confused and peeved

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Regular Member

Date Joined Jun 2009
Total Posts : 222
   Posted 6/22/2009 11:50 AM (GMT -7)   
I'm so peeved off i don't know where to start. but, here goes...........
I know i've had something plagueing me since i was a child. I had juvenile arthritis, chronic pnuemonia, whopping cough and a leaking appendix all before the age of 4.
Then I miraculously recovered.........................YEAH RIGHT!!!!!!!!!!!!!!!!!!!
After years of aches and pains and numerous doctor diagnosis' of ''it's all in your head'' to ''lose weight'' i was put on anti depressants. this was all because i have a sister with bipolar, as i was growing up everything i had was put down to looking for attention as she was always the main problem for my parents. I don't mean that in a bad way, my parents were genuinely trying to help us all, it's the doctor who let me down.
Anyway, fast forward 10 years, i change doctors, get an mri and what do you know, i have Spinal OA, he took me off the anti D's and i lost loads of weight and was great for a while. At one point when i had a flare up the doc said what do you expect, you lost all the weight and increased your muscle mass, therefore of course you're going to have more pain as the muscles is the basis of the problem.  So i plodded along until now. I've only gained 21 lbs, which is'nt huge but enough for me to feel it and want to lose it again.
I'm stuck in the vicous circle of pain, exercise, pain. I just need to break thru it.
So today i saw a specialist.......................he says, ''there's no way u have FM, people with FM don't ride bikes, ski, maintain work ( part time ) and they have pain everywhere not just on the right side like you''
OK, so it's more so on the right side and it goes from the tip of my head to my toes. I'm not tired all the time, but there are days that i sleep thru to the following day.
I'm cognitively impaired, clumsy, light, heat and noise sensitive, definitely have fibro fog(and i'm not on meds that make you drowsy), and get stressed, depressed and anxious.
I have a lot of the symptoms outlined in FM101, so this just wants to make me cry, do i have it or not, coz if i don't then i don't know what i have.
A rhumatologist diagnosed me 4 years ago but he didn't really do any tests, just asked me lots of questions.
The specialist today says it's nerve damage from my wonky spine. And that would effect mt whole body. I push myself coz i love sports and the reason i don't take meds on a daily basis is because i get such bad reactions to them, i'd never be awake if i did and i'd weigh about 600lbs. I struggle to keep the weight at bay as it is. I only take them when i'm really bad.
I just feel let down by the entire professional community. It's not only with the OA and FM tho, i've had pretty much the same problems with my infertility issues. I was put on a drug that i didn't really need just because they had nothing elst to offer. The side effects were so severe i had to stop it after a 6 cycles, i as supposed to take 12.
I'm just giving up, i don't even want a baby any more, i feel like that boat has sailed. My husband would really like kids, but seeing as he won't quit caffeine, alcohol( he has a couple of beers every evening, but it's stil too much when ttc) or junk food. 
I just don't know where to turn, sorry for the long rant and thank you so much if you get to the end of it.
BOO, broken and scattered in the wind right now confused

BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most!
Fibro and spinal arthritis, trying to mange it with diet, exercise and accepting my limits, as i'm allergic to EVERYTHING!
TTC NO1 since Jan08

Veteran Member

Date Joined Jul 2008
Total Posts : 1495
   Posted 6/22/2009 12:42 PM (GMT -7)   
Hi Boo.
I don't have an answer for you. All I know is that a lot of docs are confused about fibro and chronic pain.
I just wanted to let you know I read your post and see how frustrated you are.

Veteran Member

Date Joined Feb 2009
Total Posts : 686
   Posted 6/22/2009 1:11 PM (GMT -7)   
I'm sorry you are feeling so bad, Boo. I wish I had more to say, but just know that we care, and it's ok to vent here.
DX fibromyalgia 2007, osteoarthritis, obsessive-compulsive disorder OCD, depression, anxiety, sleep apnea, hysterectomy.

fluoxetine (prozac), buspar, abilify, trazodone, lorazapam, nexium, nabumetone, hydrocodone, c-pap machine, estrodial patch.

Forum Moderator

Date Joined Apr 2005
Total Posts : 17500
   Posted 6/22/2009 2:50 PM (GMT -7)   
Boo, doctors are wrong many times.  Your "specialist" could be wrong, too.  You know your body better than anyone.  I do have fibromyalgia and have had it for years.  I also have scoliosis...a spine curvature that causes back pain.  The fibromyalgia can make that even worse.  BUT, that doesn't mean I stopped living.  I ride bikes, I've worked part time, I've even parasailed with this illness.  Just because you do things doesn't mean you aren't in pain and you don't have fibro.  You need to find a doctor that believes in fibro.
Why aren't you seeing the rheumatologist that diagnosed you?  Did you move?  If not, go back to him.  Sometimes we can see too many doctors and get too many "diagnosises" and it's all confusing.  When I was diagnosed, I believed my Internist and I have no reason to see anyone else.  I'm not saying that's what you did but some people do that.  Just a thought....
Now that you've given up on having a baby, you probably will get pregnant!  I had a friend that tried for years to get pregnant.  She finally gave up and adopted a child off an Indian reservation.  The day his adoption was finalized, she found out she was pregnant.  She had two children plus her darling adopted child.  I will pray that will happen to you.  Stress affects all parts of our bodies.
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

