New to FM from Pennsylvania

Discussion in 'Fibromyalgia Main Forum' started by suz41, Jun 21, 2003.

  1. suz41

    suz41 New Member

    Hi Everyone!

    I have finally and officially diagnosed with FM. However unlike many of the postings I have read my doctors (neurologist and Internist) have been rather supportive. I'm really not thrilled with all of this, however I have been living and thriving with a seizure disorder for the past 23 years due to a serious head injury. So I guess I'm just going to take it day by day. My biggest concern is the ability to take care of my two girls and continue my work with my clients as an subsatnce abuse counselor at a local school district as well as enjoying the outddors. I am lucky to have a husband that has always been there for me. I just finished out the school year and I was thouroughly exhausted and in pain especially by in the past two months. other then paperwork I plan to take really good care of myself this summer. As with the sezure disorder I refuse to let either the FM or Epilepsy define meand who I am as person. I think trying to maintain a positive attitude and recognizing my limitations is crucial and keeping a sense of humor. Hope to hear from others soon
  2. AnnG

    AnnG New Member

    I cried when I read my first article on FM. Maybe there was a name for all the crazy symptoms I had had for years. The diagnosis was a huge thing for me. Once I had a name, I could just relax and not assume the blurry vision was a brain tumor, the pain was a sign of some horrible disease (well....?) etc. It freed me to move on with life as much as I could. I am quiet in the care of this and try not to make it the focus of everyone's attention. I am taking a break from my very physical job, sometimes I take LONG naps and sometimes I hobble like a very old woman. But, I try not to use it as an excuse to hide from life. It sounds like you have a great attitude and will do well in whatever you choose to do! Welcome!
  3. cindye

    cindye New Member

    If you read many of the messages, you will see that I have been pluging the book "What Your Doctor May Not Tell You About Fibromyalgi" by Dr. St. Amand - not only does it tell about the guai protocol which he uses but it really tells you a lot about fibro. Not having the syndrome (wish it were me rather than my teenager)I still kept saying as I was reading "I could have written this" It explains so many of the things you are feeling and tells you why - it was very helpful in understanding fibro and I found a chiro who uses the guai protocol and my daughter is feeling 90% better - if we could just get rid of the fatigue!! Good luck! By the way, I was born and raised in PA - both my husband's and my family still live in the Indiana, PA area.

    [This Message was Edited on 06/21/2003]
  4. scoop

    scoop New Member

    Hi Suz41,

    Welcome to the board. We are all hear to support you in any way we can.

    You mentioned you are from Pennsylvania. I also live in Pennsylvania. I have been thinking of starting a support group possibly. Always wanted to help people and living with this for seven years has really made me want to help people even more in any way i can. If you are interested let me know. Not sure where in PA you live but i can also give you my e-mail address if you are not comfortable with posting it.


    Their is a book which has really helped me through the years and it is called "Fibromyalgia and Chronic Myofascial Pain Syndrome" A survival Manual by Devin Starlanyl, M.D. and Mary Ellen Copeland. Devin lives with this illness also and has written some articles which you can find on this website. Out of 10 books i have on this, it is the best one i have come across! It explains all of the trigger points and the symptoms down to every area of whole body. The diagrams help a lot about the trigger points. You realize you aren't going crazy! It also gives some good ideas about treatments and coping with it.

    It also explains the difference between Myofascial Pain and Fibro.(Myofascia is a thin almost translucent film that wraps around muscle tissue). Some doctors don't even know the difference unfortunately and she explains about it in the book. You can have both which the book explains about and until reading it when i was diagnosed with both i didn't understand the difference! I thought FMS was trigger points! MPS is specific areas of the body with trigger points. In FMS there is a bodywide, diffuse achiness, with tender points. They are two seperate beasts!


    It sounds like you have a wonderful positive attitude which sure does help with this along with a good husband to help be supportive.


    Hope some of this helps.
    Take care and welcome!
    Hugs,
    Scoop
    [This Message was Edited on 06/21/2003]
  5. ForeverFlaring

    ForeverFlaring New Member

    Hi PA!

    Sorry to hear about your diagnosis. I am sure there were mixed feelings about it. I am glad you are trying to keep a positive outlook on things. Staying positive is really important and it is so easy to slide in the other direction.

    Anyhow, just wanted to welcome a fellow PA person! I am in Greensburg..we have a few SW PA people here as well as one near Johnstown that I can remember and a couple near Philly.

