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Suzboop
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/19/2010 11:57 AM (GMT -7)   
Hi All,
 
I'm new here but have been lurking for about a week.
 
I am 51 years old and married but have 2 furbabies (a black cat named Gypsy Rose Lee and and a tabby named Atticus Finch) instead of kids.  I work for an IT recruiting firm as a payroll specialist and am lucky that I don't have to sit or stand all day and can move arond when I need to.
 
My sister was also diagnosed about 6 months before I was.
 
I was diagnosed with Fibro in February of 2009.  After having my ovaries and scar tissue removed in July of 2008, I developed a reaction, had a high fever and my incisions were inflamed.  None of the cultures came back as infected but while in the hospital, I developed this horrible pain that radiated from my pelvic area down the front of my thighs.
After that, I had the pain all the time and incredible fatigue.  I went to a Rheum on November of that year and he was reluctant to diagnose fibro because he said that I needed to have at least 6 months of constant pain.
 
Well, I did have that pain and more.  Since I have a lifelong panic disorder with agoraphobia and am already on Lexapro and Klonipin, the doctor and I decided together that we shouldn't upset the delicate balance that I've found for my panic by changing to Cymbalta.  He also told me, at that time, that Lyrica only works in about a third of the patients and that it causes weight gain.  No thanks! 
 
He gave me a prescription for 800 mg Ibuprofin, which frankly did nothing.  I would have been better off taking an M&M.  He then started giving me hydrocodone, 5 mg, 10 per month.  I saved them for when I was really bad and most months didn't even use the whole 10.  This was from April through November.  When I called for a refill in November to get a refill, they told me that he wanted to see me before he would prescribe them again.   Well, in addition to all of this pain, my husband has been unemployed for about  a year and a half so I am the sole breadwinner and money is VERY tight (we came close to losing our home this last year).  so I borrowed the $40.00 for my co-pay froma  friend and went over there.  I was in his office for all of 5 minutes and he told me that he wouldn't precribe the hydrocodone for me anymore because it doesn't help (has he ever had fibro pain before?)  So I paid this guy $40 in order to have him tell me that basically, he wouldn't treat me.
 
I the went to my primary, whose MIL has firbro, so she gets it.  She prescribed 2 hydrocodone a day as well at 4 mg of Zanaflex at bedtime.  This was working great for me, although by this time, I was pretty much having to take them every day but my prescription lasted me almost 2 full months.  I saw her again in January and found out that she was pregnant (couldn't tell by looking at her, she was so small)  So we made plans for an appt on April 15th to get set for her maternity leave.  Well, turns out, she went on early maternity leave and the doctor taking her palce - would not prescribe, again.  They asked me if I would be willing to be evaluated by another Rheum and I said yet.  I went to this doctor whoe was about 15 years old.  She told me that fibro was mostly psychological!  Then she handed me a prescrition for Savella and told me that they are a no-narcotic practice. 
 
I went home and called my psychiatrist regarding the Savella and he told me that in no way was I to take that med with the Lexarpo!  It would have been nice is the doctor who prescribed it had checked that out beforehand.  It's a good thing I'm cautious!  So that was another $40 down the drain.  I then went to see the doctor who is taking my primary's place while she is out($20).  He referred me to another Rheum, without giving me anything for my pain.  They set up an appt for me for May 12th.  At that point, this was about a montha and a half away.
 
So that Friday, I was in so much pain and didn't know where to turn, since my so-called new primary wasn't helping me at all.   I made the HUGE mistake of going to the ER.  I then got yelled at by the ER doctor, who made a predermination of me based on the medication I'm on (she said I was on too much).  She told me that I shouldn't be wasting ER time on something that was chronic and already diagnosed and that I should have called my physician.  I told her that I had and that he wouldn't help me.  She was thoroughly disgusted with me and made me feel like a disgusting junkie.  Then she went and called the practice and kind of sang a different tune.  She said that my real primary care had a few patients on narcotics and that NONE of her patients had been getting anything so the practice left them hanging.  They also told her that the practice did not want to work with anyone who had chronic pain.  Nice doctors, huh?  So, I was amde to feel like less than a human being and that cost me $75.00 for that day.
 
I have no idea what to do.  I have an appt with a potential new primary on April 30th and then the new Rheum on May 12th.  Who knows if either of them will help me. 
 
I am in so much pain and fatigue it's ridiculous and the only thing that helps me is the hydrocodone.  Does this make me a bad person or something?  I never even could swallow a pill until I was 28 years old, I NEVER took anything, not even aspirin.  I had to start taking the antidepressants then because I was unable to leave the house.  When I've had surgery befroe, I've been given vicodin but ended up taking Ibuprofin after the first couple of days.  But NOW I need it - so what the heck do I do?
 
