New and need help please

Discussion in 'Fibromyalgia Main Forum' started by MomE0512, Sep 16, 2006.

  1. MomE0512

    MomE0512 New Member

    Hi everyone,
    I'm going to make this as short as possible, but I'm sure many of you have had a long difficult road, so if I go too long I'm sure you'll understand. I have been feeling like, well, ok there really isn't a word for how I've been feeling, for the last 3 years. I've been going to many, many Dr.'s trying to figure out what the problem is. I've had almost every test you can name, etc., but noting. I'm sure this all sounds familiar to you. So my husband and I began researching my symptoms, and discovered CFS. It was like something hitting me over the head. Everything but the swollen lymph nodes fit.

    Here's where I need the help...I can't seem to find a Dr who actually believes it exists. I left my appointment in tears the other day. She told me that CFS is basically in your mind. Wanted to change my antipressant to something stronger, and put me on stimulants. She also laughed at me, and told me to go run on a treadmill. Hello!! I have to go take a 6 hour nap after WALKING a mile, and you want me to run??? I'm so tired of Drs telling me it's all in my head and I need a psychiatrist.

    Please, if someone has any resources for finding a dr near me that is at least knowledgeable about CFS, could you give me the links, phone number, etc. Or, if you don't have that, at least suggestions on what type of Dr to see. I am at a complete loss as to how to proceed. I need to know if this is it so I can start to move forward with my life, because I can't keep living in the dark like this.

    If you read this far, I thank you from my heart.

    Jessie
  2. MomE0512

    MomE0512 New Member

    Thank you for your response :)

    Yeah, I guess stating where I'm from would help, lol
    I am a military wife, so I move around a lot, but right now we are in State College, Pennsylvania.

    I have been tested for thyroid, diabetes, lupus, infections, RA,and basically anything else they can determine from blood.

    My current Dr has finally referred me to a ruemetologist, who won't see me for 3 months. Which is typical around here. She refuses to refer me to a neurologist.

    I did look at that list of Dr's and, unfortunately, there aren't any near me, but there is one near my mom, so I'm going to have her look into him. My hubby is all for driving as far as needed to get this worked on.

    A friend of mine has also suggested I try her doctor who is an OD?? I have no idea what that is though.

  3. rockgor

    rockgor Well-Known Member

    Lots of nice people here who can share stories, info, jokes, recipes, etc.

    Fill out you profile so people can get to know you better and make comments more specific. See upper right-hand corner of the screen.
  4. suzetal

    suzetal New Member

    Welcome to the board.Sorry you are suffering.You will find lots of helpful information here plus helpful fellow sufferers.

    You do not say were you need to find a Doctor.What city or town are you near .? How far are you willing to travel?

    Hugs
    Sue

  5. NyroFan

    NyroFan New Member

    Jessie:

    Welcome.

    I can not say I know of any doctors, short of mine, who can help you. Also, what area you are in.

    If you can: doctor shop. I had to do that to get good care.

    I also believe there is some kind of list of doctors here, but I may be wrong about that, but i am sure someone will point you there.

    Also, if you read back posts by using the 'search' section up top, you may get some good tips.

    It is an excellent message board with caring people.
    Stick around and you will get an abundance of help and care.

    Again, welcome.

    NyroFan
  6. MomE0512

    MomE0512 New Member

    Yup, all the tests were negative. Of course every time I switch Dr's they want to do new ones. I'm gonna have permanent holes in my arms ;)

    Anyway, I am in State College, PA, USA, which, in case you are familiar with it, is where Penn State University is. The closest larger city to me is Altoona, PA

    I am confused as to why my Dr referred me to a reumetologist, since my tests for RA were negative. She didn't tell me why. It was more like, well if you insist there is something wrong, go see this guy.
  7. lptopcat

    lptopcat New Member

    I'm not from your area, either, but I can tell you my experience. I went to my family Dr. for my symptoms, she did the blood work, all negative, except thyroid, on meds for that. So, she referred to Rheumy because she thought it was FMS. Rhuemy confirmed based on tender points and history.

    I guess the reason to refer to Rheumy is FM has been "related" to arthritis.

    I hope you get some anwsers soon. I am fairly new to this board and I find the folks here are very informative, warm and friendly.

    Keep us posted.

    (((((hugs)))))

    Theresa in Michigan
  8. lptopcat

    lptopcat New Member

    bump please
  9. Cromwell

    Cromwell New Member

    Welcome to the board. This doctor just does not know what she is talking about. Both CFs and the accompanying FM hvae the symptoms you mention.

