Finally! A diagnosis!

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Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/20/2009 10:20 AM (GMT -7)   
I saw my PCP doctor this morning and after a long while of talking and her pushing on me in different places, she officially diagnosed me with Fibromyalgia! She prescribed Neurontin 300mg, once a day, then titrating up to 3x a day. She also gave me Lortab for BT pain. I was very pleased with how she listened to me and didn't act like she had someplace to go! I just wanted to let you guys know how it went.

Have a good day!

Tammy
No diagnosis yet!

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Still in the process of being diagnosed! Wish me luck!


Tammy


Screaming Eagle
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Date Joined Sep 2009
Total Posts : 5005
   Posted 11/20/2009 11:05 AM (GMT -7)   
Mommy! sorry to hear that Fibro was diagnosed. Let us all know how the med works for you though. Take care and have a great weekend.

Michael

Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/20/2009 12:16 PM (GMT -7)   
I've been in pain for so long, I'm almost glad to have the diagnosis! At least now my doctor will treat me instead of just the various symptoms. I know it seems that I'm happy that I have fibro, but I'm not. It's just good to have someone who will listen and treat me for this!
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy


uniquelyme
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Date Joined Nov 2008
Total Posts : 1037
   Posted 11/20/2009 1:21 PM (GMT -7)   
 
 
Hello Jadensmommy,
I am glad you finally got a DX but all I know about Fibro is that it was once considered a "Catch-all" for Dr.'s that had no idea what was wrong with their patients...I don't think it's like that now, but that's all I know...I also know that it is more widespread then ever... so sorry to hear that you have it, but now you can continue with this knowledge and try new drugs and hopefully they will come up with something great in the near future...
 
Just remember, that just a few short years ago they had no idea what it was...Jump ahead to now and things are so much better...Jump ahead to 5 years from now and who knows?  They may have a cure....
 
Good Luck and pain free days and nights for all here...
 
Me.

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


bsjaguar
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Date Joined Jun 2009
Total Posts : 974
   Posted 11/20/2009 1:22 PM (GMT -7)   
Will your PCP continue to give you the lortabs for long term use? Many PCP's won't give narcotics other than for acute issues. I think lortabs are a narcotic, let me know if I'm wrong. If not, you may need to start looking for a PM doctor in the future. Just a heads up.

Glad to hear you finally got a diagnosis, knowing something is better than the unknown.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


uniquelyme
Veteran Member


Date Joined Nov 2008
Total Posts : 1037
   Posted 11/20/2009 1:22 PM (GMT -7)   
 
 
Jadensmommy,
 I hope that doesn't mean that you will be leaving us for the Fibro forum...We would miss you...
 
Me. shakehead

I have been a spectator for so long..Now it's time to participate.......
 
Post Lamenectomy Syndrome, Spinal Stenosis, DDD....
1999 Hemi Lamenectomy/2005 Spinal Fusion(L4-S1)
Methadone 120 mg. a day/  30 mg. Oxycodone as needed(up to 4 x a day)
High Blood Pressure: Lisinopril HCTZ 10 mg. daily
Type 2 Diabetes: (March 16, 2009)
Metformin HCL ER 1000 mg. at night..Glipizide 10mg. 2X in the morning
Lantus 35 units at bedtime with Solostar Pen                                                                   

 


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/20/2009 1:46 PM (GMT -7)   
Tammy,
I agree it is a relief to get a diagnosis and at least you and your doctors have something to work with! And although we have a fibro forum on HW, many members (including some of our moderators!) post on both forums, so I hope you won't leave us, too! At least not completely!

I take neurontin - 400mg, 4X/day. I don't know how it will be for you, but for me I had to work my way up slowly. My neurologist initially had me starting at 300mg/day for 3 days, then doubling that for 3 days, and then 300mg/3X a day within a week. No way did that work out for me! There can be some initial side effects of the neurontin for some, but many will smooth out over time. If my cousin, who's a pharmacist, hadn't helped me out I would have been out of it from the neurontin! I actually had to ask my doctor for the 100 mg tablets for awhile, and I went up that slowly. So I just want you to know you have lots of choices on how to start on that med, and don't be suprised if you have some tiredness and a few other side effects. I also got some blurry vision, but it went away after a few weeks. If it turns out your doctor is moving you up too much too fast, just ask if you can ease into the dose more.

That being said, although I know neurontin has taken some edge off my mental clarity, I also know if I'm late on a dose becaues the numbness and tingling in my feet just screams at me!

I hope this doesn't scare you - not meant to - just to let you know you have options on how to ease into the neurontin. And it can be a very helpful medication!

Let us know how it goes!

