New Here and Thank you

Discussion in 'Fibromyalgia Main Forum' started by jgbeaches, Feb 18, 2011.

  1. jgbeaches

    jgbeaches New Member

    I was just diagnosed almost 2 weeks ago, but figured I had it almost 10 years ago in my early 20's if not late teen years, but was told I just had arthritis and that was the cause of my pain. Dealt with it through my 20's good days more than bad but very frustrated that there where days that I could barely walk. About 4 or 5 years ago I got really bad, I volunteer as a youth minister and we were at a conference and I colapsed couldnt walk I was in so much pain, they had to wheel me out to our bus, when I got back I went to the doctor and they did an MRI on my back, bulging discs L4 & L5 and I have degenerative discs and arthritis in my spine, so physical therapy for me, well I still had issues with pain all over, but it was being explained that it was my back, so years of dealing with this was getting very frustrating, went back to physial therapy twice only would give slight relief, never take pain fully away, went to chiropractor, first visit there, she states she thinks I have FMS, she cant touch me anywhere on my body where it doesn't hurt, needless to say nothing was follow-up by this, two weeks, this past summer I was simply walking and my leg hurt so bad I could barely walk went to orthopedic doc states I fractured my ankle, his office seemed to have two different opinions so went to second doc, stated didnt fracture anything but maybe strained something, anyway was in a walking boot for 10 weeks and a wheelchair for 2 again very frustrating, at the end doc stated boot made it worse and to do physical therapy, went for 3 weeks back to where I was before, two weeks ago was sick and felt like I had been hit by a Mack truck went to doctor tested to see if I had the flu didnt, had bronchitis and that is when I said but my body hurts all over my back my legs arms I get severe "knots" in my shoulder that are so bad they feel like bone, and my husband got a massage table for me so he can help work them out, and the doctor asks do I want to go back for physical therapy and that is when I said "NO" it doesnt relieve anything everything they do I can do at home and do to help but it doesnt maybe a day or two I am not in as severe pain but still in pain, so then he says what did the chiropractor state and thats when I mentioned the fibromyalgia, he stated okay, lets look, he does an exam and states, yep I think that is what you have, and let me mention this I already mentioned to him awhile ago that my grandmother has FMS and great grandmother had RA and on my dads side my grandmother has RA severly, so doc diagnose and now my care is being handled by my rheumatologist, not sure if I like him, left the office not even knowing if he agreed with my primary's diagnosis, he did he changed my meds so now I am on 60mg of cymbalta and 4mg of zanaflex, pretty much my doc just wants me to get sleep, says that not much to do for my pain, we will see how it goes.

    But I wanted say thank you to everyone who posts I have started to learn why I have all these other "issues" I am not bad as most I have more good days than bad days and truely blessed for that my main concern is will I get worse, it doesnt help that my spine is deteriating, and that I also have OA, but it is great to see such a great support system, I was reading stuff the other night and I told my husband "see I am not trying to be a pain in the butt when I ask that you turn off the kitchen light, but there is a reason why I hate our kitchen light" it bothers me ALOT who knew that it is from my FMS.

    I work full time and work almost full time as a youth minister, I have been married to a wonderful man for 12 years together for 17 years started dating when we were teenagers, I am 31 yrs old and love my 30s, have no kids, would love some but at times it is truly a blessing since some days its hard for me to take care of me, my husband is great at helping and sometimes I feel like people think I use my illness as a crutch, it is hard at times to explain to them that, one I have no energy to do it or strength or it just hurts too much. I push through and I am looking forward to start swimming, I have been in a flare up since being sick so didnt want to over tax my body even more, and now understand that it is good to exercise but not look down on myself if I can only do 10 min here or 15 min and not an hour.

    Again, you all are wonderful people and thanks for the great support.

  2. 3gs

    3gs New Member

    Hi JG and welcome to the board. It is always bittersweet to have a new member.

    Your story is very typical for a fibro pt. As for your doc saying not much to do for your pain-hogwash. He also is giving you the standard for this good ole Cymbalta(you may want to put this in search and read what is posted). sorry my opinon of rhemys is not vry high.

