Hi, I am new here (long post)

Discussion in 'Fibromyalgia Main Forum' started by poodlegirl, Sep 26, 2002.

  1. poodlegirl

    poodlegirl New Member

    Hi, I am new here. I really don't know where to begin. I have not been diagnosed with CFS, but I truly believe that is what I have. I have seen many different Dr.s and had several diagnosis'. I can't really get the Dr.s to look at more than just a few of my symptoms. I have been diagnosed by one Dr. with FM, then another Dr. (both Rheumatologists) said no but instead diagnosed me with a genetic disease called Familial Mediterranean Fever. Then about 4 months ago, I was diagnosed with a pseudo tumor cerebri. I am really very tired of Dr.s and really tired of hurting. I am 30 years old and experience exhausting fatigue, bone, muscle and joint pain, depression, anxiety, general feeling of unwellness, sore lymph glands, mental confusion and feeling of being in a brain fog alot. It gets harder and harder to do my job (dog groomer), but very few people in my life truly understand the extent of my pain and agony. I have been feeling "bad" for nearly 6 years, and here in the last year or 2 it has really been prevelant. This year alone has been excruciating and I just keep wondering, how much longer can I possibly trudge on. The more I do at work, the more exhausted I am. I can never get rested up. I have slept on my off days sometimes up to 18 hours and it does not seem to help. Please anyone who shares this email me, I really really need some support!
  2. poodlegirl

    poodlegirl New Member

    Hi, I am new here. I really don't know where to begin. I have not been diagnosed with CFS, but I truly believe that is what I have. I have seen many different Dr.s and had several diagnosis'. I can't really get the Dr.s to look at more than just a few of my symptoms. I have been diagnosed by one Dr. with FM, then another Dr. (both Rheumatologists) said no but instead diagnosed me with a genetic disease called Familial Mediterranean Fever. Then about 4 months ago, I was diagnosed with a pseudo tumor cerebri. I am really very tired of Dr.s and really tired of hurting. I am 30 years old and experience exhausting fatigue, bone, muscle and joint pain, depression, anxiety, general feeling of unwellness, sore lymph glands, mental confusion and feeling of being in a brain fog alot. It gets harder and harder to do my job (dog groomer), but very few people in my life truly understand the extent of my pain and agony. I have been feeling "bad" for nearly 6 years, and here in the last year or 2 it has really been prevelant. This year alone has been excruciating and I just keep wondering, how much longer can I possibly trudge on. The more I do at work, the more exhausted I am. I can never get rested up. I have slept on my off days sometimes up to 18 hours and it does not seem to help. Please anyone who shares this email me, I really really need some support!
  3. Kathryn

    Kathryn New Member

    Hi Poodlegirl,
    You have come to the right place. There is a wealth of knowledge on this list. I am well aware of how demanding your job is because I used to raise and show miniature schnauzers and did all my own grooming. I now own the scroungiest schnauzer in Oregon. He gets sort of groomed on the days when I feel up to it, and it usually takes me the best part of a week to do one dog. At one time I had up to 8 in show coats, and 5 - 6 that I clippered. In addition, my puppies were either stripped or clipped depending on whether they were going to a show or pet home.
    If I were you, I would go back to the doctor who diagnosed you with pseudo tumor cerebri and ask him to fill out the papers for SSDI. There were two ladies who rode my bus regularly when I was still working with that diagnosis, and they both were accepted right away. I talked at some length with both, and if that is your actual problem, I don't envy you. They were in misery!!! Once you are accepted for SSDI you can work part time, on days you feel up to it, up to their $$ limits to supplement your income.
    You might also check for a support group in your area. You need to make some new friends who are sympathetic to your condition. In the meantime, you have a tremendous group of new friends here.
    Best of luck to you,
    Kathryn
  4. timmissyh

    timmissyh New Member

    Hi...just wanted to say that I am new to this board also and that I can relate to what all you are going thru. My heart goes out to you and know the road that you have been and are going down! I was just diagnosed with FMS and CFS. I have been told that my pain was anything - from pulled muscles, female problems and from the ones who can't figure out what IS wrong say that it is all in my head, I need a shrink! Yea, right! I just tell them that "no, my pain is in my lower back, hips, joints, legs,....but not in my head!"

