Chronic Pain Support Group

Physicians and professionalsdefine pain as chronic if it lasts longer than three to six months and is persistent. It's distinct from acute pain that is a direct result of injury or trauma. This support group is dedicated to those suffering from chronic pain. Discuss treatments that have worked for you, find advice for your specific experience, and find support. You're not...

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deleted_user 03/29/2011

I've experienced some pretty bad progressive pain since September 2007. What's confusing is my blood tests keep coming up different and all over the board, but mostly 'normal'. Pisses me off. I am in excruciating pain. I need multiple fusions - sorry for the repeat for those of you who know all this. The fusions I need are C3-C4 and my SI joints and L5-L1. My hips fall out of socket if I am standing and turn ever so slightly. and it HURTS! My neck muscles are not strong enough to support my neck so I have a neck brace. I have a hip brace. I have a walker. I went to a neuro who said he preformed an exam HE DID NOT. This is when the "doctor phobia" stuff began...or got worse. Not only did he document an exam that he did not preform, but he faxed this exam to my LTD (long term disability) company who then dropped me. This neuro was PAID OFF by the LTD company to do this so says my atty who is going to "sue the pants off of these people". Now, before all this happened I was and still am becoming more ill, and I found that I was 'hiding in my bedroom and not wanting to come out. I didn't really pay attention to it until my sons said MOM, you ever going to come out of there? I mean I made them supper about 5 days a week, but that's about it. That is all the exercise I can handle and I am so darned depressed about it, that I guess I just stayed in bed. Well, I made an appt to see a therapist and when that appt came up, I was too afraid to see the therapist....because I thought, what if HE LIES TOO....and then I had another Dr appt that I needed to go to PT for my hips, and I didn't go because of his comment the last time I was there which was my second visit. The first visit was OMG you must feel alot of pain. The second visit was you are doing so much better now you may not need me much longer - WHAT? Are f-ing kidding me. You are not God and there is no way that you cured me in 2-20 min. visits when I had Dr's trying to repair me for over 3 years. IDIOT. So, I didn't go to that visit. I think I have Dr Phobia. And I panic every time I have to go. The only one I don't panic about is my PM Dr. The next visit with her will be my last one....because I am moving to AZ,....and then WHAT???? A whole new bunch of QUACK OMG OMG OMG. Does anyone know of any good Dr's out there??? I am going to research tomorrow!!!

BTW I have Fibromyalgia, DDD, DJD, CFS, IC, Neurosarcoid, radiculitis, Bursitis, arthritis, and sero-negative rheumatoid arthritis.
And the fricken Dr I saw twice cured me. Nope, no way. I am not going. No more Dr's, I am too scared.

Is anyone else out there scared of Dr's? Am I the only one? I mean They all lie, don't they? OMG, I feel like such a freak, but I have been treated so poorly.

Thanks for listening to me vent.

deleted_user 03/29/2011

My opinion of doctor's is pretty low at this point too. Been in horrible Chronic Neck/Shoulder pain for 2 years, and noone helps. My only suggestion is to take someone with you. 2 pairs of eyes and ears, and mouths are better than one. Sorry for what you are going through sister. You are not alone.
hugs
JD

deleted_user 03/29/2011

i think Flowers advice is excellent......two people in there are soooooooooooo much better, even better if it's someone who is familiar with your problems and how your life is affected by them......usually sore, frustrated tired and more at one of these and it is easy ( for my holey head anyhow) to miss the chance to bring up all the important stuff and ask good questions. (not to mention remember it all after) i also am sorry for what you got goin..but you can do it. one more. also, i try to go in with a prepared list of questions , ideas whatever i think the doc need s from me and i need from him/her..........make sure YOU get all of YOUR info before they do that dr.sweep and their gone in a russtle of white linen till "the next time"
hang in, take backup and makem do their job or referr you to someone who will.
PEACE...............t

deleted_user 03/29/2011

Take someone with you it does make a difference.Gentle hugs.

deleted_user 03/29/2011

I have had fusions in exactly both those areas, so I know what you are going through and the pain.
First is the neru a independent medical doctor you went to for the LTD? because they do lie all the time courts do not even listen to them because they are so biased so dont worry mine did to and then I went to my personal surgeon and he scheduled surgery that same day and the important thing I did was go to the top surgeon in my area so he trumped the IMD and my insurance company knew it and I continued to get paid.

I know you are scared of doctors but you have to go to your personal doctors who have your best interest at heart. Do not leave it up to anyone(especially LTD to choose your doctors) but you who you go to and if you go to a surgeon who you picked that you dont like go to another one but make sure they are reputable.

What you need to do is get mad and make LTD eat their words get so much data they can not dispute it. I know you are scared that doctors will not see the big picture but you have to make them see it and tell them I want the surgery if you want it and if it warrants it they will do it and you will feel validated.

I think you just do not feel validated and if you are only going by what the IMD are saying they make you feel that way on purpose. so do not listen to them. They spew garbage the one I went to after my surgery did not even know i had surgery and says I dont think you need surgery and I laughed and said are you kidding I already had surgery did you not even look at my file and he was so embarrassed. Every time I was required to see them I treated them like they were the bottom of the barrel doctors and made it a point to tell them my surgeon was the top doctor at the main hospital, and it worked they could not dispute it them.

