The diagnosis is in! I can't believe what it is.....

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Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/28/2008 7:47 PM (GMT -7)   
Okay ya'll,
 
The bone scan came back perfectly normal...... When my rheumy said that I wanted to cry, and hit something at the same time.
 
All my blood tests for inflammation, and a bunch of other crap came back normal too..... At least we know it's NOT my lupus.  It's very quiet apparently.  So that's good.....
 
What isn't quiet is my FIBRO!!!!  I'm in a massive fibro flare up.  What I thought was joint pain, is actually the muscles and soft tissue that are surrounding each joint.  It's next to impossible to tell the difference between joint and acute muscle pain.
 
I have never experienced a fibro flare up like this, ever.  This beast has 10 heads, with fangs, and spits molten lava. devil Now I know what the gals in the fibro forum are talking about.... The last 7 years I've had fibro that is mild and really never gave me any issues.  Only if I was poked or bumped into something is when I'd feel the pain. This is severe. So much so, that my rheumy wants me to taper down as low as possible on the prednisone to help the fibro not be so bad.  I still have to make sure my lupus then doesn't flare up. BAH!  The gong show continues.
 
I do have issues with my feet that are unknown.  The pain could be partly fibro, but she thinks there's more to it.  The bone scan didn't pick up on anything which leads her to believe it's a ligament/tendon thing.  I see a foot specialist on September 9. 
 
She prescribed Tramadol for me to take for the pain.  As needed only.  I don't want to become addicted.  It's working great tonight!  I have some relief, finally.
 
That's all we can do.  Isn't all this wonderful?!  Actually, I'm so grateful that it didn't turn out to be RA or something even worse..... What a blessing.  Fibro can't hurt me, so I'm in a winning situation!
 
That's the update.  Not as exciting or compelling as I thought it would be.  But I'm okay and it's just my stupid fibro! smhair  
 
 
 
 
 
 
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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/28/2008 7:55 PM (GMT -7)   
eyes *sighhhhhhh*

((((((((((( Ginny )))))))))))))

I'm sorry for you and grateful at the same time. rolleyes I hope this flare goes back where it came from FAST!!

So sorry Ginny!

Does exercise help or hinder fibro??? I hope you get lots of help and encouragement from the fibro forum.

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)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/28/2008 8:22 PM (GMT -7)   
Hi Rosie!
 
Yes, a big SIGH.... I'm relieved it isn't something more serious, but frustrated because Fibro is such a "piece of work" to manage.
 
Exercise helps a lot.  My problem is finding an exercise that doesn't hurt!!  My feet are the issue.  I still can't walk very well, the pain is so bad.  I tried swimming, but the resistance aggravated my lower back something fierce, and pushing off the bottom of the pool killed my feet! 
 
We brought my mountain bike inside and set it up on a special stand.  Now I can cycle in front of the t.v. and out of the sun!  Again, I have issues with pain when I sit on my poofy, gell filled massive seat!! I still have horrible pain sitting on it. I'm going to try and rig up one of my pillows to sit on.  Something!! If anyone has ideas for a super soft seat, please chime in!!!  idea
 
Thanks Rosie for your encouragement.  It's so appreciated!  ((((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


AlwaysRosie
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Date Joined Jan 2005
Total Posts : 8616
   Posted 8/28/2008 8:55 PM (GMT -7)   
Those FEET!! I had huge issues with my feet for years!! OUCH!! and keeps you so tired.

I had best relief from wearing very supportive trail trecking shoes. Clunky but allowed me to function a little.

I hope this ends FAST for you!!

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)

Clickable Links:  Lupus Resources    Lupous.Org   Lupus Criteria (4 of 11)   Lupus Chapter Locator


cured4real?
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Date Joined Dec 2005
Total Posts : 1944
   Posted 8/28/2008 10:39 PM (GMT -7)   
Hi Ginny. I think tramadol is non-addicting, at least physically. I have been off and on for years and years. I just quit after over five years on it with no problem and I take six a day normally. I had to switch to vicodin while I'm on my anti TB meds because my liver wasn't tolerating both the isoniazid for TB and the tramadol and I started getting allergy and liver problems. Anyway, you should check with your doc, but it is not like a controlled substance like vicodin, it is controlled, but not that highly, you can get multiple refills and stuff and though it works like an opiate like a morphine, it lacks the addiction and the breathing problems opiates can cause. Its a great mediicne for many types of pain. I think it's one of the best created. I'm glad it is working for you and you should double check with your pharmacist and doc about addiction, but I think since I just went off no problem at all, and have before and from my understanding it is not addicting, you should check and ease your mind on this.

