over 15yrs of being told it is all in your head to finally get a diagnoses and reason for feeling as bad as I do then to go back to being told it is all in my head again. Well yeah that doesn't sit to well with me.

Thank you again All the very best.
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 09:14 AM
Thanks you.
It was a good day today. I got out to the beach to replant the dunes and while I am paying for it now I can smile because I know the pain I am in now is a reward for the good work I did today.

I have to say that the biggest thing I did learn from the "changes" program I was sent to was Empathy and compassion for those that are suffering neuropathic pain. I learnt that yes whilst this pain is caused from the brain and not from anything mechanically wrong, the pain is still REAL. And doesn't hurt any less just because there are no broken bones or inflammation. So whilst it didn't really help any with my own pain it did make me a better person.

All the best
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 09:20 AM
Pezami
Yep have been there. I think most of us have.
I do have some "female issues" but they can't just assume if nothing shows up on their test that that is where the investigation ends and label you with the just making things up/ all in your head crap.
My sister nearly died because of this when she was 14, turned out her appendix had burst and the only thing that saved her life other than the doctor that finally picked up what was wrong, was that her body had formed a cyst around the appendix so when it burst the cyst contained all the bad stuff.
I just wish doctors would follow the old saying of If at first you don't succeed, try, try again. But sadly if you don't have the first thing they thought of they are stumped and it is the patient who must be wrong, not them.

Take care.
Posted By: Winter Re: Broke down at the doctors today. - 08/31/13 04:39 PM
So sorry your pain clinic let you down. Try not to take it personal. I have found, my pain doctor does not understand the complexity of my disease so I mainly treat with my Rheumatologist, Immunologist and GP. My anxiety and depression is situational, only happens when my disease is not being managed properly. Who the heck wouldn't feel those emotions when your body is under extreme physical stress. Good doctors understand that it is just situational when the disease is out of control.

Hope you try Enbrel again soon. If it doesn't work out, you can try another biologic. Simponi has low allergy risk and I am doing much better on it because it has no preservatives. Keep us posted, we are here for you.

Shari
Posted By: aussiegirl Re: Broke down at the doctors today. - 08/31/13 10:52 PM
Shari
Thanks. I might try Simponi then. It was recently (last year or so) been put on the PBS here so it won't cost much so definitely worth a try.

Yes yes yes you so hit the nail on the head. The anxiety and depression is situational only. I am not anxious or depressed every day or even every week. Only when my pain is really bad especially when it affects my hands. And my anxiety is only when take medications or when those horrible stop smoking adds come on TV. I know I should stop smoking but it is hard (I am trying) but the adds don't make/help me stop they just make my so scared and anxious. But in general I am not an anxious person and I do not suffer anxiety away outside of these times.

As for the adjustment disorder well personally I think my reactions to the way my life has changed due to AS is no different to anyone here so if this makes us crazy well at least I am not alone I know I am part of a big family of crazy people here lol.
Take care.
Posted By: rumble Re: Broke down at the doctors today. - 09/01/13 07:32 AM
Hugs, dear. I hope you can find a different pain clinic. There are others in your area, right? My pain doc told me (after a normal lumbar MRI that was just a couple of weeks after I had to miss 4 days of work for a huge flareup of symptoms) that they believed me when I said I hurt. Specifically, disks could be pain generators even when MRI signs were not severe. I suppose a good pain doc would be aware of this and that your doc might not be 'in the know.' Find a good one if you can. I hope you can. But don't lose faith in yourself. (((((aussiegirl))))))
Posted By: Sue22 Re: Broke down at the doctors today. - 09/01/13 05:14 PM
Originally Posted By: aussiegirl
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


Hi Trish,

we gals (and guys) have gotta stick together smile

I am still on LDN, along with the Humira. My rheumy allows me to do both. Thinking the LDN may keep my immune system "healthier" for being on a biologic. Also the vitamin C for that reason (orders from the rheumy).

Huggs hugss
Posted By: cemc Re: Broke down at the doctors today. - 09/01/13 07:30 PM
Sometimes I think it does good to break down in front of doctors - particularly either very caring ones (like your GP) or very uncaring ones - sometimes its the only way to really get through how bad things are.

I would be so angry too with the pain clinic for having basically been completely dishonest and pig ignorant with you. How on earth can a pain clinic hope to treat you if they don't have any idea of the impact of AS on your body? Maybe thats the first question for any new doctor, that is treating you for anything - "what do you know about AS?".

I know the whole psychological thing too - I don't believe its "mental illness" if its situational, its a normal reaction to an abnormal situation. If you can find the right psychologist (probably not someone who works with that pain clinic!) who really understands chronic illness, chronic pain and CBT, then you may be able to get some useful help. But, I totally agree that its not going to get rid of your pain. It might help you cope a bit better, it might drop your pain one notch on the pain scale which would make it manageable, but AS inflammation and damage just doesn't go away with mind control.

I understand your medication anxiety too - if your GP wants to help you try things again, then I am sure that together you can find a "safe" way to do it, where you know you have medical backup if things go wrong as well as the means to call that backup (which might include family and friends being aware of danger signs, and some kind of emergency speed dial on your phone).

Hang in there. Your GP sounds great. Let them lead on a plan for you, and I really hope things turn the corner for you soon.

So glad you were able to get out and do something nice too - even if it meant you had to accept the hurting afterwards.
Posted By: Possi Re: Broke down at the doctors today. - 09/01/13 11:46 PM
((Aussiegirl)) I think of you often. I am glad you got to be out and do something that you enjoy.
Posted By: Winter Re: Broke down at the doctors today. - 09/02/13 01:23 AM
I am glad you may try Simponi and hope it works great for you too. It is helping me so much, especially in my back. I went from having a hard time sleeping, driving, walking, sitting, standing and feeling stressed out and anxious most of the time to living life again, with a lot less stress smile. If you are scared of any reaction from it, just ask doc for back up steroids to have at home so you don't have to go in. I am very sensitive to medication and usually get major reactions from biologics but so far, so good on Simponi. I do take two Benadryl and two ES Tylenol about an hour before the injection. The once a month dosing is nice and it doesn't even hurt going in. I do feel more tired the day after the shot and do get sick more but it is a trade off.

In terms of your smoking, you can always try quitting once your disease is better managed, you have a lot on your plate right now. My sister has been smoking for years, is on Remicade, and never gets sick. She works full-time, in the public and has two school aged boys. I used to smoke but don't anymore.

Keep us posted and hope you have some better days real soon!

Shari
Posted By: Sue22 Re: Broke down at the doctors today. - 09/02/13 07:33 PM
Originally Posted By: cemc

I know the whole psychological thing too - I don't believe its "mental illness" if its situational, its a normal reaction to an abnormal situation. If you can find the right psychologist (probably not someone who works with that pain clinic!) who really understands chronic illness, chronic pain and CBT, then you may be able to get some useful help. But, I totally agree that its not going to get rid of your pain. It might help you cope a bit better, it might drop your pain one notch on the pain scale which would make it manageable, but AS inflammation and damage just doesn't go away with mind control.


Well said smile
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