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lilly37
New Member


Date Joined May 2009
Total Posts : 4
   Posted 5/16/2009 10:40 AM (GMT -7)   
Hello all. I am37 yrs old and I was dx with fibro in 2005 aftering suffering for a year before finally going to a dr. Mine started off as pain in my feet when i would be at work. I didnt think much of it because i had never had a job that i had to stand on my feet all day until that one. Then i got to the point were it hurt too much for me to stand to my feet to wash my dishes or cook. I still blew it off on the new job. So i got another job where i didnt have to stand as often. Then my hands started bothering me counting money or to even write. They would swell and lock up on me. My fingers would look like i had RA. Which runs in my family. It wasnt happening too often at the time so of course i blew it off thinking i just needed some rest. Then my back started bothering me. Ok what is it this time, blew it off to a maybe i pulled a muscle helping my mom take care of my grandma who was dieing. I was keeping her home clean for her and helping lift grandma out of the bed . Well then my back locked up on me and i couldnt move. Called a chiropracter and they told me to put ice packs on my back so i did and it helped enough to get around again. Well my back never eased off from pain all that much but i figured in time it would. So now here goes my legs acting up. I would be walking and they would burn like i havent walked a step in weeks or something. My legs got to the point that i was having to drag them to walk. You never saw foot steps from me. You could find me by folling my slide marks. I would always feel like i was going to fall flat on my face if i would keep going so i would have to stop and rest before i could get to were i was going. If it was only just to walk outside to my vehicle. Ok now my neck started on me with a awful burn feeling all the time if i just held my head down long enough to read some mail or an article in the newspaper. All in my mind im saying am i getting this lazy or is there really something wrong with me??? Then i got to the point my neck would lock up on me and would go days not being able to even turn my head. HMMMM ok something is wrong here!!  Then one day i was driving my son to school and couldnt remember how to get there!! So here goes my 10 yr old son having to remind me how to get him to school. Then there would be days i couldnt find my way back home.  So  i tell my family members about it and they would just say girl you crazy. (they were picking at me) Then the day comes that my small job i was able to handle closed down. So me and my mom start sewing from home during the day just to make us some extra cash. Well my back started bothering me again to the point i would be in screaming tears. So me and my hubby figured it was time for a new bedset that has to be it maybe it would solve my back problems! So on our anniversery he goes out secretly and buys us a new bedroom suit. Wow i thought finally my back will be better. I was excited and couldnt wait to get in that new bed for the night. So here comes the horror of my story. When i woke up the next morning i could not move not one part of my body!! I couldnt even lift my head off the pillow, couldnt lift my arms, couldnt turn my head, all i could do was yell my husbands name. I felt like i was paralized!!  We didnt know what to do because it was saturday morning and  knew no dr office was open and i didnt want to go to the er. So i decided to wait it out to see what happens then i would go to a dr on monday morning. Well i had to stay in bed like that until sunday afternoon before i was finally able to move.  When i was finally able to get out of the bed i couldnt walk. For some reason everything was so tight in the back of my feet that no matter how hard i tried i couldnt put the heels of my feet on the floor so i was walking around on my tip toes all day. Bent over and couldnt stand up straight. So that scared me enough to know it was time to get checked out because I have a sister who was born with cebral palsey and thats all i could think of was something had went wrong and now i have it too. So on monday morning i go to my mom and dad and ask who is a good dr to go see. She sat me down and said me and your daddy need to talk to you. She told me there are problems that run in our family and i needed to make sure i get checked out for it. Thats when she mentioned fibo to me and i was like huh what is that??? I had never even heard of that word. So she sent me to the dr that has been treating most of their family members. I couldnt walk into the dr office on my own, i had to be held up to walk. When the dr saw me in the shape i was they took me straight on back to a room.  So here i am, bent over like a 90 yr old woman, dragging my legs to walk, hands balled up in a fist that i couldnt open, and being held up. So he examines me...he prys my fingers open and askes me to squeeze his hands as hard as i could. Well i did but then was screaming from the pain and couldnt get my hands locked from around his. So he has to pry my hands back from around his and watch as my fingers just point straight back down from the joints. So i start crying again asking whats wrong with me!! So he runs all the blood work and has me to come back. I was negative on everything. RA, cancer , Osteo, etc! Only thing that showed something was wrong was my SED rate. 0-20 is normal and mine was 56.  So he diagnosed me with the fibro. He asked me if i worked anywhere and i told him no and he told me i would never be able to work again. That was very horrible news to me because i was only 32 yrs old. He told me i would get worse and most likely be in a wheelchair.  As he started treating me I started feeling better, not knowing anything about FLare upS!! I was able to walk normally again and finally had a bit of relief. I went on like that for a month or so until the meds would stop helping. Strong pain meds make me very sick to my stomach. I couldnt handle them. They wouldput me out of my mind, couldnt remember my kids names, etc. So after 2 yrs of seeing this dr he tells me there is just nothing else he knows to do that i have to find a way to deal with this diesease and that he thinks i may have Lupus  also and wanted to do more blood work. Then come to find out he is our disability dr!! All of this started with me after going through a severe depression. So here i am 5 yrs later now having to walk with a cane. I have been in a flare up for a month and 1/2now that we cant get under control. I have been seeing a new dr and he has me on cymbalta 60mg for the burning in my spine and depression, lyrica75mg, 800 motrin for the swelling and pain because its the only thing i can handle for pain, and now trying a steroid pack for a week called Prednisone trying to get over the flare.  I have applied for my disabilty in april because now the fibro has attacked my hips, knees and ankles with in the last 2 months.  For the last 2 winters i stay sick for the entire winter month with chronic sinusitis, severe allergies, asthma, irregular heart beats and chest pain all due to fibro. I was in bed for 3 months straight this winter. Around my eyes had turned black, no antibiotics would clear me up.  Saw 4  dr's and they were all clueless to why they couldnt get me over the sickness.  I ran out of cymbalta 2 days ago and didnt have the money to refill them, i have no type of medical ins to help. And just after missing 2 doses my back is now trying to lock up on me today. Sorry this is so long...just wanted to share my story. HUgs to all who suffer with this monster!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17094
   Posted 5/16/2009 2:02 PM (GMT -7)   
Hi, Lilly, and welcome!  I'm sorry you are having such horrible problems.  Fibromyalgia and get pretty miserable at times but maybe we can help you some.
 
