simply tolerate . . .

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Statgeek
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Date Joined Jul 2008
Total Posts : 1495
   Posted 7/14/2008 11:50 PM (GMT -7)   
I've been reading the fibro 101 links and came across something that will probably explain my questions and concerns about how much pain is normal.  It probably also explains why some people with fibro do not speak up for themselves.   It is in the responses to the article in the New York Times  "When an article in one of the most reputable newspapers in the world states that patients with fibromyalgia 'obsess over aches that other people simply tolerate'. . ."  If this is the message given to the public about people with this disease, then it makes fibro patients look like whiny hypochondriacs instead of people with a true disease.  That's just wrong.
 
As I sat on the couch tonight watching tv with throbbing aches all up and down my legs and hips I wondered, "would other people just tolerate this?"  I couldn't get comfortable or alleviate the pain.  So far I've asked my doctor at least 3 times what is wrong.  Each time he will test this or that and tell me nothing is wrong, so I keep quiet thinking I am a big baby with a big imagination or something.  Then something else will come up that I cannot bear and I will ask him again.  I always took awhile to go see him because being around him made me feel so terrible.  With this new doctor, I am expecting some more tests to come back, but she never told me what she was testing, so I cannot be sure.  It has been a week or two and I've waited long enough.  I will contact her again tomorrow.  Hopefully I can get this resolved finally.
~Sue

anonymouse
Regular Member


Date Joined Jul 2008
Total Posts : 40
   Posted 7/14/2008 11:56 PM (GMT -7)   

good luck to you sue. i know what you mean....unfortunately. people do not understand the pain. and chronic pain is not normal and at times truly unbearable.

 


Marlee2
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Date Joined Aug 2007
Total Posts : 6067
   Posted 7/15/2008 8:12 AM (GMT -7)   
Statgeek it's a kick in the gut to us when someone writes those things. My evil little mind goes to work and I wish for them to know what it is like living in a fibro body. devil
 
Yes, call and ask the results of your test. One thing I have learned with age is you have to take control of your own health. Ask the doc what they are testing for and why. The things that should be ruled out before you get a dx of fibro is lupus, MS and RA. Since my pain level wasn't that bad in the beginning and fatigue was my worse complaint I had stress test on heart and about everything else before the first bad flare of fibro raised it's ugly head. That made it real easy for my doc to make a dx finally.
 
If your not comfortable with your doc and he/she is not explaining what they are doing to get to the root of your problem than maybe you need to find another one. There has to be communication between doc and patient and I for one will not be talked down to by a doc, not told what they are doing and why and treated like they are so superior in intelligence that I wouldn't understand it anyway. I may not know all their big words but I can sure look it up on the internet.
 
I hope you get answers soon.
 
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


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 7/15/2008 9:29 AM (GMT -7)   
Hi Sue,

I think we all have different pain tolerances. I myself have a high pain threshold. I can tolerate a lot of pain, but I cannot tolerate the fatigue. But not everybody is the same. And I think that some doctors don't understand that. Some think that if they can handle it, others can too. But that is not true as you well know.

I hope that you get the right pain medication or treatment to help you.

Best wishes, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/15/2008 11:30 AM (GMT -7)   
Sue, I know I was infuriated when I saw that article in the New York Times.  So, I absolutely loved the learned doctors, who deal with patients having this lousy problem, come back at them.  I loved their explanations and it put the Times in their place.  That's why I included that link in Fibro 101.  We have all had to deal with those thoughts and ideas from people who have never walked in our shoes.
 
You do have to take control of your health.  If  you have doctors that don't help you, fire them!  You pay them a lot of money for their knowledge and help and if they are not working to help you, dismiss them and find a new doctor.  That's one of the difficult parts of fibro.  But, if you are persistant, you will find a doctor that does try to understand and help  you maintain control of your pain.  Just keep searching.  They are out there!
 
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


mamanan
Veteran Member


Date Joined Jun 2008
Total Posts : 846
   Posted 7/15/2008 1:24 PM (GMT -7)   
Did you get in touch with the doctor, Sue? Let us know what happens. I just wanted to wish you luck adn to welcome you to the boards! And I kwym about keepign quiet. I put off goign to the doctor's for the longest time b/c I thought I was mkaing too big a deal out of 'normal' aches and pains :S But there is nothing normal about having no evergy ever day, or being sore every day.
in the land of Limbo, taking OTC meds only.
Don't know what's wrong, can't fix it, doctors are so sloooow!!!


