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How many have Lupus and Fibro ?

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Old 04-25-2006, 01:07 PM   #1
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Question How many have Lupus and Fibro ?

I can really tell the difference between Fibro and Lupus. I feel more flu like with Lupus........makes me feel JUST SICK. Everytime I'm having a really bad day, in a little while, I'll see the BUTTERFLY RASH on my face. It is not itchy or sore. When I get feeling better, the rash leaves.

I think the joint pain I'm experiencing is more Lupus-ee, than fibro-ee ! Fibro mainly hurts my muscles and make them weak from the awful pain. Joints are getting so much worse and Arthritis is setting in.

Anyone else have this ?

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Old 04-26-2006, 06:14 AM   #2
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Wink Re: How many have Lupus and Fibro ?

Hey Blessings! I completely understand what you're talking about. I have the same thing. I have that flu-like feeling and my butterfly rash comes and goes too. My fibro is really bad, my rheumy can barely lay a finger on me without the word "OUCH!" coming out my mouth. And I've had arthritis for about 2 years, very bad, pretty much everywhere it can go in my body its there, including my jaw. My new rheumy added a new med that seems to help with the fibro and it has made it easier for me to get around. I don't have it with me but its a low, low dosage muscle relaxer, and it has really helped with me along with my other meds.

I just wanted to drop you a line and let you know that you're not alone.

Old 04-26-2006, 06:23 AM   #3
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Lightbulb Re: How many have Lupus and Fibro ?

Thanks Mamieof2. I suspect your muscle relaxer is soma, flexeril, or zanaflex no ?

Those are the staple ones.

I seem to be getting sooooooooooooo much worse with age. I guess it's the arthritis. My hands are RED at every knuckle and I hurt at my joints more than in my muscles these days. It's like a triple whammie. I don't know what to tell my DOC first. Which is more important..........which makes me look like an IDIOT with sooooooooo much wrong. Going to the Doc is one of the most stressful things to me in the whole process.

I totally told the Doc last time that I was hubby said WHAT told him WHAT ? I just felt soooooooo bad that day I didn't want to be alive. Just told him anything to be done and lay my body down. Is that crazy or what. Do ya'll get like that ? If it's not a problem at that MINUTE, do you down play it ?

This was a new DOC too. Man, I could just shake myself. Now I gotta go back next week and tell him a very different story. This stuff is soooooooo wierd. I have the tendency to FORGET THE PAIN OR SYMPTOM if it's better and not want to talk about it, when it could be very important to him.

Think I will make my list this time and STICK TO IT.

Old 04-26-2006, 07:12 AM   #4
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Re: How many have Lupus and Fibro ?

I was dx with Fibro in 95 and just recently dx with Lupus. If I remember right they BOTH make me feel like I have the flu--only now I have extremely itchy skin! It seems that I have a high pain tolerance, so I put off taking painkillers for years. When I did take something, the side effects(stomach pain, retaining fluids) were nasty and long-lasting. So I recommend REST, low-sugar diet, deep-breathing exercises, and magnesium from Rice Bran, which are all good for your body and no side effects.
By the way, my best friend and I have made a pact to be very careful about which Dr we tell that we have Fibromyalgia. We both have in the past,been dismissed as hypochondriacs, and so missed out on proper treatment.
This is an interesting subject.
Hope you are feeling better soon!

Old 04-26-2006, 08:25 AM   #5
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Cool Re: How many have Lupus and Fibro ?

I also have fibro and lupus. I thought I was the only one who itched terribly with a flare. If there are more out there let me know. Lately, I have had neuropathic pain. I feel like my skin is burning and like I have a high temp but its only 99 degrees. My hands are aching also. This time of year is bad for me because I live in VA and I am extremely sun sensitive. When I tell my Dr. this, she looks at me like I have just flown in from Mars. I am so frustrated!

Old 04-26-2006, 09:41 AM   #6
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Re: How many have Lupus and Fibro ?

