Lots of pain and feeling down

[allium]

I haven't posted in a bit, and I don't feel like my pain and troubles come close to what many many people have to deal with daily, but I just need a bit of support tonight.

My second visit with my rheum is tommorrow, and I'm supposed to learn what the latest blood tests show.  This same guy told me since I had tested neg for sjogren's, that it was highly unlikely that I had it, and it was more likely MS.  He also told me that he wouldn't do anything for me if it was MS, and doesn't prescribe any pain meds; that's up to my GP to do.

My brain MRI supposedly doesn't show any MS leisions, but has some scattered non specific white foci matter ( the "duh" factors), not believed to be of significance.  It also showed that the top part of my c-spine indicated significant spondilosis with disc and ostepathe bone spurs.  I had a c spine MRI last week, and may or may not find out about this tommorrow.

I just think that I will be treated again like I am nuts, and am only a drug seeker.  I've been in constant pain now for more than 10 years, with hip and upper back, now increasing every day for the last three months at a horrible rate.  I don't know what even to try to take tonight; the Naisids seem to do nothing, the neurotin I'm afraid of, and the vicoden I think may be affecting my hearing (but does seem the most effective).

If all the tests are neg again, I don't know where to go from here.  I wonder how many disorders I just might have; Sjogren's, perhaps MS, perhaps Ankylosing Spondylosis or spinal stenosis, RA, fibro.  My dry mouth, elv. sed rate, hair loss, and hearing problems I think show some kind of AI.  But I don't have the overwhelming fatigue as of yet.

I'm just feeling depressed, and I'm not making much sense, but thanks for listening.
Sheila

[JannaLee]

Sheila honey,

You are making very good sense. 

What does a person do when their doctor will not address their pain?...when their doctor does not show compassion/concern or is unable to relate a sense of understanding? 

Go to the nearest Yellow Pages and find a new doctor.

I'm hoping this guy shows up with a new attitude tomorrow and you come away with your needs met!

Best to you, my dear!
Janna

[songbird]

I hate doctors that give you that blank stare... sometimes I think its because they are afraid to admit they dont have an answer. So if they dont have an answer then you must be a nut of course. But we all know thats not the case at all. Im so sorry for your situation I too am kinda in that spot right now. I have been dx with sjs but am having all kinds of new stuff popping up now. Neuropathies, weaknesses, and a host of others ....its become a whole new party one i wish not to attend but...no choice here. But at least I have doctors that are relatively supportive..some more than others. My eye doctor today was so sweet.. he listenend and just gave me such encouragement and he is such a small part of my treatment. But I so appreciated him. And its funny the first time I met him I hated him. I had decided I was only going back to him once and then I was going to find a new Dr. But I guess everyone is entitled to a bad day. I have been seeing now for 2 years and hes great~! Maybe your dr will be like that too. We can only hope!

[daydreamer]

Sheila,

I have to agree with Janna. You need to find a new doctor as the one you currently have sounds like a royal you know what  .....oh yes we just love being in pain and resorting to narcotics for some relief....what a schmuck 

I really hope you start feeling better soon. I have a lot of the same problems with hearing, dry mouth, pain, hair loss etc. Take care and keep us posted.....Kim

[lynnmarie219]

Hi Sheila,


I'm so sorry for the pain you are experiencing right now and I hope you get some answers and some treatment to deal with the pain and other symptoms that you have mentioned here. You deserve to be listened to and if you cant get any satisfaction....its probably time to look for another doctor....even though I know you probably hate the thought of starting over!

But lets think positive......and I wish you good luck tomorrow and I hope this doctor stands up and gives you what you need and LISTENS to your concerns and offers suggestions and guidance for treatment! Let us know how it goes!

Hugs to you......

[Collie]

I am sorry you are having a bad day, it sure sucks when we are hurting and no one seems to believe us. I agree with the others, you need to seek out another Dr., one that will listen to you and believe what you are telling them.

Collie

[allium]

Hi Janna.  Wasn't sure if I was speaking in tongues or not (or hydrocodonese).  

I will be flying solo tommorrow for my appts; husband does have to do something in exchange for that health insurance policy for the both of us.  I am wondering if the dr will act differently without him there.  I'll try to have a good attitude and hope that the tests are revealing something.

Songbird, I also am having neuro problems, and am finding that anti inflammatories do help a bit with the numbness and tingling in my hand, foot, and cranial neuropathy.  They aren't doing much for my pain.  Glad you have found some good people that are willing to make an effort for you.  My opthamologist told me that AI diseases don't cause any eye issues.  

Where ARE those yellow pages (sez my white matter foci)?