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 7/15/2008 2:40 PM (GMT -7)   
Ok, I emailed my doctor. Email is the best way to reach her. I didn't want to do it, but you all convinced me. Normally I would wait for a bad flareup, but being proactive is a better way to go. I will let you know what she says or does.
~Sue

Meggie
Regular Member


Date Joined Jul 2008
Total Posts : 408
   Posted 7/15/2008 3:45 PM (GMT -7)   
Sue,

Fibro is a cruel illness. If it's not enough that you feel absolutely awful, you have to deal with people who just don't understand. I'm sure your pain is as bad as you say and don't give up until you find help. I was diagnosed about two years ago after so many years of pain and tests. It was finally a phyical therapist who recognized my problem. I had been so frustrated with doctors telling me that there was nothing medically wrong with me that I asked the therapist if I was going crazy. She was so kind and told me about fibro and that she strongely suspected it was the root of all my problems. I had to see three doctors before one would consider fibro as a medical condition. Don't give up, I am sure if you keep looking you will find the right doctor.
Many Hugs!
Meggie

Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 7/15/2008 4:04 PM (GMT -7)   

The doctor has already answered my message.  She has decided that I have osteoarthritis based on having met me one time and the few blood tests she ran.  In the message I told her that I had osteoarthritis in my neck from a prior injury and asked if compensation for neck pain could be the cause.  I also explained that I do not hurt all the time, but have bouts of dull throbbing and extreme pain and that a family member suggested I ask about fibromyalgia.   She has no x-rays, so how in the world can she know that the diagnosis is osteoarthritis.  In her defense, she did send me some valuable information on how to help myself - something my former doctor never ever did.  He was worse than horrible.  She offered to refer me to a physical therapist for the osteoarthritis.  Maybe I will take her up on that.

This reminds me of the trouble I had figuring out my mamogram results.  I had my first mammogram (not sure how to spell, so it will prob be different every time!!) in August of last year.  The doc called and said one side was suspicious and wanted me to come right back.  Had another mammogram, and an ultrasound two weeks later.  They were so rough I was sore for weeks!  New doc was not sure, said, it was prob nothing but to come back in 6 months to be checked for changes.  Went back in 6 months and got 2 diagnoses  one from the radiologist who said there was a benign tumor and to come back in 6 months for monitoring and one from the mammogram specialist who said the findings were normal and to come back in 1-2 years.   I guess I will be doing another one in August just to be safe.  Honestly, these hmos. 

~Sue


getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40595
   Posted 7/15/2008 6:53 PM (GMT -7)   
That has to be so frustrating Sue. To have the doctors tell you two different things. Sometimes I don't even think that they know. I hope your next mammogram is negative.

Best wishes,
Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 7/15/2008 7:30 PM (GMT -7)   

Hi Statgeek- 

I have moderate arthritis in my neck and it can cause pain but nothing compared to the fibro pain. Please keep having them look into the fibro. I don't want them to just treat your neck and overlook that you may have this. Also, to have Physical Therapy they would have to be more careful with you.

I said this before but I am so fortunate to have a great Dr. You should not have to go through all this! Jeesh! I hope this new Dr. is going to help you get some answers. Enough is enough. GamJill 


 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck
 
Zoloft, Tylenol 4000 mg., Zanaflex


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 7/16/2008 12:48 AM (GMT -7)   
It doesn't make sense. How can the doctor make a diagnosis without a physical examination? I appreciate the fact that she is taking me seriously and does not act like she thinks I am making it up. But I have only seen her one time! I am going to the chiropractor tomorrow to see if he has any insight. I've known him for a few years and not a few minutes.
~Sue

Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 7/16/2008 9:00 AM (GMT -7)   
I had a CT scan of neck not long ago. All it showed was some osteoarthitis. But my neck seems to be the origin of all other pain. The other day when I was with physical therapist she was doing some test. She had me tilt my head to left and pushed down on my head and I had a pain in left hip. Now most people would have called for psych evaluation on me but she understood referred pain. The myofasia is continuous throughout our bodies. Not long ago my DH touched me one place that I can't remember and I had a sharp pain in another part of the body.
 
Osteoarthitis shows on x-rays so how does she know where it is??? Sometimes PT can do more harm than good. The only PT they will do on me is water therapy. I think you need to keep pushing this. One examine is not enough.
 
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


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 7/16/2008 11:05 AM (GMT -7)   
I went to see the chiropractor today. He tested the pressure points and found several. Ouch. Also because of ibs, depression and bouts of insomnia, he thinks the issue is fibromyalgia. I asked why the doc would diagnose osteoarthritis over the email and he said it is because my tests came back negative for the other things (RA, lupus, etc). He was also wondering, like I was, how I could have arthritis when my x-rays showed no arthritic problems (at least the foot xrays). He is leaning more toward fibro than osteoarthritis. He said that fibro comes from the stomach not breaking down the proteins properly and the body attacks them, which manifests in pain on the outside. He said one of the triggers is artificial sweetners. I stay away from those because I consider them to be poison. He suggested probiotics and enzymes to help with digestion and glucosamine with condriton and omega 3. Also, to continue to exercise and eat properly.

I'm not sure if I should ask my gp for an appointment with a rheumatologist for a fibro evaluation. She didn't even acknowledge my question about it. Maybe I will just stick with the chiropractor.
~Sue


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/17/2008 7:59 AM (GMT -7)   
Sue, I really don't know how your chiropractor got that revelation about what causes Fibro.  All the medical doctors don't know what causes it so that's why we don't have a lot of things to help us and also why it is so difficult to diagnose.  I would really question that. 
 
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

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