Fibromyalgia Experts Needed

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Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/13/2008 1:52 PM (GMT -7)   
Greetings!
 
The last three times I visited my rhuemy, she has been telling me she suspects I also have Fibromyalgia.  I am so worried about being a hypochondriac that I have been actually playing this down and trying to pretend this could not be true.  If this were true, what should I be aware of when dealing with Lupus, RA, and Fibromyalgia?  Any help would be greatly appreciated.
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/13/2008 4:25 PM (GMT -7)   
Hi Audrey,
 
I have Fibro.  It sucks. I have a lot of pain with fibro.  It's a tough disorder to have along with lupus.  The best thing to know is that fibro can't hurt you.  It's purely a heightened pain disorder.  Another thing to know, is if you take prednisone for your lupus, the prednisone can make the fibro worse.  Fibro and prednisone don't like each other.  Finding that balance that keeps your lupus quiet and your fibro quiet can be difficult.  I have a hard time with it.  If you're not on prednisone, halleluia!! Hehe.....
 
Having RA and fibro will likely give you additional pain issues.  If you push or poke your upper arms, thighs, chest, ribs, shoulders, does it really hurt?  Almost like a bruise feeling?  If so, that's fibromyalgia.  You'll also have more fatigue and brain fog to deal with.  Unfortunately, lupus and fibro mimick each other really well.  I sometimes have trouble knowing what is flaring.  So knowing your body and being able to tell the signs of a flare early, will help you stay well.
 
I take 20mg of Amitriptyline to help me sleep.  Sleep is an issue with fibro as well.  If you're not sleeping well, it's probably the fibro.
 
Heat is very helpful in dealing with any pain.  Nice warm baths are heaven!  Fibro is a difficult disorder.  I'm battling it really hard right now.  It's in my feet.  I can hardly walk the pain is so bad.  This is a new place for my fibro to attack.  I'm not very happy....  So keep in close contact with your rheumy.  there is another medication called Lyrica that is supposed to be helpful for many people.  I haven't tried it, but with this foot pain I have, I might!
 
Just know that fibro can not hurt you.  It can make you mental confused trying to manage the pain and other symptoms, but it can't damage any organs or anything. I hope this helps Audrey.  I'm always here if you have questions okay.  (((gentle hugs)))
 
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


mom46
Veteran Member


Date Joined Dec 2004
Total Posts : 8198
   Posted 7/13/2008 5:39 PM (GMT -7)   
Hi Audrey,
   I'm sorry you are having to deal with this too...((Hugs)). Ginny gave you great info on fibro and I agree with her. Mine mainly gives me problems in the winter and when I'm on 30mgs or higher of pred.
   Long soaks in warm water and sleeping with an electric blanket helps me alot. I also take zanaflex and trazodone to help me sleep.
   I hope this gets better for you soon. Please take care. You will be in my thoughts and prayers.
                                                        Babs
 
Dx: Lupus,RLS,RA,Asthma,Fibro,Sjogren's,Raynaud's,Divertic, Stroke,Atherosclerosis,Seizures,Neuropathy,CAD
Meds:arava,prednisone,plavix,aspirin,protonix,,zanaflex,xanax,
mirapex,advair,foxamax,Vytorin,folicacid,lunesta,Tramadol
 
JOB 5:18 For he wounds, but he also binds up; he injures, but his hands also heal.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/14/2008 12:52 AM (GMT -7)   
Thanks so much Ginny and Babs! Your information is VERY helpful. I can certainly see where the "heightened pain" comes into play for me. I feel it in my hands, arms, and fingertips right now. I do take 6-7 mg of prednisone but I am trying to taper down - without much success, though. I have been dealing with pain in my feet, too, for almost a year now. The soles of my feet, to be specific. Does this sound right? I absolutely love the releif that warmth provides. Maybe that is why I won't sleep without my heated mattress pad. I also cannot handle driving without heated seats - I feel like such a baby (a very spoiled baby) about this. Warm baths and the hot tub are heaven!

I currently take a very strong pain reliever (due to my frequent kidney stones), methadone, and this helps me very much. If I try to go without it, I end up constricting all my muscles and walk kind of hunchbacked. I also get very impatient and rather grumpy if I cannot get to a comfortable position (like laying out in a lounge chair or in bed with pillows propped) due to normal life situations like standing in line at the grocery or if someone stops me to ask a question. It is very weird and annoying to say the least. If I am having kidney stone problems, it doesn't bother me to take the pain medicine. about ten years ago, I took amitryptilene for pain management and I slept really well but I was tired all the time at work because I could not sleep long enough.

