I am new to this and scared, need advice

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eyesoffire30
Regular Member


Date Joined Aug 2005
Total Posts : 296
   Posted 9/9/2008 8:33 PM (GMT -7)   
Hi everyone, let me start off by saying that I am usually hanging with the Cronnies since I was diagnosed with it and had surgery last Aug. now onto why I am here, I am scared, I have been having so much pain all over my arms, hands, feet, legs, my groin muscle and pain in my back. It started about 6 weeks ago and then 2 weeks ago I had a flare up of my Chrones again and that went away but the pain is only getting worse, I can only wear slippers to work and when you are an assistant manager in retail it looks funny. I thought maybe it was part of my Chrones and then I started reading about Fibro, I have over half of the symptoms and all I could do was cry, is this really what is wrong with me. I have an appt with my GP on thursday but I need to know what to ask, also how do they test for it and what is a course for successful treatment. I am a wife and mom of 10 wonderful children that saw me suffer through one disease and now they are worried because they see the pain I am in . I am scared shakehead
Surgery Aug 3,2007...15 inches small and 3 inches of large intestine removed. On no meds and in my first flare since.
 
"Part of the secret of success in life is to eat what you like and let the food fight it out inside." Mark Twain. I love that one!!!!


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 9/9/2008 9:13 PM (GMT -7)   
Hi eyes...and welcome to our warm family. Relax!!! first of all. Stress only increases pain of any sort. As you can see there is a huge family of people in here who live full lives with fibro. So if that IS what you have you can handle it. It takes learning on your part and a good, compassionate doctor. I have UC so somewhat understand what your life is like, but the fibro causes me the worst of my problems.

When you go to the doc explain to him what you learned and ask his opinion. If he balks and says...oh, that's nor real, or something similar, get yourself a new doctor. There still are a very few out there living in the dark ages. But mostly doctors are savvy on fibro.

Then, if I were you, download this free Pain Journal page and print off a few copies for yourself. Off and on I will keep a journal for a few weeks, then take a break. But at a time like this when your doctor needs to understand what your pain is like it would be a great time to start logging it daily for a while. It will make it much easier and faster for him to discover where your pain is coming from. Here is the site...

http://www.painfoundation.org/Publications/TargetDailyLog.pdf

Even if you only have it filled out for one day before you go in, at least he sees your are serious and knows something about your pain.

Good luck with your appointment and always feel free to ask anything in here. It's how we learn and help each other.

Hugs,
Chutzie
Co-Mod Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, collapsed disk, dermatitis herpetiformus, osteo arthritis in spine and other locations.
***************

The only difference between genius and stupidity is that genius has it's limits. Albert Einstein: (1879-1955)


Kythe
Regular Member


Date Joined Jun 2008
Total Posts : 261
   Posted 9/10/2008 8:30 AM (GMT -7)   
Well I can tell you that there aren't really any definitive tests for fibro. It's basically a case of ruling out other things like lupus and other various diseases that can have similar symptoms.

The only test they really do for fibro is the pressure point test where the doctor presses down on various points to see if you have pain there and you have to have pain in a certain amount of the spots to be considered to have fibro. This test really isn't accurate, you can still have fibro even if you don't have the specified amount of painful pressure points, and you can also have painful pressure points other than the ones the doctor normally checks for.

The best specialist to see for this is a rheumatologist. Before you go for your appointment, you should write down all of your symptoms, even ones that don't seem like they might have anything to do with fibro, because fibro has a ton of various symptoms that go with it and not all of them are well known. You can also do this with your GP, but chances are they are going to refer you out, so might as well start looking for a rheumatologist now.
~Kythe
____________



Allergies, Asthma, Anxiety, Depression, IBS, PCOS, Fibromyalgia


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 9/10/2008 8:42 AM (GMT -7)   
Hi, Eyesoffire, and welcome to the fibromyalgia forum!  I'm so glad you joined us!  You have gotten some good information from Chutz and Kythe.  I fully agree with Chutz...RELAX!  I, too, have Crohn's disease and I ended up with an ileostomy...which, by the way, was a wonderful decision!  Anyway, the pain is probably from fibromyalgia and  you will find something that will help with your pain and fatigue.  I take ibuprofen (with food) and Tylenol for the pain.  I do not have small intestine involvement...at least not much...so I do take the ibuprofen.  You should definitely ask  your gasto about that first, though.
 
I also take malic acid/magnesium supplements and that helps with pain and fatigue.  With fibro, as well as Crohn's, we seem to have vitamin and nutrient deficiencies.  For us, with Crohn's, we have absorption problems.  My doctor has me taking folic acid to help with absorption.  I also take vitamin D, calcium with D, and iron supplements.  See if your doctor would do blood work to see if you have any vitamin deficiencies.  Meanwhile, I just bumped up the thread all about malic acid/magnesium supplements.  It has links that explain how it works in the body and there is even a link to a double blind study about it.  My doctor thought I was crazy for wasting my money but he said it wouldn't hurt me.  He was wrong!  The supplements really do help!  You might want to ask your doctor about this and if they are hesitant, ask if it could hurt you to try.  Many MD's frown on supplements.
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There is a lot of good info about fibromyalgia, along with a list of symptoms.  This may help you too.
 
Meanwhile, I'm glad you are here.  Try to relax.  We have wonderful people that have great ideas on how to live a full and enjoyable life with fibromyalgia.  Hope to hear more from you soon!
 