    The best thing you can do is rest rest rest. the push crash cycle is bad.
    Your hubby sounds like a gem. the knots are Myofasical pain and he is doing a good deed for you! Don't over excerise!!!!

    As to the question will you get worse? This dd is so indiviual that is hard to say. did your doc do anyblood work? vitd levels? Sensory overload is very common also(lights).

    one suggestion. lots of folks have a hard time reading. You may want to break up your post.


  3. jgbeaches

    jgbeaches New Member

    Yes the doc did blood work and an xray of my back again, get results next month I guess he didnt say much. Thanks for tip about posts.
  4. rockgor

    rockgor Well-Known Member

    Welcome to the board. Lots of nice people to talk to here.

    You can find a list of the various boards at this site in the upper right
    hand corner. You can visit the Chit Chat board if you want to talk
    about non medical topics like sports, kids, pets, music, etc. The board
    is the only social life I have anymore.

    The board rules are also in the upper r. h. corner.

  5. Janalynn

    Janalynn New Member

    Hi JG and Welcome!

    I'm so happy you found this site! It's full of great information and lots of support. Everyone is on a different journey down a similar path, so some things will resinate with you and some won't. I'm sure there are many things you will have to offer others as well!

    Your experiences so far are pretty typical. Although you have other medical issues going on, the fact that you have other pain that isn't going away or being relieved is certainly indicative of Fibro.
    I have a GREAT rheumatologist so I have different opinions of rheumys than others do. =)
    Sleep is VERY important, that's probably why your Dr. mentioned it. The lack of refreshing and restorative sleep is either a symptom of or a contributing factor to the severity of your Fibro. It's sort of the which came first, the chicken or the egg? Can we not sleep well because of the Fibro or is the lack of sleep making the Fibro worse. That's how it's been explained to me several times (only MUCH better since I can't articulate very well right now)

    Cymbalta works wonders for some people, so also not uncommon for your Dr. to prescribe it. You will find that treating Fibro pain is trial and error. It's not the Dr.'s fault, it's not your fault if something doesnt work. We're all so different in how we respond to things. I've been through countless medicines to see what can give me some relief. Some, I haven't gotten past day one. Some I've hung on for a month, then realized it's not doing anything so why take? Some I've had horrible reactions to.

    Support is KEY! It sounds like you have a fantastic husband, so you're way ahead in that department. Involve him in the learning process. I'm lucky that was as well. My husband is a God send.

    A Dr. that you have a good relationship with is also extremely important. Don't expect miracles though. DO expect respect and someone who will take this journey with you, someone who will listen to you, who is 'up' on Fibro, who is willing to keep you out of pain and willing to try different things. We are not easy to treat. I'm sure we are frustrating for Dr.'s who want to see their patients get better.

    NO STRESS! Stress wreaks havoc on us. Try to live as stress free of a life as possible.

    Exercise only to the point where you do not hurt. It's not the "no pain, no gain" thing with us.
    Walking is great. Many have a hard time doing that, especially on certain days. If you feel good - get out and do it! Overdoing is not good. We tend to pay for it dearly. 10 mins? Awesome. Walking to get the mail? Fantastic. Walking to the bathroom - perfectly fine!

    REST and SLEEP when you need to. I used to feel guilty about that. (sometimes still do) I really started just fully listening to my body. It's pretty good about telling you what it needs...IF you listen. I have to rest everyday. Pain is very tough on our bodies and it's equally tough on our minds.

    It's also easy to become depressed or "down" at times because of what we live with on a daily basis. Even if you are not depressed, your Dr. may prescribe you an anti-depressant. Many have other qualities that help the symptoms of Fibro, including sleep.

    I hope I'm not rambling... well I'm sure I am, sorry!
    I hope you'll share your own experiences, post questions and answers. It's very nice to have you here!

  6. bobbycat

    bobbycat New Member

    I am not on here as much as some are but I pop in and out. It is a great board for support and information. It is nice to be able to communicate with people that understand where you are comming from. Again Welcome
  7. jgbeaches

    jgbeaches New Member

    Thank you for the advice and welcoming me!