Thanks for your help and words of encouragement. I know that I will be fine. My rhuemy is great and she mentioned Lyrica the last two times I visited her. Who knows, I might add yet another script to my medicine plan. Yikes, do you ever feel like you could almost be a pharmicist? Or a drug store?
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 7/14/2008 7:18 AM (GMT -7)   
OH yes!  I have a well stocked pharmacy in my closet.  It's a rather large tupperware container. If anyone questions the severity of my illnesses, I just show them my box of drugs.  Hehehe.....
 
The pain is in the soles of my feet too Audrey. I've never had this before.  It started in mid May and hasn't let up.  I was on 15-20mg of prednisone for a couple of lupus flares during these times and WOWZA!!!  It was hell to put it mildly.  Now I"m down to 8.5mg.  The pain is tolerable, but still there.  Tapering lower than 7mg is almost impossible for me.  My adrenal glands are insufficient so I need the little extra "fake" stuff.  I often get in that hunched back position too.  The fibro affects my lower back quite a bit.  Hard to straighten up.
 
I'd give that lyrica a try.  Nothing to lose and everything to gain, right!  I might be trying it too.
 
Have a good day Audrey!
 
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),Sjogren's, Raynaud's, seizure disorder-(miraclulously disappeared!), Libman Sach's Endocarditis, vasculitis, sacroiliitis, arthritis (neck) . Prednisone, Imuran, Coumadin, Clobazam, Amitriptyline, didrocal, Cozaar, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 7/14/2008 11:55 AM (GMT -7)   

Hi Audrey

 

Yes Ginny, gave you great info. It has been over 12 years since I was told I had Fibro. I have got over a year with every day, every day feeling like a Semi had run over me. I hated taking something for pain so I wouldn’t do it all the time but did start with the amitriptyline and it was a God send. It may have been about 6 weeks but I still remember the first day when I realized that I wasn’t in pain. I know when I don’t get my sleep that the pain will come back. 

 

Take care Oldhippyrebel yeah


Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/14/2008 6:49 PM (GMT -7)   
I am starting to think very seriously about the Lyrica, Babs! I see my rhuemy in five weeks, so I will see what she thinks!

Greetings Oldhippyrebel! You are so right! We really need our sleep. when I try to sneak in a late night, well, I really end up paying the pain fee!

Sleep well, all!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


Shadowfire
New Member


Date Joined Jul 2008
Total Posts : 1
   Posted 7/14/2008 7:00 PM (GMT -7)   

Hi.  I also have fibro.  It's not easy dealing with Fibro and lupus.  I have a lot of joint pain and muscle pain and most days the energy level isn't there.  I have learned to take one day at a time and try not to plan too much ahead of time ( as we don't know how we are going to feel later).  The best thing that has worked for me is Walking in a pool that is 100 degrees and then hitting the hot tubs afterwards.  The hard part is dragging myself to the pool.  I tried Lyrica.  It works for some people but didn't work for me.  I thought it helped at first as I did see a raise in my energy level.  However, after a while it just stopped working.  I gained 35 lbs for it.  One of the side effects of Lyrica is weight gain.  I hope you find something that works for you!  I'm always reading these threads and find it extremely helpful!


Audrey Ann
Veteran Member


Date Joined Jul 2005
Total Posts : 815
   Posted 7/14/2008 7:42 PM (GMT -7)   
Oh, great, I dion't need another drup to cause more weight gain. Prednisone and inability to move as much as I used to has caused about a 35 lb. weight gain already! Yikes! Thanks for the warning Shadowfire!

I see you are new! Welcome to the HW Family. I certainly can relate to conserving my energy and taking one day at a time. My energy levels are pathetic. I was such a high energy person, rather hyper, actually. Oh well, God sure sent the slow down message! Please tell us more about yourself. Do you just have lupus and fibro? What other meds do you take or have you taken? Maybe we can offer you some help or you can add to our frame of reference! Thanks so much for offering your help and advice - you sound like a neat person! Everyone will notice you more readily if you start a new post (just click "New Topic" at the top right hand corner) and title it something like "New to Site", or, even something more creative - I am REALLY tired tonight and cannot think creatively this late - lol.

My thoughts and prayers are with you!
Prayers,
Audrey Ann
 
Lupus, RA, and (Maybe) Fibromyalgia and LOTS of Medications!
 


 


oldhippyrebel
Regular Member


Date Joined May 2008
Total Posts : 58
   Posted 7/15/2008 3:37 PM (GMT -7)   
I was on Lyrica for years but last year my insurance said I needed to change because Lyrica cost to much. I know it cost and more than likely I would have had to stop on my own because of cost but I just didn't like that the insurance could do that. The Dr. put me on Gabapentin.
Fibro since 97, Lupus since 99, neuropathy and other nerve damage.
On to many Meds to list, Finally got a date for SSA of July 1 after to many years of fighting for a hearing.

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