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There was hope - Finally have a diagnosis!

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Posted 7/1/2011 3:15 PM (GMT 0)
Happy Canada Day!! And Happy Friday to all of those who aren't Canadian,

I made a post about a week ago regarding my frustration with a doctor I was seeing. I called back and asked for a follow-up appointment with this same doctor. The receptionist said I'd have to wait til late august to see him again, but, by some incredible stroke of luck, she noticed a cancellation for the following day (yesterday) and booked me in.

The doctor was actually really helpful! He said that both lyme disease and becehts were unlikely (because there was no sign of inflammation) but is testing for lyme anyway.

He diagnosed me with fibromayalsia and prescribed me 10m of Flexeril. I'm exciting to start the treatment but am worried about the side effects (specifically the fatigue). Does anyone have any experience with this drug? I am thinking of taking it in the evenings.

Something else... I have high levels of androgens. I had no idea what that was, but after doing some research I can't say I'm overly surprised. He's running some more tests (for cushings) but I'll have to wait a month to see the results. Does anyone know what I can do to lower my androgen levels naturally in the mean time? I'm looking into supplements and have been considering starting birth control pills.

Anyway, I'm really happy to finally have a diagnosis and some sort of treatment plan. Finally, I have some sort of direction for improving my health.

Hope everyone is happy and painfree :)
Posted 7/1/2011 3:46 PM (GMT 0)
Hi Tara and a Very Happy Canada Day to you!! I also appreciate the Happy Friday - as I'm in the States. But I've been to Canada a cpl of times, including my honeymoon. Beautiful country!!

Wow, that was luck to get the cancellation appt. Glad that this appt went well for you. My drs always ck for Lymes because I live in a Tick Paradise, and I am a tick magnet. lol I just had one on me a wk ago, about par for the course.

I was give a rx for Flexeril back in Jan. I was to take it 3x per day. I had to be sitting down or in bed when I took it, as I just got so sleepy right away. That lasted for 3 days, then the sleepy feeling passed. It helped w/ the terrible back pain I was having, but I had to stop it. It dried out my mouth and tongue so badly. My tongue was cracked and white and it stuck to the roof of my mouth. I couldn't eat, talk, swallow, etc. it was horrible. It took about a 1 1/2 wks to clear up.

So it helped w/ the pain, but the mouth thing was just toooo much.

I was happy when I got my dx, too. I have had it all my life, just dx a few yrs ago, after seeing many drs who felt I didn't have it. I believe it is much better to know what is going on and then you know what you're dealing with. I like knowing things, especially about myself.

Have you checked the Fibro 101, 2nd post top of the page. All kinds of good info there. I don't take any rx meds for the Fibro, but I do use supplements and OTC pain meds - Tylenol Arthritis and Advil PM. I generally have reactions to rx meds, so I try to avoid them if at all possible.

Anyway, Keep that happy, positive attitude. You have a dx and you have a plan. It is a beautiful day and you are among friends, it doesn't get any better than that. yeah

God bless.  Alice.

 

Post Edited (Irish Babe) : 7/1/2011 5:58:16 PM (GMT-6)

Posted 7/1/2011 5:27 PM (GMT 0)
Hi Tara,
I have a prescription for flexeril that I take on rare occasions, when I'm at my worst. It makes me far too tired to take on a regular basis, but it does help me try to sleep through some of the pain when I'm in a severe flare.

I wish you the best and hope you're feeling in tip-top shape soon! In fact, that is my wish for all of us on the board.
Posted 7/1/2011 6:00 PM (GMT 0)
I've taken an "anti-androgen" pill before for acne, I forget what it's called. It seemed to have far less side effects for me than birth control pills.

let us know how the new drug works! and what the other tests results say!
Posted 7/1/2011 8:44 PM (GMT 0)
I have been given Flexeril 10mgs. I am supposed to take 3xs a day too, but dont because it would knock me out and thats just not feasible raising small children. So I just take them once in awhile at bedtime. for the most part I stick with tramadol.
btw, when I told the dr they made me too tired with the kids, he told me to cut them in half and then they werent so bad.
Posted 7/1/2011 11:25 PM (GMT 0)
Tara, it does feel good to finally get a diagnosis, doesn't it!  How medications work is different for each of us.  Many on this forum take Tramadol for pain but it puts me to sleep immediately!  We just have to try things and see how they work for us.  I hope you get relief with this.

