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6 years ago  ::  Feb 27, 2008 - 12:01PM #11
ccma2
Posts: 3
[QUOTE=O.C. GAL;303170]ccma2 welcome :) No you are not lazy!!!! Our pain is so real and yes it is extremely painful. People who do not have Fibro, have no clue what we go thru.  Gosh we look good on the outside and we look all put together....and only to wish our insides would just match the outside of us. Im not sure how you all handle saying No to people when you dont feel well, and the reactions you get from people, especially family. I feel they dont believe me. It is hard dealing with illness. Do you get this kind of reactions? I wish and pray I can do more then Im able to. ccma2 how long have you had fibro? I would like to hear your story. I have had it for 7 yrs now. I too like SunRaz, have the classic symtoms. Will  we  get better? Im feeling abit discouraged this week . Maybe cuz its raining a bit over here in SoCal. The weather is hard on me. Anyway, take care and hope to talk to you all soon.[/QUOTE]
Hi O.C. I was diagnosed with FMS in August of last year. Prior to that I had a lumbar disk removed in Sept. of 06 and then had to have the same surgery in Feb. of 07 to repair the first botched up surgery. I then had an anterior cervical fusion done in June of 07. The last surgery was more serious as I had a metal plate inserted in my neck with 6 screws attached to my cervical spine. Sooo three major surgeries in a 9 month period was very taxing on my body. It was before my last surgery when I began to experience a fatigue that was unexplainable. Actually, it was about a week before my neck surgery. I just thought I was stressed to the gills. After my neck surgery I had to wear a huge neck brace for 10 weeks 24/7. Yes, even to sleep. So for 10 weeks I was on pain meds. Once I got off of those meds I noticed the fatigue, serious brain fog, my whole body ached as if I had arthritis all over, my feet and hands ached all the time. This did not go away. Then my husband was not forgiving as I was suppossed to be getting better. LOL I went back to my family doctor and she ran a whole lot of blood work then gave me a b-12 shot. The second visit was upon my insistance.I thought I needed another shot of b-12. lol again. Then she sent me to a Rheumatologist. He then ran his version of blood work but he actually listened to my complaints. By that time I felt like a whiner. I was almost embarassed to tell him because to me I sounded like a broken record and was going from Dr. to Dr. for comfort. It was then that he told me I definitely had FMS and Osteoarthritis. He gave me Lyrica.My famiy Dr. had put me on Cymbalta. Gave it a try and gained nothing but weight. So my Rheum. sent me to a Psychiatrist for pain management. I have been seeing her and my family Dr. regularly. Oh, my Rheum. also sent me for a sleep study. I take Lyrica at night along with one antidepressent  and Lunesta for sleep. I still wake up at night. In the morning I take a different type of antidepressant and a stimulant to wake me and possibly give me more energy throughout the day. I am showing a bit of energy but unfortunately I still have pain coupled with back pain from my surgery. Recently I have been experiencing alot of jaw pain. I have to  take a pain pill for that because I can't chew my food on one side of my mouth without it.  If you are wondering why I had to have all these surgeries it is because in Nov. of 04 i was rear ended by a truck. No, I did not have a big settlement because these injuries took their toll over time. I went from tolerating the pain with meds until my left leg fell out from under me. It was nerve damage from two herniated disks in my lumbar region. I went from Hero to Zero at that point. My ENTIRE LIFE HAS CHANGED SINCE THAT AWFUL DAY IN SEPTEMBER 2006. So here I am now working on acceptance and 35 pounds heavier. If you are female you can understand the depression that alone brings. So that is my story. I was on long term disability for one year until my employers insurance company decided this Feb. that I was fully capable of working a 40 hour work week. So those little bitty checks that I was receiving came to a halt. Now I am having to prove to them that I am not  able to do that. Not even part time. It would be an injustice to any employer that would hire me to not tell them of my disability. Do you then think that they would hire me knowing that ? It's an awful merry-go-round that I am on and I want to get off!God bless you for interest in my story.
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6 years ago  ::  Feb 27, 2008 - 3:30PM #12
karbie
Posts: 3,329
Dear ccma2,
  I can really relate to what you went throough when you had neck surgery--  I was due for a set of lumbar nerve blocks, but I talked the doctor subbing for mine to do my neck instead because I'd been havinga lot of trouble with my right hand and arm. My pain doctor speads blocks out with 1 shot a week for 3 weeks... the first was a little tingly, but not bad, and since I take them without sedation, I know what's going on. The second shot made me jerk a little, but not enough that anyone seemed upset. The 3rd shot brushed my spinal cord and the spasm was so severe the needle shot out. I had originally been going to drive myself home, so my car was there, but the hospital got a ride for me since I could barely dress. I was in spasm until my husband went and got the prescription for Neurontin for me.
