Fibro Sufferer Looking For Diagnosis

[looneylane]

Hope it went well let us know!

[Shadowyfox]

So...not good news. My doctor didn't take a word of it seriously. All he heard was that my sleep was sh**, and he was going to draw some blood. He couldn't find the early results from the GI biopsies, so he has seen no signs of inflammation markers.

So, yeah...he's not going to refer me yet. My mom and I both were shocked. My mom is so genuinely flabbergasted by it that she told me later that she would be calling my doctor and telling him SHE wanted me referred, and then she'd be calling her rheumatologist to tell him what was going on with me, and where my doctor was dragging his feet and get me referred that way.

I posted a big huge rant about it, and it's just gonna make the rest of the week very rough.

[foxgrove]

Dang.. I thought it might go that way.  Some doctors think that they are the be all and end all of the medical world.  They are too insecure in their position to admit that they don't have all the answers.  It's a real shame that this doctor seems to be just like that.  Hang in there... I think your mom's POd enough to get things moving.    You sound like you're in good hands there!! 

Keep your chin up brother.  Better days are just around the bend. 

[db]

Unfortunately, your experience seems all too familiar to us men.  Even when we get diagnosed it always seems to take along time.  Even then, after seven years, my old doctor finally concluded that it must be the case, but only after I was after him to refer me to a local Fibro center.  I never did go.   

Anyways, I was first diagnosed with chronic myofascial pain (CMP).  Again somewhat reluctantly.  This condition is very treatable but it pretty much was up to me to seek out help.  Even knowing allot about what I have it has been almost impossible to get the doctors, physical therapist, and others to get on board.  Fortunately, what I finally did on my own has helped.  It's still hard to get them to do much.  I am forced to be insistant.  This was pretty hard to do before when I didn't know what was wrong with me.  I would still like to find more help but I don't see much more out there.  Incidently, there is a good manual in the resource column that discribes CMP and it's relationship to Fibro.   Starynl or something like that is the author.  It made allot of difference to me.   

db

[foxgrove]

Yeah.. there are a number of good manuals out there.  I think the one you were referring to was Devin Starlanyl's "Fibromyalgia and Chronic Myofascial Pain: A Survival Guide Version 2".  It's an absolutely essential guide to life with fibro in my opinion.  It covers so many things that I never even considered when I was first diagnosed that make so much sense now.  It's one of the best resources I could recommend.

If you want to get further into treating your own CMP symptoms, I would suggest you take a look at Clair Davies' "The Trigger Point Therapy Workbook: Your Self-Treatment Guide for Pain Relief".  It has many more trigger points listed and gives you practical advice on how to go about treating all of them.

[looneylane]

I can never get a copy when I look but I hear it is awesome!

[chris777]

Don't doctor shop till you have to Dr shop.

That being said sounds like you need to Dr Shop.

However Not sure a Rheumy will help much other than possibly giving you a Fibro Dx.

You may want to look into infectious Disease, Just in Case they do extensive blood work and  check for many things.

[db]

I have had all the blood panels but nothing they seem to act on.  I do have CMV titers but they seem to think this just a secondary indicator. 

I've got all the manuals, but just not the energy to do all the therapy the trigger point book list.  Acupuncture seems to be the best balance between treatment/ pain/ sleep disturbance/ benefit/ & cost.   It's just hard to measure progress although I'm sure it's there.  db 

[foxgrove]

I've got all the manuals, but just not the energy to do all the therapy the trigger point book list.

I totally agree... it's harder than hard to get time to learn these things.  I cheat!!  I used videos to teach me how to do it and the books are a reference thing.. when I've got a pain that I can't fix by massaging where it hurts, I do the reference thing and go through the different muscles.  It is possible for more than one trigger point to cause the same pain but it's more rare than you'd think.  The referred pain maps are pretty accurate and enormously helpful at tracking down the problem.  From there all you've got is a few paragraphs of reading to do.  Easy peasy chips and cheesy!! 

My motto comes down to something like if there's an easier way to do it, do it!!

[ronr]

Seems to me like when you start that you can spend all day treating the many different points.   I choose to treat just the worst of them when they flare so that I don't spend all day every day just treating pain points.  If you can catch them soon enough then a short treatment here and there will suffice.  Once again, we must be aware of what our body is telling us to do it this way.

[foxgrove]

Well said Ron.  I've had far too many marathon sessions where at the end of all the manipulation, there's absolutely no energy left to DO anything.  It's just not worth it.  I guess it's like how to eat an elephant... one bite at a time.

[countryboy]

Amazing how having one little small muscle pain that can cause a title wave.  It can spread and spread until you aren't sure where the worst part of the pain really is.  Then it's time for a relaxing soak in a warm hot tub with a cool drink in your hand and the radio tuned into some nice soothing relaxing music.  Next comes the bubbles gently massaging your whole body.

Then of course you would need some nice attractive lady friends stirring up the air with those large feather fans that you see on TV.

Damn.  Was dreaming again.    

[Robby]

Next comes the bubbles gently massaging your whole body.

Depends on what is causing the bubbles   

[looneylane]

  lol

[foxgrove]

Welcome to MY bath!!!  Bubbles come pre-fragranced!!