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Ntish
Regular Member


Date Joined Jul 2010
Total Posts : 36
   Posted 7/22/2010 12:25 PM (GMT -7)   
I just wanted to say Hello from a 45 year old female!
 
I was diagnosed with Fibro last month, after seeing different docs since Feb.  I realize that this is short, compared to many of you, but it seemed like a very long time for me.  I am never sick!
 
I started getting symptoms, achy joints and muscles, 4 summers ago.  It seemed to be much worse right before my monthly cycle.  I mentioned it to my OB/GYN.  We were building a house at the time, with my husband and I doing all of the work, plus I was in a rock band, which played outdoor street dances several weeks during the summertime.  I also had 2 college students, who we had to move several times each from dorm to home, etc.  So, my doc said it was due to overuse of my body during this time.  Things would clam down once it cooled off, and it wouldn't start back up until it warmed in late spring of the next year.
 
This past summer, it didn't go away.  And by Feb. 2010, it had gotten worse, and it wasn't only centered around my cycle and I had more symptoms.  I had so many blood tests done, and of course, they all came back negative, except for having low Vitamin D, but since I lived in the north, I was told that this was normal, due to use only being able to get vit. d naturally from the sun 4 months out of the year.  I was then off to see a Doctor of Interman Medicine.
 
This guy was great!  He did more blood and urine tests, and he sent me for an MRI.  By late April, I had much muscles weakness, but only on one side of my body, so this really concerned him.  The MRI came back with 2 very small spots, so he sent me to a Neuologist for an EMG.  Of course, that came back negative, so I was then sent to a specialist Neuro.
 
This guy was a jerk!  He kept telling me that my symptoms were being cause by the fact that my daughter was getting married in a couple of weeks.  Exucse me?  Has my daughter been planning a wedding for 4 years??!  I don't think so.  He saw the spots on the MRI and thought I should have another one done, this time with contrast.  I was supposed to have that done with a follow-up with him on the same day.  That day came, had another MRI, and then I was supposed to see him.  We got a message back saying he had an emergency, and that he would have to call me with the results.  This was not OK with me, since I had a 3 hour drive to see him!  I through a fit, and low and behold, I got to see him.
 
The spots were from my heart beating and this showing up on the MRI.  He had suspected this after seeing the first one, but he wanted to make sure.  After hearing this, I spoke to another Neuro, who said that both of the neuros should have been able to see that this was the case, and that there was no reason for me to have the follow-up MRI!!  So, again, the neuro said I was stressed due to the wedding and said "I'm sorry, there is nothing I can do for you.  Perhaps you should see a phychaitrist"!!!   Aarrggh...Are you kidding me?!  Look at my medical records.  You have to go back 5 years to see a doctor's visit other than my yearly check up and my broken ankle and subsequent surgery.  I'm never sick, and I'm not looking for attention, nor am I stressed! 
 
The wedding came and went, and it was great!  I danced two slow dances, one with my husband and one with my son.  I know my limits.  So, I recently saw a Rheumatologist, and it didn't take long to get my diagnosis of FM.  I was relieved to find out that I'm not crazy!  :)
 
I am taking 50,000 IU Vitamin D, plus I am to be in the sunlight until my skin turns pink.  I also take Amitriptyline for sleep.  I always thought I slept great, but apparently, since I don't ever remember my dreams, my REM sleep is screwed up, so I take that to make my sleep patterns better.  I have doctors who don't believe in pain killers other than NSAIDS, so that really upsets me.  I would like something for the really bad days, but the docs here are so worried about addiction!  Let me worry about that, please!
 
I get laid off in the summertime, but I will be returning to work in 3 weeks.  I'm real nervous about that because I don't feel any better, in fact, I have been feeling much worse in the last couple of weeks.  If anything is said to me at the wrong time, I will snap off a sarcastic comment, and I risk being fired.  I'm usually on a real even keel, but I can only handle so much pain each day, and the 750 mg of Advil every 6 hours isn't helping at all, nothing is.
 
Thanks for listening!  I'm sorry about the book.  I'm usually not a chatty cathy, but I the thoughts just kept coming. 
 
Again, I just wanted to say Hello!  tongue
 
(Edited to show change from mg to IU for Vitamin D)

Post Edited (Ntish) : 7/22/2010 6:06:40 PM (GMT-6)


sotiredoffibro
Veteran Member


Date Joined May 2010
Total Posts : 1556
   Posted 7/22/2010 1:17 PM (GMT -7)   
Hi Ntish welcome to our fibro family. Sorry that you have to be here but this is a great group of people here. I also wanted to comment on the fact that we are neighbors. lol I live in North Dakota. I know alot of the people here use benedryl to help them get a better sleep if your doctor isnt willing to give you any muscle relaxants. That sometimes helps with the pain during the day to if you get better sleep.
have you tried seeing a pain specialist sometimes they are more willing to give out the narcotics to help you deal with the pain. well anyhow welcome to Healing Well and others will be along soon with more suggestions.
Gentle Hugs
Shirley
DX: Fibro, Gerds, COPD, Osteoarthritis, Osteoporosis, High Blood Pressure, and Depression.
When I get where Im going dont cry for me down here. (Brad Paisley & Dolly Parton)


crazykitty
Veteran Member


Date Joined Jul 2009
Total Posts : 4796
   Posted 7/22/2010 3:56 PM (GMT -7)   
Welcome to the family Ntish, it seems to be pretty common that people with fibro go
through many docs and testing before they recieve a diagnosis. It is frustrating for sure.

