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Old 07-04-2007, 09:09 PM   #1
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New Here, my doc thinks I am nuts!

Hi, I am new here and have questions. I have been in pain since I was 17 after I had my first daughter, I am now 24. I have been to physical therapy, masage therapy, chiropractor, the works. I got tired of my doctor looking at me like I was nuts, so I changed. I recieved even worse care at my new doc's. So I went back to the first one. Since last December I have been to a neurologist for headaches and numbness they thought it was ms, after an MRI and various other tests they said there is nothing wrong with me. My pain is not at a constant level, it goes up and down, it also is in multiple places; mostly from my hips to my head, although knees and ankles do sometimes hurt too. I have tried to talk to my doc about it, and she gave me zoloft for depression and anxiety then told me I am fine and I needed to quit drug seeking. I have never asked for drugs, just answers. I guess I made the mistake of telling her that my mother in law gave me some of her pain meds so I could sleep. That was after 4 days of sever headaches and no sleep. When I go to see her she goes on autopilot the minute she sees me. I am tired of whining to her, I am just so tired of feeling so bad all the time. I am a full-time honor roll student, work part-time, and have 3 kids under 6. Sorry to whine here too. I do not want to make her feel incompetant, but I would like her to refer me to someone that knows what they are doing and actually cares. Any advice would be helpful.

 
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Old 07-05-2007, 12:51 PM   #2
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Re: New Here, my doc thinks I am nuts!

Hi,

Sorry for your frustration........I know how you feel. I was very frustrated trying to figure out what was wrong w/ me and I did a lot of research before I actually saw a Dr. because I ran into other situations where they didn't believe me. Anyway, when I was 99% sure my symptoms pointed to Fibro, I took all of my research, printed it out and brought it to my General M.D. I told him I didn't want him to say anything until I was done. I've known him for 10 years so I felt comfortable saying that. He fully agreed w/ me and gave me the "tender point" test right there and then. He also did blood work to rule out MS, Thyroid, etc problems. He also wanted me to go see a Rheumatologist to 2nd the motion. That way we both felt confident in his diagnosis. I'm now working w/ a Rheumy and he's great. Not that I have much progress w/ my pain and fatigue (I don't like harsh drugs) but I feel like someone is there for me.

If you feel in your heart that you may have Fibro, then YOU tell the doctor that. You be in charge. Tell them that you want to have certain blood work done to rule out other things. Tell them you want to have the "tender point" test and that you would like to see a Rheumy. You may be able to go straight to one if you don't need a referral. Good luck and keep us informed.

 
Old 07-05-2007, 05:12 PM   #3
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Re: New Here, my doc thinks I am nuts!

Quote:
Originally Posted by AliciaH1983 View Post
Hi, I am new here and have questions. I have been in pain since I was 17 after I had my first daughter, I am now 24. I have been to physical therapy, masage therapy, chiropractor, the works. I got tired of my doctor looking at me like I was nuts, so I changed. I recieved even worse care at my new doc's. So I went back to the first one. Since last December I have been to a neurologist for headaches and numbness they thought it was ms, after an MRI and various other tests they said there is nothing wrong with me. My pain is not at a constant level, it goes up and down, it also is in multiple places; mostly from my hips to my head, although knees and ankles do sometimes hurt too. I have tried to talk to my doc about it, and she gave me zoloft for depression and anxiety then told me I am fine and I needed to quit drug seeking. I have never asked for drugs, just answers. I guess I made the mistake of telling her that my mother in law gave me some of her pain meds so I could sleep. That was after 4 days of sever headaches and no sleep. When I go to see her she goes on autopilot the minute she sees me. I am tired of whining to her, I am just so tired of feeling so bad all the time. I am a full-time honor roll student, work part-time, and have 3 kids under 6. Sorry to whine here too. I do not want to make her feel incompetant, but I would like her to refer me to someone that knows what they are doing and actually cares. Any advice would be helpful.
I JUST WANT TO LET YOU KNOW I FEEL FOR YOU. AND IF ANYONE TELLS YOU ITS IN YOUR HEAD THEY ARE ACTUALY RIGHT. THAT IS THE CENTER OF YOUR PAIN CENTER AT THE STEM OF YOUR BRAIN.. IN FIBRO PATIENTS THESE PAIN SENSORS IF YOU WILL KEEP FIREING. IF YOU ARE HAVING HEAD ACHES YOU MIGHT WANT TO ASK YOUR NEUROLOGIST IF YOU CAN TRY TOPAMAX THIS IS KNOWN TO HELP WITH HA'S AND FIBRO PAIN,..!!