I, too, take ibuprofen with food and extra strength Tylenol for pain.  Be sure to take your ibuprofen (Motrin) with food because it can bother your stomach.  I take malic acid/magnesium supplements and vitamin D for pain and fatigue, also.  Many with fibro are deficient in these things.  I live in Florida and never in my wildest dreams did I think I could be deficient in vitamin D, but I am.  I am presently taking 3,500 IU of D3 a day to try to get me in the normal range.  So, ask  your doctor about these. 
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good information about fibromyalgia and you can learn a lot there.  There is a link all about the malic acid/magnesium supplements and how they work in your body.  There is also a link to good stretching exercises that are done sitting down and they do help.
 
Moist heat is good for fibro.  Hot showers or baths feel great.  Many use a Bed Buddy.  You can get these at Walgreen's and other places or you can make your own.  Take a tube sock,fill it 2/3's full of raw long grain rice, and tie a knot at the end.  Pop this in the microwave and it gives of moist heat due to the moisture in the rice.
 
It is important to keep moving as much as possible.  I know it is hard for you now but you should get better at moving the more you do it.  Light exercise is very good for fibro.  My choice of exercise is walking.  When I started, I couldn't walk very far but I kept trying.  I now walk my dog for one mile each morning.  It does make you feel better but, in the condition you described you are in, start out slowly and build yourself up.  If you sit or lay too long you will be stiff as a board.
 
Meanwhile, read back post and ask questions.  We are here to 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


Shash13
Regular Member


Date Joined Apr 2009
Total Posts : 179
   Posted 5/16/2009 7:15 PM (GMT -7)   
Welcome, Lilly! Don't really have much to add to Sherrine's good advice -- mostly just wanted to say hi and hang in there. There are lots of great folks on this forum who really care about each other, and now you're part of our FaMily!
Hope you post again soon and that you're feeling a bit better.
(((hugs)))
Shash
Dx: FMS,OA,depression,anxiety,DDD with 7 herniations so far,HTN,IBS,cardiac 
      stent,failing aortic valve,angina,migraines with aura,many surgeries,+misc.
Rx: Nifedipine,Atenolol,Enalapril,Simvastatin,Levothyroxine,Cymbalta,Bupropion,
      Dicyclomine,Lorazepam,Darvocet,Percocet,albuteral inhaler,nitroglycerin,+
Newbie to forum and novice with computer - patience, please!
 
