Let me introduce myself....

Discussion in 'Fibromyalgia Main Forum' started by Rumpsonfire, Dec 20, 2002.

  1. Rumpsonfire

    Rumpsonfire New Member

    I am so glad to have found another message board. I used to belong to another but it became a huge board of complaints. I am not presenting that there should not be any complaining, because we all know the bad days we are stuck with and sometimes its just nice to be able to crab to people who understand. I just hope that this board will be able to be as optomistic in keeping their fibromyalgia as under control as I am hoping to do.

    I was just recently diagnosed...in September,with Hypermobility Syndrome (HMS) and Fibromyalgia. And here is my story...

    Since I was young I have been very limber and clumsy. We had thought that that was all that it was until I started having more hip and knee pain during puberty. They had then thought that it was just growing pains and that they would go away. I was also diagnosed with scoliosis at the age of 9 but never had to wear a brace or undergo any surgery. I saw an orthopedic for my hip pain and other symptoms who wanted to test me for Marfans Syndrome but he ruled that out and said that I have extremely ligamentous laxity throughout my joints.

    Well, my knee pains were resolved by orthotics I still wear in my shoes. My hip pain decreased but did not completely go away. At 20 years old I began to have pain in my calf then the pain moved into my hip and lower back. I was diagnosed with Sciatica but later tests proved that diagnosis as incorrect. I underwent multiple X-rays, physical therapy sessions, an MRI, a bone scan, and I think I cleaned out the pharmacy on pain killers. I saw two physicians, a chiropractor, a massage therapist, two physical therapists, an orthopedic surgeon, and a rhemetologist. I was assumed to have a different problem by each Dr. including sciatica, dislocated sacral joint, tested for marfans syndome, and some just had no clue what was wrong but were more than happy to write me a Rx for pain killers. Well, I hate taking pain killers because I can't function on them. My new physician put me on Elavil to help with the pain since nothing else in any other categories of medications were helping. That worked really well for me but it still did not explain why I was hurting.

    Now at 21, one doctor who I finally saw diagnosed me with Hypermobility Syndrome. It made sense but I didn't really know what it was. I started looking online for information about it and I am suprised that they don't have my picture next to the description. Though looking into HMS I found Fibromyalgia and that described many of my problems as well. I brought the information to my physician and he tested me for it thought the tender points test and diagnosed me with Fibro as well. Since I was young I have been very limber and clumsy. We had thought that that was all that it was until I started having more hip and knee pain during puberty. They had then thought that it was just growing pains and that they would go away. I was also diagnosed with scoliosis at the age of 9 but never had to wear a brace or undergo any surgery. I saw an orthopedic for my hip pain and other symptoms who wanted to test me for Marfans Syndrome but he ruled that out and said that I have extremely ligamentous laxity throughout my joints.

    For the first few months I was very depressed and not doing much as far as helping myself other than continuing my battle with the Disability Company my employer works with. Once my boyfriend told me that he was tired of me being "that disabled girlfriend who isn't trying to help herself" I told myself that I had to do something. I talked to a close friend who has artritis and bursitis (only 28 y.o.) and we decided that we would both join the local YMCA and start a fitness program. I am feeling better already just knowing that I am doing all I can do to contol this condition.

    I hope that everyone can give me the support I need to keep my head high most days (my body just wouldn't allow every day to be a good day). If anyone has stories of success I would love to hear them. I am not planning on adding any more pills to my daily regimine, only natural remedies like fitness, water aerobics, yoga and pilaties.

    Thanks for your ears!!

    Amanda's Rumpsonfire

    P.S. because I know your wondering. I chose "Rumpsonfire" as my name because most of my pain is in my very lower back and in my tush. It pretty much feels like there is a little fire deep in the tissue. Anyone else have this pain??
    [This Message was Edited on 12/20/2002]
  2. sofy

    sofy New Member

    i love your last name. When my pain is bad that is my worst place. I have a red charcoal briquett on each side right where I sit so I know what you mean. You are so right you have to make your life as good as possible for yourself or else you will get sucked into a well of self pity and that is no way to live. It's no ones fault we have this problem. This board is great for information and if you need to vent a little. If you just want to lift your spirits with a little silliness etc. visit the chit chat board. Lots of irreverence over there.
  3. karen2002

    karen2002 New Member

    Well I usually get complaints that I AM a pain in the
    A*&%$$, but it isn't Fibro related, lol....
    So nice to meet you, and Welcome! We are all here to support one another, --We are here for you! Jump on in, or softly leap, depending on what type of day it is.
    Looking forward to hearing more from you! From your discription of HMS, I have a 15 yr. old son, who has similar symptoms. So far, not debilitating, but knees,and back flare, every once and a while. Keeping an eye on him, as there is a slight spine curvature, as well.

    Best wishes,
  4. garyandkim

    garyandkim New Member

    our 5 sons has FMS, our 19 year old. The others are 25 and 2 are 21 and 4. We were told growing pains and all years ago and a few years back Dxed with these and many other things.

    Yep, a possitive attitude and good sence of hummor is a must. We can't say that we have been sailing through this. We now are both disabled and home. Good news we are together and both able to raise our youngest together 24/7. We didn't find out that FMS is familar till after our youngests birth and that if one parent has it there kids have a 25% posssiblity of developing it and with both it's 50%. But, we would still have had them. I must say I felt great when pregnant.

    Theropy, I love warm water hydrotheropy and chiropractic manipulation done by ones that know FMS. I also get steriod shots in the worst spasumming are's every 3-4 months and I get between 6 and 8 at a time. They didn't work for more then a short time at first and now for about 3 months. Yoga and Tie Chi are supose to be good classes to take.