 

Happy Canada Day to you, too!  I have a lot of Canadian relatives in Ontario but didn't know it was Canada Day. 

 

Sherrine

Posted 7/1/2011 11:39 PM (GMT 0)
I have flexeril and it does help. But I had to stop it before I knew it was helping me.
I take 5 mg in the morning and 10 mg at night.
The 10 mg knocks me out but the 5 doesn't.
I take the 10 because my Rhmy thought it would help me sleep - nope but it does help with the pain.
It's taken me a while to find what helps.
For awhile there I felt like a real druggy. I wouldn't take what the Drs gave me. Didn't want to mix them.
My daughter is a nurse and we sat down and looked them all up and I felt better then.
Thank goodness she was able to help me or I'd still be in a lot more pain then I am. lol
I've never been one to take alot of pills but I find they really help.
Hope you find what helps you.
Posted 7/2/2011 2:42 AM (GMT 0)
tara, I'm so glad you advocated for yourself and that you finally have a diagnosis!

I've taken Flexeril quite a bit over the years. I take it at bedtime because it does make me sleepy. I had a bad pain day and took one at work - boy was that a mistake! When I take them at night I wake up feeling much less stiff/achey.
Posted 7/2/2011 4:41 AM (GMT 0)
Hi tara,

Happy Canada Day!!! I know when I was diagnosed I sighed in relief to finally have a diagnosis, it really didn't change anything except now I have a name for whats wrong with me.

I was given flexeril years ago and all I remember is I slept all the time and when I woke up I felt hungover so they are not for me, but everyone is different : )

My hubby is outside with friends celebrating Canada Day and I am inside tonight with the little ones : )

Have a wonderful long week end
Posted 7/2/2011 6:07 PM (GMT 0)
Thanks everyone! It's helpful to hear about the experiences others have had with flexeril.

I took the flexiril yesterday in the afternoon and it wiped me out, i felt like I was floating! I ended up sleeping and lazing about for most of the day. I took another dose before bed later on and slept like a baby, and woke up with minimal pain (something that hasn't happened for a while). I'm still a bit drowsy but I'm hoping that will pass.

I don't know if I can continue taking this medication. I'd rather be in pain and somewhat functional than pain-free but as dead as a zombie. Does anyone know if there's a pain medication that doesn't cause drowsiness?

I asked the doctor for meds for the fatigue because that's what really effects my day-to-day quality of life (the pain I can push through, the exhaustion I cannot). He said no such thing existed - I wonder if this is true?
Posted 7/3/2011 5:22 AM (GMT 0)
I've always heard Iron is good for fatigue. I don't think there's anything specifically for it though. Although there probably is a drug which has a side effect that would give you energy. I think this may be the case for the otc Sudafed...
Posted 7/3/2011 5:35 AM (GMT 0)
 

Hi Tara,

I would caution you against getting on birth control pills because of their side effects.  They increase the risk of breast and ovarian cancers substantially.  Is there a bio-identical hormone, herbal, or homeopathic remedy your doctor can use to regulate your hormone levels instead?  Those have far less side effects.  Also, have you been checked for adrenal abnormalities?  Sometimes adrenal issues cause high androgens.

Best wishes!