    Best Wishes,
    Sandy (FF)
  6. Shirl

    Shirl New Member

    Hi Suz, welcome to the board. Just stopped to welcome you, and glad to see others from your state are here also.


    Hope we hear from you often...........

    Shalom, Shirl
  7. Annette2

    Annette2 New Member

    Welcome to the Board. I read you're originally from Rhode Island. I lived in Rhode Island for 4 years. I lived on the Post Road in Apponaug - my son was born at Kent County Hospital. Where did you live? You'll get a lot of good info here- just keep coming back!!!!

    Annette2
  8. garyandkim

    garyandkim New Member

    The best advice we would give is research, this site has the greatest collection of info. since you were just dxed. We ahve tried everything that we have heard of to help us and wish some of the proticals worked for us. We all find things that help some and not others but it's a trial and error type thing and each person is different. There are combo's of meds and suppliemts to. Gary and I take some meds that are the same but, that's only a few. One the top topic on each page there is a free Guide on FMS and CFS they will send up to 99 at one time and as ofton as you'd like. They are a great tool to help others understand a bit and then the address for here is on it. We give it out every where to get the word out ans so family, friends docs and others can get some understanding and learn. Gary had to go on perminant disability Jan 2002. We kept copies from all our docs and records and test, and when he and the doc said he couldn't work anylonger it was easier for us to fill out the forms.

    Please take the summer off and rest, there are remission states for some and we when younger had more and longer ones. Pace yourself and when you get energy don't OD and go for it all. We made that mistake for years. I had to stop working in 93.

    You are so right a sence of humor is essential and since you have a seizure disorder you are already understanding of how an illnss can change your routine. But, seriously these DD's are so my symtoms piling up. It's hard to believe that you end up saying oh, well just another symtom. But, if you do get new symtoms please don't pass it off as FMS get them checked out and if the answer doesn't feel right keep looking. It's just thst so many of our symtoms can be signs of something serious. Well I hope I did over load you with all this but,keep your eyes on your kids too for symtoms. If obe parent has it there is a 25% chance that your kids will develop it. Gary and I both have FMS/CFS and on so our kids as they tell us have a 50% chance and one of our 5 boys is dxed and 2 others have symtoms. The other two a couple but, then we are watching for them.

    Well I ran on sorry. Welcome,Kim and Gary
  9. pegasis

    pegasis New Member

    support group!!! I live in Greencastle.It is near state line and about 15-20 min. from Hagerstown, MD. Maybe some of us live close enough to start a group. I would be willing to drive about 40 min. After that, it would hurt to much. Is it just me or is all this rain we have been haveing making the fibro worse? Ah well, plants are beautiful right now so its a good trade off lol. I would like to welcome you not only to this site but also to PA. It is a wonderful state with alot of things to see and do. It can be painful to get around but I find that the more my mind is occupied, the less I notice all the pain. So, make sure you check out Hershy Park (we are going to hurt anyway so it may as well be worth it) and also take the family to Gettisburg. Allows everyone to learn American History but in a real hands on, grab your attention kind of way. Sorry to ramble so. I am always glad to find others in my state with this fibro so we can support one another. And the best part is that if any strong friendships develope, people can actually meet face to face wooo whoooooo!!lol Well, biggest hugs and you are in my prayers, melody(pegasis)
  10. fibrodoll

    fibrodoll New Member



    I also live in Greencastle,PA. I have been looking for others in the area that have fibro. I do not drive so wanted others close I can e-mail.

    Nice to know I'm not the only one around here.

    Bye for now, Valley.
  11. fibrodoll

    fibrodoll New Member

  12. pegasis

    pegasis New Member

    Hey Valley, is this the same person that emailed me? Hope so, just curious lol. I can be such a ditz!!!! Melody (pegasis)
  13. Spoonerpaws

    Spoonerpaws New Member

    I have FM and CFS and live near Pittsburgh, PA
  14. pegasis

    pegasis New Member

    We seem to run into a lot of people from that area. I wonder if you could get a support group started? There really is alot of people there with it. It is a little to far for me to drive but if we turn out to be freinds, I guess we could always meet in the middle!!!! Well, goto pegasis and you can get my email. I am not sure if I can post it on here or not. Hope to hear from you soon!!! Melody (pegasis)