Silvermoon's 2011 "-Ologist" Tour

[Silvermoon]

First stop on the "ologist" tour was to see the rheumatologist to deal with my aching body. I had always (and so had doctors) put down all my aches and pains to CD related arthritis. The good news he gave me was that I do not have any kind of arthritis going on in my body - all my joints are A-OK.

Bad(?) news was, because we have ruled out causes for aches and pains related to anything else, is that he diagnosed it as fibromyalgia. He said it will probably calm down if the CD gets under control, but it might not. Apparently I am in the early stages, so he is not recommending any type of specific medication ATM, but just to use Tramacet (which my local GP gave me when I finally broke down and said I couldn't handle the pain anymore from the CD flare) as needed and go from there.......

Fibromyalgia?? Really?? Like I don't have enough pain to go through right now, you are going to tell me that my overall body pain is nothing you can do anything a bout except to give me painkillers? *SIGH*

Next week, I am off to the big city (AGAIN) for more tests (CT and scopes into every orifice they can find) and more "ologists" to meet with. Yay.

Hope the rest of you are hanging in there and trying to stay sane. Squishy cyber Moon hugs to all......

 

[Jessi]

Aw, sweetie. Sorry to hear of your troubling pain problems. I really hope you can feel better soon. Keep us posted on what happens next. :hug:

 

[DustyKat]

Ah hell Silver, just what you don't need!...BOO!...(((MEGA HUGS)))...:hug:

God I hope it settles when the CD does and in the meantime I hope the painkillers are giving you some sort of relief!

Good luck next week hun...:goodluck:

Always in my thoughts and prayers mate, :heart:
Dusty. xxxxxxxx

 

[Dexky]

Sorry Silver! I hope your list doesn't grow any more! Good luck with the ologists!

 

[outlier]

Good luck! keeping all those ologists straight and coordinated is hard. Worse of all one ologists begets another.


ask your rheumatologist about your ligaments and tenants not your joints. ankylosing spondylitis which goes with Crohn's doesn't effect the joints per say but cause inflamation of the ligaments and tenants (entenist sp?) and that causes the problems.

there is also reactive arthritis which is the arthritis that appears with and after stomach issues but cause NO permanent damage.

Just some things you can ask about that are off the beat trail of normal people but not us.

 

[Terriernut]

Squishy hugs back to you Moon!! Oh you just dont need any more ologists!! One with a magic wand to make you all better would be bestest! Here's hoping you get sorted with the ologists very soon beautiful Silvermoon.
:heart:

 

[Nyx]

Sorry to hear you're still having troubles Silver! I know the meetings with the ologists are a pain in the behind, but if they can get you well, I suppose it's all worth it. Keep us posted and healing hugs from me to you

 

[Silvermoon]

Thank you, All, for your support, encouragement, and hints :hugs: It means so much to me.

Outlier: thank you SO much for your tips, and it actually reassures me (in some way) that the rheumy I saw might be on the right track, as he went over all those things you described (as he moved and manipulated my joints and back and such) all around into different positions. He actually suggested, due to my flexability, that I may in fact be double jointed. But yes, one of the things he said was because I was so flexible and had no pain moving my actual joints and stuff around, that he ruled out any kind of AS or reactive arthritis - doesn't seem to be actual areas of pain that way.

After doing some reading on fibromyalgia, apparently there are 11 different "tender points" that if you press on them, in particular, it seems to confirm the differential diagnosis of fibro.... he found pain at about 5 of these points, plus my hubby pointed out to him (and I didn't realize at the time what they were getting at) that there where fairly specific tender points down further on my legs/ankles that come and go when he massages me. The rheumy, at that time, said yes that the points can come and go, depending on state of flare, stress and all kinds of other factors.

So as I was reading, and then remembering the convo that we had with the rheumy, it made more sense. I had always (even as a professional) kind of "brushed" the diagnosis of fibro off even for my clients - NOT that I doubted that they were in pain - if someone says they hurt physically, I do believe them. But in my professional dealings with clients who came to me with a diagnosis of fibromyalgia, I always found that, as they talked, I discovered underlying "mental health" issues, and always related their physical pain to emotional health - and therefore thought if we dealt with the emotional issues, the physical pain would go away.