On top of everything else, my poor husband was in a major car accident on March 4th.  He broke his neck and luckily, he has no paralysis but has been told that he is extremely lucky and a rare case because most people with his injury either are quadrapalegic or die immediately.  So it's been a long few weeks of hospitals, rehab and little sleep for me, while all this other stuff is going on.  I need the strength to take care of my husband, go to work everyday and live a life!
 
I live north of Boston, does anyone know of any good doctors around here?  I am so tired of going from one to the other, without getting the help I need.  I also do not want to be accused of Doctor shopping.  but frankly, if you go to a doctor and you don't like them or they won't help you, what are you supposed to do?  I just don't want to throw another anti-depressant into my mix as I need to be able to function and cannot be housbound again.
 
Thanks for listening to my long rant.  As you can see, I am at my wit's end here. 
 
Suzanne

getting by
Forum Moderator


Date Joined Sep 2007
Total Posts : 40601
   Posted 4/19/2010 12:21 PM (GMT -7)   
Hi Suzanne,

Welcome to the fibromyalgia forum. I am so glad that you have joined us. It is so hard when you need help with pain and can't get it. They act like it is all in our heads. NOT!!!

I am angered by the way that you were treated. It just isn't fair. And I hope that somebody comes on that knows how to find doctors. I am sure that there is a search that you could do. You need a compassionate doctor that understands fibromyalgia.

I found that the best thing for me is to move around. The more that I move around the better I feel. But you have to get there first and you have to go at it really slow. But I wouldn't be able to do it if it wasn't for my pain meds and adderall. I take hydrocodone too, but 10 mg. I take two of them three times a day. And that works for me. But I also have the adderall for the fatigue. My psychiatrist prescribes that for me. I feel so fortunate to be able to function. There is also the malic acid/magnesium supplement that you can try. There is a thread about it on the fibro101 thread. You should check out fibro101 when you get a chance. There is a lot of helpful information on it.

I sure hope that you find a doctor and that you start to feel better. Take care, keep posting. Hugs, Karen
  Moderator-Depression and fibromyalgia
 
fibromyalgia, Chronic fatigue, depression,allergies


Suzboop
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/19/2010 12:28 PM (GMT -7)   
Thanks so much Karen. You have made me feel a lot better about my situation. I take magnesium right now but I will try the malic acid if my doctor (whoever that may be!) says it will be okay with my other meds. I really resent being made to feel like a junkie, just because I'm trying to manage my pain. It's so demeaning and I dontt really need that right now. I've already read Fibro 101 and have send the Spoon Theory to my husband and a couple of my friends. It's so great and expalins just how I feel most of the time. Thanks again!!!

Texas Ivy
New Member


Date Joined Apr 2010
Total Posts : 6
   Posted 4/19/2010 12:54 PM (GMT -7)   
I used to use everything natural and organic, herbs, homeopathics, etc. I have tried, and allopathy seems to be the way to go with this stuff. My financial circumstances have changed, as well as my energy level, and I just have to see the western medicine practioners to deal. Off to the primary, the rheum, the neuro, etc. I'm not thrilled with the primary, because I know he's out of his league dealing with FM, thank goodness for the rheumatologist and the neurologist.

I have trouble taking vicodin, so my doctor put me on darvocet. My rheumatologist put me on Ultracet, telling me to add a tylenol to the darvocet to make ultracet. That's how I deal with migraines and the days I can't even take a step out of bed in the morning. 90 mg Cymbalta and Lyrica are working, though I can't afford it, and am changing to neurontin again, and my neurologist is giving me Cymbalta samples, bless her. Always ask for samples, and get generic drugs whenever you can.

Suzanne, I wish I could wave my magic wand and have the perfect doctors and drugs appear. Alas, Wandy is on the blink as usual. Doctors here in Houston are as varied in experience as anywhere, and when, through referral or (typically) dumb luck, you find one that 'gets it' about the pain, you hang on for dear life, hoping they don't retire, die, go on maternity leave, or move to Hawaii and marry their baby-daddy (yes, that's happened to me). Sometime it takes years to put it all together,doctors, drugs and diagnoses. I'm sure a lot of the veterans here could tell you about misses in all of those things. I walked (okay, hobbled) around for three years with a diagnosis of 'probable MS.' Whaddaya gonna do. Medicine is both art and science, and there are many disorders with similar symptoms. It's hard, but keep working at it the best you can. I even went a few years without medical insurance, so I know where you're coming from.
I'm so sorry to hear about your husband, and the added stress, which I'm sure exacerbates your symptoms even further. This may be cliche, but it's so true: take one day at a time.
Blessings,
Ivy

Suzboop
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/19/2010 2:12 PM (GMT -7)   
Oh Ivy - I wish your Magic Wand was working too! I say that to my friends all the time when they are having problems. I'm just plodding along and doing the best I can. Luckily, I work for a great company and great people so that helps!