Hugs,

PaLady

Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/20/2009 5:58 PM (GMT -7)   
Good evening everyone! I won't be leaving this forum just because I have a fibro dx, I'll just post both places! LOL I've found several friends on this forum and don't want to just up and leave! I appreciate all the concern for my health guys, I really do. I don't really have much support here at home and coming here to talk with all of you really helps me make it through my day.

Yes, Lortab is a narcotic. I talked to my doctor about this today. She said she would give me my original script and see me again in 6 weeks. Then she will check my pain journal again to see if the neurontin is helping, along with the Lortab and then she will refer me to the PM doctor. I've already told her which PM doctor I want to go to, and she agreed that it was a good choice on my part. He is part of the same network of doctors that my PCP belongs to, so she knows him well and trusts him.

PALady, thank you so much for the info on the Neurontin! Now at least I know what to expect from it, if I get the same side effects you did. It won't take me by surprise if I feel tired alot at first. I really do appreciate the heads up! If it gets too bad, I can just call the doctor and I'm sure she'll make some modifications to the titration if need be.

Again, thank you so much for all of your kind words and concern! I'm so glad to have found my HW family!

Tammy
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy


privey
Regular Member


Date Joined Oct 2009
Total Posts : 453
   Posted 11/20/2009 10:18 PM (GMT -7)   
J'smomma,
I'm glad that you found out what you are dealing with, I don't work well in the dark and at least with it out there you know how to fight. That being said...I'm sorry you have to deal with fibro and hope everything they are doing will help. Take care I care.

straydog
Forum Moderator


Date Joined Feb 2003
Total Posts : 13466
   Posted 11/20/2009 11:16 PM (GMT -7)   
Tammy, yes it is a good feeling when we finally do get a dx, sounds strange I know but so true. The unknown can drive a person jusy nuts. Your dr sounds like a winner and a keeper. Yes you are right about the Lortab, they are the same as Vicodin, just a different mfg is all. Lets hope the neurotin kicks in and helps with the pain. Take care.


[color=blue>

<FONT>crohns disease dx 2002 & small bowel resection, still looking for remission whatever that is, chronic pain 22 yrs, added ulcerative colitis 6-05 to the mix, high blood pressure 28 yrs, aortic heart valve insuffiency, depression, osteoarthritis, osteoporosis lumbar spine, scoliosis lumbar spine, peripheral neuropathy hands & feet, COPD & on oxygen therapy, lupus & psoriasis and psoratic arthritis. Several other health issues just not enough room to list it all. Too many surgeries to list and too many medications to list. Currently on 17 different daily medications. Intrathecal pain pump implanted June 05.


Chutz
Veteran Member


Date Joined Jan 2005
Total Posts : 9090
   Posted 11/20/2009 11:22 PM (GMT -7)   
Tammy,

I has to be such a relief to at least know what you are fighting. Now with a great doc you can work on how to life your life with quality and dignity.

Keep us posted!
Chutz
The three grand essentials of happiness are: something to do, someone to love, and something to hope for. — Alexander Chalmers

(\o/)Co-Moderator Fibromyalgia & Chronic Pain Forums
(/|\)
Fibromyalgia, PTSD, UC, Diabetic on insulin, collapsed disk, arthritis scattered around and a few other delights.


punchfit
Regular Member


Date Joined Nov 2009
Total Posts : 89
   Posted 11/21/2009 4:12 AM (GMT -7)   
Hi Jadensmommy,

Like to introduce myself and say hello.
Im sorry to hear of your diagnosis.
Its so great to hear that you have a suppportive network of Drs and specialists.
Are the nacotic meds helping with pain, and how long have you been taking them.
Have you been able to identify the reasons for your back, & neck pain and ribcage pain, or is this attributed to Fibro?
I have been taking bureonorphin for 10 days which is a narcotic, and have had no pain relief success.
I visit my Dr Tuesday to discuss whats next, probally a higher does.
It comes in a form of a Patch, not a pill.
Hope your PM is effective.

Cheers from Down Under- Australaia
Punchfit x

Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/21/2009 5:07 AM (GMT -7)   
punchfit,

It's nice to meet you! Hello to you as well!

My doctor says that the pain in my back/shoulders/neck are attributed to the Fibro. It's all in the muscles and has been very painful. I've only been taking the narcotic meds (Lortab) since I was diagnosed yesterday. It seemed to help a bit last night When I was trying to get to sleep, but I kept waking up every couple of hours for no reason. The med seems to make me more awake. I've taken this med in the past but didn't know it was the same one. I knew that Vicodin kept me awake, and now that I know Lortab is the same thing (thank you straydog for that info) I will be more careful to not take it close to bedtime.



Thanks for all your replies! Have a great day!

