Questions for those of your who are dx'd

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busymamabee
New Member


Date Joined Aug 2009
Total Posts : 1
   Posted 8/19/2009 10:27 AM (GMT -7)   
Hi, I'm new here. Just to give a bit of background, I am researching fibro at the suggestion of a friend. It's been months of tests trying to figure out what is going on with my body and it's been quite the journey.
 
In late May I had surgery to repair an umbilical hernia. Then about three weeks after the surgery the abdominal pain I assumed was a normal part of recovery crept up to my shoulder and down one leg. I will spare you all of the details, but the pain basically spread all over my whole body...burning pain in the muscles and joints that seems to move around. One minute my hip is on fire, ten minutes later my shoulder is burning and my hip feels fine...you get the idea. At the worst the pain makes me feel weak and like I am constantly trembling. At the best it hurts but I can work through it. It never really goes away. I rarely sleep because I spend all night twitching and feeling my muscles pull as if they had a will of their own even though I am trying very hard to let go and relax.
 
I've been to a general practitioner several times and a neurologist a handful of times. They've done CAT scans, a full MRI, an EMG, an EKG, tons of blood tests, I was even strapped with a halter monitor for a day and supposedly there is NOTHING abnormal.
 
So reading through the list of symptoms of fibro...well, I have almost all of them. BUT when I look at the map of tender points, I just don't think that if somebody pressed on them it would be that big of a problem. My husband often massages the places that hurt and although it doesn't take the pain away, and it does sometimes hurt, it ultimately feels good despite the pain.
 
So, do your tender points hurt really badly at the slightest touch? Or if some qualified medical professional pinpointed certain areas and  jabbed them, then it would hurt, but not always day to day? Can you describe the tender point pain for me? Thanks in advance!

Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 8/19/2009 10:56 AM (GMT -7)   

I get poked or rather touched on either my tender points or trigger points. They all hurt. The last time I went to the Rheumotologist she poked/touched me so fast it was annoying and hurt like hell. I had to put up my hands just to stop her from hurting me.

I don't know if I was much help but there will be more people with their experiences.

HARA 

 

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 8/19/2009 11:09 AM (GMT -7)   
From someone who has been diagnosed a year, I will say that it really depends on how much pain you are in and what amount of pressure is put on your tender points. Sometimes, the lightest amount of pressure on my tender points puts me in agony, and sometimes, on better days, it just hurts a little bit but it is bearable. If you are concerned that fibro may be your answer, discuss it with your doctor, and even suggest that he send you to a rheumetologist.
After the birth of my son, pain just would not go away. I was drained all the time. But, at first, I thought that it was just me recovering from my son's birth and that fact that I would wake up with him all night. But, as he got older, and he began sleeping through the night, I still felt the same. I went through a lot of tests, and they all came back normal. Finally, I suggested to my doctor that I might have fibro. He did more tests, but he also put me on meds that are used to help treat fibro. Then, after everything kept coming back normal, I was sent to a rheumetologist. He looked at my records, asked me a lot of questions, and then pressed all over my body. When that way done, he looked at me and said, "I'm sorry, but you have textbook fibromyalgia." While I was happy to finally have a definite answer, I was also devastated because I knew that my life would never be the same.
Anyways. If you are concerned, bring it up with your doctor. I hope this helps. Good luck to you.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/19/2009 11:11 AM (GMT -7)   
Welcome busymamabee,

People with fibromyalgia are very sensitive in the tender point areas. Light pressure on
these areas hurt. The tender points on my chest(2nd rib area), shoulder area, lower back-
hip area are extremely sensitive. Just being touched in that area with little or no pressure
can send pain throughout my body. It doesn't take a professional to find these pain-
ful areas. If you have them, you know it.

Hope you are able to get a diagnosis soon!

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Statgeek
Veteran Member


Date Joined Jul 2008
Total Posts : 1495
   Posted 8/19/2009 11:50 AM (GMT -7)   
busymamabee
It is my understanding that the tender points hurt differently and at different times. I have two that if touched lightly just right will cause me to see stars. There are a couple more that require a firmer pressure. When I go get a pedicure, sometimes the leg massage puts me in agony and other times it is not so bad. I've read that they will hurt more or less depending upon if you are in a flare. That seems to be true with me.

I had to suggest fibromyalgia to my gp before she thought of checking me for it. You may need to do the same.