Veteran Member

Date Joined Feb 2009
Total Posts : 843
   Posted 6/22/2009 3:05 PM (GMT -7)   
Oh Boo, I'm so sorry for all your troubles.  I just want you to know that everyone here cares.  Doctors can be wrong-but might not admit this.  As far as one telling you that you could not have FM because you do so much,  what does he think, that we all just lay down and accept the pain then die?  mad
I have OA of the spine and hips and FM.  At 63 I still ride my bike several times a week, go to the gym, do yoga, walk and train a large dog, and anything else I want on days I feel good.  When I have a bad day I rest, then start all over the next day with whatever I think I can do.
My internist is the doctor who diagnosed me.  He is treating me for some other stuff, so I felt he knew my body best.  He is supportive.  You need a doctor who listens to you.  Who knows your body better than you. 
Good luck Boo.
Fibromyalgia, arthritis in spine and hips, IBS, Raynaud's syndrome, hypertension
On the eighth day God created Golden Retrievers.

Regular Member

Date Joined Jun 2009
Total Posts : 110
   Posted 6/22/2009 3:29 PM (GMT -7)   

I bet you feel better already. Just venting and getting pissed off at doctors feels good, doesn't it? It's hard to know what kind of a dr you need most. A good internist who believes in fibro is the cats meow. He/she can follow you thru, and prescribe whatever you need. I personally didn't have much luck with a rheumatolagist(sp).

You are very unique, just like the rest of us. You should find a dr that you like and trust. Remember, fibro isn't the easiest to diagnose in the first place, so go back to the dr you had if you can.

We are all in this together. Vent when you need to, encourage others when you feel like it, but don't give up. Good luck, Boo.
anxiety, avascular necrosis, costochondritis, depression, cfs, hypothyroidism, fibro, gerd, thyroid, uc 
in trying times, don't quit trying          

Regular Member

Date Joined Mar 2009
Total Posts : 235
   Posted 6/22/2009 5:16 PM (GMT -7)   
Hi Boo are you doing better today?
DX:  Asthma   Fibromyalgia   Partially Blind

Veteran Member

Date Joined Nov 2008
Total Posts : 2858
   Posted 6/22/2009 5:46 PM (GMT -7)   

Hi Boo...most of my pain is on the right side.  I get a burning occasionally all over, but the stabbing pain is one sided and I have been told I have fibro.  I too, up until recently, have done all kinds of strenuous activities, including moving heavy furniture by myself out of my moms house after she died.  I have been luckier than most and have extensive periods of time when I hardly notice the pain.  But the flares bite....and this one has lasted for months.  Sometimes I think finding a doctor to treat this condition is worse than the disease.  Find one you trust and knows something about fibro...telling you that you don't have fibro because every square inch of your body doesn't hurt is ridiculous.



fibro, menieres disease, RLS, anxiety disorder, disc compression, scoliosis, spinal stenosis TMJ  Meds: Lexapro and valium

Regular Member

Date Joined Jun 2009
Total Posts : 222
   Posted 6/23/2009 3:14 AM (GMT -7)   

hi all,

thanks so much for the replies it means a lot.

After talking to my husband and telling him what happened and what i think of the situation i went to bed last night and decided something.

I got up this morning, i'm going swimming, i'm getting out on my bike and i'm going back to work next week.

I agree with you, there are differing levels of FM and like you i have good days and bad. I firmly believe i have had such a long period of time since it's been this bad the i've forgotten how bad it can get. I also think it's the fertility drug i took that has flared it up. Stress is also a major trigger.

Like you say, only i know my body, and to me i have all the classic FM symptoms. So i'm going to believe in my rhumatologists diagnosis in the same way as i believe my fertility specialists treament.

I think i did fall into a trap of going to too many different doctors and just confusing myself. But, it's not till it was pointed out to me here that i made that connection.......there goes my brain not sparking again! sometimes i need to see it in plain text in front of me to GET IT.

So I am accepting i have FM, there's not a lot i can do about the OA progressing and as long as i have the support of you guys i think it'll get easier.

Thank you so  much and i'm glad i found you.

BikeBoo, biking with my boo since 1999
Of all the things i've lost, i miss my mind the most!
Fibro and spinal arthritis, trying to mange it with diet, exercise and accepting my limits, as i'm allergic to EVERYTHING!
TTC NO1 since Jan08

Veteran Member

Date Joined Aug 2007
Total Posts : 6067
   Posted 6/23/2009 6:53 AM (GMT -7)   
I'm glad your feeling better after talking to us and hubby. Everyone of us are different and our fibro is different, my fibro has changed many times over the years, so it doesn't even stay the same for each person.
Your right, do what you can do everyday. That's what I do, but it's not near what you can do everyday, doesn't mean we don't both have fibro though.
luv and hugs
Forum Moderator Fibromyalgia
Fibro,Sjogrens, Anxiety, Gastroparesis, IBS, Gastritis, Allergies, High Blood Pressure, Low Blood Sodium and Osteoarthritis
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