New here and totally confused.

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rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/23/2009 11:59 AM (GMT -7)   
Hi,
I'm Rosa. 42/f. For years I have had body pains. Probably since at least 2000, can't recall. I've been on meds since, the age of two, phenobarbital for epilepsy (which apparently I never had). Impossible to know, which and when and for what. Anyway, I started at 12 and it's only gone on from there, I think there was 3 years I have no idea why my liver is still functioning.

None of that matters. What is confusing me is that in 2006 I was diagnosed with Fibromyalgia, at this time I take Opana ER 15mg twice a day and Neurontin 300mg three times a day and Savella 100mg twice a day. I also take Wellbutrin 300mg once a day and Lamictal 150mg twice a day; those are for depression and bipolar.

I've read many of the threads and I don't know if my symptoms are fibromyalgia - I mean many say that they can't handle being touch, I will wrap my body as tightly as possible; I even use a diving suit. The pain seems to be mostly in my bones.

The Opana ER doesn't relieve the pain, it seems to do very little. I take more than prescribed because my thought pattern is **** it, atleast I will be pain free for a while vs. never. Of course, when I run out, I take Tylenol (to excess, 20-28 pills) along with Motrin and aspirin. Oh yeah, I have ulcers and ulcerative colitis, so, I'm not supposed to take NSAIDs (Motrin and aspirin). But, at least when my stomach hurts it takes my mind off my body, back, knees, you guys know.

I'm just confused and tired. Guess I'd like someone to tell me if they think my symptoms are fibromyalgia or am I just a hypochondric who is pill addicted from always taking a medication to solve things.

Sorry so long.


Please read forum rule #1.

Post Edited By Moderator (Sherrine) : 11/23/2009 12:12:51 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/23/2009 12:51 PM (GMT -7)   
Hi, Rosa, and welcome!  I'm so glad you found us and joined in.  I'm so sorry you have had such problems at such an early age.  It is confusing.  Your life doesn't seem to be in control but we will help you get some control of your life.  You need to read all you can about fibromyalgia and understand this illness.  I do not have the sensitive skin issues that many have on this forum.  That's the problem with fibro.  Not everyone has the exact same symptoms.  Yes, we all seem to have fatigue and pain.  Most everyone has pain in their back and neck but we have pain elsewhere, too.  My pain "travels".  It's one place one day and another place on another day!  So, even though you think you don't fit the fibro profile, you just might.
 
Be sure to check out the Fibro 101 thread...the first thread on the forum.  There are links to good information about fibromyalgia...including a list of symptoms.  You just might see yourself there!  The links in Fibro 101 will help you understand this illness better plus our members are wonderful and love to help one another.  And, as a bonus, we really do care about each other, too.  So, this thread is a great place to start learning.  Also, don't hesitate to ask questions because we are here to help you.
 
Now, about all the Tylenol you said you are taking.  That needs to stop, Rosa.  The highest safe amount is 4,000 mg a day....that's 8 extra strenght Tylenol.  Anything over that can seriously cause problems.  I do use Tylenol for pain and I also use ibuprofen.  The highest safe amount for that is 2,400 mg a day...that's 12 pills.  I only use the highest amount when I'm in a flare.  My doctor also put me on Prilosec because it help protect the stomach in 70% of the people.  Those are good odds.  But, if you do have ulcers, you need to use something else.  I developed one ulcer about six years ago.  I caught it right away and was able to clear it up within a month.  I was told to use Tylenol but Tylenol alone doesn't cut the pain for me.  It was a quality of life issue so we started the ibuprofen again BUT I ALWAYS take it with food, now.  See, no one ever told me that and that's why I got the first ulcer.  Since taking the meds with food and using the Prilosec, I have not had any problems in that area.
 
I also take malic acid/magnesium supplements for pain and fatigue and also take vitamin D3 for pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients.  There are links all about them in the Fibro 101 thread.
 
I'm happy that you are here.  I think we might be able to help you get control over this illness and live a full and enjoyable life.  I know I have!  So keep posting and asking questions.  I'm looking forward to getting to know you and I hope to hear 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


rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/23/2009 2:09 PM (GMT -7)   
Sherrine,
Thank you so much. Just knowing that someone out there can help makes me feel safer and more relax.