I did find that keeping it in my system, not taking days off but staying on it, helped it work better for me, but I take it for some pretty bad neck pain from past surgeries and problems. Glad you are feeling better. Tramadol I think is better than antidepressants. it lets you stay you.
Take care.
Love, Marji
--Sometimes I think the surest sign that intelligent life exists elsewhere in the universe is that none of it has tried to contact us. Bill Watterson (1958-) cartoonist "Calvin and Hobbes"
Ills--Sjogrens-Lupus-like AI Disease, Hashis, Vitiligo, spinal stenosis/fusion with plate, salivary/lymphectomies, Diabetes, NAFLD, COPD, RLS, neuropathy, trigonitis, hystero, diffuse brain atrophy, GI nightmare
Meds--Plaquenil, Evoxac, Metformin, Synthroid, HCTZ, Estradiol patch, Prosed, Detrol, Klonopin, Ultram, Vicodin, Restasis, Albuterol, steroid injections and pred prn


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/29/2008 7:52 AM (GMT -7)   
Hi Rosie, and Marji,
 
Yes, good shoes make all the difference. I have a pair of Ecco sandals that are heaven on the feet. I wear them in the house too. But with the cooler weather about to move in, I need some good all weather footwear.  I think I better get on this soon because next week the temps are going down to about 50 degrees.  Not good sandal weather!!
 
Marji, thank you for telling me about your experience with Tramadol. My rheumy did tell me it can be mildly addictive if overused. But she reassured me, like you did, that it's not something I need to worry about.  The one pill I took last night was delightful, LOL!!  I felt so much better. I haven't taken one yet today, but my neck is screaming at me and I have a nasty headache, so I think I'll pop one.  I want to only take 2 a day.  I definitely can't drive after taking one. I was way too dopey and a bit off balance last night.
 
Does the sleepiness and dizziness go away once the body is used to the drug? 
 
Thanks again for the support gals! 
 
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


PattyLatty
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Date Joined Mar 2006
Total Posts : 2570
   Posted 8/29/2008 7:54 AM (GMT -7)   
Ginny,

Well, all I can say is Yay for answers! You must really be in a major flare and I'm happy the tramadol is working for you. My PCP won't give me any narcotics for fear of addiction, but she'll give me all the tramadol I want. Like Marji, I'm told that it's not addictive. I've started taking Ultram, which is a slow release Tramadol that lasts for 24 hours. I love to wake up under it's effects and not to have to wait the 30 minutes for something to kick in. While you're in the especially bad flare, you might check into that.

I've often wondered how many of my flares were lupus or fibro or a combination of the two. I don't know what brings on a fibro flare because I've never done any research on it. Maybe we should both pop over to the fibro forum and learn more about it.

I have the same feet and exercise problems you do and have discovered the the best exercise for me is water aerobics. I'm also getting ready to start physical therapy again. I believe that doctors do not prescribe that as often as they should. A good physical therapist is the perfect person to help you with the best kind of seat for your bike. Ask you doctor for a script to see one. I can't believe they would turn you down. The last time I saw one I went for a couple of months and he helped teach me what excercises to do on my own. It can't possibly hurt and I think you'll be surprised at how much you can gain from just a few appointments with a good one.

I'm glad your scare is over and that you got some answers Ginny. I find that pain plus fear equals much worse pain, but if I understand what's going on I can somehow manage the pain a little better, even if it hurts like you know what. Maybe I'll run into you over in the fibro forum.

Pat
Lupus, osteoarthritis, fibro, renauds, restless leg, hiatal hernia, double vision, migraines, costocondritis.
cellcept, neurontin, prednisone, plaquenil, synthroid, triamterene, tramadol, actonel, tri-est, imitrex, cymbalta, tricor, acifex, multivitamin, calcium w vit D, fish oil, aspirin


Ginny
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Date Joined Feb 2003
Total Posts : 5514
   Posted 8/29/2008 8:15 AM (GMT -7)   
Hi Patty,
 
Thank you for your encouraging post!  I was wrong about the name of the pain med I'm on.  It's Tramacet, not Tramadol.  I told my rheumy I didn't want any narcotics.  So she said the Tramacet was an analgesic, less addictive and safer.  I also don't think she prescribed the Tramadol due to the fact that I used to have seizures and I'm currently still taking (but tapering off) a benzodiazapine (tranquilizer) as my anti seizure med.  Tramadol doesn't mix well with other narcotics I guess! 
 
I've tried the water aerobics. Pushing off the pool floor kills my feet, and my lower back is so bad that even water resistance has me wincing in pain.  It's brutal.  The pool is also not close to where I live.  I'm all about proximity!!! Hahaha.... So I'll keep trying the bike.  I just need a really squooshy seat for it.
 
I know. I have had trouble these past 8 months or so trying to distinguish what was lupus and what was fibro.  I'm pretty certain now that it was always a fibro flare.  It's hard figuring it out isn't it.
 