    Also many of us here have swollen glands and sore throats and aching throats and glands too.

    It is not all in your mind. Your suffering and pain are real.

    We all have gone through this doctor to doctor thing and some finally found a doctor that helped and others not so lucky.

    Yes, the exercise. D'd if you do and D'd if you don't really. I do exercise and it does hurt. Baby steps. Stretches, walking in place, staying on the flat. Treadmills I find are particularly hard for us as the pace is too steady. A stroll outdoors is better, even around the yard two or three times a day, take it slowly. Can you swim? How would that be?

    Epsom salt baths in hot water can help/ Excellent nutrition with lots of raw foods (not spinach right now)and just resting when you need to.

    Supplements help some people here. I am looking for mangonstene juice which I think has helped a few. Right now I am trying antibiotic therapy, zithromax 500mg a day three days a week for three weeks. Some here have tried anti virals. It seems that some people will respond to either of these, but not all people. Some here use Guiafesson with good results. Trigger massage is relaly helpful and you can DIY it with your DH's help. We use a cheap dollar store back roller, I just bought a neck pulley for over the door that helps, topical creams, heat or ice.

    This dd can come in flares that will be horrid for weeks then get easier. Other poor souls here are bedridden.

    However, you will find love, support, laughter in the OT posts and you are invited to just jump into any post and join in the thread. Mostly, this dd robs us of a social life and often friends so it is nice to have our friends here.

    Love Anne Cromwell
  10. foggygirl

    foggygirl New Member

    Hi Jessie,

    I went thru many docs be fore I found a good one. I live about 2 hours north of you. The doc I found is wonderful. He's just above Philadelphia and it is a pain to travel that far for me (my daughter drives me)but he has been great. His name is Dr. Steven Katz and his phone number is: 215-943-6717 and you can usually get in within a day or two. I had a real battle with my insurance company and he saved the day by going to bat for me. He's also very supportive and never once even hinted the usual "it's all in your head."

    If you want any more info about him, directions, etc. please feel free to write me here.

    Foggygirl.
  11. kimkane

    kimkane New Member

    I am so sorry you are sick. Its not fun at all. I was dx'd with FMS/CFS 8 yrs ago. I was bed ridden for 2 yrs.

    Here is what I do, it does make me feel better.
    Because the pain meds etc make our system sluggish we do not have a regular BM. So I do a colon cleanser 1 time a year.

    I eat as natural and organic that I can. I do not eat white foods, rice, bread, potatoes, pasta, milk, and so on.

    I have a juicer and I use it alot. I drink Mangosteen Juice, I walk, I take - salmon oil, coral calcium, milk thistle, and a good multi-vitamin.

    I also get Reflexology done 1 time a month. This has helped me walk almost normal now.

    I lay in a tanning bad 1 time a week, it feels so good. Protect you eyes, and use a tanning lotion made special for indoor tanning.

    I have made my bedroom into my retreat. I have 1000 thread count sheets ( very soft ) and a micro-fiber/fleece blanket, grow lavendar I put it under the flat sheet.

    I know of a web-site you should check out.
    It explains how FMS/CFS is alot like Gulf War Syndrome.
    WWW.IMMED.ORG

    So many ppl here are great. This is the first place I found when I was looking for answers. Tons of info and support.

    Good luck to you, Kim
  12. Redwillow

    Redwillow New Member

    Hi Mom

    I am glad you could join us! :) You have come to the right place and we all understand the frustrations of finding the right doctor.

    I can't help you with that part as I am in Ontario Canada. But I can tell you that the people here are wonderful and a lot of us have also been sick a long time and know how hard it is to find someone to believe us.

    If you click with your mouse on our chat names beside our posts you can read the profiles and read our personal stories. Not everyone has filled out their profile but it is a nice way to get to know each other.

    There is a lot of wonderful information here and great advice. I hope you post regularly, ask any questions that you like and also join into the fun.

    Good luck with finding a doctor. There are some good ones out there. I had to go to a rheumatologist to get diagnosed. FM or CFS isn't really an arthritis condition but a lot of people get diagnosed by a rheumy as the pain and fatigue often gets mistaken for arthritis.

    hugs Marion (Redwillow)
    [This Message was Edited on 09/16/2006]
  13. diannev

    diannev New Member

    Jessie,

    I live in northwestern PA and I have a nephew, with a wife and 3 kids who live near you, in Pleasant Gap. I've basically just been getting Rx's for the pain for the last 3 and a half years but I haven't done anything about trying to get better. At least I have a family doc who's willing to give me the pain relief.