Tammy
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy


punchfit
Regular Member


Date Joined Nov 2009
Total Posts : 89
   Posted 11/21/2009 7:06 AM (GMT -7)   
Hi Tammy,

How is Fibro diagnosed?
Is there a specialized test?
As i seem to have the similar symptoms of Fibro.
My Dr seems to attribute everything to DDD, Osteoarthritis,Scoloisis.
I see my Dr on Tuesday , as i have severe neck & shoulder pain and ribcage pain.
A friend said it could be Bone Spurs, which can only be diagnosed via x-ray.
Hope all goes well with your meds, good to hear you getting a little relief.

Cheers
Leisa x

Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/21/2009 10:32 AM (GMT -7)   
Apparently there is no specific test to diagnose Fibro. What I did was print out a pain journal (you can find a link to one on the Fibro 101 thread) and filled it out for the 2 weeks before my appt. I had to give a number 1-10 for how severe the pain was, where it was located, what I was doing when the pain started, what meds I took for it, and how many hours I had slept that night. I also made a list of my symptoms, as well as a list of ways the pain affected my life. It helps the doctor to know what you can no longer do because of the pain. So after she read through all that, she did the tender point test on me. She just pressed on various parts of my body and asked if it hurt. Some places did, some didn't. Then she said that since I had just had a full blood work done 3 weeks ago, she didn't need to do one again. Basically after ruling out everything else, and that I was tender to the touch in those Fibro points, she diagnosed me with Fibro.

You said that your doctor attributes everything to DDD and such. Does you back only hurt in the middle, on the spine? Or are you having muscle pain on the sides? There's no way that muscle pain can be attributed to diseases of the spine! Is your neck pain and shoulder pain on the bone, or the muscles? If it's the muscles, I would specifically tell your doctor that. If he still says it's the DDD and other things, ask him how that's possible. I would keep asking questions until you get some answers.

I took the Neurontin for the first time last night, and it made me VERY sleepy. I hope that I can build some sort of tolerance to it since I will have to start taking it during the day in a couple of weeks. I haven't noticed any difference in the pain yet, but I'm sure it will take more than one dose to take effect.

You may want to ask your doctor for an x-ray to rule out bone spurs and that may be what's causing your problems. If it's not, then at least you know! Diagnosing Fibro, from what I've gathered, is basically ruling out all other things, because if it's not those other things, it must be Fibro! That's what I've been told anyway.

I wish you luck in finding out what's going on with you! Thanks for your response to my thread! If you want to talk more, my email addy is on my profile.

Tammy
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/21/2009 10:37 AM (GMT -7)   
Tammy,
Yes, the neurontin will make you sleepy until your body adjusts some. Remember what I said - it comes in 100mg capsules, too. My neurologist told me they were too weak to do anything but I insisted and I still have a small handful of them in a bottle and every now and then use one when my dosing gets screwed up and I don't want to take another 400mg. It actually took me a few years to work up to what I take now, which is considered a moderate dose (1600mg/day). I started my 300mg at bedtime and that really helped with sleep, but as soon as I started taking them during the day, wow, I had trouble. So also watch it if you're driving or anything until you get used to it.

PaLady

Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/21/2009 10:47 AM (GMT -7)   
That's what I'm worried about PAlady, I have a 2 year old here at home that I'm responsible for all day while my DH works. It won't work for me to be really sleepy during the day. So I may have to talk to my doctor about going slower than she has originally prescribed. I'm supposed to take 300mg at night for 7 days, then 600mgs (1 pill twice daily) for 7 days, the 900mgs (1 pill 3x daily) from then on until I see her again in 6 weeks. That seems too quick to me, but I'll have to see how it goes. Thanks again for the heads up on this!

Tammy
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy <3


Chartreux
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Date Joined Aug 2006
Total Posts : 9622
   Posted 11/22/2009 7:55 PM (GMT -7)   
Tammy,
makes sure that when you get to the 900 mg a day that it's on a day you don't have to do a lot,
or go out, that way if it makes you sleepy your at home...just a thought...I have a lot of
medicine reactions so I start new meds on a Saturday that way I can stay home and rest
on Sunday should I react to a medicine..
But it sounds like you have a good team of doctors and that you should be able to work with them
on getting the right pain meds for you...
Keep us posted and lots of soft hugz to you...
((((((((((((((((((((((((((((((((((((((((((((Tammy)))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))))
**********************************************
* Asthma, Allergies, Osteoarthritis, Spinal Stenosis, Degenative Disc (Lower Lumbar S1-L3 and Cervical C5,C6, C8 and T1), Fibromyalgia, Gerd,
Enlarged Pituitary Gland, Sjogren's, Ocular Migraines, mild carpel tunnel, ect.... "Would be nice if we could use the edit button in real life"...