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


Barbara Lee
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Date Joined Sep 2003
Total Posts : 2889
   Posted 8/29/2008 11:20 AM (GMT -7)   
Hi Ginny:

Oh sweetie I'm so sorry to hear that you're having such a terrible fibro flare. I like you have fibro in addition to my lupus/RA/MDS. I have a serious time trying to figure out which one of my illness is causing me pain. I've recently tried to explain this to my rheumy and he so totally blew me off, I seriously felt like slapping him. Anyway, do you have any of the creams or lotions that you can rub on a sore area. My personal favorite is Tiger Balm, it tends to work well for me. If you'd like to try some and aren't able to get your hands on some, I'd be more than happy to send you some. It may help you in the areas around the joints.

I don't have any suggestions about how to make your seat more comfy, but I do have a suggestion about the water in case you change your mind about going to the pool. I own an aqua belt, which allows me to do water aerobics in deep water, my feet never touch the bottom of the pool. It's also very helpful if you want to run laps in the water. Just get yourself in a lane in the pool, have your belt on and you can jog in the pool for as long as you can manage. Again, if you should be interested in trying this, I'll be more than happy to either email you the website or I'd be happy to send you an aqua belt, as a gift from me to you sweetie.

I have serious issues with my feet, have had my feet hurt so bad I could barely walk. I know how miserable pain in our feet can be. I've found that rubbing tiger balm in to the arch of my foot helps a lot. I also use a tennis ball and rub it in the arch of the foot. Ginny I feel so bad for you honey, if there is anything at all that I can do you, please don't hesitate to contact me, I'll be more than happy to help you out.

I hope that your medication continues to help you and you begin feeling much much better. Hang in there Ginny, you'll be in my prayers.

Soft hugs,
Barbara
dx fibro, SLE, glaucoma, cateracts, bells palsy, depression, migraine headaches, gastreopaersis, chronic anemia, RA,MDS (Blood Cancer). Tons of meds.


SSDore9240
Regular Member


Date Joined Aug 2008
Total Posts : 56
   Posted 8/29/2008 12:11 PM (GMT -7)   
Ginny,

Ive been there...It stinks but your right...FM isnt causing major damage! Keep that attitude, even when its bad! Im glad the tramadol is working for you, I didnt seem to get much relief w it. Good for you! Ive found that stretching, especially when painful is helpful.

Stephanie
31 year old mom of 1: SLE, UCTD, FM, Arthritis, Reynalds(?), Migraines, Alopecia, Neuropothy(L:Hand & Foot), Int. Bells Palsey, Costrocondritis(?), a bunch of other stuff I don't remember right now and even more labwork I dont understand! Patient at Johns Hopkins in Baltimore, MD.
 Plaquinil, Trazodone, Lidoderm, Percocet for now...I hate taking the meds!  Refusing any more Prednisone!


Ginny
Veteran Member


Date Joined Feb 2003
Total Posts : 5514
   Posted 8/29/2008 5:10 PM (GMT -7)   
Thank you Barbara ((((hugs)))), you're always such a warm and encouraging soul!  I appreciate the idea of the Tiger Balm!! I never thought of that.  I was putting steroid cream on my back (very powerful stuff), but now that I know it's not inflammatory, I've stopped using it.  I was actually making the pain worse by using it because Fibro isn't inflammatory and hates steroids!!  BAH!  But the Tiger Balm is a great idea!!!  I can get some at the drugstore.  Thanks for offering to send me some though!  The foot thing is literally driving me insane. 
 
Stephanie, thanks for the encouragement!  I'm doing my best to stay positive.  Today is a good day. I feel strong, determined and so relieved this isn't more serious!  I agree. Stretching is great.  I did a good stretch after my workout this morning. Felt great.
 
 
 
 
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, Tramacet, calcium, Cykolokapron, multi-vitamin, vitamin D, Magnesium, vitamin B6, Acidophilus


hippimom2
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Date Joined Jul 2005
Total Posts : 5403
   Posted 8/29/2008 5:39 PM (GMT -7)   
Ginny, I'm sorry you have gone through such a rough spell and for such a long time. The pain is awful either way, but like you said, at least fibro won't harm you (although I'm sure it feels like it does). I'm glad the tramacet is working well for you. If I were you, I'd take it as you need it - there's no reason to be in severe pain if you have something that will give you some relief. I haven't taken tramacet, but I take tramadol and I used to get that dizzy, floating feeling at first too, but my body got used to it after a while and that stopped.

I hope this flare ends for you soon. You are definitely due for some relief. Take care
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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MJLD
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Date Joined Jul 2007
Total Posts : 1048
   Posted 8/29/2008 5:55 PM (GMT -7)   
((((((((((ginny)))))))))))))) I'm am so thankful you didn't add RA to your already too long list! I'm sorry you are suffering! Love ya, Judy
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