 


kathydownunder
Regular Member


Date Joined May 2009
Total Posts : 447
   Posted 5/16/2009 8:12 PM (GMT -7)   
Hello Lilly, Well I can relate to your story for me it was a grual thing over a 6 month period I went from a NORMAL human to one who could not move now 16 years later I an good well for me i am good I had a wonderful Doctor I found after some not so good ones anyhow he told me to always go to bed believing that tomorrow would be a bettter day and believe I would go into remission. Well believe it or not I DID he had retired by this time but for two years I had NO PAIN AT ALL  So it does happen I dropped out but it was wonderful so believe it will happen somethng that I have found helps with the neck pain is be using a small pillow under my neck or a towel rolled up and sleep on that it stops the headackes for me. My Doctor is with me on this I take as few drugs as posible I know that sounds too simple but after years of taking morphine for the pain I was addicted to it it took me a year to get clean but I did and now I am very careful about what I take. At present I am only taking one drug but we all have to accept what we need to take to have some quality of life I have lived locked up in the house and my husband gave up work to care for me. We are lucky here in Australia we have a great perscrition subsity from the governemt if you are on a pension which I am on and my husband is on the Cares pension. Keep smiling just find something simple to smile about lughter really is the best medicane I am lucky we live in a rural area so we have birds and wildlife around here. Also my family have all grown up now but make the time to be there if I need them. Our daughter is a great cook and house keeper so she is always there if we need here of our four children 3 of them plus their better halves live close. I was 32 when I first got ill and now I plan my life around the FMS . You are in my prayers
 
Kathy
Fibromyalgia

GamJill
Veteran Member


Date Joined Jun 2008
Total Posts : 1279
   Posted 5/17/2009 6:06 AM (GMT -7)   
Hello Lilly and Welcome-
 
Oh-h-h-h-h can I relate to your story- the fibro hit me a year ago along with severe depression and I could not walk 5 ft! I would force myself up and out of bed and get to the couch, few steps out to the deck, or hobble to the computer. That is when I found this group, and with them, a good Dr., family and friends I am functioning at a level where I can live my life again. I cannot work due to the pain and I fatigue easily but able to manage day to day living.
 
Hubby has no insurance? And if he doesn't, do you have medical through the state or county that can help you?
 
Jill 
  
 
 
 
Fibromyalgia, Depression, Anxiety, TMJ, Arthritis/neck, SAD
 
Zoloft, Tylenol 4000 mg., Darvocet  


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 5/17/2009 4:00 PM (GMT -7)   
Hi Lily and welcome!!

We're glad you are part of our fibro family. Helping each other is how we make a great life for ourselves and you will too. Sure we have pain but it isn't going to stop us from living.

about the insurance problem. You do have some options out there for help. Below are some web sites you can check out for assistance with paying for your prescriptions. Often the companies who make them will give them free to those in need. Sounds like you may qualify. It is made by Lilly company...lol. Their web address is below. Also some organizations who help with uninsured patients.

Another option is your state health care insurance program. I believe all states sponsor health care for those who don't have any. Check with your state to see how you can qualify. It's often run by the state social services program. And one more place to call...your local Red Cross. Yep, no need for a tornado or earthquake to ask the Red Cross for help. I've seen them get folks health care insurance and medications, plus other assistance with just a phone call. Give them a try. Hope you can find something that will help.

Hugs,
Chutzie

http://www.lilly.com/responsibility/programs/
http://needymeds.com/
http://www.themedicineprogram.com/
Co-Moderator Fibromyalgia & Chronic Pain Forums
~~~
Fibromyalgia, Ulcerative Colitis, Insulin dependent diabetic, PTSD, dermatitis herpetiformus, osteoarthritis and a few other side dishes.
***************
Happiness is something to do, someone to love, and something to hope for."
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