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


d2parrotperson
Regular Member


Date Joined Aug 2008
Total Posts : 320
   Posted 9/10/2008 9:10 AM (GMT -7)   
Hi! I have Crohn's too. I cannot take any NSAID's. Don't fight it. It will only make it worse. I know acceptance takes time. You must come to terms with what you can and can't do now. Find a good dr., either a pain clinic or a Rheumy who is not afraid to treat the pain. Relax and accept is the best advice I can give you!
150mg Azathioprine, Lomotil, Iron, Nexium 2/day, Fentanyl patch, Oxycodone, Baclofin
Crohn's, Fibromyalgia, Several bulging discs, Bone spurs, Osteoarthritis, Osteopenia, Reflux, Stenosis, Strictures, Dengenerating facet joints
2 resections
 
Stephanie
When I am weak, then am I strong


kelly71
Veteran Member


Date Joined Jun 2008
Total Posts : 726
   Posted 9/10/2008 9:49 AM (GMT -7)   
eyes,
 
Welcome to the fibro family!  First of all I have to say that you must be a very patient, loving, and amzing woman.  I mean, 10 kids?  WOW! shocked   LOL-I don't have any children, but I can't imagine being sick and having to look after 1 child, let alone 10.  I think I'll call you "Supermom." yeah LOL
 
Anyway, I hope you'll feel comfy enough to post over here with the fibros.  We really are a family.  Some days, I don't know what I'd do without y'all. blush   So, please feel free to post as much as you want.  We are all here for you! :-)
FINALLY dxd on 06/13/08
Vicodin, Neurontin, Ibuprofen for pain-which doesn't help, BTW
Zoloft & methadone (NOT for pain) for sanity-which doesn't help, BTW
Klonopin for anxiety (Guess what?  Doesn't help!)
Chantix to try to quit smoking (started 08/20/08)
 
"I'll take the Chivas instead"
-Kelly Clarkson


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 9/10/2008 10:35 AM (GMT -7)   
Hi Eyes,

You have gotten some wonderful advice so far. I agree with Kelly, wow, 10 kids. No wonder you are tired.LOL... I think that Supermom is a good name for you. You must have had so much enjoyment raising your children.

Keep posting, we would love to hear more from you.

hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 9/10/2008 11:39 AM (GMT -7)   
Eyes,
Successful treatments for fibro include malic acid but with your crohn's this probably won't work. My daughter has crohn's and fibro and is recovering from an incomplete spinal cord injury. As her feeling returned it was mostly fibro pain but she was glad to be feeling something.

Lots of rest, gentle exercise, low stress, lots of family help, tons of fluids, these are the regular things that help.

Serotonin boosters like Zoloft or Lyrica are prescription meds that help as well as many of the other meds that our members are trying. It's kind of a "any port in a storm" kind of disorder and you have to keep trying things till you find a mix that works for you. Glad to make a new friend but sorry for the reason.
~ Jeannie, Forum Moderator/Diabetes & Fibromyalgia
I know God will not give me anything I can't handle. I just wish that He didn't trust me so much. ~Mother Teresa

"People are like stained glass windows: They sparkle and shine when the sun's out, but when the darkness sets in, their true beauty is revealed only if there is light within."- Elizabeth Kubler-Ross


eyesoffire30
Regular Member


Date Joined Aug 2005
Total Posts : 296
   Posted 9/10/2008 7:30 PM (GMT -7)   
Thank you so much everyone, I think this is the first drs appt I am actually looking forward to going to since I was last pregnant! I had enough today was a bad day when I woke up my fingers and toes were numb like they were asleep and my legs were stiff so "supermom" called out of work. I will let you all know about my appt as soon as I can. Again thank you!

Surgery Aug 3,2007...15 inches small and 3 inches of large intestine removed. On no meds and in my first flare since.
 
"Part of the secret of success in life is to eat what you like and let the food fight it out inside." Mark Twain. I love that one!!!!


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 9/11/2008 7:57 AM (GMT -7)   
Hi Supermom and welcome. I'm still trying to figure out how you take care of 10 children, work full time and deal with crohns. I think Supermom is very fitting.
 
I don't know if this has been mentioned but print out a list of the symptoms of fibro and mark the ones you have an take it to the doc with you.
 
I had been telling my doc for several years that I didn't have enough energy and he always had a reason, I'm sure doctors hear this everyday from patience. I finally went in one day and got firm with him about it and told him when you have to drag yourself to the shower after putting in a few hours of work something is wrong. He took me serious and said okay let's do some test. So I think sometimes it's the tone of your voice that gets their attention. Especially if they have known you for awhile.
 
Good luck
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches and Tramadol
 
Co Q 10, Super B Complex, Extra B12, Multi vitamin


Sue2z
Regular Member


Date Joined Jul 2008
Total Posts : 368
   Posted 9/11/2008 8:48 PM (GMT -7)   
Get your doc to send you to a specialist and if your doc wont help with the pain or is not fibro friendly change docs, it took me two docs and two specialists before I was finally taken seriously and given med help I needed.  I am afraid all the time, I want to cry  but ive cried so much that tears dont come. I feel worthless and afraid of the future all the time, you are not alone, but be prepared that you may get the run around, most of us have and its taken time to get onto the right people.  luck    sue2z :-) :-) :-)
Fibromyalgia, ulcerative colonitus, arthritus, bi-polar
norspan patch, valium, prothiedon, lyrica

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