    Everyone is so different and what works for one person or many may not for others. Do a lot of research and if your doc is interested bring him the motherload and site addresses. The top post on each page is for a guide that is so great to give out to everyone. They are free and you can get 99 at one time. I leave them in every docs office I see and Pharmacies and people places and family.

    Family, co-workers and friends support and education is what you want to achive. The guides are a good start.

    There are remission states that can last days, months and yes, even years. Take care of you and don't push yourself to hard. Flairs are normal but, over doing can bring them on like getting hit by a Mac truck.

    There is a great doctors referal on the home page here to you have to click on it it's on the right side and then click on Doctor referal. Many of the docs also have web sites full of great info and research. I started with the first listing and went on down. Most of the Docs are specialists in FMS and or CFS. We found our doc there and boy, has he been a life saver to us. This board also has a great lib. The search feature above is great but, I don't always spell well so it doesn't work well for me.

    Good luck to you and keep up those spirits, but, somedays it's hard and that's okay to. Welcome to what we think is the greatest board around. Kim and Gary
  5. teach6

    teach6 New Member

    I wanted to join the welcome party. Also want to let you know that when we want to let our hair down and have some fun you will find us over on the Chit Chat board, not to be confused with chat. It's a message board like this one, but you can talk about anything you want there. Here you need to stick to the CFS, FM and related issues.

  6. Reg1

    Reg1 New Member

    Hi Amanda Rumpsonfire, cute user name. Welcome aboard, as i am not new to the board, just new to posting. I also, as you tried another site when i was dx in Oct. 2001, I found those people to be very annoying and rude most of the time. So i did a search, and here i am. I love this support group. So much info to digest, as well as feeling loved and appreciated. I have a long horribble story to tell as well, just haven't gotten the energy yet to share, but believe me you guys will read it soon. Everyone supports in some kinda way. I'm glad i'm here, as i think you will be too. (((GENTLE HUGS))) Reg1
  7. I love your name!!! I was wondering, I have pain in my sacroiliiac joint also. What did you do for it , if I may ask?? I hope you enjoy this site.
  8. klutzo

    klutzo New Member

    I also have the matched set of brickets on both sides. I just had x-rays done last week since the brickets have been getting larger since I started using a treadmill.
    I have found that putting a sheet of plywood under my mattress helps it some, and sitting with an ice pack also helps.
    I also have hypermobility, and am clumsy, hence my user name. You have my sympathy.
  9. jolly

    jolly New Member

    Welcome to the board and yes, we have a ball on the chitchat board. Very positive place. Your butt pain would probably be helped by getting rid of the trigger points. I had bad lower back pain and it got rid of it completely - gone and never came back. Put a tennis ball in a long sock and roll your butt with it against a wall. If this hurts terribly, you're hitting the trigger points. They're little knots that get in your muscles and restrict the lymph and blood flood and entrap nerves and they can be gotten rid of. There's a book by Clair Davies called "The Trigger Point Therapy Workbook" that explains the whole thing, has diagrams, how to do it, what causes it, etc. It's cheap, too. Everybody that has followed the instructions has gotten pain relief. It's painful to do, but the reward is unbelievable. Glad you've joined us and see you around. Jo Ellen
  10. Annette2

    Annette2 New Member

    Welcome to the Board! I am much older than you, but I found out I had FMS 5 years ago because I had severe pains in my hips! I think it's wonderful you have a positive attitude. I try to remain positive, though I do have my "bad" days like everyone else. I have found that exercise helps a lot. I try to walk on the treadmill as much as I can to stretch my hip muscles. I can't walk very far or very long, but I do what I can. I also do mild stretching exercises. I can symptathize with the pain in your lower back and tush - that burning feeling. I get it too. I guess the stretching might help that too. I also take Ultracet when I'm feeling really bad - it's a combination of Tylenol and Ultram. That seems to help.

    Well, I hope you feel better and have a wonderful holiday!

  11. ephemera

    ephemera New Member

    Dear Amanda's Rumpsonfire,

    Hello. I, too, have benign hypermobility syndrome & fibro. Don't let anyone tell you that benign means it doesn't hurt like wildfire. We may not die of it, but it sure is life altering!

    Therapy in very warm water has helped me. Be careful not to use the cold water pools used by swimmers. If you're in the USA the Arthritis Foundation in your area may be able to give you a list of pools used for arthritis classses, where the water may be be exactly warm enough, but it is within a few degrees to be close enough.

    There's quite a few sites for hypermobility in North America UK & Europe & Australia. Do a google search & you'll find them along with Ehlers Danlos.

    Best thoughts.
  12. Rumpsonfire

    Rumpsonfire New Member

    Thanks everyone for all of your responses. I am trying to keep up with them all. It is nice to hear that I am not the only one who has those days where it feels like I am being branded like a horse on my rear. I am going to try to respond to all of your questions but I don't have all the names. Sorry if I miss one...I am sure I will get to it at one point or another.

    -Asked about what I did about my sacral joint problems? I go once a month to a chiropractor and he just readjusts me. One of my legs is also shorter than the other by about a half inch so its hard to keep it all aligned. I have tried a heal lift but it didn't help. I also tried physical therapy twice and they tried to fix it and build up the muscles around the sacrum but that was when they didn't know I have FM so many of the streches irritated those trigger points in the lower back.

    -Mentioned something about the trigger points being my "flamable spots" I acutally knew that I had some major tender points is what they called them and my chiropractor would just try to push on them to release the chemicals in my body that were making them so tight. *shrugs* Now I just have my boyfriend massage around them to try to take some of the edge off so they don't hurt so bad then I ice them up. I actually do do the tennis ball idea you had but thanks for the input. If you think of anything else let me know!

    Uht oh....mind went blank. I can't think of the other questions. I will read the responses again and get back to you....

    Amanda Rumpsonfire's head is in the clouds