Over the years, I've learned to be cautious about bringing up the pain issue.  Seems that just saying the word to a lot of docs labels you as a possible drug seeker.  It's moronic and useless, but that's the way it seems around here at least.  Younger docs are the worst, the "just say no" generation. Don't trust anyone over 40...they're all drug crazed hippies!

Kim, yeah, shmuck.    Well , the rheumy may still get his wish that I really Have MS and he won't have to be troubled by me again.  Maybe I'll just take that decsion out of his hands anyway.

Hi Lynnmarie and Collie- thanks all for the great support.  

[Tinker]

Dear Sheila,

Wow, have I been in your shoes.  About a yr ago I was going to a major cancer center pain clinic for my fibromyalgia pain.  This new doc came in (he looked about 15) and said I needed an anti-depressant and exercise and he didn't believe in narcotic pain relief.

At that point, I told him that he did realize that many other medical professionals disagreed with his treatment suggestions.  And I stood up, told him I needed a new doctor, shook his hand and said it wasn't personal.  (I lied...it was extremely personal.)

I DID HAVE A PROBLEM WITH THAT LITTLE SNOT NOSE KID TELLING ME TO EXERCISE AND TAKE SOMETHING I HAD TRIED 10 yrs. ago. 

I dumped him that day and never looked back.  He didn't believe in FM and I had no use for him.

It was kinda fun firing him!!!  lol    And my first name is Sheila, too!

Sending you positive vibes and a new day with new hope!  xoxox

[allium]

Thanks, Tinker.  That's the attitude I need to have; don't mess with the headbanded one!

I'm glad you spell your name like a normal person and not one of those that make problems for the likes of us (Shelaugh, etc).

May we all shine on.....

[genko_b]

Hi Sheila:

I will join the chorus of those who think you need a different doctor. Not just one, but two. Your ophthalmologist says that auto-immune conditions don't cause eye problems? Send him our way and we will re-educate him fast.

Hopefully your appointment tomorrow will give you some better answers.

Genko

[Pooh]

Hi Sheila,
So sorry you are feeling so bad and low.  Please tell me you live in southeast Pennsylvania.  If you do I have a group of fabulous doctors that would be just what you need. 

It breaks my heart when I hear of some flippant doctor telling people how they should feel and what they should feel, because he won't give you the medication you need.  Geez, why do they think we go to them.  Some of us could stay home and have our family tell us the same thing.  "Just get over it and get on with your life".  Now wouldn't that be wonderful to be able to do just that.  Auuggghhh!!!  That's almost as bad as "it's all in your head".  Just for one day, I wish they had to walk in our shoes. 

Take care dear and please, see if you can another doctor.  There are good ones out there. 

Hugs, Pooh

[Dixie]

Dear Sheila,

Thanks for stating my exact feelings re the doctors.  I feel most of them are arrogant, dismissive, and feel totally superior to their patients.  Especially, "the snot nosed kids" you mentioned.  I wish I could live without ever seeing another doctor, but guess I can't.  However, I do avoid them as much as I can.
Dixie

[beverley]

Sheila,

It's people like your doctor that make us sjoggies feel guilty all the time.  We know how we feel, most of us are intelligent, active, busy people and not likely to make up symptoms.  We already feel bad about our ailments and how they affect not just us but those around us as well - and then we get some rubbish advice and opinions from professionals who, frankly, should know better.

Go get another one - I don't know how easy that is for you.  I live in Cornwall in England and I'm not sure how I would go about getting a different doctor, but if you're in America I guess that might be easier?  Anyway don't let them get you down.  It's their problem not yours!
Deep breaths and off you go - we're rooting for you.
Beverley

[songbird]

As for your doc saying AI doesnt cause eye problems get a grip. He needs to talk to my Opthamologist hes the one who caught my sjs when all the rest of my drs werent paying attention.

And as for your pain doc I had one just like him. Kept giving me these really expensive epideral injections treaments that paid him a lot of money but did nothing for me and scared the beee jeebers out of me. When I kept saying I didnt feel better and was still in pain ....he acted like it was the first time I had said it and would schedule another treatment but when I couldnt hear after one of the treatments (even though its was a few minutes) I said no more.

When I met with the new Doc. he asked why I was switching ..he kinda laughed and said I was the 5th patient he had received from the other doc that week.  He's great and I am so glad I switched . I feel like an active part of the equation and I know he listens to me but I get to make decisions about what I am comfortable with too....medicine or other choices.

You shouldnt have to suffer or feel like a drug seeking addict. You hurt and there are medicines to relieve that pain. Its like my doctor said if you are taking it for the right reasons then its perfectly ok to take pain medication and you should do so as needed.

[wen.uk]

Sheila, sorry you're feeling so bad and the frustration just makes you feel doubly worse.  As someone once said to me, "the doctor is your servant, not the other way round", stick to your guns and don't stop until he not just listens but understands too.

Wen x