Good luck

deleted_user 03/29/2011

Take someone with you ALWAYS. Try to make sure is someone who will be assertive and speak up for you. Also, write down, document pain, how you are not improving but getting worse and give a copy to DR. ask to be included in your file. We read my hubby's back surgeons notes recently (should have done so long ago) and he kept putting in there that hubby was improving when hubby kept telling him he was worse. WTF???is right! I'm learning the hard way, document,document,document!!!!

dmaspord 03/29/2011

Hey Eva,

I'm sorry you're having a tough time. This CP is a bear. It will take unless we fight.

I have had a similar doctor experience that I can't discuss publicly, but not as severe as your situation. That's terrible.

I hope you can get the right Primary Care doctor in Arizona that will refer you to the proper specialists and/or pain management.

I will pray for you and your family.

David.

deleted_user 03/29/2011

I've had similiar experience. I make it a point to get copies of all of my records, and when I read the notes, it is as if another person was the patient. I even make a list and ask that it be a part of my file. I understand your frustration. You know your body better than anyone. You must be your own best advocate, and as others have suggested, always have another person w/you.

deleted_user 03/29/2011

I agree with other posters - bring someone to ALL appts. When he can, my husband goes with me - I've noticed I'm treated MUCH differently when he's in the room, than when I'm by myself. I think my bipolar dx steers docs into thinking I'm nuts! I'm a professional who has a Master's degree and holds a full time job - I think that's pretty good for what I go through!

deleted_user 03/29/2011

Hi My Friend,

As you already know, I can relate with your issues, since I had both a cervical fusion and a lumbar fusion, and as you know, the cervical was a complete success, and the lumbar was a real nightmare that left me with more pain, than what I had before.

Have you tried to find a new NS and a new PM Doc? Maybe you need a fresh set of eyes to look at your issues and diagnose you. When was the last time that you had an MRI or CT Scan? If it was longer than a year ago,. you probably need a new one, according to my PM Doc, changes can happen within a few months, and having a new MRI or CT is imperative when treating patients with chronic pain.

Have you looked on www.doctorsforpain.com? Someone here found his new PM there, and he is very happy with him. Hun, I wish that I can move you to Fla. and take you to my awesome PM Doc, but I know that; that is impossible. :-(

Take care and know that you can always count on me whenever you are in pain. Sending angels to protect you, and lots of love,

Your friend,
Tipper

deleted_user 03/29/2011

my dear dear eva, i can completly relate. I have agoraphobia, its started when i got sick for the same reasons you stated and a few more. I got very depressed when i first got ill and like yourself i didn't ever come out of my room. Just to go from doctor to doctor and my labs are similar to yours too. Sometimes my sed rate and c reative protien were high, then low. Then they thought i had sero neg arthritis, unspecified myositis, vasulitis. i think sarcoid can look like many diseases. I know some people get a mixed connective tissue desiease dx before they are dx'ed with sarcoid.

I too get the hebie jeebies before i see my theripist. I get really anxiouse before i go in but once the appointment is over i leave feeling better than the day before i go in. its knowing that i will feel better afterward that keeps me going.

Its competly normal when your chornicly ill and understress to get depression and anxiety. It co insides with alot of illnesess, they even recognize is as symtoms of variouse diseases.

I dont mean to go on like this about myself i just thought that knowing your arnt alone is very important to you right now

You have so much going on. I will be thinking of you and know i'm wishing you smooth sailing to get this all figured out.

BIG BIG BIG BIG gentle hugs

write me anytime ok?

sandi7213 03/29/2011

nothing I can add that wasn't already said.

so sending you loving healing energy, and lot's of prayers that you find a great Doctor

deleted_user 03/29/2011

My gosh...every label for a chronic pain syndrome in the book....all of them leading down blind alleys and worse. THIS is the system's sickness imposed on you as the victim, NOT as much your sickness.

Seronegative RA? Red flag, RA is, by definition sero positive. Need multiple fusions? Red herring combining typical imaging findings of normals with chronic pain symptoms....almost a certainty. Some of the others?? Less glaring, but given the pattern, likely misconceptions.

I know many take offense at this idea...so be it. For those who do not, or can accept the possibility, this can be a life saving revelation....literally

deleted_user 03/30/2011

Neurosarcoid is very serious- be sure you have a referral to a neurologist when you move. You want to be able to head off some of the worst symptoms of that in a hurry. Beat of luck, faye

deleted_user 03/30/2011

Second opinions are needed to confirm what is definitive and objective versus the grey areas. This will hone down the number of concepts you have to wrestle with which should be quite helpful.

deleted_user 03/30/2011

I have to agree with cc this time, you really need to find a second or even third opinion before continuing in this path, I understand that this is an LTD issue, but do you have the choice of getting Doc's outside of their system? Will they pay for a second opinion? I am so worry about you, and want you to be well.

PM me, or give me a call,

Love & Hugs,
Your friend
Tipper

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