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Old 06-13-2007, 10:08 PM   #1
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bekkee HB User
Unhappy i don't know where to start...

hello all...

i am new here. i am 26, diagnosed w/ fibro 3 yrs ago. i have many questions and concerns! i don't even know where to begin. due to my fibro i am unable to work, drive, or live alone. i am normally a 7 on the pain scale, except when i flare, then i am way past a ten...


[LIST][*]constant sypmtoms:
  • mysofascial/tender point pain. my worst point is my knees. when i flare, i cannot bend my knees w/o horrible pain.
  • flu-like ache all over
  • sleep issues- i have been diagnosed with non-recouperative sleep. and intermittant insomia. I "sleep" roughly 0-3 hours a day, not continuously. I have days where I stay up for 2 days straight.
  • fatigue
  • IBS-when my IBS flares, i cannot keep food done/in for up to a week...
  • dizzines- my dizziness is NOT vertigo, it is a symptom of my fibro, caused by the amount of pain I am in, tied to my low blood pressure
  • flares- i flare every 8-14 days, the flares last 7-10 days.
  • weakened immune system
  • fibro fog- 2-3 times a week
  • Raynauds syndrome
  • Vasovagal Syncope
  • stiffness in all joints-greater in mornings
  • Migraines- up until this last december, I would have a debilitating migraine 5 out of 7 days a week, I started taking Topomax, and my migraines have greatly decreased. I now only have migraines once a month or so.

Intermittant symptoms
  • paresthesia
  • sensitivity to lights, sounds, smells (dysosmia)
  • vision issues
  • jaw clenching
  • painful menstruation
  • skin irritation (mostly on hands)
Medications I am currently on...
  • Neurontin 3600mg
  • Prevastatin 40mg
  • Nuva Ring
  • Folic Acid 1mg
  • Topomax 175mg
  • Ultracet 50mg
  • Rozerem 8mg
  • Fiorinal prn
  • Excedrin Migraine
  • Ibuprofin (about 800mg a day)
I apoligize for the way that I am throwing all of this info out here, I am flaring right now, and fogging, I hope you all understand. I am just trying to not miss anything.

These are my concerns/questions...

1. Does anyone else deal w/ these sympotms? Have any hints?

2. My insurance covers some of my rx, but my family is starting to drowned! My rx alone cost $220+ a month! We cannot continue on like this. I do not know if I should be seeking govt help? My doctors are no help in this arena...

3. I just moved to a new city, my insurance does not reach this area, so I have to drive back down to Miami (about 3 hours) to see my old doctors. It is a mess! I don't know if I should switch insurance (which will most likely be more $ now that I have a "condition"...) Plus, now I live in BFE! So what would be the point?

4. My doctors that I see primarily (my PCP and my Neuro) refuse to give me anything stronger for pain than the Ultracet/Ultram 50mg! And even then they only give me 15 pills a month! They are afraid to give me anything stronger (even though they know and see how much pain I am in) because of my age, they do not want me getting addicted or building up a resistance at such a young age. BUT I am in PAIN!!! I need better medication!!

5. I am currently researching Guaifenesin Protocol. I am reading the book by Dr. St. Amand. There is a Fibro support group near me that promotes this protocol. Does anyone know about this???


Ok, of course I am not here just to talk about me, I am here to make friends and share info w/ all of you too! I again apoligize, I'm just having a rough day today!

Hope everyone is doing well, and I look forward to meeting you.

 
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Old 06-14-2007, 06:32 AM   #2
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tweiler HB User
Re: i don't know where to start...

I can sympathize with some of your symptoms and all. I have recently started having problems with irritation on my hands. I can't use the soap at WalMart anymore in the bathrooms because my hands now turn bright red and get scaly and itchy all over. Have the same thing happen a few other places. So for that, I found a liquid soap I use at home and I got a small bottle and carry my own soap. People look at me weird when I take out my own soap but it's better than looking like I put my hands into boiling water.

For my IBS, I carry Immodium AD with me. I have diarrhea more often than constipation. I know stress will trigger mine so I make sure I keep a bottle with me. I get the generic at WalMart and it's just as good but cheaper than name brand. Another good thing is the pill is small so I can swallow it with just saliva if I have to.

I get 9 Maxalt a month for my migraines. I also had Midrin A but now there is a back order on it and the pharmacy has no idea when they will be able to get it again. So my dr wants me to just use Excedrin Migraine and see if it stops the migraines before having to use the Maxalt. But I still use all the Maxalt every month. My PCP won't give me anything as a sub for the Midrin unless its Ultram but it causes migraines (allergic) so no help there. So now I suffer because I save the Maxalt for when I can't stand the pain anymore from the migraine.

I also have endometriosis so I am on depo shots because I don't have periods on the shot so all is good there. I Still get pain when I would have had my period but it is bearable now.

I'm always stiff in the morning and when I went to PT she showed me a bunch of stretches so I do them 1st thing to loosen up. Everyday household stuff increases my cramps and tension so I have learned to let things slide and not be so picky about how clean my house is.

 
Old 06-14-2007, 09:13 AM   #3
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Re: i don't know where to start...

Hi ...have you posted on the Lyme Board? I know that Fibro and Lyme have just about the same exact symptoms. You talk about your knees...oh my gosh that was HORRID for me also. I felt like I had mice in them knawing away ....ahhhhh....I was diagnoised Fibro/Cfs...and a zillion of other things...

I have been doing alot of reading on the net and there are WAY TO MANY Lyme cases that are being mis-diagnosed by incompetent doctors....Because the test are NOT accurate...Doctors HAVE to go on symptoms...They always told me to live with it...Guess I am too stubborn to go by what they were telling me..I am also seeing a Fibro doctor that is donig Dr. Charles Stratton's protocol for Fibro. We all have the chylamidia pneumonia bacteria which MAJORITY of doctors do not feel this does any harm. Well it is just about like the Lyme Bacteria. I came down with Lyme 20 or more years ago. Went to too many doctos to count.