We all tolerate meds so differantly, it is a trial and error process. I take Savella daily
and use Flexeril (cyclobenzaprine) for flares for my fibro. I also do daily relaxation
therapy to help with pain...deep breathing and meditation. Exercise is a must for me, if
I don't walk daily I hurt all the more. The meds I take are not addicting and when I
was on a narcotic (Vicodin) I wasn't addicted, I just didn't like how I felt on it.

If you can't find pain relief, you might have to look for a doctor who can help you.
Even with all the meds, I believe we all still hurt. My meds just help me hurt less.

Glad you have joined us, keep posting with any questions or concerns you have. The
members here are wonderful caring people. Be sure to che out fibro 101..Sherrine
has compiled a wonderful resource og great info for the fibromite!

Hugs, Robin
Fibromyalgia, MCTD (Lupus, Scleroderma & RA) Raynaud's, Osteoporosis,
Osteoarthritis, Degenerative Disc Disease, Migraines, and Hypertension
Prescription Meds: Savella, Cyclobenzaprine, Methotrexate, Diltiazem, Boniva,
Folic Acid.  OTC Meds: Multi-vitamin. Vit, D, Vitamin B12 & calciim supplements
 
 


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 7/22/2010 4:31 PM (GMT -7)   
Hello Ntish, it looks as though you've had your share of fun on the carousel (will THIS doctor believe me - or will he treat me like I'm 5?  Can I carry this book across the room without being sorry?? )  Oh, yeah - fibro is something else, all right!
 
A lot of my problems are overwhelmingly on one side of my body, too....strange!
 
I do hope you can find someone you can work with, who will really help you.
Achey
This too shall pass...   
 
 
.......fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed
    
 


Ntish
Regular Member


Date Joined Jul 2010
Total Posts : 36
   Posted 7/22/2010 5:05 PM (GMT -7)   

Achy,

because of the problems being on one side, they were thinking I had one-sided MS!  To this day, I don't know why it is like this.  No one has an answer.

I told myself that I will give the Vitamin D one month to kick in before I seek pain meds.  My GP, who is supposed to be prescribing my meds for some reason, said that the Vitamin D will help with the pain.  Not so yet, and I've been taking them for 3 weeks. 

I wish I knew why I have to get all of my meds from my GP.  I broke my ankle last year, and in the ER, my GP said that Tylenol would work!  I knew I had to have pins put in my ankle, that's how bad it was broken, so how could Tylenol take care of that pain?  He is known for not wanting to prescribe anything that could become addictive.  I have one more week, and then I will seek someone who will give me something!


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 7/22/2010 8:14 PM (GMT -7)   
Well, I sure hope it does kick in. I don't think it's too much to ask not to live in extreme pain rolleyes !!
Achey
This too shall pass...   
 
 
.......fibromyalgia, hearing loss, elevated liver enzymes, skin grafting (back), arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraines, tachycardia, cancer surgeries (face).......I take Nortriptyline & Clonopin daily, and Darvocet as needed
    
 


TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 7/22/2010 9:08 PM (GMT -7)   
Welcome to the forum, Ntish. You've found the kindest and most caring group of fibro people anywhere on the net. :) I'm so sorry about everything you're dealing with - but everyone here can definitely relate. There was a great interview on the radio show, The People's Pharmacy some months ago with a doctor talking about vit d. I think they archive all their shows on the net now - and you could probably hear it online. If you google, you might find it. I thought he talked about the length of time it can take to get your levels up again - and I think he advocates retesting to make sure it is rising as it should. Maybe that would be enlightening.

Anyway, so glad you found us.
:)

TheChickenPrincess
Veteran Member


Date Joined Jun 2010
Total Posts : 554
   Posted 7/22/2010 9:15 PM (GMT -7)   
Just googled - this might have been the show I heard:


http://www.peoplespharmacy.com/2009/02/07/672-vitamin-d/

Hope it might be helpful.

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 7/23/2010 9:03 AM (GMT -7)   
Hi, Ntish, and welcome!  I'm glad you found us and joined our family.  I, too, take vitamin D3 and I live in sunny Florida!  Many with fibro have a deficiency in this and so do people without fibro because of using sunscreen all of the time.  I take 5,200 IU a day and it has helped with pain.
 
I also take malic acid/magnesium supplements because we can be deficient in this, too.  These have helped me a lot with pain and fatigue.  I do not take narcotics.  I keep Vicodin in the medicine cabinet as my security blanket but I have never used one.  You see, I know fibro pain waxes and wanes and I just wait it out and continue stretching and moving. 
 
I use ibuprofen with food and extra strength Tylenol, along with the supplements to help with pain and fatigue.  I also do stretching exercises and a gentle exercise daily.  I walk and swim for my exercise.  It loosens the muscles, helps with the pain, and I have more energy after a walk.
 
Be sure to check out Fibro 101...the first thread on the forum.  There are links to good information about fibro and you will learn a lot.  There are links about malic acid/magnesium supplements, vitamin D supplements, and some good stretching exercises that can be done sitting down...which is great if you have a desk job!
 
Don't hesitate to ask questions because we are here to help you.  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

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