 
Old 07-05-2007, 10:31 PM   #4
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Re: New Here, my doc thinks I am nuts!

I hate to sound dumb, but how common is it in younger people? I am only 24, my doctor is making me feel like a hypocondriac (sp). My pain is real, yet she really seems to think I am making it up. Within the last 2 months I have fallen down the stairs at my school 4 times from either weakness or dizziness. I just don't know what is causing all my problems and fix it. How long did you all have symptoms before diagnosis?

Last edited by AliciaH1983; 07-05-2007 at 10:33 PM.

 
Old 07-06-2007, 05:17 PM   #5
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Re: New Here, my doc thinks I am nuts!

Well Ive had symptoms since I was 21, Im 30 now, they say I have 10 trigger points you need 11 to be declared with it, apparently Im borderline, well tommorow or the next day that next point could hurt who knows, so Ive been dealing for years, I just in the last few months started leaning towards fibro, but my healthcare wont come right on out and say thats it, I dont think they honestly believe its real, who knows. It can go on for years before you are actually diagnosed.

 
Old 07-07-2007, 09:31 AM   #6
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Re: New Here, my doc thinks I am nuts!

Hi Alicia:

It is so nice to meet you. I hope you will find some answers soon!

Personally, I believe it is time for you to take command of this situation. The physician you are currently seeing is not interested in finding answers since she thinks she already understands you (NOT!). You will find many people on this board have been through the same awful time trying to find out what is wrong, and I really understand your frustration.

Have you been to a rheumatologist? That might be a good start for you. What area of Washington do you live in? I have a referral source for FMS physicians, if you are interested.

A couple of good books to read: "From Fatigued to Fantastic" by Teitlebaum, and "What Your Doctor May Not Tell You About Fibromyalgia" by St. Amand. You might be able to relate to some of the material in either of these books so that you can make progress.

Another suggestion is to really study up on FMS, Lyme's Disease, CFS, other chronic conditions. Try to educate yourself so that you can begin to take charge of your health. At the current pace you are going, you will only waste time.

Things are not hopeless. You have a lot left in you to get the right doctor who is willing to be a co-partner with you. Keep searching! I believe in you!

Blessings,
Kirstee

 
Old 07-07-2007, 10:14 AM   #7
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Re: New Here, my doc thinks I am nuts!

Alicia,

Get a new doc. You appear to have one who believes that your pain is a psychiatric phenom or something that you claim to have for the sake of attention. Docs who are prejudiced in that manner are unlikely to change their minds any time in the near future.

Network around your community to find folks w/ fibro who ARE happy with their docs & with their progress. There may be a fibro support group, a great place to start.

Traditional medicine, at present, has a fairly poor success rate with fibro. Some of the allopathic meds help a certain segment of fibro sufferers, but there can be side effects as well as med poop-out (when a med stops working).

Some of us have been much more successful working with alternative approaches. However, this is an individual decision. I have to agree with Kirstee, learn all you can. Read widely.

Best wishes.

 
Old 07-07-2007, 10:44 AM   #8
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Re: New Here, my doc thinks I am nuts!

I receive most of my care from a pain management doctor and after 2 1/2 years, most of my myofascial trigger points are gone. (I am not referring to tender points.)

For fibromyalgia, I see my rheumy every 3 months, but there isn't much to be done but live with the flares. I am not in pain all the time. Only when the weather changes or when I overdo it. I take flexeril to help me sleep and percocet when i flare or have myofascial pain.

I highly recommend the book "Fibromyalgia and Chronic Myofascial Pain, A Survival Manual" by Devin Starlanyl. I honestly do not know what i would have done without it at onset of FMS/CMP. I thought i was losing my mind. I still refer to the book often.

I am blessed with good doctors. Keep trying till you find quality care; there are some great docs out there. I read that rheumatologists see more fibromyalgia patients than those with rheumatoid arthritis. And I have read multiple stats on how many people in the U.S. have fibro and have heard anywhere between 2 million and 6 million! I imagine a lot of people don't even know what they have and/or can't afford healthcare.

I hope you find relief soon. Please keep us posted.

 
Old 07-10-2007, 09:09 AM   #9
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Re: New Here, my doc thinks I am nuts!

Quote:
Originally Posted by kirstee View Post
Hi Alicia:

It is so nice to meet you. I hope you will find some answers soon!
Hi Kirstee - I have been told by my GP that he thinks I have Fibro and just has me taking Elavil at bedtime. I have been trying to find a doctor and in reading the posts I noticed you stated you have a referral source for FMS. I am looking for someone in the Connecticut or Massachusetts area. Any chance you can help me out! I also feel like my doc thinks I am nuts everytime I call him back.