    I am blessed with my job! I am an independant contractor and can work the hours as I am able, plus my boss has a friend with lupus, so he completely understands the situation.

    It's hard now even tho I know what I have. I am trying to accept this disease and the fact that there is no cure. You just have to manage the best you can and pray for better treatments. All this pain, suffering, depression and weakness now has a name to it, but no cure, no fix-me-up, nothing! Just a name basically!

    You hang in there and remember that others are here for you!

    MANY HUGS
    Missyh
  5. poodlegirl

    poodlegirl New Member

    Hi, Thanks for the encouraging words to my first post here. I am just glad to find some open ears and open minds out here. If possible I would like to tell a little about my symptoms and let you all resond with some of your own experiences. I cannot honestly put a date on when I started feeling bad. It may have been after a car wreck in which I broke nothing, but had months of physical therapy for soft tissue damage (cartilage and muscle damage). I have not felt "normal" since. But I guess when I really started "going downhill" was a couple of years ago when I stopped smoking. It seems like I fell apart. I might as well have been addicted to heroine. It was the hardest thing I have ever done. I started to have panic attacks and bouts of depression, mood swings, general pain. But it has been a gradual decline. I cannot recall feeling good and then just waking up and feeling bad. It kind of crept in. I went to Dr after Dr. I did have a low grade fever, fatigue and a high SED rate which got me tested for lupus and RA. My mom has Lupus and RA is quite prevalent in my family. I have been diagnosed with the Familial Mediterranean Fever, but truly believe it is Chronic fatigue. I have every symptom that is on the list and have done quite a bit of self diagnosis. I really have a problem with Drs. I can't seem to tell them "hey, I thing I have XYZ disease". Should I be afraid to self diagnose? Do I have a right to tell the Dr I think I have such and such? More later...
  6. Kathryn

    Kathryn New Member

    Maybe you should consider starting to smoke again. I believe the side effects are far less harmful than some of the drugs our doctors prescribe. Not too many years ago the Cornell School of Medicine published a study proving that tobacco smokers are actually immune to 23 different types of cancer. I would probably have been institutionalized years ago if I quit. It is one of the few things I am now able to do to relax. I read, but have trouble retaining the plot even for the length of time it takes me to finish a book. By all means suggest to your doctor what your thoughts are on your ailment. Doctors are human too, and none of them are experts in every area, or even with every affliction within their area of specialty. Take some documentation with you to your next appointment and point out the symptoms that you have. If you do not have something written, it is too easy to overlook something that might be of great importance in helping your doctor make his decision. My doctors have been saying fibrositis/fibromyalgia since 1989, but I just happened to stumble across a list of symptoms last spring and realized that it was describing me. I go to a rheumatologist next Wednesday for my "official" diagnosis. My next challenge is convincing my pcp that it is a result of several traffic accidents I had while I was working. He is finally beginning to listen to me after I threw a few hissy fits in his examination room. Most doctors are able to learn, it just takes time and a lot of effort on their patients' part. Try to keep your chin up and find SOMETHING to laugh about every day. I know there will be days when just the effort required to keep on living seems like more than you can handle, but you absolutely must find some way to cheer yourself up. Now go pour a couple cups of epsom salts in your bathtub and fill it with water just as hot as you can stand it and soak until it cools off. Light a couple candles and put them next to a mirror, turn the light off, and see if you don't feel better when you get out.
    Kathryn
  7. Annette2

    Annette2 New Member

    I'm sorry you're feeling so bad. I know there is no cure for FMS, but you can take steps to feel better. You can begin by doing very light exercising. I find walking very helpful. It stretches my muscles and makes me feel better. Or you can exercise in a pool. Some Y's have Arthritis Water exercises. If that's too difficult, consider going to a Pain Specialist who can help you with physical therapy. I also find sitting in a hot bath and/or whirlpool really helps. Try to be positive. I know it's hard, but it's important to try. Don't give up!!!! On your good days you'll feel great, and when you do have a flare you'll know it's only temporary and you're doing all you can to help yourself!

