Struggling terribly with my Fibro

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2008 10:45 AM (GMT -7)   
Hi guys,
 
I just needed to let you know that my Fibro is a raging monster right now.  Honestly, this is harder to deal with than my lupus.  I hurt everywhere and there's nothing I can do or take to help it - much.  I just needed to vent and let my feelings out.  I went to the mall yesterday and felt so great to be out and doing normal things (post surgery).  But then my feet felt like they were on fire, my back got so sore I could hardly walk, my neck seized up and I got the dizzies.  My Fibro ruined my outing.  I had to go home much earlier than I wanted to.  This flare is a year old now.  I feel like I'm going to go crazy.  The pain never, ever goes away.  Neither does the fatigue.  I swear it's enough to make a person go loco.  I'm almost there.... One positive is that I won't have menstrual cramps and Niagra Falls to deal with every month as well. 
 
Thanks for reading.  Love you guys,
 
Ginny 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


MJLD
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Date Joined Jul 2007
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   Posted 12/11/2008 10:51 AM (GMT -7)   
I'm so sorry Ginny! I wish there was something I could do to help you!  Bless your heart!  Judy

Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2008 12:37 PM (GMT -7)   
Thank you Judy.  I wish there was somthing I could do too.  That's what's so hard about Fibro.  There isn't much that can be done to get relief. At least with Lupus, an increase in prednisone will knock it out.  SIGH.
 
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


redrose77
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Date Joined Sep 2005
Total Posts : 2573
   Posted 12/11/2008 1:28 PM (GMT -7)   
I am so sorry ginny, I wish I could do something to help. I know how hard fibro is to deal with.
Dx:fibromyalgia 2002, systematic lupus 2005- definate CNS involvement dxed late 2005, psoriasis 2006, rheumatoid arthritis 2006, PTSD 2007, multiple allergies 2005, migraine, compression fractures T11 & T12, Sjögren's, damaged periphrial nerves 2007, exema
Tx: plaquenil, Enbrel, Tramadol, Singulair, Skelaxin, Baby Asprin, Imuran, Prilosec, lasix, Evoxac, Celebrex, Darvocet when things get too bad, prednisone again, various vitamin/mineral supplements, now cellcept


Melissa D.
Regular Member


Date Joined Aug 2008
Total Posts : 342
   Posted 12/11/2008 3:40 PM (GMT -7)   
Ginny,

I know it doesn't help much, but I can certainly can sympathize with you. When my fibro flares it truly is worst than my lupus. I will be praying this flare will pass soon and you will soon be pain free!

Melissa
Lupus - 1997   Fibro - 2001    Sjorens  -  2007   Raynauds  -  2008
Plaquenil, Imuran, Prednisone, Synthroid, Topomax, Effexor, Norco, Prilsec, Xanex, Elidel, Restasis


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 12/11/2008 5:46 PM (GMT -7)   
Oh ginny, I'm so sorry. You just sound miserable and thn to not have anything that relieves the pain. I know you can't take many pain meds. I don't know what I'd do sometimes without my hyrdochodone, like today I wouldn't have been able to function to take my kids to dance if I didn't have it. I see you are on neurontin - does it help at all with the burning pain in your feet? I take neurontin for that burning pain and it doesn't take it completely away, but it does help. Hang in there and know we are here for you anytime you need to vent.
Diagnosis:  UCTD (lupus) 2006; Raynauds 2006; Sjogren's 2006; lupus symptoms began 2003; UC 2008; CFS 1991; Mono 1985
Meds:  Plaquenil 400mg; Prednisone 5-10mg; Tramadol 100mg 3-4x daily; Doxepin 25-50mg; Prevacid; Evoxac; Steriod Cream and Mouth Rinse for tongue and mouth ulcers; Hydrocodone 5/500 prn for severe pain; Artificial tears

 

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/11/2008 8:05 PM (GMT -7)   
The Neurontin does take the edge off my pain.  I"m only on 600mg every night.  I have a really hard time with the dizziness from it.  Absolutely nothing helps the feet, my neck or my lower back.  Those three areas are sooooooo bad.  I'm going to keep upping the Neurontin slowly.  It seems that it takes about 2 weeks for my body to be accustomed to it.  The dizziness goes away. 
 
Redrose and Melissa,  I agree.  My Fibro is worse than my lupus.  Way more pain and fatigue. It's a totally different beast.  I'm doing better this evening.  Mornings are the hardest time of day.
 