As I do more research about fibromyalgia, it does seem to show a correlation between stressful life/upbringing/traumatic event in a person's life, so that part that I was thinking is kind of true I guess. The part that I missed is that, even if we do seek councelling for the emotional issues, we can (possibly) put their pain in remission, but not necessarily cure it.

And now that I am experiencing the actual pain, I do greatly (and "publically") apologize for the misconceptions I had previously - again, not that I ever doubted people's pain (we already know from MANY forms of research that mental health plays a huge role in physical health) - but for thinking that a "cure" was simple and easy...... And there is some encouragement that, he finds no physical reason for me to hurt, that at least there is nothing further, physically, falling apart in my body.

.....Plus I am finding the Tramacet works beautifully for 99% of the time... :redface: ... lol

Hugs to All...... :hugs:

 

[DustyKat]

You never cease to amaze me Silver. Your ability to keep fighting and move on is inspirational and all the while learning and giving along the way.

Much love, :heart:
Dusty. xxxxxxx

 

[Dexky]

I don't know diddly about fibromyalgia but its good to see you :wink: and :lol: because that makes me !!!!!

 

[Silvermoon]

So after meeting with Dr S. yesterday and going over a pile of blood test and exam and pathology reports, all signs point to metastatic CD on my face, peri and rectal areas, and one spot one the back of one of my thighs.... Metastatic CD is one of three types of cutaneous CD and apparently extremely rare (Dr S has been practicing for over 50 years in bowel diseases and has seen one other case, and apparently it was not nearly as extensive as mine....

I'll post more about it when I get to a computer (on my phone right now). But for the moment, treatment looks like oral and topical steroids...yay.

Hope the rest of you are doing well. Squishy Moon hugs to All.

 

[Terriernut]

Silver, I knew you were one of a kind! Very rare indeed from what I just googled. But then again, you are rare! As in scrupdiliciously lovely!

I am pulling for you to get the right treatment and be back in fine form and giving squishy hugs all over the darn place in the biggest hurry!

Squishy hugs back at you gorgeous!!!!
Misty

 

[Dexky]

Metastatic CD is one of three types of cutaneous CD and apparently extremely rare (Dr S has been practicing for over 50 years in bowel diseases and has seen one other case, and apparently it was not nearly as extensive as mine....

Quick, go buy a lottery ticket!! Lucky you

 

[outlier]

oy! Good Luck!

 

[DustyKat]

I'm with Misty! I always knew you were special Silver and this proves it!

I hope the treatment does the trick and doesn't wreak too much havoc with you. Good luck and keep us posted!!!

Thinking about ya mate. :hug:

Much love, :heart:
Dusty. xxxxxxxx

 

[Silvermoon]

Quick, go buy a lottery ticket!! Lucky you

lol That is exactly what my hubby said when we were in the doctor's office - "Quick, YOU buy the lotto ticket this week!!" - we all laughed.

Overall, things seem to be improving. it has been a bit of a hard week, as I think the "unhappies" from the prednisone kicked in a bit this week - or it could be the weather (-25 celcius and cloudy/snowing) - or it could be that my hubby has been away for the whole week and I am missing him.... but he will be home for the weekend, so maybe a good weekend to just cuddle up on the couch together and watch movies in front of the wood stove......

Hope you all are sticking in there. Squishy Moon Hugs

 

[Terriernut]

With hubby back I hope things will look up for you this weekend! And having to be alone in the cold and dark is no fun!

Squishy fat tummy hugs from the pigmy!!
xxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxxx

 

[Nyx]

Doesn't this weather suck?? Snow on the ground in November?? It's crap! But, having a wood stove and comfy couch with a loved one is pretty good...hope you have a fantastic weekend!

 

[DustyKat]

Hey Silver,

It's so good to hear that things a progressing mate...:hug:

I hope the weekend was all you wished for.

Thinking of you, always. :heart:
Dusty. xxxxxxxx

 

[Entchen]

Thanks heaps for the update, Silvermoon. Have you had a good weekend with your husband? We all KNEW that you're one of a kind (you didn't have to prove it like this!). Fingers crossed for good outcomes from the new round of treatment.