Undiagnosed newbie with questions

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Loboto-Me
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/12/2009 4:23 PM (GMT -7)   
Hi everyone I'm Carmen and am an undiagnosed sufferer.

I suspect that I may have fibro, but am not sure. I read a little on here and even read the fibo 101 article, and still, I'm unsure.

My mom was a diagnosed sufferer, and she went through diagnosis hell (can we say this here?). For many years she was told that her pain was all in her head. This is during the early 70's when fibromyalgia was unheard of. She was finally diagnosed in the late 90's. For many years she was on "nerve meds" "sleeping meds" etc... she was a regular walking pharmacy.

Now back to me. The first part of my life has been awesome pain wise. I thought maybe I had escaped my mom's unfortunate genes and would not suffer what she suffered. Well at the age of 45, my brother came to live with us. Let me just say that he's the type of young man who pushes my buttons. I resent him, and I felt that he was in my space, to make my life difficult. I was a mostly a good girl and retained my anger fairly well during this time.

One day, while on a wonderful camping trip, I started limping. My left ankle felt like I had sprained it so badly that I couldn't walk on it. This lasted 2 days and then the pain suddenly left... just to start up on my right ankle. This made no sense to me. Although I'd never had a broken bone in my life, this felt like I had broken my ankle, including swelling. Once again, it lasted only a few days, but during those days, it was so bad that I had to put a pillow under it to support it. Any movement in bed would wake me up yelping.

Shortly after that episode, I started getting pain in my left wrist, and sometimes certain fingers... then that pain would leave and move to the other hand. For a full year and a bit, it would move from one area to the other. My neck, shoulders, upper back, hips, knees etc.

I think my worst episodes was when it would wake me in the middle of the night with tingling and burning. It felt exactly like when someone gets frostbite and it starts thawing out. That burning agony was horrid. It would be so bad that I'd be crying. I felt like I wanted to cut off the limb that hurt.

I went to see the doctor, but wouldn't you know it, by the time my appointment came around, the pain wouldn't be there. He told me to keep a journal and gave me some pills for the pain. He doubted that I had fibromyalgia when I mentioned it. Why? Because, I'm not typical. (will explain later). One day, about 3 months after my first appointment, I'd been in pain for almost a week... this time it was the ankle again. Because my doctor wasn't in, I saw another doctor, and he looked at my ankle and i felt vindicated (at least it was apparent that I had a real hurt). He actually thought maybe I have gout. Gout? Me? I don't drink alot. He told me to avoid certain foods (wine, red meat.. all the good stuff). Well being the bad girl that I am, I eventually went back to all the no-no's.

This lasted a little more than a year, and I could not be counted on to care for my family. My husband had to take over making dinner as I couldn't lift pots, or peel potatoes reliably. Some days I could, some days I couldn't. My husband hired a few cleaning ladies for me (I think that was the best part of being sick turn ).

Then my brother moved into his own place. A few months later, I started noticing that the pains started easing off. They were there, but felt more like bruising, not painful like it used to be. I can live with bruising and do it happily. My brother has been gone for over a year... I haven't had any of those debilitating episodes for about a year now. smilewinkgrin I rejoice in being "pain free".

I've been drinking wine, eating red meat, and ingesting all the stuff I wasn't supposed to without "gout" symptoms for over a year, so I don't think gout was the issue.

Why would my doctor doubt I have fibro? Well because I'm not typical. I sleep fairly well. I understand that sleep issues are very common. I'm not saying I'm a perfect sleeper, but I have no problems falling asleep. I don't get headaches, and I don't think I have the pressure point pains either.

I've always had very very tender skin on the upper arms. I can't be squeezed or poked there or it feels like someone gave me a noogie and it hurts for a long time... that's the only real tenderness that I know about.

I noticed that for the last few days, my left foot has started hurting again. Not so much tingling (I'm afraid!) but I limp when I walk. It's like the cartilage on the top of my foot is injured. Advil takes care of the pain pretty well... but I'm so afraid I'll get another episode of pain in my life again.

I really count myself lucky that I don't suffer like you guys are, but I'm getting scared that I may find myself in your situation in the future. I'm afraid, yet it would be really nice to know why I went through what I did.

crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 11/12/2009 5:03 PM (GMT -7)   
Hi Carmen, Welcome to our fibro family, the home of friendly fibromites! It is great
that you already read Fibro 101. lots of good information.

Getting a diagnosis is not easy, even these days! Doctors should run a lot of bloodwork to
try to eliminate other possibilities. There are conditions that have simular symptoms and
there is currently no diagnostic laboratory tests for fibro. A diagnosis can be made doing a
tender point exam. There are 18 designated places on the body that are tested for tenderness.
Many fibromites suffer from overwhelming fatigue, fibro fog, headaches, IBS, insomnia and last but not least allover body pain. These are just some of the symptoms.
Hopefully your nagging symptoms don't return but if they do, don't hesitate to
make an appointment with your doctor, bring a list of all your symptoms and questions you
might have. Many of us have seen more than one doctor and waited months or years to
be diagnosed. Good Luck to you and keep us posted, we care!