I really appreciate you taking time to respond.

Rosa
[color=blue>Rosa</FONT>

<FONT color=#0000ff>Today's problems will tomorrow be in the past.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/23/2009 2:19 PM (GMT -7)   

You're welcome!  You will get more responses, I'm sure, later on.  This is just so close to a holiday and the afternoons are usually slow around here so keep checking back and please do read the Fibro 101.  Once you understand this illness you will learn to work around it to do the things you really want to do.

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


rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/23/2009 3:41 PM (GMT -7)   
I started reading Fibro 101 and have been yelling at my husband because there are things mentioned that I know are not in my head. I didn't even know that Fibro would cause bruising, personality changes (Paul thought it was okay never knowing which woman/personality he would wake up to), memory, mood shifts, change in body temperture and more.

Thank you so very much. I'm actually smiling and excited. There is hope.
[color=blue>Rosa</FONT>

<FONT color=#0000ff>Today's problems will tomorrow be in the past.


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/23/2009 4:08 PM (GMT -7)   

I'm so glad you are getting something out of Fibro 101.  I know most members learn a lot there.  And, yes, there is plenty of hope!  I've had fibro for 22 years and have had a full and enjoyable life in spite of it.  I've traveled to many places in the world, and done activities I never thought I'd be able to do.  I just set my sites on something and go for it!  Keeping a positive outlook helps so much, too.  Instead of looking at what you can't do, look at all you can do!  That will put a different slant on this illness.  We all have many blessings.  All we have to do is look around and then fibro doesn't seem as horrible.

You will also find that if you get doing something and really are focusing on it, the pain will fade some in the background.  I love doing genealogy and, when I'm up to my eyeballs in relatives, I don't think about pain and it fades in the background.

Keep reading Fibro 101.  You will feel sooo much better knowing you are not alone with this illness and you have people that do understand what you are going through on this forum.  Plus, we can give helpful tips.  Just ask questions!

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


WhiteChocChip
Regular Member


Date Joined Jun 2009
Total Posts : 439
   Posted 11/23/2009 4:16 PM (GMT -7)   
rosa ... most of my pain feels like it's inside my bones or joints. I do have a couple of "no-poke" zones, like my shins and hipbones.

FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 11/23/2009 5:27 PM (GMT -7)   
Hi Rosa
Sherrine is right not all FM patients are the same.  I do not have sensitive to the touch skin either.  Once in a while a light touch or grasp can really hurt but not all the time. smhair I have a deep down burning muscle sometimes feels like it is my bones on fire.  Other times it feels bruised and battered.
Plus so many other symptoms unable to list them all or remember them all- fibro fog LOL smilewinkgrin Anyway no it does not sound like you are a pill seeker just another Fibro patient.
Take care
Rhonda
Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


fmmom
New Member


Date Joined Nov 2009
Total Posts : 9
   Posted 11/23/2009 9:56 PM (GMT -7)   
Hi, Rosa. I am also new to the forum. I came here because I felt no one understood me. I have had FM and other chronic problems for over 22 years. I also questioned my DX because of what I thought was normal. The great members here helped me realized that this is different for everyone.

My pain travels everywhere. I try to take the min med I can because I found I was needing something stronger like yourself. I am on Flexeril, Wellbutrin, and for pain I take Ultram. I don't think it is an NSAID. Have you ever tried it? I use heat often to help on the days things are not as bad. You do need to stop taking the max of meds. If something is not working ask the doctor to try something else. Managing your pain with as little med as you need so when you do need something a little more it will work.

Take care, and I hope you like this forum as much as I do.

FMMOM




:-)

Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/23/2009 10:54 PM (GMT -7)   
Hi Rosa!

And welcome to our Fibro Family. I'm glad you've joined us because it's miserable to have fibro but more miserable when those you love just 'don't get it'. Then we begin to even doubt ourselves and or sanity. It's very real! And as others have said, we all feel our pain a bit differently. That said, we all have in common that the pain is muscle pain. Hold on!..lol Just because it's muscle pain doesn't mean it doesn't feel like it's in your bones.