********>^..^<********>^..^<********>^..^<********


FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 11/22/2009 8:51 PM (GMT -7)   

Jadensmommy

So sorry to read you have Fibro. But like you said you thought that was it was and finally have a name for it.  I have had it now for 10 yrs and still have not accepted it yet.  It is complicated bizarre condition to have to live with. 

It sounds like you have a good doctor.  It takes a while to find the right meds for the different symtoms you have then guess what the symptom change a bit.  Like I said weird things.

Lately with this current flare I have been experiencing more fatigue and dizziness than before.

I hope you many painfree days ahead of you and esp to enjoy with your child.

Gentle Hugs

Rhonda


Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/23/2009 5:20 AM (GMT -7)   
Jaden, I too take Neurontin, have been for nearly a year now. I took 600mg two times a day for along time but just started taking 600mg 3 times a day recently. Hopefully the sleepiness will pass after your body gets adjusted to them but my only problem that never went away was my thought process. When talking I have a very difficult time coming up with words I want to say or a persons name. I can see the word in my head or the persons face but for the life of me I can't get it out of my mouth. Sometimes I will lose my train of thought in the middle of a conversation and can't remember what we were talking about. This is irritating but the neurontin helps so much with the muscle spasms in my cervical area that I will continue taking it. I guess all our meds have their downfalls.

I do tend to differ on whether muscle spasms can be caused from spine issues. When the spine is not working properly due to herniation, bulging disc, facet syndrom or other problems, this can cause the surrounding muscles to work harder to keep everything in place. I do have alot of issues with muscle spasms in my entire back from my ddd and arthritis of the spine. Maybe I'm wrong though.

Sounds like you & your doctor are on the right track. Good Luck!!!
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/23/2009 11:33 AM (GMT -7)   
Jag,
I have the similar side effects which I think are mostly from the neurontin. I know I'm just not mentally as sharp as I once was. I can be from time to time, in spurts, but not consistently. That's something I grieve, but like you I find the neurontin very helpful and needed.

PaLady

FunnyGurl
Regular Member


Date Joined Nov 2009
Total Posts : 173
   Posted 11/23/2009 12:12 PM (GMT -7)   
Yes PaLady and Jag
Tried Neurontin two different times at very high doses to get any relief for pain like 1200 mg plus but the side effects were horrible nausea and like you said had a hard time speaking, on the tip of my toungue could not spit it out.
Too much.  Tried Lyrica for 6 weeks blurry vision would not go away.  Do you take that?
Rhonda
Humour is always the Best Medicine!
 
Fibromyalgia, DDD, 2 herniated Lumbar discs, OsteoArthritis Lumbar, Migraine, Dysthmic Disorder, Anxiey, Panic Attacks, OsteoArthritis Knee, Carpal Tunnel both hands, Currently Double Depression


bsjaguar
Veteran Member


Date Joined Jun 2009
Total Posts : 974
   Posted 11/23/2009 1:39 PM (GMT -7)   
Tried Lyrica but it caused such vivid scary nightmares that even my husband wanted me off it.
---Jag---
 
DDD, osteoarthritis, fusion surgeries C-5/7 & L-4/5 both in 2006, torn meniscus left knee 2000 & 2002, buldging disc L-2/3


Jadensmommy
Regular Member


Date Joined Nov 2009
Total Posts : 104
   Posted 11/23/2009 3:25 PM (GMT -7)   
The only thing I take right now for the Fibro is Neurontin. My doctor and I talked about Lyrica and also Cybalta. I really like the anti depressant that I'm on right now so the doc and I agreed that Cymbalta probably isn't for me just yet. If the Neurontin doesn't work, I think she'll put me on Lyrica, then from there Cymbalta if the Lyrica doesn't work. We'll see I guess. I'm still really nervous that when I start taking the Neurontin during the day, I won't be able to take care of my son. My husband works every day but Friday, so I think I'll start the morning dose on a Friday. That way, if something happens, my husband will be here to take care of our son.
Fibromyalgia Dx November 20, 2009

Pain issues: Pain in neck and upper/lower back, chest/ribcage pain, Degenerative joint disease in both knees, migraine headaches, very painful menstrual cramping, pelvic pain.

Meds: Neurontin 300mg. Lortab 5/500 PRN for BT pain.


Tammy <3


PAlady
Veteran Member


Date Joined Nov 2007
Total Posts : 6795
   Posted 11/23/2009 10:43 PM (GMT -7)   
Tammy,
That's a good idea. I always started increased doses right before the weekend, too. That way I could just stay home and get used to it a bit.

It's a drug you've got to be patient with, IMHO - at least that's been my experience. But nonetheless it does help my symtoms significantly.

PaLady
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