Hugs

Robin


MCTD, Fibromyalgia, Raynauds, Osteoarthritis, Osteoporosis, Degenerative 
 Disc Disease, Hypertension, Migraines and Pseudothrombocytopenia MEDS: Methotrexate, Savella,Flexeril,Diltiazem, Boniva, Vitamins 

Post Edited (crazykitty) : 11/12/2009 5:07:43 PM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 11/12/2009 7:56 PM (GMT -7)   

Hi, Carmen, and welcome!  I've had fibro for 22 years.  When I was diagnosed, they called it fibrositis.  Anyway, I rarely get headaches, I fall asleep easily but I do wake up several times a night, and I pass the tender point test with flying colors.  But, I'm also on ibuprofen and Tylenol, malic acid/magnesium supplements, and vitamin D3 so that plays into it.  I've also read that now they are thinking the number of pressure points can vary.  We are not all the same.  Fibro is a really weird illness.

My pain started in my feet and worked up my entire body in a 45 minute period.  When it hit my elbows, it was like I had banged the "funny bone" really hard.  I felt those electrical-type shocks down my arms and my hands went numb and this pain continued for over two weeks.  I, too, thought they were going to have to amputate my arms because the pain was unbearable and I couldn't do anything or sleep a wink.  This has all passed. 

I have problems with my feet every summer and every summer my doctor thinks I have gout.  But, gout, if left untreated, clears up in about two weeks from what I have read.  But my painful feel last all summer.  Soon as the humidity and heat leave, so does the pain.  I firmly believe that it's caused by fibro.  I know I'm guessing but so are the doctors most of the time!  smilewinkgrin

Be sure to read the links in Fibro 101.  There is a lot of good info there and you will learn a lot that could help you.  I'm so glad you found us and joined in.  I 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


Loboto-Me
New Member


Date Joined Nov 2009
Total Posts : 3
   Posted 11/13/2009 7:51 AM (GMT -7)   
Thank you both for your replies.

I also fall asleep easily, but I am always aware of each time I turn over in bed. I toss and turn alot, which wakes me up but then I fall back to sleep no problem most of the time. Sometimes though, I will wake up out of a dead sleep usually because once again I need to turn over. At these times, my head will start thinking and will cause me to have anxiety and I may stay awake for a while. This usually only happens when I've not had enough sleep for my body to be happy with me.

I guess I have to wonder if fibromyalgia goes into "remission" since it seems that I have, although, right now I'm suspecting that it wants to come back due to my foot acting up.

I have noticed that if I do alot of housework which involves wringing cloths, my hands will get a tender, bruised feeling for days afterwards, even during my "remission" (I'll call it that for lack of a better word). I can live with that.

Also, with fibro, is having tender skin part of it as well? Yes, my upper arms are always tender to poking (kids find it so funny that they sometimes will poke me just for fun lol) but I noticed while I was ill, that not only did the insides hurt, the outside hurt as well.

If I once again start getting the pains I experienced a few years back, I will once again go to a doctor. I have changed doctor so he would be starting fresh, which I dread, but then again, he's young and perhaps he's more in tune with fibro than my last doctor was.

Edited to Add: I forgot to mention the IBS, I've been a sufferer for many many year. Some foods affect me one day, but then I could eat the same thing the next time and it will not affect me. Most times, it's food from restaurants that will affect me the most. The pains come in waves and sometimes I have to sit there for a long time after everything's out because the waves are still happening. Not fun. I had NO idea that IBS was a common denominator in fibro sufferers.

Post Edited (Loboto-Me) : 11/13/2009 8:02:07 AM (GMT-7)


Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17097
   Posted 11/13/2009 1:08 PM (GMT -7)   
Your sleep habits sound like mine.  Sometimes I'll be sound asleep and my eyes will pop open!  And, yes, I wake up when I need to move because of pain.
 
I've not heard of remissions with fibro.  We usually have pain but some days are better than other days.  The really bad days are when you have a flare.  You feel like you've been run over by a truck.
 
You need to read Fibro 101.  Many of your questions will be answered...especially if you read the Symptoms link.
 
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


Dagger
Veteran Member


Date Joined Apr 2008
Total Posts : 1522
   Posted 11/15/2009 8:35 PM (GMT -7)   
I thought I slept quite well. I almost always fall asleep easily and rarely wake up during the night. A doc ordered a sleep study anyway to rule out certain medical conditions. It was the best night's sleep I ever had so I thought they wouldn't find anything. The next morning, the tech told me they couldn't tell from their equipment whether I was awake or asleep because my brain waves registered as awake most of the night.

Unless you've had a sleep study, you can't rule out a sleep problem.

Have you been evaluated for Lyme Disease? Even if you've tested negative, you can still have it, the test is not reliable at all. Read some of the info on the Lyme Disease forum here before you rule it out.
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