  The doctor had a new MRI taken...then they called and asked if I had my own neurosurgeon or would I like them to recommend one--I had them pick. She showed us that I was missing three discs; the rubble was just on top of one, and the bone spur was actually pressing on the spinal cord. She wanted to do the surgery in 2 weeks time; I asked for 3 so we could make some arrangements for after the surgery. I had the surgery and grafts on 4/19/01. Unfortunately, I slipped on the basement stairs and broke the tip off my tailbone on 4/14/01. I don't recommend having a neck brace and a broken tailbone at the same time! I was SO glad they let me go home the next morning! The day nurse when I first was in a room was a doll, but the night nurse made sure I couldn't bother her. I was allowed a shot of morphine every hour. I didn't know her name because she hadn't told me and wasn't wearing ID. First she left my call button on top of my roommate's blood pressure monitor. I got a fresh gown and sheets around 1 AM when she knocked my water pitcher all over me. She didn't know how to disconnect me from some of the machinery so I was trailing wires when she left me in the bathroom to clean myself up. She left my call button on the floor behind my bed that time. I did manage to get an orderly to track her down for a pain shot by simply taking the oxygen monitor off my finger so the alarm would sound...you use what you've got.
   She DID put my call button where I could technically reach it that final time, woven through the IV tubes so that the needle started coming out of my arm if I moved. My father always told me that if you want to get out of the hospital sooner, stop asking for pain meds. The doctor was amazed I'd made it through the whole night with only 3 shots....I don't think I would have taken a shot every hour, but I would have taken more than 3 if I'd had a chance.
  Phil took vacation time to take care of me...he couldn't have been more loving and nurturing the whole time. While I was in the shower, he'd spray rubbing alcohol in my neck brace to disinfect it and then put baby powder in it to make it feel better. He had to dry me because you can't bend for a few weeks after the surgery. He didn't think I was well enough to be alone when his vacation time was over, so he put in for retirement instead. He had been working for Chrysler for 35 years and decided he didn't want to go back...and I honestly thought if he stayed much longer it would kill him.
  did they go in through the front for yours? they did for mine, so between that scar and the one from having half my thyroid removed in 1979, I look like someone has been trying to cut my head off without being able to connect the lines. I still ended up having carpal tunnel surgery on my right hand--same surgeon. I've probably had fibromyalgia for longer than the 10 years since I was diagnosed.
  I'm sorry so many of you are going through so many hurdles to get the money and insurance you deserve. I don't qualify for anything on my own...as the SS keeps informing me 4 times a year. Our plan had always been for me to go back to work when my son entered middle school to help save money for his college. His health took such a severe nosedive that I home-schooled for grades 6-8...he was supposed to be kept away from cats and dogs AND the people who had them. His middle school had 500 people in it and people with mush for brains running the asylum. His asthma went off the charts after being sent out to stand in ragweed for 20 minutes a day. They didn't make the connection--just called me to ask if there was some psychological reason he was having asthma attacks at the same time every day....20 minutes after standing outside...duh. This improved after I had to petition his counselor to allow him to spend the after lunch time in the library. His whole body was attacking him and his weight kept dropping. They could call to harass me about his attendance, but no one bothered to tell me my rights. A child with a chronic illness can be put on weighted attendance so their absences are not counted as heavily under the Federal Disabilities Act. Someone with a chronic medical conditon, whether physical or mental, is considered handicapped and eligible for all the protections of that act.
  I learned that from a counselor that Chris was seeing outside anyone employed by our school system. I had the right to request an IEP-short for Individual Education Plan. Chris has Irritable Bowel Syndrome, and he also had teachers who would allow ONE bathroom break per YEAR per child. When finished, it is supposed to act like a safety net for your child...of course, in the 3 years he had one in high school, none of his teachers would have known he had one if I hadn't sent them all letters telling them the provisions of his IEP. Always assume that your particular piece of paper is the one that fell through and acct accordingly. When I withdrew him from the school system, I hand-delivered every paper to the Board of Education myself and insisted on a written receipt. I was following one of my family's mottos "Just because you are paranoid, it doesn't mean they AREN'T out to get you."
  He's in college now, and while he gets flair ups of things, we make sure that he has a note explaining his chronic illnesses to his professors if he has to miss class. He would be eligible to be on an IEP in college, but he didn't want to and that's his choice.
  I can think of a few things about your jaw pain--have you had a sinus infection recently? My teeth have deep roots, so when my sinuses are swollen, my jaw and teeth ache. Do you have all your wisdom teeth out? I had one that there wasn't room for. amd it tried to grow through the end of the upper jaw. Then there's that TMJ, where the jaw dislocates itself, causing tremendous pain, or an infected tooth. Whatever it is, I hope it goes away soon!!
  i haven't been around much lately--I'm doing a major all-body flare-up at the moment. I was supposed to get a nerve block today and had to reschedule because after 2 rounds of anti-biotics my bronchitis seems to have no intention of going away. It saps what energy I have when I'm not coughing my head off.
I want to welcome  any of the newbies i haven't met--I've read some posts, and Sun really does a great job as host ! She and selkiepeople were the first ones who welcomed me here, and I feel very lucky to have them as friends.
Hugs(anywhere it doesn't hurt to be touched)
Karen
I guess we'll just have to invent "air-hugging" to go along with all the "air kisses" and "air guitars" out there!
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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6 years ago  ::  Feb 28, 2008 - 5:09AM #13
SunRaz
Posts: 172
Star, welcome!

