Question for you Fibro gals and guys

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porkysgal
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 10/27/2009 9:50 AM (GMT -7)   
  Hello all,  I have  a couple of questions, I have read your Fibro 101 and it gave alot of great info.  My background is Crohns for 23 years, on Imuran, Humiria and Entecort.  Now for the last few years but especially the last few months I have been having quite a bit of joint pain in my hands, neck, shoulders , elbows and hips, also get this overall feeling like you are going to get sick, aches and low fever feeling but never do.  I just had the sed and arthiritis panel done and came back ok.  Now I am thinking maybe Fibro?  My GP is supposed to be refering me to a Rheum but that was two weeks ago, guess I should call.  Now my husband thinks I am going crazy and he says I am "out there"  now I am thinking maybe that is the so called fog but I do feel quite spacy at times, thought it was maybe menopause.  Sorry so long, sometimes i think the docs probably think i am looking for things to just have something but believe me, i would really like to chalk it up to getting old but it just doesnt feel like that.  I know you guys are not docs, guess I am just looking for a little advice as to whether i should actually pursue any further. smhair
Thanks
Deb

jamies.mom
Regular Member


Date Joined Dec 2006
Total Posts : 53
   Posted 10/27/2009 10:44 AM (GMT -7)   
My husband used to get angry with me, saying that I liked having things wrong with me, and was either making things up or exxaggerating them for attention, or to get out of doing things like housework and such. I was always shy about talking frankly with my doc, in case he would start thinking the same thing. I know how frustrating it is dealing with healthy people who don't understand. To make it worse, my hubby has an incredibly high tolerance to pain - I am not sure he even knows what pain feels like! I think you should call your doc and let them know you are still waiting for that referral. It took almost three weeks before I got a letter from my rheumy with my appointment info and a questionaire to fill out. So you might hear soon. Best of luck. Pursue it, and you will be glad you did!
fibromyalgia, microscopic colitis, restless legs, polycystic ovarian syndrome.


LVangel
Regular Member


Date Joined Oct 2009
Total Posts : 52
   Posted 10/27/2009 12:26 PM (GMT -7)   
I agree there is no harm in getting good doctors advice and only you know how you feel so don't let people tell you differently. It's your body, you have to live with it.


~Laura

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 10/27/2009 2:40 PM (GMT -7)   

Hi, Deb, and welcome!  I also have Crohn's disease but it is under control so I'm not having to take medications for it.  But, when the fibro hit me, it started in my toes and worked it's way up my body and then hit my elbows and hands...all in 45 minutes while I was watching TV.  My elbows were the worst.  It was like I banged my elbow hard and I felt "electrical shocks" running down my arms but it never stopped for over two weeks!  So, yes, you can have the "joint" aches and pains.  The reason I put the word joint in quotes is because it's actually the muscles, tendons, and ligaments that you are feeling...not actual joint pain that you have with like rheumatoid arthritis.  Fibro doesn't affect the joints.  It just feels like that.  So, that is good news for we fibro sufferers.

We also have what we call fibro fog...at least most of us do.  When it started with me, I was really frightened because I thought I was coming down with Alzheimer's!  But, once I found out that fibro caused that, too, I relaxed about it.  A good sense of humor does help with that problem. 

So, you might want to talk to your doctor about your possibly having fibromyalgia.  If they are not sure, they will probably refer you to a doctor that can truly diagnose you.  Let us know what you find out because we really do care!

Sherrine

 


Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


porkysgal
Regular Member


Date Joined Jan 2008
Total Posts : 95
   Posted 10/27/2009 6:16 PM (GMT -7)   
Thanks ladies, I called my GP and they have referred me to a Rheumy, they told me his name and I looked him up and he had awful ratings, just my luck, They said he is 65 and does not listen, wonderful. He has an associate that is a lady that had great ratings so I will see if I can request her. So if I do have Fibro I will be back to join you all, you all sound like wonderful people to have to go thru so much.

Sherrine, thats great your Crohns is under control, I have never been in remission and have been in the hospital 3 times this year with partial obstructions even on all three of the meds, nay have to go for another resection, hope not.

Take care all and hope to get to know you all better.
Deb

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 10/27/2009 10:04 PM (GMT -7)   
Hi Deb!!

Sure glad you have joined the fibro family!! If it were me I wouldn't take a chance on a doctor that you are not comfortable with. Not sure where you read the ratings and the comments and they may have been put there by one or two disgruntled patients, but it sure would pay to make sure. If they are true then absolutely go somewhere else! Getting the right doctor means everything when you have so many issues to deal with and generalized unexplained pain. Plus anyone who isn't interested in finding out what you have and giving is some sort of name isn't worth going back to.

When you are considering a new doctor, like the rheumatologist, ask that the first appointment be an interview...YOU interviewing the doc as well as him/her interviewing you. Ask what their knowledge base is on fibro and how he treats it. Leave it open ended meaning you don't need to say what your opinion is, just them this person explain their views of fibro. That should tell you what you oneed to make a decision. Oh, another thing that might be good to ask him and/or his office staff is how long is the average wait time for appointments both to schedule on and once you get there. Ask people in the waiting room if they have been there before and are they on time with your appointment, within reason. No way I'm waiting 60-90 minutes in the waiting room. My time is just as important as theirs...even more so because it's MINE...lol ;-)

My fibro came on more slowly. I tried ignoring it for quite a while and figured I was just badly out of shape. But when your muscles hurt worse and worse it's time to find out why. Fibro IS a muscular problem but it also can be in the ligaments that hold the muscles to the bones/joints. This is why it can feel like your joints hurt whey it's really a muscle.

OK, I've babbled way more than I intended but sometimes I get on a roll. I do hope we become friends and you enjoy this great bunch of folks who are here.

Chutzie
Children will not remember you for the material things you provided but for the feeling that you cherished them.
Richard L. Evans

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)

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