Thanks
Cheryl

Last edited by HBMod07; 07-14-2007 at 06:12 PM. Reason: Please only quote the portion of the message you are responding to and not the entire message

 
Old 07-14-2007, 10:30 AM   #10
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Re: New Here, my doc thinks I am nuts!

Quote:
Originally Posted by AliciaH1983 View Post
I hate to sound dumb, but how common is it in younger people?
Alicia, have your had your blood levels checked? Sometimes young women become anemic from blood loss,(you know what I mean), and that can lead to muscle pain, dizziness, and fatigue. Have your iron levels, hemogolbin, and B12 levels checked for sure. I hope things get better for you soon.

Last edited by HBMod07; 07-14-2007 at 06:13 PM. Reason: Please only quote the portion of the message you are responding to and not the entire message

 
Old 07-15-2007, 11:53 AM   #11
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Re: New Here, my doc thinks I am nuts!

Quote:
Originally Posted by AliciaH1983 View Post
I hate to sound dumb, but how common is it in younger people? I am only 24, my doctor is making me feel like a hypocondriac (sp). My pain is real, yet she really seems to think I am making it up. Within the last 2 months I have fallen down the stairs at my school 4 times from either weakness or dizziness. I just don't know what is causing all my problems and fix it. How long did you all have symptoms before diagnosis?

I was diagnosed at the age of 14 with FM...Now I am 22, but to be on the safe side my doctors spent two years and tons of blood and other tests to rule everything out like lupus. I've had back pain since I was born but the FM kicked in at 14...I started by talking to my GP, who then sent me to a Pain Specialist who diagnosed me and put me on medications to see if that would help and then sent me to a rheumy who proceeded to diagnosed me with FM and put me on medications and took the trial and error part of it to see what works, she then sent me to a neurologist to find out what he could do for the migraines, and from there I've been sent to specialist after specialist who tell me that there is nothing that can be done at this time. After that I was sent to doctors that I call "quacks" who put me on herbs, and send me to acupuncture, or physical rehab and water rehab. After I turned 18 all the medical bills were over $20,000.00 a year on top of insurance costs and I lost my insurance which stopped all my treatment and medications. I've spent the last four years fighting to get on disability, but Oregon doesn't consider me disabled because of my age and the fact that I am not blind or paralyzed. Where some people I know who are in there forties apply and get accepted and they don't even have 1/3 of my pain or problems. Which makes no sense to me. So my parents work hard to help me get what little treatment that they can afford and foot all the bills. If I didn't have my parents and family I don't know what I would have done.
It's a fight but a fight I refuse to lose.

I don't know if this will help you but like everybody else you need to see a rheumy or a pain specialist...It's in your best interest where your current doctor is thinking of only his/her best interest. Tell them to refer you to a different doctor and have that doctor give you the Pressure Point test. That should be enough to at the very least get the ball rolling...and getting you some help. Also look for some kind of support system maybe a group meeting who can give you their personal experiences and tell you what doctors might be willing to just listen to your story.
Good Luck and God Bless.

 
Old 07-22-2007, 07:00 PM   #12
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Re: New Here, my doc thinks I am nuts!

To Alicia:

Responding to your thread: "Hi Kirstee - I have been told by my GP that he thinks I have Fibro and just has me taking Elavil at bedtime. I have been trying to find a doctor and in reading the posts I noticed you stated you have a referral source for FMS."

Here are two physicians in Massachusetts (none in Connecticut are listed):

Barry Elson, MD
Northamptom, MA 01060

Jeanne Hubbuch, MD
Newton, MA 02161

Blessings,
Kirstee

 
Old 07-22-2007, 11:49 PM   #13
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Re: New Here, my doc thinks I am nuts!

Hi, I am also new here. I had my baby 8 months ago. I had minor aches before his birth when I was younger, but his birth triggered ull blown fibro. Rhumatologists is more understanding than normal docs, because they work with this condition. Amitriptyline takes 6 weeks to work and you feel very groggy the first two weeks. That is the reason I stopped taking it and just taking my strong painkillers, but your body get used to the narcotics. I decided I am going to give Amitriptyline another try, but until it starts to work I shall still take painkillers. Good Luck! (Topamax side-effects was very bad for me, it made me so tired that I could not look after my baby.)

 
Old 07-22-2007, 11:52 PM   #14
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Re: New Here, my doc thinks I am nuts!

By the way, Elavil is the same as Amitriptyline! Also have your thyroid checked, mine was underactive after his birth and they gave me Eltroxin, because it can make your fibro even worse!

Last edited by zelda77; 07-22-2007 at 11:54 PM.

 
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