Sue

CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 8/19/2009 12:13 PM (GMT -7)   
Hi busymamabee,
A few questions for you:
How old are you?
Are you on any meds for other medical problems?
Were there any problems with the surgery?
Are you running a temp?
Did you have a blood transfusion?
Any soreness left in your abdomen?
Are they sure they got all the instruments/sponges out????
Did you have medical problems before the surgery?
Are your periods normal?

about my feelings about FMS:
I think we all get to a very similar point as far as symptoms, but I'm thinking we may have gotten to that point differently.
I personally would go by the various symptoms, more than having all the appropriate trigger points.

Do you feel your neurologist is capable?
I would tend to feel better with an Internal medicine doc than a GP.
It definitely seems to have been triggered by the surgery, doesn't it?
I tend to get whole-body-problems after something like surgery.

Hopefully you don't mind all my questions. I think your case is very interesting, and hopefully someone can help you figure it out.
P.S. Have you been on alot of antibiotics since the surgery?

P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 8/19/2009 1:34 PM (GMT -7)   
My tender points hurt, but when I'm flaring my trigger points (knots) are terribly painful. My skin is also very sensitive. I just came back from cutting the tag off my shirt. It was hurting me SO bad today just touching my skin. I'm hoping to get triiger point injections from the pain mgmt doc today. This flare has gotten bad pretty quickly today. My anxiety is high today so that may be making it worse.

Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.625mg clonazepam, 5mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Triple Strength Fish Oils/Colonoscopies-4 with 1 scheduled for Sept
 


austin73
Regular Member


Date Joined Dec 2008
Total Posts : 51
   Posted 8/19/2009 2:01 PM (GMT -7)   
When I was diagnosed I had every reason to believe I had fibro but I thought I didn't have the tender points just like you. I even told the doctor just minutes before he began the physical examination that I didn't have any of the tender points - boy was I wrong!! He just about dropped me to my knees with the slightest amount of pressure. I was tender in all of them!! That fact combined with about $10,000 worth of tests at to prove that I was otherwise "healthy" and we were sure I had fibro. Just make sure you have a doctor that knows what he/she is doing - I know that is MUCH easier said than done.  Good luck!

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 8/19/2009 2:30 PM (GMT -7)   
You have gotten a lot of good responses. The thing to do is to talk to your doctor about the possibility of fibro. That is the first step, I think. I also think that Cathy's questions are very good ones. Don't think that your age has much to do with fibro, though, because there are quite a few of us on here, including myself, that are pretty young. But, these are some questions that need to be considered. Keep us updated on how things are going.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


CathyA
Veteran Member


Date Joined Mar 2005
Total Posts : 1431
   Posted 8/19/2009 3:18 PM (GMT -7)   
Just wanted to add that I've talked to so many women whose fibromyalgia began during perimenopause. I know mine got horrible during that time. I was thinking that maybe if Busymamabee was anywhere near perimenopause (late 30's-40s), that her surgery may have affected her hormones and pushed her over the menopausal "edge" so to speak, which could have brought on alot of those symptoms.
I find it amazing that some women can go through perimenopause with just a few hot flashes and some of us have a major, major breakdown of our systems. Anyhow.....I just wanted to explain why I was asking about age.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 8/19/2009 3:22 PM (GMT -7)   
That is a very good point. Surgery is traumatic for anyone. That's just the way it is. It takes a toll on our bodies. But, if you are older, you heal slower normally, and your body take longer to recover from the trauma. For some, this is a trigger for fibro.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Jhemi
Regular Member


Date Joined Jul 2009
Total Posts : 223
   Posted 8/19/2009 6:30 PM (GMT -7)   
When I was first diagnosed my doctor didnt even try to find out about the pressure points. I also thought as you do that I may not have fibro since I didnt seem to hurt anywhere special all the time.

Then when I went to a rheumatologist he checked me for the pressure points...he said he only found 9 but that 11 were only necessary for clinical studies.

If he hadn't probed me in these areas I wouldn't have known that they hurt since it's not somewhere I usually feel pressure. Hope this helps.