I hope everyone has a good evening,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


jhmom
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Date Joined Oct 2004
Total Posts : 2244
   Posted 12/13/2008 10:23 AM (GMT -7)   
oh ((((( Ginny )))))) I am so sorry to hear your Fibro is wrecking havoc on you (bad fibro)!!!!! I couldn't imagine the pain you go through from it, lupus is bad enough for me I couldn't imagine having both. You are in my thoughts and prayers.
Stacie
Trust in the Lord with all thine heart, and lean not unto thine own understanding ~ Proverbs 3:5 ~

DX: Hashimoto's, Celiac Disease, Raynaud's, Lupus and Sjogrens
RX: Imuran, Plaquenil, Methotrexate, Flexeril, Piroxicam, Levoxyl, Folic Acid, Folgard OS (B12), Vitamin D-50,000 IU, Darvocet (as needed) and magic mouthwash (for mouth sores)


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/14/2008 1:34 PM (GMT -7)   
Thank you Stacie.  You're such a good friend!  I'm doing a bit better this weekend.  I've increased my dose of neurontin and it seems to be taking the edge off.  But just the edge, lol. 
 
How are you doing these days?  Ready for Christmas?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 12/15/2008 12:37 PM (GMT -7)   
Hey (((((((((((( Ginnie ))))))))))))

Sorry I've been so absent. SO busy these days. Just wanted to send you a nice big hug!! I hope this dissapears soon. Sounds ghastly.

Hot tea for you sis!

Blessings!

In His Grip

AlwaysRosie           "We can't control the waves, but we can learn how to surf!!"

Psalms 139

Co-Moderator - Lupus Forum

UCTD, Inflammatory Arthritis, Diverticulosis, (recent dx - Sjogrens, Crohn’s 4/08)

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 12/15/2008 7:17 PM (GMT -7)   
Rosie, it's good to see you back!  Was it a "good" busy that you had? 
 
I wish this would go away too.  But it's Fibro.  It'll never go away.  This is a life-long sentence just like Lupus.  I have to find better ways to cope with the pain or I'll go nuts.  When I'm cleared to start exercising and lifting weights, I'm going for it (but still taking it slow and easy!)  I'm determined to do something positive for my body.  I'm eating so much better since the surgery.  I've been able to keep those 8 pounds off without any exercise! 
 
  
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


nurse2
Regular Member


Date Joined Jul 2005
Total Posts : 229
   Posted 2/2/2009 5:50 AM (GMT -7)   

Hi!  I read your note today and I can really relate. I'm in a fibro-flare right now and it is really bad in my neck,shoulders and hands. I never remember my hands hurting so bad.

I just found my labs from Mayo Clinic done in 2005 where I was diag. with Lupus and Sjogrens. My new rheumatologist ran all new testing so I will take them with me next week to compare them. I need something that will work for pain relief. Any suggestions?


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 2/2/2009 9:48 AM (GMT -7)   
Hi Nurse2,
 
I have the answer!! Neurontin (Gabapentin).  I've been on it for 3 months now and my Fibro is really quiet!  I have very little pain now. So much so, that I don't need anything else to manage the pain I have - it's so mild, I can ignore it.
 
Not sure it will work for everyone, but it's been a life saver for me! Makes me really dizzy 3 hours after I take it, so I take it in the evening when I'm home.  I get a really good sleep too.
 
My Fibro is really bad in my neck, shoulders, lower back and feet. I understand completely how horrible that pain is.  Especially in the neck and back.  OY!!! 
 
Talk to your rheumy about this option. I'm very happy with the results!
 
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 2/2/2009 5:09 PM (GMT -7)   

Hi Ginny - and anyone else who also has fibro.  How do you know which issue is causing your pain and fatigue?  I've been on Plaquenil for 2 mos. now and feel it is having somewhat a good effect on the fatigue in general, though I'm nowhere near feeling "normal" in that regard yet.  But it seems like the pain is on the increase in all those fibro areas.  I'm having a hard time deciding whether the Plaq is reallly helping.  I know the winter cold seems to aggravate things.  But while I have more energy to get out - I'm enjoying it less.....does that make any sense?  (Kinda foggy today).

I tried Neurontin in 05 - started on 100 mg and only lasted a month.  It made me more tired, achey and depressed and I started having some nasty nightmares, so I quit.  I know everybody is different, so I'm glad it's working for you.

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 2/2/2009 5:14 PM (GMT -7)   
HI Lucy,
 
That's a good question. For a long time I didn't know if the pain I was feeling was my Lupus or my Fibro. They both felt the same to me.
 