Sherrine
Forum Moderator


Date Joined Apr 2005
Total Posts : 17101
   Posted 4/19/2010 3:05 PM (GMT -7)   
Hi, Suzanne, and welcome!  I'm so sorry you are going through this.  You are and have been under tremendous stress and that most likely is why your pain is so great.  Your husband's accident must have really shot the pain up. 
 
I'm glad you are moving around.  Sitting and laying too much will make you so stiff and have more pain, so keep that up.  I use a malic acid/magnesium combo and that has helped me a lot with the pain and fatigue.  I also use Vitamin D3 for pain and fatigue.  Many with fibro are deficient in these vitamins and nutrients.
 
I take ibuprofen with food and extra strength Tylenol for pain.  I have to take 600 mg of ibuprofen every six hours around the clock and I take 1,000 mg of Tylenol in between the ibuprofen.  I only do this when I'm in a flare.  I know that pain is part of the territory with fibro so I still have pain but am in control of it.  When I'm in a good period, I can adjust these meds easily.  I do have Vicodin in the medicine cabinet as my "safety blanket" but have never taken one because I know that the pain waxes and wanes. 
 
Be sure to check out the Fibro 101 thread...the second thread on the forum.  There are links to good info about fibro, including a link all about the malic acid/magnesium supplements and how they work in your body. 
 
There is a link about teaching hospitals and finding a fibro doctor in Fibro 101.  Since you are in the Boston area, you should have good teaching hospitals there and they usually have good doctors that understand fibro.  This would be the route I would take.
 
I hope you find a good doctor soon that can help you.  I highly suggest that you do not go in and ask for hydrocodone because you will most likely be labeled a drug seeker.  Let them come up with ideas.  You can tell them what you have taken in the past and have to go from there.  There are links to a pain journal and to pain charts in Fibro 101.  Keep a daily journal and the pain charts will help you describe the pain you are having.  This, in turn, will help your doctor understand what is happening to you. 
 
I'm glad you found us and joined in.  Let us know what happens because we really do care.  I hope to hear more from  you soon.
 
Sherrine
Forum Moderator/ Fibromyalgia
***********************
Fibromyalgia, Crohn's Disease, Ostomy, Diabetes, Autoimmune Inner Ear Disease, Osteoporosis
~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~
God does not give us a spirit of fear, but of power and of love and of a sound mind.    2 Timothy 1:7


Acheybody
Forum Moderator


Date Joined Nov 2008
Total Posts : 5930
   Posted 4/19/2010 5:56 PM (GMT -7)   
mad Suzanne,
You can count me as another boiling-mad old Fibromite after reading your story.   These doctors are working for us!!  What would they do with no patients?  We are paying them and yet they look down on us and play God - well, the bad ones, that is.  
 
I've gone on and on here about my great doctor, not to make anyone else feel bad, but to show they do exist.  I was lucky to find him, an allergist who is also licensed in internal medicine.  At that time, I'd been on a quest too, because I was in a lot of pain and desperate for help....a friend told me this guy was a good diagnostician.   On my first appointment, he spent 2 hours with me, reading my records, asking questions, listening to me.  He said "It looks like a lot of people haven't been taking you seriously."  I'm surprised my jaw didn't hit the floor.  shocked  He told ME about Fibro.  He has respected me and helped me for 18 years and I hope he NEVER retires.   
 
So please take heart!  They ARE out there, and I hope you find one too.  I'm sorry for all you're having to go through, you and your husband.
 
    
Debbie
   
    Diagnosed: Fibromyalgia, Meniere's, elevated liver enzymes -?- keloid scar tissue from back burn, arthritis, scoliosis, lumbar disc damage, sciatica, IBS, migraine headaches, skin cancer twice on face
    Meds: Nortriptyline, Clonazepam, Darvocet as needed
    Multivitamins, l-lysine, probiotics, magnesium, malic acid, calcium + vit. D, vit. C
    Chiropractic adjustments
 
Be yourself.  Everyone else is already taken.


Suzboop
Regular Member


Date Joined Apr 2010
Total Posts : 72
   Posted 4/20/2010 9:16 AM (GMT -7)   

Thank you all so much for your kind responses!

I did go in and read Fibro 101 before I posted and there's some great resources there.  Thanks to you all for sharing your experiences.  Even though this whole condition is hard to deal with - it's nice to know that there is someone out there dealing with the same thing.  Even though I wish I could cure you all and me too!

I am looking forward to seeing both new doctors and hopefully, someone will be able to help me!

Hope all of you have a great day!  Suzanne

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