    Annette2
  8. Thella

    Thella New Member

    I am really new to this board but not to the diseases. Had fibro for over 40 and CFS for over 20.
    It does not go away but there are many things you can do to lessen their impact.
    Learn that on a good day you do not have to go out and run a marathon. Maybe clean the bathroom instead of the entire house.
    Or just go and have some fun time.
    You didn't say if you were married so I will assume you are. Get your husband to help with the household jobs. That way it is not all on your shoulders.
    If you aren't then let some of the fiddly jobs go. They will still be there for you to do tomorrow.
    Leave pamphlets out for others to see what you are dealing with.
    Come here for answers when you are stumped. Even if the answers are not available it helps greatly to talk to someone who understands you.
    take care and do not give up on the good life. It is attainable.
    Thella
  9. griswoldgirl

    griswoldgirl New Member

    I would love to talk with you via email cathysinger@hotmail.com please email me and i promise to email you back. Being jerked around with doctors is hard I went through years with no diagnosis andnow ihave more diagnosises than I care to have LOL

    hang in there and please email me or I will write more when I can

    in friendship

    cathy
  10. poodlegirl

    poodlegirl New Member

    Sometimes I would love to have a cigarette! It is odd how I really started feeling bad AFTER the smoking ended! My husband (who also quit) and I use to joke about how we quit and fell apart! He has gotten over his withdrawals but mine have hung around. He does not crave them anymore, but I do! I have another appointment with the Neurologist next week to discuss the pseudo tumor. It has subsided, the eye Dr has already released me and said there is a big improvement in my field of vision and the swelling in the optic nerves are gone down. Now to face the Neurologist. I was suppsoed to have lost 20 lbs but have only been able to lose 10. I was on the Depo Provera B.C. shot for over 2 years and I contribute alot of my problems including the excess weight and the psuedo tumor. I am not longer on the shot and have been off for 1 year. Just recently I have started menstruating again. I am staying away form all forms of hormonal B.C. Depo really did a number on me! I have been unable to tell the difference in what has been caused by the psuedo tumor, depo shot and what is either CFS or FMS (Familial Mediterranean Fever or syndrome). The symptoms seems to overlap and intertwine and has really confused the heck out of me.
    So after the Neurologist appoint I am going to resume visits with rheumotologist. There was just no way I was able to keep up 3 different Dr. appointments, procedures, meds, etc. I am going to go in with a list of symptoms and make everyone listen. I have had Drs before listen to the first 3 symptoms and shut everything else out.
    Kathryn, the kennel where I groom (I do not own) breeds and raises Schnauzers. I have 3 poodles, a Rottie, and a new edition, a Schnauzer! I finally have one! I love him. He is about 8 years old. He was one of the first pups that my boss produced and his owners could no longer keep him (they moved) and so I started bringing him home and fell in love. I already loved the breed, working with them daily, but did not think I had the room for another dog! I have 4 here at home to groom (no hand stripping though), plus my neighbors yorkie, my uncle's poodle and my mother in laws poodle. Plus 4 days a week grooming 10-14 dogs/day. I think I might be over doing it! But it is what people expect because I have always before been able to do it. I have this trendous fear that I would be letting people down if I am not able to do things. I can have a busy stressful day at work and I feel like I have been hit by a mack truck. It takes about 2 1/2 to 3 days to get over it. Is that a symptoms of CFS?
  11. toniad

    toniad New Member

    I am Tonia D., relatively new here. This is a very warm place to share and get support. Everyone here knows how it feels to hurt all the time and have little or no support in the world. Most of us too have been thru the doctor-go-round you described. I am in that category myself.