P-Fit
Regular Member


Date Joined Jun 2008
Total Posts : 419
   Posted 8/20/2009 11:17 AM (GMT -7)   
CathyA said...
Just wanted to add that I've talked to so many women whose fibromyalgia began during perimenopause. I know mine got horrible during that time. I was thinking that maybe if Busymamabee was anywhere near perimenopause (late 30's-40s), that her surgery may have affected her hormones and pushed her over the menopausal "edge" so to speak, which could have brought on alot of those symptoms.
I find it amazing that some women can go through perimenopause with just a few hot flashes and some of us have a major, major breakdown of our systems. Anyhow.....I just wanted to explain why I was asking about age.
Cathy, thanks SO much for your post! I am almost 40 and all these crazy things started happening to me 2 1/2yrs ago. I really feel perimenopause makes this flare up worse.
Dee-39yrs old wife and mom of 3 boys
UC since 2004/PTSD/Panic Attacks/Depression/myofacial pain syndrome 2009-750mg colozal/1,000mg canasa/.625mg clonazepam, 5mg Lexapro-/Fioricet/Prilosec OTC-2x daily, Triple Strength Fish Oils/Colonoscopies-4 with 1 scheduled for Sept
 


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 8/20/2009 1:08 PM (GMT -7)   
Busymamabee,

I just wanted to add that fibromyalgia can mimc alot of illness, autoimmune included.
I am one who has alot of other medical issues that have similiar symptoms.

It is important that other conditions are ruled out. My doctors ran a Complete Blood Count,
Comprehensive Metabolic Panel and a ELISA-8 ANA screening. My rheumy believes I
have Mixed Connective Tissue Disease (Lupus Scleroderma RA) along with fibromyalgia.

Doctors should be thorough.

Robin
 
 possible MCTD, Raynauds, Fibromyalgia, Osteoporosis, Degenerative
 Disc Disease, Osteoarthritis, High Blood Pressure, Migranes and
 Pseudothrombocytopenia, biopsy shows a Scleroderma variant
 MEDS: Methotrexate, Savella, Boniva,Lisinopril, Folic Acid, Flexeril, and
 Vitamin Supplements


Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 8/20/2009 3:49 PM (GMT -7)   
Get a referral to rheumatology for FM diagnosis and go to ER when it's really bad. Do both. If all the lab results are coming back negative you probably have FM like us. FM does not show in any test, sometimes not even on the touch test. You really need to read more about it. Get the book Fibromyalgia and Chronic Myofascial Pain Syndrome by Starlanyl and Copeland. Very good insightfull book.
 
Get a referral to neurology for the sleep meds. Trazadone is a God sent for me. With FM I'm all over the bed tossing all night with out the sleeping pills. Restless leg syndrome and pain that can be taken away with this miracle pill. But it may not work for for you. Everything med. works different for everyone.
 
Good luck to you.
Fibromyalgia, Chronic Myofacial pain syndrome, Malaise, Fatigue.
 
 
 


Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 8/20/2009 3:52 PM (GMT -7)   
Basically keep going to ER until they diagnose you if the Rhuematologist doesn't. It could be any number of "invisible diseases". Look that up too.

Fibromyalgia, Chronic Myofacial pain syndrome, Malaise, Fatigue.
 
 
 


Hara
Veteran Member


Date Joined Mar 2009
Total Posts : 900
   Posted 8/21/2009 2:17 AM (GMT -7)   
Invisible diseases? What's that? What are those?
 
HARA - Appearently something I haven't though of yet.

SassyMyKitty
Veteran Member


Date Joined Apr 2009
Total Posts : 673
   Posted 8/21/2009 5:45 AM (GMT -7)   
I agree with littlestrebel. Trazodone is really helpful for me. I don't know what I would do without it.
'Cause when push comes to shove
you taste what you're made of.
You might bend til you break
'cause it's all you can take.
On your knees you look up
decide you've had enough.
You get mad.
You get strong.
Wipe your hands
shake it off.
Then you stand.
 
-"Stand" by Rascal Flatts
 
 


Littlesrebel
Regular Member


Date Joined Jul 2009
Total Posts : 163
   Posted 8/21/2009 11:39 AM (GMT -7)   

Check into these sites about invisible diseases like FM.

http://www.invisibledisabilities.org/ids.htm

http://www.invisibledisabilities.org/

 
Fibromyalgia (FM), Chronic Myofacial pain syndrome, Malaise, Fatigue, Migranes, Cervicalgia, Scoliosis.
 
 
 

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