Part of your muscle system are the ligaments that attach the muscles to the bones. If those areas are painful also then it feels like the pain is coming from a joint. When I first began having symptoms it was in my thighs and calves. Then it began spreading up until it reached the top of my head...yep, the top of my head even hurts. Most days ir hurts to run a brush through my hair but I do it anyway.

One thing you might want to do is keep a pain journal for a few weeks. It's amazing what it can tell you. In the Fibro 101 is a link to a free journal you can print. Make one for each day and fill it out before you go to bed. Not only can you see patterns and causes of your pain from this journal but take it with you to every doctor visit and you'll be amazed how much better your treatment can be. It sure makes it easier for your doc to suggest treatments when he/she knows how you react to things related to your pain.

Do keep in touch. You have a new family now who cares that you're OK.
Chutz
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/25/2009 10:53 AM (GMT -7)   
Thank you very much for taking of your time to answer.

the last two days have been crappy and I have not talked ( I isolate) but I didn't want to appear UNappreciative.

I will be back.

Thank you again. Off to sleep.
Rosa
[color=blue>Rosa</FONT>

<FONT color=#0000ff>Today's problems will tomorrow be in the past.

Post Edited (rosamptx) : 11/27/2009 7:35:49 PM (GMT-7)


Marlee2
Veteran Member


Date Joined Aug 2007
Total Posts : 6067
   Posted 11/25/2009 1:04 PM (GMT -7)   
Hi Rosa and welcome, thought I had responded to this yesterday. My skin is more sensitive than it use to be, I have had to stop using the net things and shower gel, but it does not hurt in general to be touched. However, I do have so many sore places in my muscles that if someone hits one I about go through the ceiling but it is not the skin that hurts. I do not have all the stiffness when I get up in the mornings that many complain about. I have noticed more stiffness in my legs after I have set awhile after a long day on my feet. We really are the same but different.
 
I'm glad you are learning from all these great people. There is no where else to go to learn that is better than this forum.
 
luv and hugs
Marlee
Forum Moderator Fibromyalgia
 
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium, Osteoarthritis and Celiac
 
Amitriptyline, Celexa, Xanax, Synthroid, Zyrtec, Micardis, Spironalactone, Tylenol, Reglan, Lidoderm Patches, Carafate and Prilosec
 
Vit D/calcium


Jeannie143
Veteran Member


Date Joined Apr 2004
Total Posts : 6056
   Posted 11/27/2009 10:54 AM (GMT -7)   
Welcome aboard our little lifeboat in a sea of pain. Be gentle and patient with yourself and ask the same of your family. Fibro sucks big time but as one of the guys here says...

Fibro is a life sentence but it's not a death sentence.
~ 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


rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/27/2009 7:44 PM (GMT -7)   
First off - that was supposed to say UNappreciative. ( I edited it above )
I really do appreciate all of the responds.

Having various mental disorders everything has always be blamed for all the problems I've been having.

When I first got diagnosed, I had started going to the doctor over and over because the pain was worsening. I kept complaining that it felt like my bone was hollowed out and aching/pulsating; the doctor said I had fibromyalgia.

My new doctor is mean... actually he reminds me of one of my very best friend's ever but he's short and I strive to please. So, when he walks in I don't complain. I get the feeling he thinks I'm just weak.

I did download the pain scales and am using them maybe that will help.

Thank you all. Hope everyone had a wonderful Thanksgiving. I ate too much.
[color=blue>Rosa</FONT>

<FONT color=#0000ff>Today's problems will tomorrow be in the past.


rosamptx
Regular Member


Date Joined Jul 2006
Total Posts : 26
   Posted 11/27/2009 8:02 PM (GMT -7)   
Quick question: Uhm, has anyone else noticed that wearing "certain" articles of clothing can bring on more pain? Or is that age?
[color=blue>Rosa</FONT>

<FONT color=#0000ff>Today's problems will tomorrow be in the past.
Mother of three; 23/m, 16/f, 12/m.
Severe depression with anxiety and SI, Bipolar, Insomnia, ADHA, UC, IBS, Fibromyalgia, hangnail and ingrown toenails too. (not really the last two)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 11/30/2009 4:06 PM (GMT -7)   
If you are talking about bras, YES!  Most of us only wear one when leaving the house and it's the first article of clothing that comes off when we get home.  I call them my "torture chambers".
 
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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