    I am your age too, 29, 30 on 12/26. I tell my friends/family I hurt, I'm tired, I'm so depressed, and I get a variety of non-chalant responses. oh, I'm sorry, is mostly what they say. I try not to get mad at them, because how could they know the detriment of my DD? They can't, unles they have it too, that's why I come here. I know they know here. I get much comfort knowing I am among many people who know and care how I really feel inside.

    Good luck with your treatment and finding a suitable diagnosis. The fog is just part of it, you're not crazy. You are sick! And, you are NOT alone in it. We are here for you.

    Well wishes,
    Tonia D.
  12. poodlegirl

    poodlegirl New Member

    Boy, thank you all for such a warm welcome. Everyones responses have just brought tears to my eyes as I read them, thinking what a relief to finally be among people who knows exactly what I mean when I say "exhaused" or "mental confusion". I get the same old responses from people, like you do too Tonia, who says "oh, get some rest and you'll be fine." Well, I gave up long ago on that promise! I kept waiting, going to bed in pain, hoping to wake up ok and wake up feeling worse. I can't explain to people don't touch me to hard, it hurts. I have been patted on the back and it would feel like someone knocked a hole thru me or once my brother playfully pinched my knee and it made me cry. Of course, he did not mean to hurt me or even thought he did. But people does not understand the extent of pain because they cannot comprehend how it could possible hurt to be touched on the arm or shoulder or what have you. I have been accused of being a "wussy", and that I needed to "toughen up". I would never say to a diabetic or parapalegic "toughen up you wussy"... I guess too, I have gotten angry. I mean, How can this happen to me? It is not fair. I am a good girl, no drugs, no bad lifestyle..LOL! Duh, It is not a punishment! I just see others my own age enjoying physical activity and think why not me. I have battled depression and anxiety. It always looms in the background, though. A lady I know said, "well, I guess I would be depressed if I let everything get me down". SLAP! I could have slapped her into next week. I don't "LET" depression happen. It happens with or without a reason and certainly with or without my permission! I do take 100 mg of Zoloft daily. But it does sneak up on me every now and then.
  13. poodlegirl

    poodlegirl New Member

    Thella,
    Boy you have been battling it for a long time! What do you do for treatment of the diseases? I am sure Drs did not even know what FM was when you started feeling it. Some Drs don't want to believe it is real even now.
    I am married. He is a wonderful husband. We have been married for 10 years. Just had our 10th anniversary Aug 22. Of course the pain and depression along with the meds stop alot of "marital fun :)". Sometimes it is hard on the relationship. I would like to say he understands completely, but I really truly don't think he's 100% there yet. It is hard for people even my closest people to see it, because it does not show up on an xray or test. Everybody was extremely worried about me when I had the pseudo tumor, because there was documention on paper, xrays, spinal tap results. There was proof that I had it. With the assumed CFS and FM and depression, people have a harder time swallowing it. I do hide things very well. It is easier sometimes to hide the pain than not to be believed.
    But yes all in all my hubby is great. He asked me what the most romantic, special moment of all ours years together was and I smiled and said "the time when I was sick and throwing up and had that terrible "spinal tap headache" 2 days after the actual tap, and you put that suppository up to keep me from throwing up because I was too weak to do it". He was thinking I was going to tell him something lovey dovey and all romantic. Then I explained to him that that has to be real true love for someone to do that for another person and to take care of them to that extent.
    As far as working when I feel like, it is nearly impossible. Financially, I need to work. We could not pay our bills on my husbands salary alone. I also sculpt dogs from clay and sell them on ebay for extra $$ and groom at home some. I really do have to many irons in the fire.
    Shellie