Hi Momsnoni,
Just a thought--have you tried Extra Virgin Olive Oil? About 2 weeks ago I started taking 2 tablespoons of it in the am. Since I am forgetful, it hasn't been everyday, but this morning (after reading your post) I remembered that it seemed to help on the days that I remembered to take it. The EVOO is recognized as heart healthy, but I believe that I read somewhere that it is an anti inflammatory also. Worth a try.
This is all so frustrating, isn't it?
Hang in there & we can all help each other get thru today.

Old 04-26-2006, 10:01 AM   #7
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Re: How many have Lupus and Fibro ?

Hello, I'm new to this site. I was diagnosed in 1994 with Antiphospholipid syndrome (connective tissue disorder) and Undifferentiated Auto Immune disorder, also Raynaud's. My rheumatologist says that my diagnosis is in the same family as Lupus. I'm generally very tired, my thermostat seems totally out of whack (I'm usually freezing), and currently my legs and wrists have been giving me fits. My doctor is wanting to try Plaquenil. Have you been on this med before? I've read about it on the web, which is probably the worst thing to do. The side effects list has frightened me! I don't want to take prednisone anymore if I can help it. I'm 4 ft. 7 and when I was pregnant with my son, I was within 25 lbs. of doubling my weight when I was on it. I also took two prednisone dosepacks before Christmas (it was my feet at Christmas time) and gained 10 lbs. then!

Just wondered about the Plaquenil......

Thanks for listening. Hope you feel better

Old 04-26-2006, 10:53 AM   #8
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Re: How many have Lupus and Fibro ?

Dear o2b5ft, Your name made me grin, after reading your post. Welcome. I've been on Plaquenil for 6 years, after being Dx'ed with the SCLE subset of lupus (negative for APS). My rheumie pre-empted my eye damage concern right away, by saying in his entire practice, they'd never seen a case. This is a sizable practice, teaching hospital affiliated, major city. I had a brief period of nightime visual halo, a few days of very mild stomach upset, then kept feeling better over the months. I have only mild flares now.

I'm sure others will chip in, too. Also, Plaquenil is discussed in many previous posts (you could use SEARCH feature to find those). Good luck with your decision. Sincerely, Vee

Old 04-26-2006, 11:37 AM   #9
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o2b5ft HB User
Re: How many have Lupus and Fibro ?

Thank you for your information. So, it has helped you quite a bit? Luckily, I have not been diagnosed with Lupus, it hasn't affected my organs, but the fatigue and pain in my body gets old. I appreciate your quick reply. I'm new to Message Boards. I had Lasik two years ago, and was also concerned about the Plaquenil for that reason too. The dr. reassured me that if I did have the vision side effect that it would go away if I stopped taking the medicine. It may be worth a try though.

Thanks again for your help. I will try using the search on Plaquenil.

Take care!

Old 04-26-2006, 01:33 PM   #10
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Post Re: How many have Lupus and Fibro ?

Dr. is wanting to give me Plaqunil also. I HATE DRUGS. I tried it a long time ago, but have taken so much I dont' remember what it did that made me stop.

I too feel like I am burning up with fever and it's only low grade, below 100.

I itch too...........I thought it was some med I was taking. MSM.....pain medications. Do you think this is a symptom and not a med reaction.

I also have ulcers in my nose from time to time, but have never gotten a postive ANA for Lupus. I have the butterfly rash, sensitivity to sun, can make me real sick.........and terrible joint pain. I think allergies are really making me worse right now too.

This is a miserable illness................and I'm soooooooooo tired after 26 plus years. I just get tired thinking of all the symptoms and what to take for it and what not to take and researching and SEEING DOCS. I'm now seeing a Doc at a university and am hoping and praying he will ship me on to the Pain Clinic....that's my goal. I'm ready.....................ready to take WHATEVER to get out of some of this suffering. They are treating with methadone, and I understand it gives you back your life with few side affects. I'm just there.............don't care anymore.