I want to welcome you to the board! We've developed a tight group and welcome you whole heartedly!! I'm glad you found us too!

I didn't create this board. It's been here for a while I believe. When I stumbled on it last year, I thought wow, what great potential for a great place for us!! There weren't many people here. For a week or so I posted to myself!! LOL. I think some people felt sorry for me and started to post too. Just kidding!

Anyway, I didn't start the board but I do host it. I've grown very fond of the people I've met here. It's been amazing for me to share with others who are living with the challenges of fibro. People from all over the world. I consider myself fortunate to have met them all. Their my chosen family since they understand me better than anyone. No one judges me when I come here and vent. They understand when I get angry or sad and how awesome it is to simply have a good day! We all share our good and not so good news!

Please do join us and feel free to jump right in. I'm sure you'll feel welcomed. I wish you all the best finding a new home for you and your children. I have great respect for moms who have fibro. I try to remember that God has a plan and I'm right where I'm supposed to be. I don't really know what the plan is yet, but I have faith!

Good to meet you! Sun
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6 years ago  ::  Mar 12, 2008 - 9:03AM #14
karbie
Posts: 3,329
Hi O.C.Gal,
  My body doesn't like time changes either. If they could figure out a way we got an extra 2 hours sleep each time, then I could see the point..otherwise it's just another hassle. I get up most mornings to be sure my son gets to school...I know he hates commuting to college, but Phil and I can't afford a second car now. I'm grateful to just have ONE..but the gas prices are ridiculous.
  One of the fun things about fibro is being in just enough pain to keep you from getting asleep deeply enough to do any good. Too bad my bed isn't as comfortable when I go to sleep as it is when it's time to get up. Since I'm still recovering strength after being sick for a month, it doesn't take much to wipe me out.  For being the kid who always fought taking naps, I sure take them now. I tease Mother that she just tried to give them to me too early in life!
  Start moving your mornings back about 30 minutes at a time. I'd think that shooting for 9 AM eventually would be good--that makes making appointments easier. I know that if I don't get dressed as soon as I get up my chances of being in pj's all day more than doubles. If you get worn out, take a nap after lunch. Keeping as rested as you can reduces the strain on your body and helps lower your chances of major fibro fog, which seems to show up big-time in Winter months.
  I like your idea of a pain song CD; I've written some poems about that myself, or just come up with twisted song titles or just ones that would be perfect with new lyrics. "Don't Get Around Much Any More" becomes "Can't Get Around Much Any More"; "Whimper While You Work". Might as well laugh if we can.
Karen
"You are letting your opinion be colored by facts again."
'When I want your opinion, I'll give it to you."
these are both from my father.
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