    I'm starting to realize that I need to work on finding a good fibro doc, anywhere in PA, or western NY, so I can try to feel better instead of just drugging myself up and getting weaker every day. If you find a good doc, let me know. If I find one, I'll let you know. Whatever you do, don't let ANY of them tell you it's all in your head!! We all know better than that and they should too. That makes me furious.

    I'll be in touch..

    Dianne
  14. minkanyrose

    minkanyrose New Member

    hope some one see you and has a good doc hugs.
  15. sascha

    sascha Member

    when i got to California, and my CFIDS symptoms increased, i found a wonderful primary care physician- very sympathetic, listened to me- but she didn't know anything about CFIDS.

    i kept going to her and being sent out for tests which showed nothing at all going on. but i kept having terrible symptoms of all kinds and went to Urgent Care and back to my doctor frequently. symptoms were treated but no diagnosis made.

    i more or less diagnosed myself. i went to an alternative medical practice, was tested in all kinds of new ways, and plenty was found wrong that could account for my many and varied symptoms. and i did get a diagnosis of CFIDS.

    my primary care physician went along with everything i found out outside her office, and helped me to get disability. she was/is wonderful.

    but doctors who are unsympathetic and think CFIDS doesn't exist aren't worth spending any time with. how awful that they don't get it or take the time to find out; and insult patients in the process.

    i hope you will find good doctor. i believe there are a lot of courses you can take that will help you find relief. this Board is a great fund of information. i think it's a self-discovery process for each of us, and many many of us have found ways to help ourselves. best of luck- sascha
  16. mrstyedawg

    mrstyedawg Member

    First of all let me say that this IS NOT IN YOU HEAD OR DEPRESSION. I get so angry when I hear anyone especially doctors say this. I have been there and done that with doctors. Being told depression is my problem or there is nothing wrong with me. I have had this for 22 years and i can't remember all of the doctors that I have been to who either have not believed (which is the majority) or believed me but did not know what to do for me.

    The best advice I can give you is to go the the Fibro and Fatigue Center's website, click on find a center and see if there is one near you. I live in West Virginia and am driving 7 hours to see a doctor in Pittsburg. It has been will worth my time and money. He is running every kind of test on me that he can possible think of and is very knowledgeable about CFS. The doctors at these clinics see only CFS/Fibro patients. I feel that if this doctor cannot help me, no one can. At the very least he knows that this is a real debilitating disease and is at least trying to get me some help.

    This has been a long hard road for me to travel and there have been many times that I say I give up, I am not wasting another dime, I refuse to go to anymore doctors. But, here I am going to another one. I cannot and will not give up until I get some help for myself. Do not give up and try not to get so discouraged, but it is vital that you find a doctor that knows this is REAL!

    Good luck,
    Andrea
  17. Leaknits

    Leaknits New Member

    Hello, Jessie!

    Glad you found this board; there are whole bunches of people here who have been through what you are dealing with.

    You might try the "Good Doctor" list I believe someone else mentioned here...with this Uh Oh in mind: some of the drs there ARE good docs. Some are GREAT docs. Then there are drs who are "self-referred" to the list; that is, they put their own names on the list whether they know anything about Fibromyalgia or Myalgic Encephalomyelitis/CFS or not.
    YOU get to do the screening necessary to find out if the dr you are interviewing knows anything about these illnesses or not.

    It's a hard job, especially if you are in the middle of a bad patch with either illness or both of them.

    Anyway, I just wanted to be among those who welcome you here.
    Lea.
  18. MomE0512

    MomE0512 New Member

    Thank you everyone,
    I really appreciate your words of sympathy, empathy, and support. It is wonderful to finally have a place to go, and find people who understand, and don't think I'm nutty. Thank you also for all your suggestions. I will be looking into/trying them all.
    Jessie
  19. MomE0512

    MomE0512 New Member

    I think Dr. Katz is my mother's arthritis Dr! She lives in Bucks County, and drives down 309 to get to his office. How's that for a small world. If it's the same Dr...she sings his praises as well. He looks after her general health more than her primary physician does.
  20. bandwoman

    bandwoman New Member

    Welcome to the board. I am fairly new also. I am on my lunch break so I will make this fast. I read the Book From Fatigued to Fantastic by Jacob Teitelbaum. I am not home so I hope I have the spelling close to accurate. I found my alternative doctor by using a link from Teitelbaums's website. He listed doctors who had attended his seminars. For me it turned out to be a God send. I found a doctor a half hour away from my house and I have been seeing this dr. for over two years and have been getting better. I have FM but fatigue is one of my biggest challenges. I sure hope this helps. Good luck.

    Nancy