Trying to keep up with it ALL is the most frustrating thing..........first you have to be the DOC, then find a Doc, convince the Doc...........its' all quite miserable.

You can tell I'm very tired and in a LOT OF PAIN RIGHT NOW...sorry.

Old 04-28-2006, 03:42 PM   #11
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Re: How many have Lupus and Fibro ?

Blessings, I think we all can relate to your doc problems. And I know I can relate to your joint and pain problems. I also have fibro and am waiting for my doc to finally say I think we have lupus. I have the rash the itching the sun-sensitivity the antiphospholipid antibodies and at one time a positive ANA, which I know is not conclusive. Now that spring is here I will have less energy because of the sun and more problems. So I can relate and wish you well. I hope your new doc can give you some relief.


Old 04-28-2006, 04:21 PM   #12
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Re: How many have Lupus and Fibro ?

Hey everyone. I was diagnosed with a "lupus like" condition about 5 years ago and was immediately put on Plaquenil. I honestly have had no side effects and I get my eyes checked about every 6 months to make sure they are ok. And they are. My optomologist and rheumy have never seen a case of plaquenil affecting the eye - but it is precaution. Since I work for a major pharma company I understand about having to report everything even if only one person in 600 had it and maybe only for about 2 minutes - really.

Also, I recently went to a new rheumie cause I wasn't sure the plaquenil was helping anymore. I also was just diagnosed about 4 weeks ago with severe Crohn's. CRAZINESS!!! Anyway, this new rheumie solidly diagnosed me with Fibro - Chronic Fatigue and Chronic Pain. She says she does not think I had Lupus at all and i have been mistreated for years. I was so upset I didn't know what to do. I am now on Nortriptaline(sp?). Has anyone been on this?

All I know is I constantly feel like crap - I am tired - achy - nauseaus - and over all BLAHHHHHHH. Hopefully when this new drug kicks in I will feel a bit better. It is so awesome to have sites like this. We all need to help and support each other becuase it is clear that getting the right support from the medical community is hit or miss.

I wish you all well and pray we all make it through today.


Old 06-17-2006, 04:00 PM   #13
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Unhappy Re: How many have Lupus and Fibro ?


I was just checking old posts .

I have had Fibro since 91 and probable MS for 11 yrs. and they just decided in 2004 I had it for sure and put me on Copaxone and in 2005 I was DX. with Lupus Anticuagulant and connective tissue disease.I have alot of the symptoms you describe, so many days at this point I never know what pain is from what disorder.Because of the LA in my blood, (on blood thinners) I can't take anything for the pain, the meds can't be mixed.I only take Tylenol for the Fibro, not much help though.I would love to chat with anyone about these problems. I am 59 F.

Thanks for letting me share


Old 06-18-2006, 09:20 AM   #14
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Re: How many have Lupus and Fibro ?

I can relate to you. When Im feeling really bad my b-fly rash becomes vibrant. My sister in law thought I was feeling good when she saw it for the first time. She said "You look really good today, you have alot of color." I had to explain to her that when I have color in my face than youll know Im not feeling well at all and the brighter red I get the worse I feel. So when I am pale white Im doing fairly well. My fibro is a little monster that comes and goes. My poor kids! when its at its worse a fly cant even land on me without me having pain. Its really irritating.

Old 06-18-2006, 07:43 PM   #15
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sonytv HB User
Thumbs up Re: How many have Lupus and Fibro ?

Hi I just thougt I would let you know I have had fibro for the past 10
years now and I always felt like I had the flu. I just found out I have
Lupus and let me tell you all the sun is my Enemy and yes my skin
is sooooooo Itchy that I am off the walls and I wish that
my skin didnt feel like it was on fire either I think my husband thinks I am
nuts when I said the ice melts as soon as I put it on my skin like you cant
not even count to 3 before its water. well hope you fell better.

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