If my sed rate is normal, and all my other monthly Lupus blood tests are normal, then it's pretty likely my pain is Fibro.  If I increase my prednisone and I feel better, then it was my Lupus.  If I increase the prednsione and I feel worse, it's definitely the Fibro.  You're not on Prednisone are you?  It's one really good way to know what is causing all the symptoms.
 
I'd rely on your monthly blood work and talk to your rheumy about it.  They might have other suggestions for you.
 
Blessings,
Ginny
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


lucysgd
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Date Joined Jun 2008
Total Posts : 669
   Posted 2/2/2009 5:29 PM (GMT -7)   

Thanks, Ginny.  No, I'm not on Prednisone.  And I don't have monthly blood tests.  Unless I need to see her for something specific, my follow-ups with the rheumie are at 4-6 mos. intervals.  What do you have checked monthly? The sed rate seems to remain normal for me except when I'm in all out flare mode (fever and the works) and then it hits the roof.  So it may be the fibro is the likeliest culprit. 

Lucy


diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 2/3/2009 9:32 AM (GMT -7)   
Hi Lucy,
 
I get a CBC, urine, ESR (sed rate) done every month. 
 
If your sed rate is staying in normal ranges and you're having all this pain, it probably is Fibro.  That's how mine presents itself too.  It's too bad the Neurontin didn't work for you.  Have you ever tried Lyrica for your Fibro?
I can do anything through Jesus Christ who strengthens me. I have learned in whatever state I am in,to be content. Phillipians 4:11-13

34 years old. Diagnosed with Lupus in 2000. Fibromyalgia, Anti-phospholipid syndrome(APS)(stroke, 2002), Sjogren's, Raynaud's, Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck), anxiety. Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, Didrocal, Cozaar, Zoloft, Neurontin, calcium, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus
 
Moderator for the Lupus and Fibromyalgia forums


lucysgd
Veteran Member


Date Joined Jun 2008
Total Posts : 669
   Posted 2/3/2009 10:00 AM (GMT -7)   
Ginny - That's what I figured.  Do your urine results fluctuate frequently?  I seem to be having some troubles in that area and am wondering how often it should be monitored. (Had a bladder infection in November - no follow up after 3 days ABX).  I never tried Lyrica.  First rheumie ( who put me on Neurontin) suggested I try that next, but he said it was in the same drug family, so I didn't opt for it right away.  Second and current rheumie feels I probably wouldn't do well on it either, since it is in the same drug family.  Go figure.  I'm not much for meds - don't metabolize them very well - although I don't seem to be having any trouble with the Plaquenil.  My mom took Neurontin for nerve pain, as did a friend of mine - neither of them had any trouble on it. - Lucy

diagnoses:  mono 1972; postviral CFS 1997; fibro 1998;  UCTD (dx limbo) 2007
meds: Plaquenil 400 mg, occasional low dose xanax for sleep aid, artificial tears w/ ointment at night, Advil/aspirin prn
 
 


Serina
Regular Member


Date Joined Aug 2008
Total Posts : 431
   Posted 2/3/2009 10:39 AM (GMT -7)   
But then my feet felt like they were on fire, my back got so sore I could hardly walk, my neck seized up and I got the dizzies.
 
Hey Ginny,
 
my back gets really sore when I walk, just in the house walking makes the middle of my back hurt. some days are worse than the other days.  I get dizzy too, sometimes,  and I thought that it was just lupus.  at the moment I have a pain mid way between my shoulder blades and up to my neck.  and moving my head to the right it makes pain go up the left side of my face and head.  I need to ask about fibromyalgia and see if the Rheumy will look into that since he is so adamant about not diagnosing Lupus.  Had to put off seeing him because I went to the hospital.  Feb. 9th I will see him again, if nothing else happens.
 
I missed yall so much.  Miss talking to you.  I do not ever wish anything bad for you ever.  but it is good to know that you have the same things happening to me, that happens to all of you.  I do not have to feel so alone.
 
Hester
Lupus diagnosed 1996, Fibromyalgia diagnosed 1996, Heart by-pass 1998, breast cancer 2000, stroke2002, vascular surgery 2005, heart attack in 2007, and had a stint put in, Sjogren's Syndrome 2008, Stroke 11-4-08
 
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aspirin, multivitamin, Arthrotec , Meclazine ,  plaquinil, Metoclopomide, Doxepin , Metoprolol, synthroid,  Amlodipine, Crestor, Lasinopril, Plavix, phenagrin,  Restasis  

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