Please look at the symptoms for Lyme...you sound just like me. I had co-infections that were not caught by the testing either.

I wish you luck!


 
Old 06-14-2007, 11:16 PM   #4
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bekkee HB User
Post Re: i don't know where to start...

Quote:
Originally Posted by jojo View Post
Hi ...have you posted on the Lyme Board? I know that Fibro and Lyme have just about the same exact symptoms. You talk about your knees...oh my gosh that was HORRID for me also. I felt like I had mice in them knawing away ....ahhhhh....I was diagnoised Fibro/Cfs...and a zillion of other things...

I have been doing alot of reading on the net and there are WAY TO MANY Lyme cases that are being mis-diagnosed by incompetent doctors....Because the test are NOT accurate...Doctors HAVE to go on symptoms...They always told me to live with it...Guess I am too stubborn to go by what they were telling me..I am also seeing a Fibro doctor that is donig Dr. Charles Stratton's protocol for Fibro. We all have the chylamidia pneumonia bacteria which MAJORITY of doctors do not feel this does any harm. Well it is just about like the Lyme Bacteria. I came down with Lyme 20 or more years ago. Went to too many doctos to count.

Please look at the symptoms for Lyme...you sound just like me. I had co-infections that were not caught by the testing either.

I wish you luck!

Regarding the lymes- my aunt has lymes, unfortunately my family has been very familiar w/ it for 15 years b/c of her. I have been testead for it twice, negative both times. We and my doctors are convinced that it is Fibro. I have seen everyone from an allergist to a rheumatologist to an endocrinologist, to of course the pcp and neuro that i see regularly. I am very knowledgable about fibro. As w/ any fibro patient, you are basically forced to become your own doctor, so as soon as I was dx'd I began educating myself. I could write a book @ this point. But we are sure that it is not lymes. Thanks for the idea though!

 
Old 06-14-2007, 11:26 PM   #5
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bekkee HB User
Re: i don't know where to start...

Quote:
Originally Posted by tweiler View Post
I can sympathize with some of your symptoms and all. I have recently started having problems with irritation on my hands. I can't use the soap at WalMart anymore in the bathrooms because my hands now turn bright red and get scaly and itchy all over. Have the same thing happen a few other places. So for that, I found a liquid soap I use at home and I got a small bottle and carry my own soap. People look at me weird when I take out my own soap but it's better than looking like I put my hands into boiling water.

For my IBS, I carry Immodium AD with me. I have diarrhea more often than constipation. I know stress will trigger mine so I make sure I keep a bottle with me. I get the generic at WalMart and it's just as good but cheaper than name brand. Another good thing is the pill is small so I can swallow it with just saliva if I have to.

I get 9 Maxalt a month for my migraines. I also had Midrin A but now there is a back order on it and the pharmacy has no idea when they will be able to get it again. So my dr wants me to just use Excedrin Migraine and see if it stops the migraines before having to use the Maxalt. But I still use all the Maxalt every month. My PCP won't give me anything as a sub for the Midrin unless its Ultram but it causes migraines (allergic) so no help there. So now I suffer because I save the Maxalt for when I can't stand the pain anymore from the migraine.

I also have endometriosis so I am on depo shots because I don't have periods on the shot so all is good there. I Still get pain when I would have had my period but it is bearable now.

I'm always stiff in the morning and when I went to PT she showed me a bunch of stretches so I do them 1st thing to loosen up. Everyday household stuff increases my cramps and tension so I have learned to let things slide and not be so picky about how clean my house is.

I know what you mean about the soap! I have to be careful about what I use to wash clothes in etc. I have found that the safest thing to use on the laundry is any of the detergetns that are "Free & Clear" (no fragrance). They don't irritate my skin, etc. Instead of using soaps @ public restrooms I will carry a small case of baby wipes w/ me... ya how weird is it that i'm not a mom and i cary wet wipes? lol... hey, you do what you gotta do... I will do any thing to avoid itching burning bumps! yuck!

I tried using maxalt for a while in 2000, I had a horrible reaction on it. I was eating excedrin migraine like candy up until december when I strated taking the topomax. I really recommend the topomax for the miagraines. Also, being that topomax is an antiepileptic (so it is an off label use drug like neurontin/gabapentin) it is used in some fibro people for pain. My neuro was hoping that he could use the topomax for me for both the migraines and to replace my neurontin (which what i take is actually gabapentin- the generic of neurontin), but my pain is too high on the scale... but hey, I will take 1 out of two. Getting rid of so many of the migraines was a gift in itself!!!

 
Old 06-15-2007, 06:03 PM   #6
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bigstan HB User
Re: i don't know where to start...

Hello Bekkee,

I am so sorry for your pain and your so young. Some help for you.There is a website out there called The Partnership for Prescription Assistance. You might have seen the Montel Williams commercials. Go there click on patients. List all your drugs one at a time. All drugs are in alphabetic order. For example for Neurotin, click on the letter N and find Neurotin within all the drugs that start with the letter N. Click select. Do this for each and every medication you take. When you are done click proceed at the bottom. Fill in all your information. When you are done hit proceed. A list of all drug company's that participate with PPARX will show. You can either go to their website or use the wizard in PPARX to apply. I usually ******** the application fill it out, have my doctor fill in his information and send it in. I have never been turned down yet. These drugs are free to you. You will be sent drugs at three month intervals for up to a year. After a year just redo your information. I and others have saved hundreds of dollars in meds.
Good luck.

Last edited by bigstan; 06-16-2007 at 11:31 PM.

 
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