Posted 7/4/2011 3:38 AM (GMT 0)
Tara, what was the dosing given on your Flexeril? I would see if you can just take it at bedtime. I know at least two of the studies of Flexeril in fibromyalgia used once a day dosing. Maybe you can call the doctor and ask? I found that I adjusted to it and wasn't sleepy in the morning after a week or two.
Posted 7/5/2011 12:10 PM (GMT 0)
Flexeril is fine for muscle pain, spasms, strains, and muscle knots, but your fibromyalgia should be treated with lyrica or neurontin, so if you find that flexeril isn't enough, ask your doctor about trying one of those medications. I just loved reading your story, your so happy to get that diagnosis. I think I would feel the same way once I get the diagnosis of Lupus. When I got my initial diagnosis of fibromyalgia, I was exactly the opposite of how your feeling. Denial, lack of believing, anger, and I was not at all happy about it. I never had the luck some people have with medications for fibromyalgia helping me, and I never felt like my doctor was getting to the root of my problem when he diagnosed this. I can thank god now that I was right, because now I am finally starting to feel better, but it's taken a long time to reach that point.
Posted 7/5/2011 1:59 PM (GMT 0)
Hi Tara, i'm so happy you finally got diagnosed! You should go out and treat yourself, u've deserved it!
I couldnt share anything on those particular meds simply because i aint on any drugs as of yet, just the over the counter stuff we can get and than my regular doc has put me on some vitamin supplements including vitamins B and Magnesium. On the other hand i don't even know if the medication available in Europe is the same in name as the ones u get in USA. I'm also going for my first Rheumy appointment tomorrow and hope for a diagnose as well. My mothers doctor has allready said that in her profesional opinion i do suffer from Fibro but she thought it wise to get it confirmed by the Rheumy and start treatment with him.
So i hope i'll get as much out of my appointment tomorrow as you got out of yours.
I also admire the fact that you are coping so well with the news, but than i guess it depends person to person, some people might react badly out of hope that it culd still be something not as bad, and other people are just happy to get a name for their symptoms.
But good on you!!

Fiona
Posted 7/5/2011 6:35 PM (GMT 0)
Thanks everyone,

Lyme14 - My internist is checking for adrenal abnormalities (cushings) since ovarian cysts have been ruled out. From the research I've done, this could be my answer.

Cutiepie132 - I'm glad that you did not give up your search for answers and maintained persistent until you got the diagnosis you needed. I'm happy with my fibro diagnosis because I feel like I am finally on the right track, but I still feel like there's something else going on.

Femangel - Good luck with your appointment! Let us know how it goes :)

I'm cutting the Flexiril pills in half and taking them at night. The doctor said I'd have to take them everyday but I just can't bring myself to do that.



I went back to my family doctor today and asked for birth control and a different pain medication that didn't have the side effects (at least until I see my specialist again). She said that my blood pressure is high and she could not give me pain meds or the birth control. Oh well. I'll just have to wait.
Posted 7/6/2011 3:27 PM (GMT 0)
I believe in fibromyalgia, but I also believe there is more going on than meets the eye. It's a type of diagnosis a doctor uses when they don't know what is wrong with you, and certain symptoms fit. I just don't see it as getting down to the actual cause of your problems. My doctor shared his uncertainty with me, and having health issues that is devistating to your life, I wasn't able to accept it. I may have it, had the diagnosis long enough, but it sure isn't the only thing I'm suffering from. I know I have an autoimmune disease, and I know exactly what you mean when you say you feel like more is going on than just the fibromyalgia. I think that is why I was in denial for so long, because I knew that too.
Posted 7/6/2011 5:34 PM (GMT 0)
Cutiepie132 - I do believe in Fibro as well, but I think that in some cases Fibro is the easy diagnosis when doctors can't find the real underlying issue. Not to say that I don't think some people have fibro because I know they do, but I do think that in many cases there is something else going on.

Right now I think I have fibro (and so does my doctor), but I'm starting to think that my hormones are playing a bigger role in this than I previously thought. I'm happy that you remained persistent until you confirmed your suspicions. I won't settle for the fibro diagnosis either until everything else is ruled out.
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